Advocacy After Brain Injury

I have received questions about what advocacy looks like for loved ones and for those suffering from the effects of traumatic brain injury (TBI). This is incredibly important, as I’ve learned, following TBI. My needs increased and I needed help in ways I couldn’t possibly imagine. I struggled with communicating these needs to my loved ones, typically out of a feeling of guilt or shame. Accepting help can be hard. The goal of this blog is to help other TBI sufferers come up with strategies for better self-advocacy and to also help enlighten the loved ones of those suffering this seemingly invisible injury to better understand and also provide strategies to advocate for them in their respective recoveries.

It’s difficult when you’ve gone from being fully independent to being dependent on others. It can be so exceptionally draining to explain why you may need help with something when you appear to be “fine.” I’ve learned this is so important, because the misunderstanding that already exists will only continue if you aren’t honest about your experience. It’s hard when these needs may not be visible to the eye. It’s interesting because I experienced so much more understanding, empathy, concern and compassion after my shoulder surgery when I was in a sling or after my pneumothorax when I had a chest tube in place. Without physical or visual evidence of pain or suffering, many people cannot understand or react with that same empathy and compassion. This is one of the most difficult aspects of this recovery. This can lead to the destruction of self-advocacy, among many other things.

One of the most important things I’ve learned is that communication is often the most important part of self-advocacy. Many TBI patients, such as myself, had felt like they had lost their voice in the process. This stems from misunderstanding, judgment, misperceptions and dismissal.

I was at an appointment last year at the concussion “specialist,” and was explaining to the doctor the many things wrong with the procedure and management of TBI recovery at the concussion center. The doctor’s response to me was, “Keep speaking up. You need to be an advocate for the other patients here.” I didn’t think too much of it in the moment but then it hit me later. While I do want to be an advocate for other patients suffering similarly, isn’t that the doctor’s job to advocate for his or her patient?

This process and any chronic disease process is exhausting, painful and draining. The experiences I endured with many providers in this three-and-a-half-year stretch of time did leave me feeling helpless, hopeless and like I was alone, fending for myself. You begin to go into self-preservation mode and lose your ability to fight for what you deserve, for what is right, for proper care. You essentially lose your voice because at times it feels like no one is truly hearing you.

Thankfully, I have knowledge in the medical field. This may not be the case for many patients who have sustained TBI. I’ve had conversations with close friends about how this has helped me tremendously throughout my recovery. It has led me to opportunities for treatment, to question and research what else is out there for me rather than accepting what was given to me and accepting there was nothing else for me out there to try. This is an edge I have had that unfortunately, many do not. If you or your loved one have been told there’s nothing else to try, there is always something and someone else to see.

Communication is absolutely essential during TBI recovery. There had been times where I neglected my own needs to keep plans I made with family and friends. And there were times I pushed myself too far just to “fit in” with humans as I felt like I had lost my humanness at the impact of injury which led to major setbacks. There was guilt in that. Questions come into your mind of how you will be perceived if you speak up about how a simple task is strenuous and difficult for you or that it wrecked you for a week straight. The bottom line is, most would have understood if I were honest about why I couldn’t keep those plans or make them. I say most because there are still many who do not understand, even those close to you who you explain your experience to repeatedly.

This has unfortunately happened during my recovery and seems to be quite common for many others. It seems to hurt more when those who don’t understand are close to you. This requires energy that TBI patients don’t have left in their reserves to persistently attempt to describe and explain the experience over and over again to be met with skepticism. You start to question how others perceive you and it produces stress, anxiety and the feeling again like maybe it really isn’t worth it to speak up. It adds to the feeling of isolation. At the end of the day, communication is always worth it, though not easy. When you feel like you have lost your voice, that is when you lean on someone close to you who does understand and lifts you up.

If you are a loved one of a TBI sufferer, there are many ways in which you can help advocate for them. It can be as simple as offering a ride to an appointment, to cook a meal, to go into an appointment with them, stepping up for them when they are too reluctant or anxious to speak up. I have learned many important lessons on advocacy throughout this grueling recovery, and much I am still learning and working on. I am still trying to gain my voice back and it is uncomfortable! I deeply hope this will be helpful for TBI sufferers and will offer more understanding for those caring for them.

1. Self-advocacy is putting your health first. This involves saying no. Turning down plans or opting out of events is not selfish and something many TBI sufferers feel guilty or bad about. And trust me, if you are upset they are backing out, they are more likely than not to be more upset than you because there is such a deep desire to get back to some sort of normalcy.

2. You can gain knowledge for your loved one suffering from TBI by listening to podcasts, reading articles or books, reaching out to others for treatment leads. Showing them you want to understand better may be the most supportive and meaningful thing you can do. My most helpful treatments thus far have all been found on my own through research and podcasts except for one suggested by family.

3. Have someone go to appointments with you and have them take notes. You could also ask the doctor if it’s okay if you record the visit. Memory and attention is often affected and the patient may not remember a lot of what was said in the appointment leading to confusion, stress and anxiety later.

4. Write down questions before appointments and take them with you. Something that has been helpful for me is making a list of questions and concerns in my notepad that need to be addressed.

5. Always ask questions at appointments. How might this new treatment affect me? What are the side effects? How could this help me? Could this result in a setback? Many people may be willing to go head first into a treatment out of desperation only to experience worsening symptoms or a huge setback. This happened to me numerous times. Pause and research before proceeding with a new intervention. This may be difficult to do for a TBI sufferer which leads to the next point.

6. Have someone at appointments to speak up and advocate for you. Seeing many dismissive providers led me to lose my voice. I stopped speaking up for myself at appointments. This is a common experience for TBI sufferers. If this becomes difficult for you, ask someone to come to the appointment who feels confident they can advocate and speak up for you.

7. I presented many different treatment options which my concussion specialist either shut down immediately or wasn’t willing to listen to. This close-minded reaction deferred me from pursuing them. When I finally did pursue them on my own, they helped me. If you found a potential intervention and have a good feeling about it, go after it.

8. It is your right to decline treatments that you do not feel comfortable with. This does not mean you do not want to get better. I have unfortunately experienced many providers who viewed me this way when I decided to start declining the 20+ different pharmaceutical medications attempted that worsened my symptoms and wrecked my system further.

9. Ask for help planning and organizing medical bills and other expenses. It may come to a point where managing finances is too stressful for you to handle on your own. Asking someone to take over can reduce this one stressful burden of the recovery.

10. Many TBI patients have limited driving ability or are unable to drive. Offering rides can ease some of the stress burden for the TBI sufferer. A big thank you from the bottom of my heart to all of my drivers – you know who you are!

11. If attending a TBI support group, offer to go with your loved one for support in the process. I found that having someone with me at a support group was comforting and helpful.

12. Self-advocacy means being kind to yourself. This looks like slowing down, speaking up and listening to what your body needs. I started competing with myself in order to get better faster only to lead to setbacks and the prolongation of my recovery. This is a common experience I have learned from others I have connected with. Being kind to myself is a lesson that I have learned and re-learned throughout this recovery and is of critical importance to healing.

Brainwear: A Game-Changer for Persistent Concussion Symptoms?

There has been quiet in writing the past few months, though my recovery has been far from quiet. The reserves I was running on ran out, giving me a new meaning to the words “burn out.” I was thinking about the various times I experienced burn out while working many long shifts in the emergency department and none of those times even remotely compared to this. Let’s just say the ebb and flow of this journey to healing has been a test of limits.

Since I last wrote, I traveled to the Mind Eye Institute in Chicago to see world-renowned optometrist and neuroscientist, Dr. Zelinsky. I am grateful to have had my sister there with me. We had some very funny and painful experiences. Laughter really is wonderful medicine. I love you, Quinn!

The trip was a quick 24-hour turnaround, though it felt like months. The day of the appointment was long and grueling. We walked from our hotel about a mile to the practice. We arrived early, beating the whole staff there and anxiously waited on a stoop outside. I sat there with many nerves and thought about how important this day would possibly become. My heart started pounding as we made our way to enter the office for the first time.

The appointment started with testing performed by a vision therapist, fatiguing me almost instantly. Challenging, painful, frustrating, exhausting, are just a few words to describe it. There were many breaks taken in pure darkness in an attempt to calm my nervous system. This initial testing lasted about two hours. We were then taken to another examination room where we waited to see Dr. Zelinsky. She walked into the room and meant pure business. We got to work, with even more testing. This is where it became quite mind blowing.

Dr. Zelinsky first showed me an object, a die attached to the end of a stick, and advised me to then close my eyes and reach my finger out and touch it. I was able to do that fairly well but then we moved onto Dr. Zelinsky’s patented Z-Bell test, which is used to assess and demonstrate the eye-ear connection or how visual processing is integrated with listening. The Z-Bell test is now used around the globe and recognized by scientists and eye experts. Adding the hearing component in addition to the visual component threw me for a spin. During my recovery, I have had my vision and hearing assessed separately and independent of each other countless times. This is the first time hearing and eyesight were fully assessed together to see if they were integrated and working together properly.

A person can have sharp hearing and 20/20 central eyesight, but if the senses are not integrated and the brain is impaired, then the entire neurological system becomes like an orchestra without a conductor. Each musician may be quite talented with his/her learned instrument, but they must play in sync. If they are moving through the composition at different speeds, the result is noise – not music.
Mind Eye Institute

From this test, Dr. Zelinsky was able to identify underlying issues within the circuitry of my brain and quickly showed how we could make it better. The Z-Bell test was very challenging for me and I had started to wonder if anyone could perform it with ease and accuracy. So, Dr. Zelinsky demonstrated the test on my sister who did perform it accurately and with ease. I was amazed to see this in comparison to my personal performance.

With my eyes closed, Dr. Zelinsky rang a small bell in front of me in space. The bell added the hearing component to the testing. I was instructed to reach my finger out and touch the bell where I perceived it to be in space. I tried over and over to touch the bell, though kept missing by a large margin. My sister demonstrated what I looked like, which sort of resembled the arm movements of a zombie, seemingly aimless and random. With my arms flopping in space, I thought, alright you’ll be able to identify where the bell is at the next time and hit it. But this mind over matter mentality did not prove to be the case as I have learned repeatedly throughout this recovery.

The test continued as Dr. Zelinsky put various lenses and filters over my shut eyes, ringing the bell with each lens. How could these lenses have any effect with my eyes closed and allow me to locate the bell? We cycled through various lenses and filters, attempting to find the right combination. Yellow…no change. Blue…no change. Green…there we go! I almost immediately hit the bell with my finger – a direct hit.

It was a moment I won’t forget because I won’t forget the feeling associated with it. It was that whole body electrifying shiver you feel when something amazing happens, when you experience an overwhelming amount of joy, when you score that game-winning goal or when your team wins a championship.

When the right combination of lenses and filters were discovered, altering the way the light reached and dispersed across the retina, I was able to reach out with my eyes closed and touch the bell ringing in the space before me. This was and is so fascinating to me – that changes in light that penetrate closed eyelids can impact an individual’s movement, balance, attention to sound and spatial awareness. And fascinating that just by adding the sound component to the test with the bell produced such a profound difficulty.

In that moment, I opened my eyes, looked at my sister and we both said, “That is magical!” Dr. Zelinsky quickly responded, “It’s not magical; it’s mathemagical!” And that it is. There is so much science put into this technology and over two decades of research. I am very appreciative of her efforts and drive to continue this research stemming way back to the ‘90s when she was looked at as crazy by some doctors she presented this technology to. These were the same doctors who said the eyes and the ears are not connected. Where would we be without pioneers like this who persisted even though it was against the grain?

The eyes are a crucial gateway to the brain, and the retina itself consists of brain tissue. The very simplified science behind the Brainwear (eyeglasses) involves manipulating and altering the way in which light hits the photoreceptors within the retina, leading to changes in the brain’s interpretation and reaction to the environment. By stimulating peripheral areas of the retina, specific pathways in the brain are stimulated. The end goal is new and improved pathways in the brain and a synchronized internal and external environment.

Based on this testing, specialized eyeglasses (Brainwear) were made using just the right combination of lenses and filters. It has been about three weeks since I started transitioning into my new Brainwear. When we think of glasses, we think of how they will magnify words or clear long-distance vision and fine tune central vision. These glasses are not designed to do that. They will not make eyesight any clearer. They are intended to integrate the communication between the eyes and the ears, to balance central and peripheral eyesight, visual processing and positively impact whole body chemistry.

It’s a ‘new age’ in eye testing. The eyeglass prescriptions developed through the Z-Bell Test have been called nothing short of ‘amazing,’ even ‘miraculous’ by patients, because they have brought relief for a range of symptoms, including headaches, dizziness, difficulty reading, learning and behavioral problems, attention deficit disorders, and anxiety. Many patients now being treated successfully suffered for years with the effects of eye-ear imbalances, brain injuries and other neurological issues, because they were told by different health professionals that their eyesight and hearing tested as normal. Unlike 20th century eyeglasses that merely correct central eyesight, Z-Bell-prescribed glasses are therapeutic, intended to bring a person’s inside and outside environments back into synchronization. The common refrain of patients wearing the Z-Bell-prescribed glasses is: ‘I feel like myself again. I feel normal.’
Mind Eye Institute

I didn’t realize that transitioning into these glasses could be so challenging. When I first opened the box containing my new glasses, I was excited to put them on. Only when I put them on, did I immediately feel off and funny. I developed a severe headache and eye pain instantly with associated nausea and the feeling of being out of sorts and off balance. As of today, I can only tolerate wearing them for about twenty seconds, five times a day with my eyes closed. Wearing them with my eyes closed is way more tolerable than with them open but still doing the trick, which is so fascinating to me.

In November, I will return to Chicago for another evaluation and adjustment of the lenses and treatment protocol. The existing lenses may need to be adjusted for new lenses at each visit depending on my progress. Until then, I continue my transition into my glasses and hope to add one second each day! The first four weeks are expected to be the most difficult with a significant amount of agony and discomfort.

This was yet another humbling experience to say the least and one that will hopefully be another tool to get me my life back. I now have two pivotal, brilliant doctors in my corner and I feel blessed to have both Dr. Donaldson and Dr. Zelinsky working hard to piece back together my broken brain.

I have many research articles on the science behind Brainwear stacked up and I very slowly plan on getting through them and will describe the science fully in a future blog post. Will Brainwear be a game-changer for my recovery? Stay tuned. I can’t wait to find out!

A Powerful Tool to Stay Afloat When Pulled Under the Waves of Brain Injury Recovery

This journey would not be possible without the support of all of you reading this – my friends, family and strangers alike. I didn’t think my very big family could get any bigger, but it has! This is a community I cherish deeply. I wanted to take a moment to reflect on this. This is for you – a reminder of just how grateful I am for you.

While I wasn’t able to post last week and my next blog post was a different plan, it could not be fulfilled due to physical restrictions. What transpired over the past week led me to write these words here. Experiencing a long stretch of bad days recently, it always helps to focus on what I am grateful for. Gratitude is one of the most powerful tools of brain injury recovery. I’ve written a lot during this recovery as it is cathartic and helps me release some of the keepings in the mosh pit that is my brain.

Not only is it cathartic to write, it has also helped me to maintain focus on my ultimate goal of healing and achieving some sort of normalcy. Starting this blog and sharing the most intimate thoughts and details of my recovery publicly was terrifying and still is at times, but this was one of the best decisions as I had felt like I was doing this alone. This was despite having an amazing support system already because I wasn’t being fully transparent and open about all that I was experiencing.

Since starting this blog, I have received such positive feedback from many people. I have also been able to connect with many others on similar journeys, thanking me for sharing my story as I have helped them feel less alone, helped them receive proper care, and even helped some understand their loved one’s brain injury better. Aside from my writing being my own personal commitment that I will continue fighting until I reach healing, I truly went into this thinking if I could help just one person, my mission will be accomplished. I have done just that and more. That inspires me to keep going.

Many years ago, I read about a study that showed that just by looking at images of nature (when unable to physically be in nature) was enough to lower stress levels. This led me to think that maybe by printing dozens of pictures that bring me back to a very happy and peaceful moment, that it could possibly have the same result.

Last year, I printed pictures of moments and times that transport me to a happy place when I look at them because I could feel myself being pulled into a dark direction in my recovery. I turned the pictures into an art piece which is hanging on a wall in my bedroom that I see every single day. The majority of the pictures are of and with people who I adore and am so grateful for. There are pictures of moments shared with others – a beautiful sunrise, a concert, or a day at the beach. It is helpful to see that every day and remind myself of brighter times. My connections with people, with you, are so important to me and are invaluable.

Unfortunately, in the depths of extremely painful bad days and setbacks, it was and is still so easy to fall back into a hopeless place. I felt like I needed a better strategy to use in those specific moments. I had tried many things and various types of meditation without much help. Despite it almost feeling impossible in those moments, practicing gratitude was the thing that helped in a powerful way.

Just prior to the most recent rough patch I experienced, I was working on strategies with my therapist on how to navigate the really bad days and not feel so consumed, down or lose hope as a result. She recommended making note cards or little reminders of days and moments where I felt good and happy and to describe it in all its glory so that I wouldn’t forget that those moments are possible and that the bad moments are temporary. Before I could complete this task, I spiraled into a migraine that lasted seven days. Each time I thought I was possibly in the clear, it came back with a vengeance.

The progress in this recovery has moved at a sloth’s pace. No offense to sloths because I love them. It’s like living in slow motion. Once I feel I’m picking up speed and on a good path, I am destroyed by a wave, and sometimes pulled under.

Sometimes I can discern what triggered the bad days or setbacks and other times I can’t. I have noticed trends and patterns but there are still many moments where I feel as though I’m completely blindsided by it. This time, I knew the cause but it seemed to linger past what I had anticipated the amount of time it would take to get through. My brain was in major rebellion. Having no concept of when I would be out of the rough spell brought a great deal of stress and despair.

I know the path of this recovery very well at this point. It is not a perfect upward linear trend. It’s filled with ups and downs and setbacks. Somehow, though I know the path is very jagged and rough, I’m never fully prepared for the bad days. It is so easy during a setback or bad day to feel trapped, inundated and the end result being fully succumbing to fear. I think I’m in the clear but then it’s like I’m being dragged back into the torture of the pain. In the moment, it seems like too much pain for one person.

It’s easy to get caught up in the bad days. It feels like I’ve lost ground during the setbacks. It can be very discouraging which is an understatement. It’s human and I don’t fault myself for that but I’m realizing that in those moments I’m not looking at the big picture. Where am I now compared to six months ago? One year ago? Or two years ago?

Reflecting on times of the past where I felt this way, I made it through. That perspective helps. It is so easy to lose track of the big picture in those dark moments but I remind myself that my care up until recently had been majorly hindered by the simple fact that most of my providers were not looking at the big picture. I also need to look at the big picture rather than getting sucked into the familiar tunnel vision.

The days recently took me back to a moment in college. One of my best friends and I spontaneously decided to cross the street from our cottage to a local surf shop, buy boards and go directly to the beach to surf. Neither of us knew what we were doing and didn’t have any tips or guidance. We ran head on into some scary waves with no fear. We were pretty bad. And by pretty bad, I mean awful. At one point, I was destroyed by a wave and it took my surfboard with it. I was dragged under the wave by the surfboard leash attached to my ankle – that is what this recovery feels like.

Despite being destroyed by waves and aspirating quite a bit of salt water, we continued to get back on our boards and try over and over again. It was painful and terrifying at times but man, once we successfully stood up on our boards and caught a wave, all of it was worth it. And while we chose to do that, it is still a reminder of overcoming odds, pushing limits and facing challenges persistently. And that doesn’t just apply to this recovery but life in general which can be so turbulent. The water can be so calm at times but just like that, the waves start to roar and can even pull you under. I’ve realized I am not defined by the days of incapacitation.

Currently, good days are still the exception. I know that I can’t rush my healing, though I’d like to. In due time, the bad days will become the exception. There are no guarantees, I know, but I am holding on to the hope of my happy ending – my success story. Or rather, my happy beginning – of a life filled with new perspectives, wellness and vitality. Hopefully one day in the near future, I will be able to look back on these treacherous days which seem to engulf me like the big ocean waves, and stand up tall realizing that truly living again made the fight worth it.

Transforming the lowest days of my life into something greater, something magnificent, will be the greatest triumph.

The power of connection, community, faith, gratitude and love can never be underestimated. Thanks for being present on this journey. Your support and kindness will never be forgotten.

I have so much love for you.

From the depths of my heart, thank you.

A Trip to Georgia for Intensive Brain Rehabilitation

In February of 2019, four months after sustaining my brain injury, my uncle who lives in Georgia and works in the sports industry called my Mom to tell her about a doctor in Atlanta who was treating concussion with great success, especially with many big-time athletes. My mom and I called the office for a consult. It sounded unlike any treatment I had already tried and seemed promising.

Despite the fact that it sounded promising, I was hesitant and nervous about it. My bills were piling up from all of the treatments I had sought out which had become an additional stressor. I was nervous about traveling and experiencing the busy environment of the airport. I was nervous that the flight would exacerbate my symptoms.

It happened fairly quickly and the next day, with a push from my Mom, we were booking flights to Georgia for a week for an intensive neurorehabilitation program at Innova Brain Rehabilitation, now called Plasticity Centers.

I had looked into the treatment further which had received a lot of press over the past several years after Sidney Crosby of the Pittsburgh Penguins credited his concussion recovery success to Dr. Carrick, the founder of the Carrick Institute, which trains providers in clinical neuroscience and rehabilitation such as the doctors I would work with at Innova. Crosby had suffered several concussions and missed nearly a year of hockey as a result and in that time period, he had received treatment with Dr. Carrick who founded the field of functional neurology, also referred to as chiropractic neurology. Many other NHL players and professional athletes have had success with this treatment for their concussions.

What Is Functional Neurology?

Viewed by some as controversial or unorthodox, functional neurology combines neurology with chiropractic care. Functional neurology is a holistic approach, focused on the rehabilitation of the nervous system by identifying specific areas of miscommunication and dysfunction in the brain and treating those areas with a rehabilitation program. This treatment is deeply rooted in the process of neuroplasticity.

Neuroplasticity is the brain’s ability to reconnect dysfunctional communication systems or form new neural networks. This involves an in depth evaluation of the various systems of the brain. By using repetition exercises of the dysfunctional areas, the goal is to either strengthen or grow new networks within the brain. This is similar to exercise and using repetition to increase the strength of a muscle. In order to get bigger muscles, you must use and train them. The same concept flows into neuroplasticity and with repetition and exercises, the areas in the brain that may be weak or not communicating properly can strengthen connections and begin to work effectively again. This is the same concept used in neuro-optometric rehab.

The Carrick Institute is a postdoctoral education program where Dr. Carrick’s method of brain rehabilitation is taught. This is an additional three years of studies beyond chiropractic school completion. While many chiropractors go through this program, it is available for other providers too. This extra specialization allows a deeper understanding of the nervous system and how to treat problems that may arise. The goal of this treatment is to get the systems working together again. This involves waking up the deficient parts of the brain and also strengthening the communicating parts of the brain to make them more efficient, increasing endurance and then getting them to work in harmony again.

Using various tools and types of stimuli, these areas of the brain are strengthened. These tools include but are not limited to: whole-body gyroscope (GyroStim), which is a rotating chair that spins in various directions to stimulate the brain (picture and video of this later), electrical stimuli, laser therapies, light therapies, visual input, proprioceptive therapy, balance exercises and multi-tasking.

Touch Down in Atlanta

After an exhausting and symptom-provoking airport and flight experience, we made it to Georgia. I knew day one was going to be long and draining. I caught up with family which was wonderful. I was and am still so grateful I had a very welcoming place to stay. I got to bed early in anticipation of day one. It was nerve-wracking.

The familiar questions before new treatments scattered through my mind. Could they help? What if this is another dead end? Would it be worth the expense? At the end of the day, I was so desperate for something, anything, to work. The smallest chance that this could help was enough to propel me forward.

Innova Brain Rehabilitation

From the start, we were met with open arms. Literally. I received a big hug from Leslie, the care coordinator. She definitely made up for my lack of energy, in a good way. I then met Dr. Duffy and Dr. Patterson. I knew we would have a special bond and this group would soon feel like family.

I had to fill out forms including a symptom checklist with a scoring system of 0 (none) to 6 with 5-6 being severe. My severe symptoms included: headaches, pressure in head, dizziness, sensitivity to light, feeling slowed down, feeling in a fog, don’t feel right, fatigue or low energy, more emotional, sadness, trouble staying asleep, eye pressure, tinnitus, jaw pain. Moderate symptoms included: neck pain, nausea or vomiting, blurred vision, difficulty concentrating, irritability.

We wasted no time and got to work. I sat down with Dr. Duffy in an exam room where we went over my injury, symptoms, imaging results and treatment modalities tried up until that point. This was the first time the reality of the situation started to settle in. He was the first provider to tell me that I absolutely could not afford even one more hit to my brain. I think somewhere within me I knew this was the case but I wasn’t willing to accept it just yet.

The reality was hard for me to accept but I was somewhat relieved to hear a strong perspective on the issue that was tormenting my mind. At this point, I was still holding on to the thought that somehow it would be worth it for me to play hockey again. The truth is, I really wanted one of my providers to make the decision for me so I could be done with it. I wanted them to make it for me because I wanted to be reckless. And really, I had been reckless for the majority of my hockey career. It was as if I needed protection from myself. This was a start, though I continued living in denial for quite a bit longer. It still seems silly in retrospect that I held on to that idea for so long even though I was never even close to having the opportunity to play again.

I have come to realize that sometimes the idea of something is so much more appealing than the reality. I had come to love the idea but not the reality. And this was a hard truth I had to grow to recognize on my own. I wrote this in my journal during my recovery:

When will reality become better than my dreams?

I took the recommendation from Dr. Duffy where it would marinate for quite some time and we moved along.

Comprehensive Testing and Results

The exam was long and grueling. While I summarize a lot of it here, there was so much more conducted and assessed that I have not included. We first started with my vital signs – blood pressure and heart rate. My gait was then assessed. I walked down a long hallway and then making things a bit more complicated, he had me complete random tasks such as saying the alphabet, then saying the alphabet backwards while walking. I didn’t realize this could be such a difficult task.

My gait demonstrated no left arm swing. Arm swing during normal walking can indicate how well the brain is functioning. By adding dual tasking or asking me to say the alphabet while walking, the doctor assesses for any change in arm swing. This is a useful assessment for persons with neurological disease.

Luria’s test is a test that assesses frontal lobe damage or dysfunction. It involves the performance of three different hand motions. My result showed the movements were decomposed on both sides, suggesting I suffered frontal lobe damage of my brain.

Perfusion index is a measure of blood flow to peripheral tissues and can give a look into the autonomic nervous system. This is measured with a sensor on the fingertip similar to that of a pulse oximeter which measures heart rate and blood oxygen levels. It is supposed to be between the ranges 1.5-4. My PI was 0.32, suggesting dysautonomia, along with many other findings. As a reminder, dysautonomia is a dysfunction of the autonomic nervous system.

A bruit is a vascular sound heard through a stethoscope that is a result of turbulent blood flow. Bruits were present over the left subclavian and both carotid arteries, suggesting dysautonomia.

The pupillary reflex is a look into the function of cranial nerve III. The findings suggested decreased brain function. My left pupil was fast to fire and fail. The right pupil demonstrated hippus, which means the pupil constricts and dilates back and forth. Interestingly, this term is rooted in Greek origins from the word hippos which means horse so it has been suggested the name was given as the fluctuating movements of the pupil resemble that of a galloping horse. This fluctuation in the pupil reflects varying signals from the nerves responsible for autonomic functions. Again, this points to dysautonomia and an imbalance of the sympathetic and parasympathetic nervous systems.

Several movements were performed and assessed which evaluated fine motor skills and function of the cerebellum. Rapid alternating movements of the arms were slower on the right, suggesting decreased cerebellar function on the left. Finger-thumb tapping showed sluggish action on both sides.

The Maddox rod test is a test used to evaluate the diplopic function of the eyes, or the eyes functioning together on a target. One eye visualizes a line while the other visualizes a light. In normal functioning of the eyes, the line and light should overlap. When I did this test, the line was many inches away from the light. What they found on exam was exodeviation or the deviation of the eye outward. They also found hypotropia which means one eye drifts downward. The result of this is each eye is seeing a target at different points in space which can lead to double vision and other visual symptoms.

Convergence testing which measures how the eyes come together to focus on a target at near showed failure at 9 inches with both eyes shifting to the right. For reference, normal convergence in healthy eyes should be around 3 inches.

Further assessment of the cranial nerves showed a low hanging palate on the right, representing dysfunction of cranial nerves IX and X. My balance was tested which actually wasn’t too bad.

Then things started getting complicated. By complicated, I mean exceptionally difficult and draining. Visual eye tracking via video-oculography was performed, assessing eye reflexes and movements. Sitting in the chair not focusing on any target in pure darkness, my eyes demonstrated right beating nystagmus. Nystagmus is an involuntary, quick rhythmic movement of the eyes.

Focusing on a stable, non-moving target in various gaze positions, my eyes showed square wave jerks. These jerks are also involuntary movements of the eyes but consist of an initial sudden movement from the intended fixed target followed by a second quick movement in the opposite direction. On the video and graph result of my eyes, it looked like tiny, spastic movements that I named tiny eye earthquakes.

Pursuits were assessed, which are large fluid movements of the eyes to track a moving object. Again, with these movements, I experienced the tiny eye earthquakes. This threw off my tracking of the object and I was left feeling dizzy, nauseous, off balance and with an increased headache.

Quick eye movements between targets called saccades showed a prolonged latency, which is the measure of time it takes for the nervous system to trigger this movement. My latency was prolonged, which is a typical finding after brain trauma or neurological conditions.

The hardest part of the testing was when we got to the optokinetic reflex (OPK). The OPK is the reflex that allows us to follow objects in motion while our heads remain stable. An example of this is when you are driving down a tree-lined street or a construction zone with orange cone after cone. As you pass each tree or cone, this reflex allows you to stabilize the image and still allow you to recognize where you are at in space by the quick adjustment of the eye as the tree or cone moves out of your field of vision. In a healthy pair of eyes, they will quickly jump back to the original location of target. My OPK was egregiously off as shown by my results but also the test itself left me so dizzy, nauseated and almost to the point of vomiting. This would explain my issues with tracking moving objects, sickness in the car and inability to scroll on my phone.

The vestibular ocular reflex (VOR) was also deficient. This reflex is used to stabilize your gaze while moving the head due to activation of the vestibular system which allows you to maintain balance and equilibrium if working properly. This gives you an idea of how the visual system is working with the vestibular system. As a matter of demonstrating why the OPK and VOR can give such an indication of brain function is how many areas it takes to stimulate these reflexes. Both reflexes are stimulated by neurons located diffusely in the brain.

The results I received made me feel validated. Having no objective data of my deficits leading up to this point was difficult for me to understand. I struggled to understand my brain and body and having nothing to show why I was feeling the way I did left me feeling invisible.

In short, my results showed major short circuiting in various areas of my brain. My eyes were the most troubling. My autonomic nervous system was in a state of fight or flight. I could not hold a stable gaze on a target that was not moving and my eyes were spastic even when not focusing on any target. How would we get all of this to start functioning properly again?

Rehabilitation/Treatment

My rehab was intense and grueling, with each day being eat, sleep, rehab, repeat. Rehab consisted of starting with the basics and fundamentals which was gaze stabilization and getting the eyes to be able to focus on a non-moving target. As time went on, we added movement of my body while my eyes continued to focus on the target.

Chiropractic manipulation was used to not only get my body in balance but to also give my brain good positive reinforcement and feedback. Proprioceptive feedback is important for the brain and body because it allows you to sense your position in space. My brain needed repeated positive feedback because it was constantly out of equilibrium. It was determined that my first left rib was stuck which improved with manipulation. Interestingly, my left jaw had begun popping and clicking since my injury and this was the first time it was suggested that the neck should be looked at more closely as that was most likely where it was originating from. My shoulder was a mess from my surgery just two months prior due to failure of rehab, so manipulation of the shoulder was also done.

Electrical stimulation was used to stimulate the second branch of cranial nerve V. This would stimulate the nuclei located in the pons, the largest part of the brainstem that houses a group of nerves. This is important for sensory and motor communication in the brain.

The GyroStim machine became my best friend. I felt like I was preparing for a NASA takeoff to outer space. The GyroStim is a multi-axis rotational chair, invented by an engineer in his basement, desperate to find a way to help his daughter who had suffered from cerebral palsy. The movements of the chair were theorized to stimulate the vestibular system, motor control areas in the brain and wake up dormant neural networks. When he noticed major improvements in his daughter, this device slowly made it into the medical community. Interestingly, the first sale of this chair was to the Air Force Academy.

The chair even does flips! No flips for me, though. Flips did eventually occur later that year when I completed another intensive rehab program in functional neurology, but that’s another story. During this treatment at Innova, I moved slowly left to right in the machine as I fixated my eyes on a little smiley face sticker. It was difficult for my eyes at first but became easier each time and my autonomic nervous system seemed to love it too. My perfusion index which again is supposed to fall between 1.5-4 improved to 1.8 from a whopping 0.32. It continued to rise the more we did it, maxing out at 2.3. Attached at the end is a video showing this futuristic device.

Passive figure 8 movements called complex proximal joint movements of the right leg and arm were done in opposite directions to stimulate the left cerebellum. Attached at the end is a video showing this.

The last day consisted of repeat testing, one last hoorah in the GyroStim and education on my home exercise program.

Major Improvements and Home Assignments

By the end of the week, I was feeling improvement which was amazing. I remember being so happy to feel some relief, I couldn’t help but cry. While I was still far from “normal,” I was sleeping better, my pain had decreased and many of my other symptoms had improved too. The initial symptom checklist I had filled out showed many of my symptoms decreasing to the mild or moderate range rather than severe.

Home assignments were given. With the repetition of the exercises, this was supposed to stimulate my brain to make new connections. This was also supposed to help stabilize my vision which was so terribly wrecked at this point. The improvements and gains I made in Georgia came home with me.

Very religiously each morning, my Mom or Dad would assist me with my home exercise program. Two of the exercises were called sinusoidal pitch movements which were to mimic the same movements in the GyroStim. My parents would push me in a rocking chair, slowly forward and back as I stared at a sticker on the wall to stabilize my gaze. We would then move over to an office chair, where I would be rotated slowly side to side as I stared at a sticker on the wall.

We were to continue the complex proximal joint movements or figure 8 movements at home. Lastly, I was also given breathing exercises and stretching exercises to open up my chest. All of these exercises would be repeated and done twice a day.

The Inevitable Decline

As I continued the home exercise program, I was feeling hopeful but after about two weeks of being home, things started to reverse. Despite religiously doing the assigned exercises, all of my symptoms came flooding back to the intensity they were prior to my trip. I was disheartened, devastated, hopeless, and again could feel myself being drawn back into the dark place I had become so familiar with.

It was hard for me because I again took it as a reflection of me. I was trying my hardest with the exercises and it still wasn’t good enough. Why couldn’t I make it stick? I decided maybe if I just increased the exercises and did them three times a day instead, the gains would come back. They didn’t. I lost them. I could not understand why.

I understand now. While they did a deep investigation of identifying the areas of my brain that were not functioning properly and assigned the rehab exercises for those specific areas, it was not sustainable. It was not sustainable because of the underlying problem of rampant inflammation and neurosteroid imbalance. My brain could not hold on to the gains because it was simply not prepared to receive or keep them.

I’ve discussed previously that maybe the timing of a treatment is just as important as the treatment itself. I truly believe there is major benefit to functional neurology, but I don’t believe I was at a point where my brain was ready to receive it and hold on to it. How could those improvements thrive in a brain riddled with inflammation? And one without the proper levels of neurosteroids, potent regulators of neuroinflammation.

It was a safe space for my brain that made it feel good. But once I left that space, my brain faced that familiar reality – the perception that everything was a threat and inundated with inflammation. The intensive positive input I received day in and day out from rehab was gone and so those connections became weak and lax, falling victim to the diffuse inflammation throughout my brain. There was nothing to combat it.

While at Innova, I thought, this is the missing puzzle piece. This is the thing that will get me better. While it didn’t turn out to be that, it did bring me a little hope to keep going and it brought me a reprieve from my symptoms for even a brief moment, which was more valuable to me than anything leading up to that point. It also opened my eyes to the deeper issues within my brain and my vision, which ultimately led me to find a neuro-optometrist which has been a huge, much needed resource. It also led me to explore the role of my neck in my recovery which had been neglected up until that point. I truly believe functional neurology can help patients whose brains are ready to receive the benefits and hold on to them.

By the end of day one, the Innova staff felt like they were family. We still keep in touch to this day. They treated me with kindness and care and brought me much needed hope. That is something that I will be forever grateful for.

Sources

Chiropractic Functional Neurology: An Introduction, 2017. PMID: 30881237.

Hormone Abnormalities Following Traumatic Brain Injury: Deep Dive

My last post was a light dive into the connection between neurosteroids and traumatic brain injury (TBI). I have great respect for Dr. Gordon who developed the neuroendocrinology TBI protocols and I have great respect for my doctor, Dr. Donaldson, for helping me get my life back with these protocols.

The hypothalamic-pituitary axis is often affected by brain injury leading to hypopituitarism. While every brain injury is different and unique, the root of each is an inflammatory state in the brain. I highlighted growth hormone and its importance in my last post, however, I want to give all of the hormones the attention they deserve.

Hormones have been found to affect neuroplasticity, or the brain’s ability to regenerate and grow new connections. If the hormones are depleted, what does this mean for the brain’s ability to heal those damaged areas and neurons? What would the number of post concussion syndrome (PCS) patients look like if there were a screening process in place for these hormonal deficiencies? Would it still be as high as up to 60% of patients going on to experience PCS?

Did you know that up to over half of all individuals who sustain TBI will become depressed within the first year after the injury with some research showing up to 77% and greater than 60% within seven years?^1-3 Various research articles suggest a two to three-fold increased risk of suicide following brain injury versus those who had not suffered brain injury.

Rather than identifying the driving force of the depression, most patients are placed on one antidepressant or a combination. Or like myself, you start to go down the entire list of them because the side effects are intolerable. One might say, “Well, the cause of the depression was the brain injury.” But that doesn’t actually identify the underlying cause. This is if the association to the brain injury was made. What exactly occurred in the brain from the trauma that led to the depression? And why might depression not develop or present in these patients until years later? Now we are looking back at this cascade in the brain and long-term inflammation, damaging neuro-connectivity and leading to the hormonal disruption described here.

Here is an interesting Table from Dr. Gordon’s TBI book showing just how many articles have been published on the association between depression and hormone deficiencies from 2000-2012 alone:

I was actually quite surprised seeing the numbers. This is way more than expected and surprising as hormonal deficiencies are most often not explored or investigated as a cause of depression prior to starting antidepressants despite literature being readily available for many years.

Hormones are powerful and quite miraculous messengers. They work as a team throughout the body with a system of checks and balances. The organs secrete the hormones, these messengers travel to their target destination where they find a specific receptor just for them. When the specific messenger has reached the receptor and binds, cell behavior changes which allows the specific function of the organ or process to change and act.

After taking my idea of hormonal involvement to several of my doctors and didn’t get very far, I sought out care from a functional medicine doctor. The only hormone testing done was for cortisol, which was found to be low throughout the day, though this was predicted and was not surprising. I still had this feeling like there was more out of balance than just that but this was the expert who was trained to look at the big picture, and at that point I was sort of clueless about hormone treatment so I went with it.

If hormonal deficiencies are identified, standard hormone therapy may only replenish one or two deficiencies, but others are often overlooked. This leads to further imbalance in the system. The hormones of the body all working together is like a magical symphony. If just one hormone is insufficient or lacking, others will follow and not function effectively. They all play such an important role and getting them to function collectively and optimally is a careful process that requires fine tuning.

I think of tuning my violin. The big pegs at the one end of the violin just beyond the neck are the initial doses of hormones while the small fine tuners at the opposite side of the violin beyond the bridge are what is needed to very meticulously and finely adjust the dosage. If you turn the big peg of one string too much, another string may reactively go out of tune. The result will be a lack of balance and lack of harmony, just the same as hormones. The small fine tuners of the violin often save the day; moving it just a millimeter will allow the perfect pitch. When playing for long periods of time, you have to continuously reassess and fine tune the strings. Through time, each hormone is reassessed and fine-tuned, similar to tuning the violin. This is an ongoing, meticulous process, that requires a delicate balance.

Let’s give these powerful messengers the credit they deserve! I now realize fully just how important each individual hormone is to function optimally. Even small changes in hormone levels can lead to big changes in the body and wreak havoc. Case in point – my life over the past 2.5 plus years.

It is important to note that there are broad ranges given for all of the hormones and if your lab result falls into the “normal” range you may not be treated even though that may not be optimal. A low-normal result, or sub-optimal result, can cause a multitude of symptoms as well.

What happens if certain hormones go haywire? What symptoms might one experience with specific deficiencies? In this post, I will dive deep into the hormonal abnormalities and symptoms that can arise with each. The symptoms overlap for many. If you take only one thing away from this, let that be that hormones are so powerful and if we channeled the time spent on picking out the next pharmaceutical drug for a patient on finding the underlying cause of the symptoms, we would be in a much better place.

Command, do you copy?

The command centers of the hormones are located in the brain in the hypothalamus and pituitary gland. Signals are received by the brain which are then sent to the hypothalamus where the signals are translated into the hormone language. This is passed along to the pituitary gland which then causes further signaling, to release a particular hormone. These will either act directly on certain processes or indirectly by signaling other endocrine glands downstream.

The hypothalamus resides between the pituitary gland and the inner brain, connecting the endocrine and nervous systems. It plays such an important role in the release of hormones such as growth hormone-releasing hormone (GHRH) which regulates growth hormone production, thyrotropin-releasing hormone which regulates thyroid hormone release, luteinizing hormone (LH) and follicle-stimulating hormone (FSH) which regulate sex cell production, corticotropin-releasing hormone (CRH) regulating adrenocorticotropin release which regulates the stress response through cortisol production. If damage or inflammation occurs in the brain throwing off any of these hormones, these powerful messengers are unable to signal the proper channels.

The pituitary gland is the size of a pea and is small but mighty. Do not underestimate its power or role. We must protect the pea! It resides at the base of the brain and is considered the “master gland” as it plays the central role in the endocrine system. The gland has an anterior and posterior lobe which in combination regulate the reproductive organs, adrenals and thyroid. The messengers come from the hypothalamus and in turn, the pituitary releases growth hormone, stimulates the thyroid gland to produce thyroid hormones by releasing thyrotropin, the adrenal gland to produce cortisol by releasing corticotropin. It also secretes prolactin, allowing new mothers to produce milk but is also involved in many other functions.

The posterior lobe of the pituitary releases antidiuretic hormone (vasopressin) helping to maintain water balance in the body and oxytocin which has been called the “love hormone,” but also serves other functions too. Serving as the master gland and having such a governing role in the body, you can imagine that damage or inflammation can lead to inhibition or activation of these hormones and the regulatory processes, leading to many issues.

Growth Hormone

I’m starting with the boss. I call growth hormone (GH) the boss because it influences every other hormone in the body. Not only that, but GH is found in every tissue in the body. If something happens to the boss who is supposed to communicate with the workers of the body (cells and other hormones down the line) and tell them what to do, the system fails. The communication is dysfunctional, the workers don’t do their jobs effectively or go on strike. It can turn into a mess.

When you think of growth hormone, you may think of its importance in childhood only. This is what allows you to grow and become an adult. The importance carries on into adulthood, in a big way.

Effect: mood, stress, energy, memory, sleep, immune system, sex, circulation, bones, joints, weight, skin and hair.

GH deficiency can lead to: depression, anxiety, fatigue, difficult recovering from physical activity, thinning hair, weight gain, slack muscles, loss of muscle mass, thin or dry skin, wrinkles, saggy cheeks, poor sex drive, difficulty relaxing, poor endurance, dream infrequently, sleep for long periods but do not feel refreshed, sensitivity to sun, slow wound healing or easy bruising, grey hair, thick folds of skin, fat hump on upper back, loss of muscle mass or strength, tense muscles, poor sleep, memory problems, high blood pressure, irritability, worried, poor cardiac artery health, high cholesterol or high LDL and low HDL (good), arthritis, bone loss in the spine, stomach saggy, labs showing low immune function.

DHEA

Dehydroepiandrosterone (DHEA) and when sulfated to its active metabolite, DHEA-S, play a significant role in the brain but also peripheral organs. DHEA-S is able to stimulate glial cells into making myelin, the insulating sheath around neurons. DHEA transforms down the chain to become testosterone and estrogen. More DHEA will be secreted over your lifetime than any other hormone! DHEA helps enhance immunity, memory, decrease joint pain, increases energy levels, and quells excess cortisol levels, among many other functions.

Effect: mood, stress, energy, memory, sleep, immune system, sex, circulation, bones, joints, weight, skin and hair.

DHEA deficiency can lead to: depression, flabby muscles, loss of muscle mass, lack of hair in the pubic area, low libido, lack of sexual odors, dry hair, excessively dry skin, dry eyes, fat belly, noise intolerance, memory problems, high cholesterol, high blood pressure, bone loss in the spine, easily worried or excitable, difficulty recovering from physical activity, labs showing low immune function, low antibodies.

Testosterone

Contrary to popular belief, testosterone is one of the most important hormones for men and women both! Naturally, decline in women starts in the 20s and for men in the 30s. Not just important for libido of both sexes, it also reduces the risk of heart disease by protecting the arteries, and protects the kidneys and pancreas. It is important for the prevention of osteoporosis, joints and muscles, hair growth, energy and stabilizing mood.

Effect: mood, stress, energy, memory, sleep, sex, circulation, bones, joints, weight, skin and hair.

Testosterone deficiency can lead to: depression, loss of muscle tone, belly becomes flabby, damaged arteries or atherosclerosis, weak heart beat, tired constantly, low libido, face with more wrinkles, difficulty recovering from physical activity, excessively dry skin, lack of sexual odors, pale skin, thin skin, wrinkles at the corners of the eyes, dream infrequently, fat hump on upper back, poor sleep, slow wound healing, arthritis, memory problems, easily worried or excitable, sensitivity to the sun, hair turning grey, high cholesterol, high blood pressure, bone loss in the spine. Specific to men – feeling less confident, dream infrequently, hot flashes, tired with physical activity, breasts become fatty, decreased sexual performance, hair loss to top of head, lower abdomen, chest or legs.

Progesterone

When many think of progesterone, the first and maybe only thought is its importance in the menstrual cycle but its role goes much beyond that. Progesterone has been found to be highly protective of the brain, quelling inflammation, swelling and protecting the blood-brain barrier (regulates what passes into the brain). Progesterone has a calming effect as it binds to GABA receptors in the brain, which in turn can help with anxiety, sleep troubles or restlessness.

The sparked interest in progesterone and its role in TBI recovery stems from a study of female rats in which they experienced induced TBI and given progesterone which led to better recovery and improved outcomes. Subsequent studies showed similar results in animals. Further studies in humans showed promise but more studies need to be conducted to validate these results.

Effect: mood, stress, energy, memory, sleep, immune system, sex, circulation, bones, joints, weight, and hair.

Progesterone deficiency can lead to: depression, memory problems, swollen and tender breasts before period, irritability, heavy periods, painful periods, bloating of lower abdomen, nervousness, agitation, anxiety, tense muscles, sleep is restless or light, hair loss on top of head in women, dream infrequently, easily worried or excitable, difficulty relaxing.

Estrogen

Translated from ancient Greek, this is the “generator of desire.” Estrogen serves hundreds of functions in the female body. Well known for its function in the reproductive system, it also plays many non-reproductive roles. Let it be known that estrogen is important and needed in men too! Estrogen plays important roles in the brain by blocking a brain enzyme called monoamine oxidase, which allows important mood-simulating neurotransmitters to act longer and stronger. It also creates catecholestrogens which are neurotransmitters that act as mental stimulants. These two functions can aid in the reversal of depression or prevent it in the first place. It improves blood flow and is a powerful antioxidant.

Some research has looked into where a woman was in her menstrual cycle when she sustained a brain injury and how that may play a role in recovery. Estrogen seems to offer a degree of protection to the brain just as progesterone.

Effect: mood, stress, energy, memory, sleep, immune system, sex, circulation, bones, joints, weight, skin and hair.

Estrogen deficiency can lead to: depression, arthritis, irregular menstrual cycle in women, damaged arteries, hot flashes, excess facial hair, fatigue, loss of muscle mass, lack of sexual odors in women, lack of vaginal lubrication, hair loss on top of head, excessively dry skin, pale skin, thin skin, wrinkles at the corners of the eyes, high cholesterol, high blood pressure, difficulty recovering from physical activity, memory problems, dream infrequently, poor sleep, bone loss in the spine. In men specifically – low libido, infertility.

Cortisol

I always associated cortisol with stress but it is so important for reducing stress and has been referred to as the “anti-stress hormone.” The rise of cortisol when under stress actually allows your body to manage and expel the stress. Cortisol not only helps us to quickly respond to stressful situations but also reduces inflammation, influences appetite, increases energy, aids in digestion and even enhances function of the immune system.

Effect: mood, stress, energy, memory, sex, immune system, circulation, bones, joints, weight, skin and hair.

Cortisol deficiency can lead to: weight loss, face looks thinner, allergies, feeling stressed out, digestive issues, arthritis, weak or fast heartbeat, trouble concentrating, being easily confused, salt or sugar cravings, skin issues (eczema, psoriasis, rashes), low blood pressure, light headed in stressful situations, circular patches of hair loss, swollen moon face, feeling wiped out from the least amount of stress, fat hump on upper back, sleep for long periods but do not feel refreshed.

Pregnenolone

Often referred to as the “mother of all hormones,” as it is the first steroid generated from cholesterol and goes on to be the start of two key pathways, ending up as aldosterone/cortisol and testosterone/estrogen. Insufficient levels of pregnenolone can cause a spiral effect down the line. This steroid is found in the brain, and highly concentrated specifically in the hippocampus. It is so important for memory. A fun fact about this one is that with replenishment, it can intensify or enhance the way you see colors.

Effect: memory, joints.

Pregnenolone deficiency can lead to: low blood pressure, craving salty food, memory loss, difficulty handling stress, joint pain, lack of hair in pubic area or under arms, flabby muscles, excessive light-colored urine during the day, feeling drained, not seeing colors as brightly, difficulty trusting your memory.

Thyroid

The pituitary gland produces thyroid stimulating hormone (TSH) which stimulates the thyroid gland to produce triiodothyronine (T3) and thyroxine (T4). Situated at the anterior base of the neck is the thyroid gland. These hormones serve a pivotal role in growth and development, blood circulation, metabolism, the nervous system. The thyroid hormones stimulate the mitochondria of the cells and protects the brain, heart, kidneys, immune system and digestive organs. The effect on blood circulation aids in removing waste from arteries and cells and also dissolving cholesterol.

Effect: mood, stress, energy, memory, sleep, immune system, circulation, bones, joints, weight, skin and hair.

Thyroid deficiency can lead to: cold hands and feet, puffy face and eyelids in morning, sensitivity to cold, easily put on weight, arthritis, constipation, pale skin, feeling more tired at rest than when moving, dry hair, brittle hair, hair loss, slowed thinking, excessively dry skin, stiff joints in the morning, fat hump on upper back, trouble getting up in the morning, high cholesterol, weak heartbeat, high blood pressure, sleep for long periods but do not feel refreshed, trouble concentrating, memory problems, labs showing low immune function.

ACTH

Adrenocorticotropic hormone (ACTH) oversees the production of the anti-stress hormone, cortisol. The effects are not just limited to that; it also plays a role in hair growth, skin color or tan, and is also an important messenger for neurons in the brain. ACTH is important for keeping you cool by building up stress resiliency and helps with mental focus and attentiveness.

Effect: stress, energy, memory, joints, skin and hair.

ACTH deficiency can lead to: feeling stressed out, low blood pressure, weight loss, memory loss, patches of hair loss, hair turning grey, pale complexion, trouble concentrating.

Insulin

Insulin has the primary role of stabilizing and maintaining blood-sugar levels. Not only that, but it plays a role in strengthening arteries and protecting against heart disease. It enhances the immune system and aids in the digestive system. Insulin provides you with energy, strengthens muscles and stores fat as energy reserves.

Effect: mood, energy, sex, circulation, immune system, sleep, weight, skin.

Insulin deficiency can lead to: loss of muscle mass, lack body fat, skinny buttocks and stomach, excess urination in day and night, sugar cravings, excessive thirst, poor healing, lack energy for tiring work.

Vitamin D

I didn’t want to leave this one out. Surprise! Vitamin D is actually a hormone. Many different types of cells have receptors for it throughout the body. It serves such an important role in the immune system, bone health, mental health, a healthy gut microbiome and cardiovascular health.

In several research studies, vitamin D has been shown to protect the neurons of the brain through its powerful immune-boosting and anti-inflammatory capabilities. Deficiency in vitamin D following TBI is common and has been associated with more severe depressive symptoms and worsened cognitive function. Low vitamin D status has been associated with a higher incidence of inflammatory conditions, cancer and chronic disease.

Sources

1. Depression in Men and Women One Year Following Traumatic Brain Injury (TBI): A TBI Model Systems Study, 2017, DOI: 10.3389%2Ffpsyg.2017.00634.
2. Major Depression in Patients with Closed Head Injury, 1987, DOI: 10.1037/h0091773.
3. Neuropsychiatric Complications of Traumatic Brain Injury. 2007, DOI: 10/1176/jnp.2007.19.2.106.
4. Psychiatric illness following traumatic brain injury in an adult health maintenance organization population, 2004, DOI: 10.1001/archpsyc.61.1.53.
5. Traumatic Brain Injury, A Clinical Approach to Diagnosis and Treatment, Gordon, 2016.
6. Prevalence and correlates of vitamin D deficiency in adults after traumatic brain injury. 2016, DOI: 10.1111/cen.13045.
7. The Neuroendocrine Effects of Traumatic Brain Injury, 2007, DOI: 10.1176/jnp. 2007.19.4.363
8. Brain damage, sex hormones and recovery: a new role for progesterone and estrogen? 2001, DOI: 10.1016/s0166-2236(00)01821-x.
9. Estrogen and progesterone as neuroprotective agents in the treatment of acute brain injuries, 2003, DOI: 10.1080/1363849031000095279.
10. Hypopituitarism after traumatic brain injury. 2005, DOI: 10.1530/eje.1.01895.
11. Physiology, Progesterone. 2021, StatPearls.
12. Physiological Action of Progesterone in Target Tissues, 1997, DOI: 10.1210/edrv.18.4.0308.
13. Endocrinology: An Integrated Approach. Whithead, 2001.
14. Physiology, Thyroid Hormone, 2021, StatPearls.
15. Mechanisms in Endocrinology: Insulin and type 1 diabetes: immune connections, 2013, DOI: 10.1530/EJE-12-0693.
16. Normal Physiology of Growth Hormone in Adults, 2019, Endotext.
17. The Hormone Solution, Hertoghe, 2002.
18. Vitamin D and the central nervous system, 2013, DOI: 10.1016/S1734-1140(13)71003-X.
19. Vitamin D and neurocognitive dysfunction: Preventing “D”ecline? 2008, DOI: 10.1016/j.mam.2008.05.001.
20. Physiology, Adrenocorticotropic Hormone (ACTH), 2020, StatPearls.
21. Pregnenolone, Henderson, DOI: 10.1210/jcem-10-4-455.
22. Mechanisms in Endocrinology: Estradiol as a male hormone, 2019, DOI: 10.1530/EJE-18-1000.
23. What Does Estrogen Do? 2014, DOI: 10.1210/jc.2014-v99i4-31A.
24. The Role of Estrogens in Control of Energy Balance and Glucose Homeostasis, 2013, DOI: 10.1210/er.2012-1055.
25. Relationship Between Testosterone Levels, Insulin Sensitivity, and Mitochondrial Function in Men, 2005, DOI: 10.2337/diacare.28.7.1636.
26. Revisiting the role of testosterone: Are we missing something?, 2017, DOI: 10.3909/riu0716.
27. The Biological Actions of Dehydroepiandrosterone Involves Multiple Receptors, 2008, DOI: 10.1080/03602530600569877.
28. Hypopituitarism After Multiple Concussions: A Retrospective Case Study in an Adolescent Male, 2007, PMID: 18060001.
29. Neuropsychology and clinical neuroscience of persistent post-concussive syndrome, 2008, DOI: 10.10170S135561770808017X.
30. Neurobehavioral and quality of life changes associated with growth hormone insufficiency after complicated mild, moderate, or severe traumatic brain injury, 2006, DOI: 10.1089/neu.2006.23.928.
31. Neuroendocrine Dysfunction in a Young Athlete With Concussion A Case Report, 2017, DOI: 10.1097/JSM.0000000000000408.
32. GH deficiency as the most common pituitary defect after TBI: clinical implications, 2005, DOI: 10.1007/s11102-006-6047-z.

Traumatic Brain Injury Treatment Everyone Should Know About: Success at the Regenerative Medicine Center

A few months ago, I started a new treatment protocol for traumatic brain injury (TBI) at the Regenerative Medicine Center in Pittsburgh. I faced many obstacles leading up to this treatment that had prevented me from exploring it much sooner in my recovery. I was told I couldn’t get better, to accept that this is the best I’ll ever get. This is a similar tune heard by many TBI sufferers and it shouldn’t be that way. I hope that my experience can bring some much needed light and perspective to both brain injury sufferers and medical providers alike.

To the medical providers: There is a way to help these patients get better. To the TBI sufferers: There is a light at the end of the tunnel.

In this post, you will learn the medical explanation of this treatment, my flawed experience with conventional medicine for treatment of TBI, my progress and reflection of all that has transpired since starting this new protocol just a few short months ago.

This post is a culmination of months and a huge feat for me as I have spent a lot of time listening, slowly writing, slowly reading, and re-reading in order to gain a deeper understanding of the science behind the treatment. I still have so much to learn! I knew more layers would be revealed as time went on and that there are still many layers to come, but I feel it is important to share this and spread this information. I was initially hesitant because I had this residual feeling from many other treatments in the past that had failed. I thought that maybe this was too good to be true. It turns out, this treatment is good and true! It has been an extremely humbling process.

Flashback to my first post about my initial trip to Pittsburgh, I first learned of the use of neurosteroids to treat TBI while listening to a few podcasts.

After hearing about this treatment in a podcast one year into my recovery, I posed the idea to several of my doctors which was essentially shunned. One doctor said to me, “I’m not sure hormones really play a role in brain injury recovery.” This had led me to suppress the idea that this could help me and was a real option. I brushed it aside as the reaction from my providers led me to feel like this was a crazy idea and one simply out of desperation.

Another year had passed and again, I heard another podcast about neuroendocrinology and this treatment. At that point, I felt so desperate and didn’t care what any of my current doctors thought about seeking this treatment. I discovered Dr. Valerie Donaldson who had completed a certification process in Neuroendocrinology TBI treatment protocols led by Dr. Mark Gordon, who developed them. Dr. Donaldson is also an expert in regenerative medicine and functional medicine so I attribute my success to all of her knowledge in many areas as well as the TBI protocols.

The Neurosteroid TBI Connection

Neuroendocrinology is the study of medicine that relates to the interaction between the endocrine system and nervous system. This focuses on the hormonal activity throughout the body that is regulated by the brain. Neurosteroids are hormones synthesized by the brain, regulating the growth of neurons as well as the connections and communicating system between the neurons. Neurosteroids act in target glands throughout the body such as the thyroid, adrenal glands and gonads (ovaries and testes).

There is primary and secondary injury following brain trauma. The primary injury leads to cellular damages, vascular damages, ischemia (restricted blood flow) and metabolic crisis. The secondary phase is riddled with complex processes, a toxic symphony leading to the fostering of a highly inflammatory state in the brain. The secondary effects from this process can present as symptoms even decades later, and by that point the association between the symptoms and the brain injury may have been lost, resulting in long-term suffering. Without identifying the underlying cause, healing potential is limited and inflammation continues.

The pituitary gland and hypothalamus are both key players in hormonal regulation. These two areas are easily impacted and highly vulnerable to brain injury. The hypothalamus resides between the pituitary gland and the inner brain, connecting the endocrine and nervous systems. Living at the base of the brain is the pituitary gland. It plays such a central role in the endocrine system that it gained the reputation of the “master gland.”

The hypothalamic-pituitary axis is the system that intertwines the central nervous system with the endocrine system. It has been found that TBI can lead to dysfunction of this axis, causing various hormonal abnormalities. In research, it is estimated that about 50-76% of TBI patients show some loss of pituitary neurosteroid function and suggests that 58% of these patients will recover within a year but the other 52% carry on to develop new deficiencies a year after the initial injury.^1-3

Through research and working with thousands of TBI patients, Dr. Gordon found that neurosteroid hormone deficiency or insufficiency (low “normal” range) is often found in brain injury patients and the underlying cause of prolonged symptoms, with growth hormone abnormality being the most common. By properly addressing chronic inflammation, identifying the deficiencies and treating them, there has been great success getting brain trauma patients better with reproducible results. I had wondered if I could be one of those patients.

Neurosteroid deficiencies could mean reductions in any of the following: growth hormone, estrogen, pregnenolone, DHEA, progesterone, testosterone. While all of these play a huge role, growth hormone is of high importance because it is essentially the quarterback of so many functions in the body. If the level declines, the functions of the body start to decline too. Growth hormone is responsible for overseeing these functions: mood, stress, energy, memory, sleep, immune system, sex, circulation, bones, joints, weight, skin and hair.

Interestingly, the symptomatology that is a result of neuroendocrine dysfunction is the same symptomatology of that which is labeled post concussion syndrome. The symptoms include but are not limited to, memory loss, attention difficulties, insomnia, impaired cognition, fatigue, depression, anxiety, mood swings, personality changes. Instead of screening for and identifying such dysfunction, a patient may be labeled with post concussion syndrome and continue to suffer with many debilitating symptoms for years.

Dr. Gordon has had great success helping many veterans who have been diagnosed with PTSD by using these protocols and has found the root of that diagnosis is most often chronic inflammation and this dysfunction secondary to brain trauma. The issue is that these patients, such as myself, are treated with pharmaceutical medications for the symptoms but these pharmaceuticals do not address the underlying cause of inflammation and do not replenish the deficient neurosteroids.

This is not typically taught in medical studies. I wish I had known about this prior to my injury. Suggestions from Dr. Gordon and others about screening for this have come to light. Dr. Gordon recommends screening as soon as possible after TBI as a baseline, followed by hormone panels at 3, 6 and 12 months from the initial testing. Another suggestion is to order a hormone panel at 3 months post-injury if symptoms suggest neuroendocrine dysfunction or if there are delayed symptoms at any point up to 3 years post-injury.^4-5

Despite the thousands of articles available demonstrating the connection between TBI and hormonal dysfunction for more than a decade, this is still a very under-diagnosed consequence of brain injury that is not typically screened for in patients. It’s hard to ignore such research and statistics and say that this would play no role in brain injury recovery.

Conventional Medicine Failures

I want to preface this section by saying, I do believe conventional medicine has a place and I also did have positive experiences with a select few providers in conventional medicine. This is a reflection of my own personal experience and failures of conventional medicine for the treatment of my traumatic brain injury. My frustrations and disappointments are valid and I feel it is important to share them as I felt I didn’t have a voice in this process for so long and I know many others have felt similarly. I am a prime example of a patient with chronic ailments that fell through the cracks of conventional medicine and I hope this can save another from this major fallout.

At some point during my recovery, my treatment started to feel redundant, like the same things were recommended over and over again. The end result was the same – I still felt miserable or even more miserable. It felt as if I were banging my head against a wall. It reminded me of Albert Einstein’s quote about insanity. I feel like that accurately sums up the treatment I received for over two years with the exception of a select few practitioners that provided meaningful benefit.

The definition of insanity is doing the same thing over and over again, and expecting different results.
Albert Einstein

Throughout my recovery, I found that I, as a person, wasn’t being treated but rather my symptoms were being treated and, in the end, this helped foster the identity crisis I was already experiencing.

Unfortunately, I became faceless. The 13-year-old girl who had been seen for a head injury before my appointment was given the same treatment as me, just as the 40-year-old male who was seen after me. We were all the same. I know this after connecting with other TBI sufferers and hearing their experiences. It was as if the “individual” was taken out of the treatment plans.

I had seen dozens of specialists, each dissecting me to only peer inside one system. It reminds me of my days in the cadaver lab, as we dissected each system. Soon after the injury I was seeing 20 different providers for each symptom I was experiencing, none communicating with each other and so instead of a whole being I became this long list of symptoms. They were so zoomed in on one tiny part but never zoomed back out to look at the big picture, to look at how important it is for all of the intricate systems to work together again. The big picture was me as a person, but the big picture was also seeing that an underlying cause led to all of my residual ailments.

In my darkest moments, I was desperate for help. I was desperate to be heard. I was desperate to just be seen.

When I wasn’t making progress and wasn’t getting better, I was usually told a variety of things: “Try this new medication. Just give it more time. It’s all in your head. There is nothing more to offer you.” It felt like I was fending for myself because my providers gave up on me and my healing. This was so detrimental to my mental health to know that the very people who were supposed to help me gave up on me. The very people who were supposed to see me looked past me. I was crying out for help but couldn’t be heard.

I didn’t want to give up but this made me feel like maybe I should.

I’m one of the fortunate ones who did not give up. I thank my friends and family who helped carry me when I couldn’t carry myself. I continued to research more options and continued to present them to my doctors. Unfortunately, almost all of them did not believe the treatment options I was presenting to them were worth exploring. So, not only did it feel like they gave up on me and stopped offering me options, they also told me to stop exploring options too.

My providers who I was supposed to trust stopped problem-solving and advocating for me. They left that to me – the person working with an ineffective and dysfunctional brain, running on almost no energy like a car with its gas light on about to stall. I was fending for myself, working tirelessly with poor vision and depleted energy to get better.

The field of medicine is amazing and astounds me because it is ever-evolving and ever-changing. I became frustrated that my providers closed their minds off and stopped seeking new options and solutions. Aren’t we as medical providers supposed to be detectives of the human body? When did this change?

My treatment plan had been focused on symptomatic relief, and not full healing. This was because the thought process was that there was no room for improvement, no potential for full healing, and the only thing left to offer me was relieving the long list of symptoms I was left with. Unfortunately, most conventional medicine practices involve dishing out more and more medications. This typically leads to more medications being prescribed to combat the side effects from a medication initially prescribed.

Throughout my recovery, I had been on nearly 30 different medications, all with deleterious side effects. How does someone go from being on no medications to this? I was embarrassed to sit down every week to fill up my pill boxes because I couldn’t remember when to take the many pills I was on. These “treatments” only masked the symptoms and caused worsened effects. None of these different medications could have replenished my deficient levels of hormones!

The Start of Getting My Life Back

I did not expect my world to change when I walked into Dr. Donaldson’s office that day in February, but it did. That day is one I will never forget. It was the start of getting my life back.

The positive effects since then have been abundant. This visit started with a comprehensive lab work-up, a detailed history of treatments leading up to that point, my symptoms and my goals. The lab tests assessed how well the hypothalamic-pituitary axis was functioning and how the peripheral glands of the endocrine system were functioning. The treatment is individualized as no person is the same, just as no brain injury is the same.

How refreshing it was and is to be treated like a person and to not be placed in a bucket with every other patient and receive the same exact treatment. I am finally receiving an individualized treatment plan, and one that focuses on me as a whole. How refreshing to know that my doctor believes I can heal.

Dr. Donaldson’s lab work-up showed various significant and impressive hormonal deficiencies, more than I had anticipated. Instead of masking the symptoms with many pharmaceuticals, she works hard to identify the underlying cause and then treats accordingly by addressing inflammation, replenishing deficient hormones and providing additional support with nutraceuticals. Not only does she work hard to identify the underlying issues but works hard to put everything back together, to function in harmony as the body is supposed to.

This treatment protocol is multifaceted and ever-evolving. At each appointment, we go over everything in detail, determining if anything needs to be added or subtracted from the treatment protocol. Dr. Donaldson described it like a game of chess – a well thought out process, determining the next move to healing. I deeply appreciated this thought because where many providers would say there is nothing left that they can do for me or try the same thing on repeat to no avail, I know that Dr. Donaldson will not give up on me and is always thinking of what else can provide further benefit.

Shortly after I started a secretagogue to increase growth hormone production, I had the first glimmer of what quality sleep felt like again. I slept through the night for the first time in years. It felt like I had gone into a coma. I woke up and felt so strange that I had slept through the night that I moved my limbs to ensure I was in fact, alive. While my sleep is still a work in progress, I am deeply grateful for the spontaneous nights of sleep I have experienced since starting treatment.

Similarly, after starting testosterone replacement therapy, I had so much energy that I again felt strange. I felt like I could run a marathon. For the record, I would rather do any other activity than go running so that shows how exceptionally strange I felt. While I still experience fatigue, it has been refreshing to feel moments of energy again. I also noticed an improvement in mental clarity as well as a reduction in my nerve-related head and neck pain as testosterone helps to heal ligaments and joints.

One day recently, I started to develop an all too familiar migraine, one that would typically go on to last seven days straight and would not respond to any medications. It seemed like a miracle that the right dose of progesterone that Dr. Donaldson advised me to take rid the migraine completely within just a couple hours. After that, she said to me, “You are in control!” No provider has ever said that to me and that was one of the best and most empowering things to hear. For so long, I had felt like nothing was in my control.

I recently experienced the Light Portal at my last visit which I am now in love with based on my extremely positive and enlightening experience. This is an apparatus that uses light, color and sound, producing a profound and relaxing energy through the body. It is magical. I describe my full experience here. I look forward to future Light Portal sessions.

During my most recent visit, we also initiated exosome therapy. I am interested to see what benefits I may have. Derived from stem cells, exosomes are extracellular vesicles or tiny bubbles carrying genetic material and proteins. All living cells communicate with other cells and these are the messengers. They are like little envelopes, carrying important information that is released to promote cell repair, regeneration and healing.

Since beginning this treatment a few months ago, I have experienced the most progress I have since my injury, just over 2.5 years ago. Just the other day, I went on my first successful drive after countless failed attempts over the course of my recovery. And since then, I have gone on several more successful drives! Liberated just doesn’t cut it.

While I am still a work in progress, the newfound hope instilled in me brings me to tears. I know my recovery will continue to ebb and flow, but I now have a new perspective on what is possible. And I’m not letting anyone take that from me again.

An Evolution in Mindset

Aside from addressing my hormonal imbalances, chronic inflammation and the physical aspects, Dr. Donaldson has challenged me to change and evolve my perceptions about my limits. I didn’t realize until recently just how many limiting beliefs were instilled in me from this brain injury. It was a culmination of the injury and doctors telling me there wasn’t potential for improvement which then led to my own self-destructive thoughts and beliefs. The result was a lie that I convinced myself was true – an enormous lie that I couldn’t get better, that life as I once knew it was gone, that I would potentially never be able to work in medicine again.

“There is one grand lie – that we are limited. The only limits we have are the limits we believe.”
Wayne Dyer

I was convinced I couldn’t get better because that’s what I was told. I tried so very hard to repel this belief but eventually, after hearing it over and over, I believed it and stored it within me. Even if my conscious mind said I will get better, the subconscious was holding onto that limiting belief, restricting me from my healing potential.

I’ve thought I’m not good enough or I’m not capable. Retaining new information is nearly impossible. The judgment of other people matters. My eyes are stuck like this. I can’t get better, therefore I am a failure. My brain is stuck like this. This is my new normal. This is the best I’ll ever get. These were messages sent to myself, restricting my potential. I hadn’t realized I was really doing this.

This evolution of mindset, in motion with other treatment modalities such as using neurosteroids where I am deficient, regenerative therapies, nutraceuticals and Light Portal has been a power force. While I still have a lot of progress to make, this has been a major kickstart to my healing.

A Reflection in Gratitude

How often do you walk into a doctor’s office and think, this person is going to change my life? How often do you walk into a doctor’s office and think, this person will end up feeling like family? For me, that’s rare. Truthfully, even as a medical provider myself, I had grown to hate going to appointments because they had become filled with despair and negativity. I left the appointments with immense anxiety and hopelessness. All of this changed at the Regenerative Medicine Center.

Throughout my career in the emergency department, I would receive a seemingly random positive experience review from a patient, describing how meaningful I was to them in that moment. It would often come as a surprise that I deeply affected that person and that I had left such a lasting impression. The effect you have on someone is more valuable than you may think.

You never know when someone will alter the course of your life for the better. And a lot of the time, you may not know just how great the impact or lasting impression you left on someone. It’s amazing and miraculous really that one interaction with someone has the power to change the course of your life. Think about how many people you may have touched deeply in your life but don’t ever know about it. Think about all the people who, in one moment or another, you felt so grateful for or still do and they don’t know it. This might have been a cashier at the grocery store, a nurse, someone you simply lost touch with but still think about, or even a stranger you struck up a brief conversation with. A simple, “Hello,” could be the start of an impression of a lifetime.

Sometimes we stop and express our gratitude but often we don’t because we might feel we don’t have time or, for me on various occasions, fear that it may be perceived as creepy to someone you don’t know deeply or just met. During so many moments of reflection about myself, life, love and the world, I think we should proclaim how we feel in those moments. Just that small expression may very well make the person’s day. We never know what burdens someone else may be carrying and that simple message could also be the thing that lifts their spirits and keeps them going.

I recently read a time capsule that I wrote in grade school when I was 9 years old. The time capsule included little prompts with a blank line after each one. We put them in an envelope addressed to ourselves to open five years later. I revisit it from time to time. One prompt read: Before I die, I hope __________. I wrote on the line: I say I love everybody. From a young age, I had this deep desire for everyone to feel love. I think it is so important, now more than ever, to share our gratitude and love and put it out into the world.

As I walked into the Regenerative Medicine Center that cold day in February, I was hopeless and desperate. To be completely honest, I didn’t have many expectations at that point in my recovery. I was desperate for help, to be heard, to be seen. It was in my darkest moment that I needed a lifeline and I got one.

I received help. I was heard. I was seen.

Dr. Donaldson altered the course of my life for the better. She is now associated with hope, light and all that is good. A lifeline. A connection I will never forget. She was a stranger, became my doctor and then became family. It’s amazing to think about how many people we may have touched deeply in our lives but don’t ever fully know about, so I wanted to take a moment to say, Dr. Donaldson has deeply touched mine and left a lasting mark on my heart and soul. She is a bright light, reminding me that healing is in fact, possible.

This is someone you want in your corner. This is someone who can get you your life back.

Someone asked me, “So, Dr. Donaldson is alternative medicine?” I replied, “Dr. Donaldson is an alternative to bad medicine.”

Sources

1. High Risk of Hypopituitarism after Traumatic Brain Injury: A Prospective Investigation of Anterior Pituitary Function in the Acute Phase and 12 Months after Trauma, 2006, DOI: 10.1210/jc.2005-2476

2. Neuroendocrine dysfunction in the acute phase of traumatic brain injury, 2004, DOI: 10.1111/j.1365-2265.2004.02023.x

3. Acute and long-term pituitary insufficiency in traumatic brain injury: a prospective single-centre study, 2007, DOI: 10.1111/j.1365-2265.2007.02931.x

4. Neuroendocrine dysfunction following mild TBI: When to screen for it, 2014.

5. Traumatic Brain Injury, A Clinical Approach to Diagnosis and Treatment, 2016.

6. Neuropsychology and clinical neuroscience of persistent post-concussive syndrome, 2008, DOI: 10.10170S135561770808017X

7. Hypopituitarism After Multiple Concussions: A Retrospective Case Study in an Adolescent Male, 2007, PMID: 18060001

8. Pituitary function in subjects with mild traumatic brain injury: a review of literature and proposal of a screening strategy, 2010, DOI: 10.1007/s11102-009-0215-x

9. Neurobehavioral and quality of life changes associated with growth hormone insufficiency after complicated mild, moderate, or severe traumatic brain injury, 2006, DOI: 10.1089/neu.2006.23.928

10. GH deficiency as the most common pituitary defect after TBI: clinical implications, 2005, DOI: 10.1007/s11102-006-6047-z

11. Neuroendocrine Dysfunction in a Young Athlete With Concussion A Case Report, 2017, DOI: 10.1097/JSM.0000000000000408

A Beautiful Day for a Drive: A Huge Victory

You know how people joke that they need to turn down the volume of the radio in the car to see better? I have truly felt that over the past two and a half years. It has been exceptionally difficult for me to focus or comprehend something if there’s background chatter or noise. Even without any background noise, my driving attempts since the beginning of my recovery have been failed attempts.

I woke up today and felt this overwhelming momentum. I felt like this would be a good day to attempt driving again. I am unable to exercise at my Mom’s gym as it is too busy and overwhelming for me inside. So, I go to a recreation center that is calm inside, about one mile up the road. I rode in the car with my Mom to her gym and got into the driver’s seat to drive myself to the rec center. This was a big moment.

Today was a beautiful day of warmth and sunshine. I sat in the driver’s seat for a moment, closed my eyes, grabbed the steering wheel and took a big breath, purely feeling everything as to ground myself. I opened my eyes, then the windows and felt ready. I drove through the parking lot towards the street in silence. I then had this urge and turned on some music and started making my way to the rec center just up the road. I put my hand out the window and felt the sun and warm breeze flowing through my fingers. It was electric.

About two minutes into the drive, I felt it in my being that this time was different. It felt like my eyes would cooperate and that the intricate systems of my brain would communicate. I didn’t feel cross-eyed, dizzy or have a headache like the countless attempts over the past two and a half years.

Pure bliss.

I couldn’t help but smile big and out of nowhere, tears started streaming down my face. The warmth from the sun and the breeze through my hand felt like it penetrated my soul. I made it to the rec center and started sobbing while simultaneously smiling so big until my face hurt.

I sat there in the parking lot and cried so many happy tears. At that point, I would have already developed a migraine based on my previous driving attempts. Rolling with this energy, I went into the rec center where I completed my PT exercises.

Still smiling, I got back into the car, turned on the music and rolled down the windows. I closed my eyes, again breathing it all in. I started my drive back to my Mom. The entire drive back, I had the biggest smile on my face and again the tears started to flow.

My Mom asked, “So, how did it go?” I looked at her and started sobbing. Naturally, she immediately thought it went very badly. She said, “Oh my gosh, what happened? What’s wrong?” I said, “It was so good and I am so happy. I forgot what that felt like.” That is a moment that will stick with me for a very long time.

There are no words that can fully describe the experience of driving with the windows down, hand out the window, feeling the warm breeze through your fingers while listening to good music. It was so liberating. I didn’t realize just how freeing until I lost the ability to experience that. This was one of the many things in life I took for granted before this injury – a simple drive. Next time you go for a drive, take a moment to really feel it. All of it.

I was on cloud nine and I still am! It made me feel whole. Even though it was a short drive, it was something I haven’t tolerated on many attempts leading up to this point. I will never take even the shortest drive for granted again. One might call this a small victory but I call this a huge victory.

In this moment, I am rolling with the wave of good energy and momentum and hope there are more positive advancements to come! Little by little, I hope to get back to full driving. My goal is to eventually be able to drive myself to future trips out to Pittsburgh. That is a big goal but I am set out to do that. And when that happens, the drive itself will be all the celebration I need.

The Psychedelic Light Portal: Another Pittsburgh Adventure

I just returned home with my Mom from another trip to Pittsburgh to visit my family and awesome team at the Regenerative Medicine Center. Right on topic with my most recent posts about mental health and well-being, I had the privilege of experiencing the Light Portal and its profound benefits.

The Light Portal, an unsuspecting wooden apparatus with psychedelic lights, amazing acoustics, sound and vibration in harmony, took me to a different realm. I wasn’t entirely sure what to expect. I am so grateful that I not only experienced it but that I had a beautiful experience. I joked that I was stepping inside a time capsule. It turned out that I really had no concept of time. It is difficult to fully articulate the experience but I am going to attempt to describe it.

As I am writing this, after three Light Portal sessions, I am experiencing the most energy I have in a very, very long time. It has been such a long time that I can’t even remember when I had such energy.

I have written quite a bit about how I have incorporated a meditative practice into my life to help with my recovery in which I have used many different modalities to reach a meditative state. Even with the help of these devices and apps, it can still be extremely difficult to reach a calming state.

After a stressful morning, I went into my first Light Portal session with a lot of stress and tension. It didn’t help that I was also running on one hour of sleep. I didn’t know if I’d truly be able to relax. I went into it with no expectations, but was hoping that it would help me in some way. I entered the Light Portal and laid down. Looking up, I could see the colorful lights with many light bulbs producing a trippy scene. The music cued and the grand experience commenced.

I closed my eyes and started focusing on my breathing. I was initially overcome with so many thoughts that it was overwhelming. My mind scattered all over to various moments and places in my life. I started reflecting on not just my most recent TBI but the many before, spanning my entire hockey career. Tears began streaming down my face and I didn’t know why. I then started picturing myself laughing, smiling and in full health. I reconnected with my youthfulness which I had felt so disconnected from.

As time went on, which again I had no concept of, my scattered brain and thoughts became calm. I felt as though I was transported to a different dimension, to a very spiritual place in which I had no pain. My body became so calm to the point that my limbs felt extremely heavy yet I also felt extremely light at the same time. My headache, neck pain and tension melted as I was transported. It felt strange having no head pain as I have been living with some form of head pain every day for the past two and a half years. I reached an entirely different level of calm and peace that I had never experienced before.

After the first two sessions, I slept through the night with only a few interruptions. This was a huge win for me as I still struggle with intense insomnia, waking up dozens of times through the night and sometimes not sleeping at all. The best part was that I woke up the next morning with energy and a new sense of well-being. I thought, this is going to be a good day. The energy was so bizarre to wake up to. I had wondered what was going on. What is this feeling? This is strange. I had completely forgotten what that felt like.

It made me realize that my energy for so long had just been going towards survival. Just surviving isn’t truly living. As I have come to fully realize over the past several months, spiritual healing is just as important as physical healing and maybe even more important. How can we possibly fully heal our bodies if our spirit is broken?

My last session in the Light Portal was even more moving than the first two sessions. The fog had lifted. It was a new level of peace I hadn’t experienced. Physically, after the session, I had no pain at all. I anticipated if I received a benefit that it would have been all spiritual and emotional but it turns out that the physical benefits were also astonishing.

I had seen my physical therapist after my sessions. He usually comments on how my neck feels like cement. This was the first appointment in over a year since starting PT that my neck and head had felt great. My physical therapist said to me, it was the softest my neck had ever felt. It’s quite amazing that the manual work on my neck couldn’t produce such a result but the Light Portal could.

More realizations had surfaced. I had lost touch with many things that still make me, me. None of the meditation apps or devices I have tried during the past two and a half years could have given me the same experience as the Light Portal. Transformative is an understatement.

I had been focusing on maintaining positive thoughts for so long but finally realized that my subconscious was holding onto negative beliefs and negative thoughts. It feels like a barrier deep within had been broken open, granting me a fresh and new perspective.

I have a different perspective on life and I look forward to what is to come. I realized that my healing does not fit into a box, ironically as I laid in the Light Portal apparatus that resembles a large wooden box. What I mean is, I’ve come to realize that the labels we use in our society restrict us and place limits on our potential. Everyone’s healing is different. I had been told many different things by various doctors through this time period, telling me there was no room for improvement, that this was the best I would ever get. I needed to accept that this was my “new normal.”

These are all restricting thoughts and they just aren’t true. I had been acting on seeds planted in my mind, on limiting beliefs, that weren’t true. I had started saying the same things to myself, beating me down further. What this left me with was a low belief in myself, in my worth and what is possible. The faulty program that I had become accustomed to in my brain was not efficient and was restricting me from my goals and my well-being.

A quote by Albert Camus came to my mind: “And never have I felt so deeply at one and the same time so detached from myself and so present in the world.” It was as if all that I thought about myself and my recovery, the preconceived ideas, the negative core beliefs and blocks to healing were released. I was released from those thoughts and ideas as they didn’t fit anymore. A block within me had lifted. There was no question about my identity or who I am. My heart and soul were at once the harmonious frequency that is me.

Finally, I could breathe in contentedness and be present in the world. I could just comfortably be. During my last session, I began to smile. For a long time, I thought that being content was a negative thing because if we become content, we will stop striving for growth and become stuck in a robotic routine even if it doesn’t suit our desires and dreams. The definition of content is “a state of peaceful happiness.” Finally at peace and finally content, I realized this feeling was a positive achievement and could not have felt more freeing.

Being alone with my thoughts during this recovery has been scary at times. I have been living in a hypervigilant state for so long where typical, harmless every day occurrences are perceived as threats. Negative thoughts and ideas were also threats. I was alone with my thoughts in the Light Portal and something I felt to my core that recurred over and over in my sessions was: I am safe.

I realize and fully know now that healing is possible, that I am enough, that my former self isn’t lost, that deep within I am radiant with health and youthfulness, that my spirit is intact, that those restricting thoughts and inputs can be repelled. What is light and good can penetrate and that is what is necessary to live a meaningful life filled with love, happiness and purpose.

I am so grateful for the momentum provided by the Light Portal.

Here’s to light, love and healing!

“nothing’s for keeps except that we must keep going.”

During this long recovery, my thoughts have wandered, taking me back to various moments in my life like a time capsule. It has been a period of reflection, growth and self-awareness. There has been a major disconnect in my mind, body and soul. While I have gone back to specific moments and reflected on them to positively contribute to personal growth, I have also found myself deeply yearning for the past at times and wishing I could rewind and do things differently.

This yearning for the past was prolonging the inevitable – facing and processing what had happened in its entirety. I couldn’t possibly become at peace and connect my mind, body and soul again if I weren’t present and always looking back, wishing I could live in the past. It took me a long time to realize this recovery isn’t just about physical healing but also emotional and spiritual healing. I couldn’t possibly be at peace by bottling up the trauma and storing it in my body. It has taken a lot to process everything I had bottled up for so long, and something I am still working on. I am still learning how to be completely present, to be transparent, to fully acknowledge what I am currently feeling, and to truly accept that my feelings are valid and I shouldn’t be ashamed of them.

It’s uncomfortable in our society to talk about mental health issues. I feel it’s really important and shouldn’t be downplayed or shunned. Throughout this time period, I have slipped into depression and have struggled a lot with anxiety. I think back to setbacks during my recovery, to such big setbacks I wanted to die. There were times where I thought, this is the end. I can’t keep going, I can’t keep fighting. The prospect of feeling no pain anymore seemed so much better than reality.

Looking back, it’s hard to understand fully how I got through those times because in those moments it really did seem impossible. It amazes me actually to the point where I picture myself in those moments and it’s like I don’t know that person, similar to how I picture myself lying on the ice after that big hit and it’s like I am looking at a completely different person. Who is that person? How did I get to this point? I’ve detailed my experience with identity crisis. I felt shame and embarrassment that I was experiencing that, constantly trying to diminish or belittle my thoughts and feelings. I was resisting change which in turn was resisting healing.

Through the help of loved ones and a lot of work with my therapist, I have gotten to a point where I am okay with the fact that maybe I’m not that same person. While some parts of us are constant, there are always parts that are changing. Change is always going to be uncomfortable and a lot of times, scary. I think it would be even scarier if we never changed or evolved, living like robots and suppressing how we are truly feeling. I have thought about this quote a lot lately by Joan Didion: “I have already lost touch with a couple of people I used to be.”

I’ve written about impermanence a lot. In just a split second, everything can change. One second I was having fun and doing something I loved with energy, focus and love, to losing my job, passion, energy, focus and well-being. Just like that…everything can change. Time is such an interesting thing, isn’t it? Sometimes you wish it would stand still, sometimes you wish for it to rewind, and other times you wish it would move faster.

I’ve looked back at things I have journaled over the course of this recovery. One day, I wrote over and over again, “This is temporary. This is temporary. This is temporary.” This was an attempt to keep me going, to remind myself that every bad day comes to an end. This rough stretch of bad health can’t last forever. This won’t last forever because no moment does. Thinking back to moments I didn’t think I’d make it through…they passed. Sometimes while you’re in the thick of it, you can’t think or see clearly and the darkness can overtake you and cause any bit of hope to evaporate.

Something that has recurred over and over in my mind during this recovery is a piece of art I came across as I was wandering the streets of Boston several years ago. I had arrived a few days early before anyone else for my brother’s wedding. I was going through a rough patch at the time – I had experienced a devastating heartbreak and it felt as though time stood still and I was marinating in the pain.

As I was wandering in an attempt to get lost and not be so consumed by sadness and what had occurred, I came across an amazing piece of art. It stopped me in my tracks and I felt like I was supposed to come across it at that very moment. I stared at it and started weeping. I stood there for what seemed like hours, like I was an inanimate object in a time lapse as hundreds of people walked around me. It was a 319-foot long message along a chain link fence that read, “nothing’s for keeps except that we must keep going.”

This message resonated through my being and still remains true. It reminded me that time is precious, that neither the good or bad times are permanent. It reminded me that we need to hold on dearly to the good moments but also know that the bad times aren’t for keeps.

As I have mentioned recently, the new treatment program in Pittsburgh has brought me hope for the first time in a very long time. Over the past couple months, I have felt a shift in healing, not just physically but emotionally. While I still experience bad days, I am hopeful and know that a bad day will always come to an end. The sun will rise tomorrow and give me an opportunity to start fresh. I admit, I still have days where just making it through the day is my biggest accomplishment but that’s okay.

This recovery has been draining, heartbreaking, and a lot of my thoughts for so long were hung up on everything I had lost, everything I was missing out on. The past several months, my thoughts have shifted to everything I have gained. And most of what I have gained is a deeper understanding of myself, my place in the vastness of the world and seeing things from a different perspective. I am still not at a place where I can say I am grateful that this happened to me and maybe I never will, but I can say I am grateful for the growth and everything I have learned and am still learning.

With the new treatment, good days have become more prevalent. I hold on to those days so much, and hope that as time passes the bad days will become less and less until there will be all or mostly good. That’s inertia.

On the bad days I remind myself that I must keep going because this will pass and there are lighter days ahead. Bad days aren’t for keeps. At any given moment, we are all experiencing something that we may not talk about, things that are heavy to carry. Here’s to whoever needs to hear this:

“Nothing’s for keeps except that we must keep going.”

Apps, Gadgets and Tools for TBI Recovery

This is a list of various devices, tools and apps I have tried during my recovery for reducing and improving residual symptoms. Some have provided meaningful benefit while others fell short. I’m going to put the particular apps and gadgets I have found most helpful at the beginning of the list. You can check them out at their respective websites by clicking on the title of each app or device. As I try new things, I will update this post and add them here.

Speechify

This is an app I just recently discovered. It is great for me because of my vision troubles. It is an app similar to audiobook but it reads anything you want. I like to read books, medical articles, and much more but have been limited and it takes me a very long time to get through anything these days. I open the app, take a picture of what I want it to read on my phone, scan it in and it’s ready to go! You can play what you scanned in at any time. It’s free with a caveat. If you want a better or more natural sounding reader, you have to upgrade to the premium version which in my opinion is worth it. Otherwise, it is very distracting having a robot-y voice reading to you.

F.lux

This is a free app that I have on my home page of my site because I have used this for a long time now and have found it extremely helpful especially for light sensitivity and eye strain. Research has shown that various levels of bright light before bed at night can disrupt sleep and melatonin production, especially with blue light that is emitted by all of our screens. This app is great for screens as it adjusts the frequency of light emitted to your eyes. You can change the settings to your waking time and bedtime and it adjust the light in a natural cycle following a natural circadian rhythm. So, if you are staring at a computer screen all day, the light emitted naturally fluctuates and towards the end of the day and pre-bedtime the blue light will be reduced automatically. If you are an android user, I believe there is a similar app called Twilight, however I can’t speak to that because I haven’t used it.

Bonsai Occipital Release Tool 2.0

This is a great device and one that exceeded all expectations because quite frankly, I had none. How could this little block actually relieve any of the terrible neck pain and headaches I’ve been experiencing for so long? I was shocked after using it for just 10 minutes that my headache and neck pain were significantly reduced. It works by providing gentle pressure to the suboccipital (just below the base of the skull) muscle trigger points, resulting in less stiffness which then leads to less head pain.

TrueLight Luna Red Sunset Sleep Light

This lightbulb has been amazing. I truly love it. Similar to how f.lux changes the light frequencies emitted from your screens throughout the day, this lightbulb does the same. It comes with a remote control so you can adjust the light setting. This lightbulb is low blue light emitting at all times and has the ability to emit just red light. I put the red light on at night about 1-2 hours before bed as red light does not interfere with our circadian rhythms. It has helped me fall asleep faster and when I wake up in the middle of the night I can switch that on instead of causing further disruption with bright lights or the light of my phone. I’d highly recommend it.

Sensate

This is a meditation device that I have used for about 6 months now. I’ve used many meditation apps and a couple devices and this seems to be the best one. It looks like a large pebble that you rest on your sternum (chest bone). You turn it on and sync it to the app on your phone. It vibrates on your chest and synchronizes to the music from the app. The vagus nerve which is involved in activating the parasympathetic nervous system (rest, relaxation) is stimulated by sound and vibration. This device combines sound and vibration to help tone the vagus nerve, leading to a sense of calm. It is pricey compared to other products but in my opinion, it is worth a try if you are experiencing stress, anxiety or sleeping troubles.

Insight Timer

This is a free app for meditation. It is great because there are so many meditation options to choose from based on what type and the duration. Also, there are so many different voice options. Finding a voice to meditate to can be difficult but with the hundreds and thousands of options on this app, you will definitely be able to find a voice you like that is calming. I’ve used this one a lot and highly recommend it.

Swanwick Glasses

These blue light blocker glasses are great for evening and before bedtime. I guess the cool kids call these “Swannies.” They are supposed to help block the blue light that could harm your natural circadian rhythm and melatonin production. They help with light sensitivity as well. I find them particularly helpful when riding in the car at night as they reduce glare and decrease the blinding headlights of cars.

Omax Cryofreeze CBD Pain Relief Roll-On

This roll on is made from CBD, menthol and some other herbal extracts that aid in relieving muscle stiffness and pain. This has been helpful for temporary numbing of pain and stiffness. It is similar to the icy hot feel due to the menthol and peppermint oil in it. It isn’t a long-lasting solution but does help provide some temporary relief.

Dohm Noise Machine

This is a white noise machine which has been amazing for helping to drown out the ringing in my ears a bit. I never travel without it now. It has helped my insomnia a little bit as the tinnitus can get very loud at night. They now make different versions that play different sounds. Mine is straight up white noise. I love my Dohm!

Heart Math InnerBalance

This is another meditation device. You attach a sensor clip to your ear which plugs into your phone and then open the app. As you breathe, it senses your pulse through the blood flow from your ear and shows you what zone you are in. You aim to be in the “green,” so it gives you real time feedback on how you are performing and you can adjust your breathing accordingly. It tracks your coherence level and heart rate variability (HRV). HRV is a measurement of beat to beat activity of the heart and how it fluctuates. The normal variability in HR is due to the synergistic effects of the parasympathetic and sympathetic nervous systems. The app gives you real time data on HRV, giving you a small window into how balanced these branches are. Physiological coherence means how well the heart and brain are united and the measurement given shows how well your mind and body are in harmony. Interestingly, if I am feeling very anxious and I do a session, I can tell based on the graph because of how it is jagged and all over the place. Usually by the end of the session, I can get it to be a nice fluid wave pattern and feel more relaxed. I have found it to be helpful and the graphs giving real time feedback is nice for comparison after sessions.

Bose QuietComfort Noise Canceling Earbuds

These noise canceling earbuds worked wonderfully. I am still very sensitive to noises and with the intense ringing in the ears it is nice to drown that out. It also really enhanced focus. I ended up returning them because while I loved the sound, my ear canals hurt with all sizes of the ear buds. They have over the ear noise canceling headphones too but I have not tried those. If you are noise sensitive or need to increase focus, I’d recommend trying these out.

Polar H10 Heart Rate Sensor

While this gadget doesn’t necessarily provide pain relief or healing, it is a useful tool to monitor and track heart rate during recovery as there can be a threshold where you become symptomatic. It is a chest strap that has the heart rate sensor attached to the front of it. This specific device has been studied extensively in research which I like. The app for the sensor is great because you can set it to notify you when you reach a certain heart rate and can back down your activity level if you need to. I love this device for PT and training. The app allows you to track your heart rate data by providing you with graphs and statistics.

Motion Guidance Visual Feedback Rehab Laser

This comes as a kit with a tracking target that sort of resembles a tapestry and a headband with a laser on the front. You put the headband laser on and slowly outline the design on the target (mine is shaped like a butterfly) by gently moving your head. It also has a circle with numbers on it that I can track with the laser. This has been helpful to re-train and re-educate the smaller, stabilizing muscles of the neck as well as tone my fine motor skills. It also helps train proprioceptive awareness or where your brain thinks you are at in space. Lack of proprioceptive awareness following TBI and whiplash is quite common. With practice, some of these exercises have become easier and I have improved proprioceptive awareness.

Optix 55 Heated Eye Patch

This is an eye mask that produces moist heat after you warm it up in the microwave. It is actually marketed for dry eyes but it is soothing to put it on when there is a bad headache or migraine.

Joovv

This device is a red light therapy device using red and near-infrared light. Red light has been shown in studies to promote healing by reducing inflammation and providing energy to your cells. This specific light has been shown in studies to promote improved mental well-being, healthy skin, inflammation, improved blood flow and sleep. It is soothing to use while meditating. I haven’t noticed any huge improvements in pain but while using, it does feel soothing and relaxing on the affected areas. I like to believe there is healing going on at the cellular level. This is a very expensive device. Shout out to my friend who gifted this to me!

Echo Sidekick Tool

This is a muscle scraping device used to stretch and ease muscle tension and aid in recovery. It is a stainless steel tool that you scrape along your muscles to stretch the muscle fibers and increase blood flow to the area to promote healing. While it does work great for many areas of the body, I haven’t found it to be helpful where I need it the most, my neck.

Power Dot Smart Muscle Stimulator

This is a TENS unit which sends electrical pulses through the skin. The theory behind TENS units is to stop pain signals from being sent to the brain and to naturally produce endorphins. I haven’t been entirely convinced in my whole athletic career that TENS units have really done anything for my muscle recovery and related pain but I wanted to give this a shot as there was a lot of rage over this device. Compared to the cheap TENS unit I bought on Amazon a few years ago, I think it does the exact same thing. To me, it just looks fancy and has an app to go with it but if it works for you that’s great! Personally, it wasn’t worth the expense for me.

Hyperice Hypervolt Percussion Massager

This is a massage gun. I was really hoping for relief from tension and pain in my neck and traps which would then hopefully help the headaches. Unfortunately, I think the power of this device is more in tune with the size of an NFL linebacker’s neck because it destroyed my bony neck. It worked great on the quads and hamstrings though! Unfortunately, that’s not what I need.

TrueDark Twilights Classics

This is another pair of glasses used to block certain wavelengths of light. These have dark red lenses that signal your body that it’s bedtime. They are supposed to be used 30 minutes to 2 hours before bed to prevent melanopsin from detecting wavelengths of light that could disrupt sleep if sensed before bed. Melanopsin is a protein in the eye that sends signals directly to the brain as it absorbs light, regulating circadian rhythm and sleep through the production of melatonin. These do not only block blue light but also block green and violet. I could not get used to these as everything is dark red. The concept is great but they didn’t work out for me. It has nothing to do with how absurd they look either. They sort of make you look like one of the animated characters in The Incredibles, which could be kind of cool for a superhero costume.

Aculief Wearable Acupressure Headache Relief Device

This is an acupressure device that you put around your thumb and it applies pressure to a specific pressure point on the hand which has been used to treat headaches for thousands of years. Unfortunately, it did not help with my headaches. The good thing is it is cheap and can be worn anytime and anywhere. I think it is worth a shot. Shout out to my brother and sister-in-law for gifting this to me!

Yogu Acupressure Mat

This is a mat that has many plastic points that press into your back and neck to serve as acupressure points along meridian lines of the body. The goal is similar to acupuncture – improve the energy of the body, reduce pain and tension. The pillow worsened my head pain but the mat itself did provide some mild relaxation. It wasn’t a meaningful change in symptoms for me. Shout out to my Mom for the gift!

Cervical Neck Traction Collar Device

This one sort of looks like a flotation device that goes around your neck. You blow it up similar to the same way you would blow up a blood pressure cuff. As it blows up, it provides traction to your neck to stretch out the space between the vertebrae. I tried this and it didn’t work for me. In fact, it did make my headache a bit worse. I also tried it out on 4 different family members who all thought it worked great and alleviated some sort of pain in the neck and head. I am the anomaly. In this small group, it helped 4 out of 5 people. I’d say it is worth a try for the price.

Lazarus Naturals CBD Balm

This is a muscle balm made from CBD and essential oils to aid in pain, tension and stiffness. Unfortunately, it did not relieve pain or stiffness. Truly, my favorite part was the smell.

Neck Hammock

This is another neck traction device that you hook to a door knob. It is supposed to apply gentle traction to the neck to stretch out the space between the vertebrae which may be pinching nerves. It hangs from the door knob and you lay on your back with your neck in the cradle or hammock and float for a little bit. I found no relief but it also didn’t worsen anything either. For the price, I think it could be worth a try.

Rest Cloud Neck and Shoulder Relaxer

I can’t give a fair review of this one as I have only used it a couple times. In the two times I have used it, it was relaxing to lay on but I didn’t notice any significant reduction in neck pain or headache. It is a similar concept to the Bonsai Occipital Release Tool above but seems milder and doesn’t have the various bumps for pressure points. As I use it more, I will update this.

Ice Beanie

I haven’t received this yet but I am excited to try it once it arrives. This is a hat that provides cold compression to the head, reducing pain signals to the brain and ultimately reducing headache and migraine pain. Hope it makes it to the top of the list. Shout out to my brother for this gift!

Tag: concussion recovery

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“nothing’s for keeps except that we must keep going.”

Apps, Gadgets and Tools for TBI Recovery