Post concussion head trauma vulnerability
 

Hi everyone,
This is the first time posting a "thread" as well as the first time I've ever been part of an on-line forum, let alone any forum for that matter. I'm a family physician in Canada, and like most Canadians, enjoy playing hockey. Unfortunately, in 2006, I suffered a concussion during a hockey game which resulted in a prolonged recovery. After about a year, I was finally able to tolerate and enjoy sports again without inducing a headache. As you can imagine, I was forbidden by my wife to lace up my skates again (no argument).

In retrospect, I now realize I made 2 errors in recovery (wish I knew then what I know now). First, I quickly returned to work without much cognitive rest and pushed my way through long clinic hours. Second, I lifted a heavy article on day 2 post mTBI which quickly brought significant and instant head pain.

What has now become a permanent disability is an inability to strain or lift articles more than ~10 lbs without feeling a discomfort in my head. This discomfort eventually becomes pain if I persist with the strain or lift. The more intense the pain, the longer it takes to dissipate. With new head trauma (such as loghtly bumping my head on a shelf, running in my squash opponent....ie sudden deceleration), this intolerance to strain is magnified for a few weeks. Eventually it settles back to a baseline but never goes away. Essentially I am extremely sensitive to any increase in intra-cranial pressure(ICP) (physical strain--->increase venous pressure--->increase ICP. The problem is that it is now taking less force to temporarily magnify this phenomenon. I've recently had a second MRI specifically to rule out a head trauma induced Chiari-type CSF obstruction. Thankfully everything was normal. I've consulted local "concussion specialists" who can only come up with theories of meningeal hypersensitivity post injury with the consideration for medication dampen the pain during effort (which I'm reluctant to do).

The other phenomenon that now follows any head bump (and I mean just a bump), is a decline in cognitive stamina that slowly improves over 2-3 weeks. It's difficult to cancel patients who have been waiting so long to see you. So, against better judgement, I often will push myself cognitively through a days work. I now can appreciate that these changes (following repeat minor injuries) are both structural (at a cellular level) but also biochemichal (increased neuron vulnerabilty and cell dysfunction). What puzzles me is why the worsening trend over time.

Once I'm 3-4 weeks past a "head bump", I feel cognitively great again. I'm able to enjoy aerobic sports that don't increase venous pressure much or for long. In other words, I have no problems tolerating an increase in arterial pressure when I'm "well" (I can ride my bike but just can't lift it!).

I wonder if anyone else has been experiencing similar post-concussive symptoms and whether investigations have shed any light.

Canadoc,

Welcome to NeuroTalk. I wonder if you have some neck involvement causing the head pressure. Often, when we try to lift something, we will tighten the upper back and neck muscles. This can alter blood flow. I have had to learn good lifting mechanics and with such, I have little to no limitations. Often, just taking a breath and releasing it in a relaxing way is enough to allow me to lift without tensing my neck.

You may also have unresolved upper neck injuries that quickly react to any strain. The whiplash often accompanying a concussion can set up a cascade of injuries and structural imbalances.

Regarding your long days seeing patients. Many of us have had to master the skill of "Stopping to Think." This is a sort of clearing the mind of distractions and shutting out the audio and visual stimulations enough to get cognitive focus. I find a brief moment with my eyes closed can be a big help.

There are lots of good people here so feel free to share with us.

My best to you.

Thanks Mark, I also found exhaling during a lift helpful. Keeps venous pressure from rising too high. Think I'm going to enjoy this forum stuff!

Hi Canadoc, I read your post and can definitely relate to your symptoms. I suffered a slip and fall on ice 3 years ago, and still live with pressure/discomfort in my head when lifting objects/over exertion/ or any type of stress. I am a part time personal trainer, so it has made my job challenging and frustrating, at times. Most of my clients usually pick up the weights.

If I really overdo it, the symptoms last longer, with more discomfort in my head, as well as pressure in my ears, and sometimes burning in the back of my head. It almost feels like my brain is torqued in my head . Sometimes, it knocks my Atlas out as well. I usually ice my neck and head, when the symptoms increase.

Overall, I am a bit better. I can tolerate picking up more weight. But not holding it for a long time. I used to work out in a gym, lifting weights, but I can no longer do that. Maybe someday, but not now. I used to bike, and do other cardio exercise. But have been very limited in that as well, without it bringing on symptoms. In the past year, it has improved however. I can ride my stationary bike for up to 30 mins, with minimal symptoms, that don't last as long as they used to. But I can't exercise anything like I used to. If I push too much, I just set myself back. So I continue to take baby steps. Are you able to run/bike etc, for long periods, without head symptoms ???

I have been seeing an Atlas Orthogonal chiro for 2 years now. In addition to the concussion, I have an atlas subluxation. My Atlas has become more stable over the 2 years, but it still comes out. She believes the soft tissue in my neck is still healing, in addition to my head. Have you had your neck checked out ??? It may be worth it to seek out an upper cervical chiropractic specialist.

I've tried acupuncture, couldn't handle vestibular therapy, and I am very sensitive to any drugs that my dr and other neurologists have prescribed. I am on a good supplement regime. In addition to my chiro, I see a cranial sacral therapist and a myofascial therapist. Both give me relief.

I'm seeing my neurologist for a follow up next week. I haven't had an MRI in 2 1/2 years, so my chiro suggested that he order an upright MRI to rule out/check for any Chiari malformation from the trauma. I think it's a good idea. All else I've been told is that there's inflammation that causes my symptoms.

All we can do is accept our current situations, and live life as fully as we can. I try to do that everyday, while continuing to heal.
I don't post much to this forum, but have found it very helpful.

Thank you for your post !

Thanks for your post Keepin' the Faith07. Boy, sounds like we've been walking the same road. I see a fair number of concussions in my practice including complex mTBI. Still haven't come across anyone like me. I've consulted with local concussion specialists (one of which sits on a national "think tank" committee for mTBI recommendations). He thought that the exertional head pain was from a meningeal hypersensitivity to normal increases in intra-cranial pressure. His advice was to pre-medicate with anti-inflammatories before a work-out. Another MD, who actually did his fellowship in the States focusing on mTBIs, suggested a second MRI to rule out the infamous Chiari malformations which presents typically with exertional headaches. Fortunately (I think), mine was normal. He suggested getting an opinion from MD in Buffalo who dealt with more atypical cases.

I like your "cervical spine theory" to which I never gave much thought. I often ask my wife to massage the upper posterior part of neck which provides an unusual head sensation but yet oddly comforting. What goes against a purely cervical issue is a lingering cognitive haze I experience after an excessive strain. That suggest to me a intra-cranial source. But at this point, nothing is for certain. Like you say, part of coping is accepting what life sends your way. My spiritual journey has also taken on new importance.

I'd enjoy keeping in touch with you but will let you decide if that's of any interest. I'm not very familiar with this site but I think you can request me as a friend (like in Facebook). Good luck with your MRI.

Sorry to hear you are suffering, and for so long! I am sure my exercise has changed forever. I don't lift weights anymore - hurts the brain and neck. Climbing stairs is a challenge - not for the heart but for the head. Very weird and sad. I was extremely active in sports and loved getting my heart rate up! Squash, cycling, cross-country skiing, etc.

I did go to Buffalo for an assessment, if that is what you were being referred to (University of Buffalo Sports Clinic). They told me that I was at the stage where exercise would not make my concussion worse...and exercising at a sub-optimal level would be beneficial. You can find their research online and in medical journals. Dr. Leddy is one of the researchers.

I wonder if it would be useful for you? Not sure.

Did you injure your neck as well? (Sorry if you have already written that!).

Out of curiosity (because so many of us have had such bad experiences with some doctors who don't have a clue, or are patently wrong about concussion, how do you find your colleagues? Do you share your insights with them? It is the kind of injury that one cannot imagine until it happens. So hard to describe to others.
Hope you keep healing.

Hey Canadoc,

Welcome to the thread. I am an Information Technology student who has fought with the woes of PCS. I still have some residue symptoms, but I am pretty much recovered.

My injury left me with Occipital Neuralgia and amplified mental disorders. I have had Anxiety, and ADHD which was amplified after my knock to the head, and ever since was forced to stay on my meds by my medical team.

Having anxiety and my brain not filtering properly were my two biggest woes in the beginning, along with my nerves going nuts after a smack to the back of the head injury. Dizziness stayed for months, until March 2013. 98% recovered in April 2013.

I couldn't even dream of lifting anything, even now to be honest. I am pretty much afraid of straining my neck since the accident.

Its been a while since my recovery and I still follow my Vitamin Regimen from Mark since December 2012. It does help. When I don't take them, I notice a huge difference in my mood and energy. I feel fatigued without it, and my focus especially from my ADHD goes down the drain. It would end up with me taking three naps a day, not even kidding.

I actually recommend you go to the stickie at the top for Mark's Vitamin Thread, I used it in the past, and have modified/added some of my own vitamins to this regimen. I use a Stress-B complex, instead of a regular B-50. And a Magnesium Malate, instead of regular magnesium due to its nerve healing properties. Potassium Citrate for my tension headaches.

You are getting better, no doubt about it from the sound of your post, but take it easy with the lifting. I would ask for help until you think you are ready to lift.


Best Wishes,

Consider

Thanks for the input Mokey and Consider. As you eluded to in your comments, many primary care physicians remain less informed about PCS. Part of the challenge in primary care is trying to stay up to date with a rapidly expanding medical field. I'd have to quit my day job to do that. I spend a good part of my day dealing with chronic diseases (diabetes, heart disease, mental health issues, etc) as do many of my primary care colleagues. It only seems reasonable that one would dedicate more reading time to these areas. As such, family docs likely familiarize themselves with the most likely presentation of head injuries which is the simple concussion. They recognize the symptoms, institute the new recommendations of physical and cognitive rest and most of their patients are better in a few weeks. That would be a reasonable expectation for the average family doc. When it comes to the complex concussion, I think you have to search the MDs who have a special interest in this area because the landscape of mTBI and PCS knowledge is growing rapidly and your average GP and even neurologist may not be up to date. That said, there may be plenty of new theories to explain the symptoms we experience. However we are still far behind in solutions. Many of the recommendations we follow our expert opinions (which doesn't mean they are wrong) but they aren't necessarily based on randomized trials but rather "best evidence to date". And that continues to evolve. If something is working for you, keep with it. Science may catch up with you and confirm that you were doing the right thing after all! MDs also must be mindful of the fact that patients often stumble upon treatments that are later shown to be scientifically sound. Always nice to deal with a doc that listens as well. Because of my personal encounter with PCS, I've done a lot of reading around this area but I certainly wouldn't consider myself an expert. I complain about not being able to strain or lift weights. I get down on myself when I struggle cognitively through a work week after "bumping my head". I am however humbled when I read the many stories in this forum of people struggling to get through a simple day at home. The sharing of stories has opened my eyes to the importance of emotional support we all need. What is worse that a broken brain is a broken spirit as well. Stay as well as you can. Cheers, Canadoc

Hi Canadoc! I'm not a doctor, but I do play one when I diagnose myself on the Internets :)

Are you sure your intolerance to weightlifting isn't just the plain old symptom exacerbation many of us experience with high heart rates? You mentioned you were able to get back to sport without inducing headaches, but did you/do you go to the point of very high heart rate or anaerobic exertion? Maybe you can tolerate a certain heart rate but not higher and lifting sends that heart rate spike/ pressure up.

I haven't posted here yet, just lurked since my concussion November 2013 but the way you describe your post-lifting mental state is VERY similar to what happens to me when I tried to exercise and get my heart rate up. I was healing, slowly, from my original accident and actually got to the point at two months where I felt basically no symptoms at rest but if I tried to exercise I got a brain fog feeling, blurry vision, dizziness, etc. Depending on how much I did, it would last half a day or a day or so.

Then two weeks ago I lightly tapped my forehead into a small tree. I know, it sounds bad, but it was honestly lighter than the taps we've already probably done pre-PCS, like hitting into a car door or something. It didn't even hurt. But I'm still in a mild relapse of symptoms. I refuse to consider it a rein jury because that's just way too depressing and I'm not nowhere as bad as I was after my original concussion. I'm choosing to think of it as a setback in my healing.

I go to U of Buffalo this Monday to see Dr. Leddy and his team. Before my tree tap setback I had started their protocol on my own and was progressing nicely, from twenty minutes at a heart rate of 120s up to 140s over three weeks, with no return of symptoms. Stupid tree!:mad:

Anyway, just out of curiosity, what would happen if you slowly monitored your heart rate until you go to your max heart rate...would any of those same symptoms that happen after lifting/ exertion come back? Might be worth your time to try it out.

Good luck!!

Thanks for taking the time to post me a note. I also recently stumbled on this site and find it terrific to be able to share stories. I seem to have two distinct consequences to my mTBI when it comes to exercise (by the way, I'm also a sports junky and still am.....it's just morphed in to a different form).

The first is what you've experienced with the tree bump. It usually takes me 2-3 weeks to slowly climb the "heart rate" ladder but I always eventually get there. Once "there", I can tolerate rates up to 160 bpm. In other words there is eventually no limitation from a purely cardio perspective.

The second problem I have (which has never really improved) is an inability to tolerate higher levels of resistance in the exercise (such as weight training, high resistance to pedaling, etc). When I push the limit, I develop i head pain which lingers for a while. If I "really" push the limit, I feel cognitively hazy for a while. I can provoke this pain without raising my heart rate or moving my neck (for example squeezing something tightly). When I bump my head, the tolerated "strain threshold" decreases for a few weeks much like the heart rate issue. However even after I'm finally able to tolerate higher heart rates, I never fully improve on the other stuff. I continue to hunt for explanations regarding the physiological changes induced by the mTBI. I too will be interested in hearing how things went with Dr Leddy. Keep us posted.

So I think the cognitive haze CAN be explained by upper cervical neck injury. If the blood flow is compromised from injury that is exacerbated by exertion you would feel mental fog etc.

I passed the physiological PCS test at buffalo. They think my symptoms stem from a combo of vision issues and neck issues. Doesn't totally explain the head bump relapse or why higher heart rate exercise does SEEM to bring worse symptoms but then again I can get dizzy from a slow walk around my neighborhood or a trip to the super market (visual input overload). As for my exercise regime still don't know what to do. Was doing recumbent bike in heart rate of 130s and 140s with varying degrees of symptoms that I can't pinpoint to specific causes. I have a high heart rate by the way so 130s is my recovery zone! I'm not even aerobic at that.

Was happy to find I tolerated some push-ups and air squats with no brain symptoms. Overall from my visit to the clinic feel like I got some answers - first doc who said i needed a vestibular consult, since my balance has been fine i was never previously referred- but the answers seem to have only prompted more questions....

It sounds like you may also have some neck issues ...don't give up asking questions because if we don't keep at this hunt we will never get answers...

Hi Canadoc,

I have been lurking on this forum for a couple weeks, but I recently decided to make an account because I noticed that your concussion history and PCS symptoms are remarkably similar to mine. In particular, I feel like I am suffering from a heightened susceptibility to head trauma such that I experience headaches, dizziness, and cognitive dysfunction as a result of "minor bumps" to the head. These lingering symptoms are severely exacerbated whenever I perform physical activity or intensive cognitive focus, which is devastating for me because I am (or was) an avid athlete and highly ambitious law student. The worst part is that my susceptibility to head trauma has increased steadily over the years, and now my symptoms seem to spiral out of control with the mildest of head bumps. I don’t have an answer to this problem, but I’m happy to share my story and brainstorm solutions with you.

My first experience with a prolonged PCS recovery happened from a series of concussions that I got while playing football in high school in the fall of 2006. I felt 95% better from the football concussions after 6 months of rest, but I got another series of concussions in college, and have been battling PCS on and off since then. I struggled with my PCS symptoms in college from 2009-2011. These PCS symptoms mostly cleared up after graduation and I started working as a paralegal from 2011-2013 with relatively few problems. I thought I was over my PCS and decided to play a game of volleyball in Spring 2013, and I sustained a minor bump on the head which re-triggered all of my old symptoms. I quit my job in Spring the of 2013 and spent the Summer of 2013 resting and rehabbing by doing vestibular exercises and easing back into cardio exercises on the elliptical machine while closely monitoring my heart rate. I wanted to be as close to 100% healthy as possible for starting law school. The Fall 2013 semester of law school was a highlight for me. I continued vestibular exercises, worked out on a regular basis, and studied 10-12 hours a day with the help of Adderall. My Fall 2013 GPA put me in the top 3% of the class and I earned a premiere summer internship. I was thrilled because I thought I had regained my health and I thought my life was back on track.

In late February 2014, everything fell apart again after an extremely minor bump on the head. I just bumped it on the headboard of my bed in the middle of the night, and I couldn’t work out or study for more than 30-45 minutes without getting a crushing headache, dizziness, and mental fog/fatigue. I felt really dizzy in class and had trouble concentrating and problems with my memory so I decided to take a leave of absence from school. It is so embarrassing and difficult to explain to doctors and friends about how a minor bump triggered all of these crippling symptoms.

My current neurologist does not think I got another concussion, but she explained it to me as a temporary reoccurrence of post-concussion symptoms that I will work through by continuing with the therapies that have helped me in the past. I am trying view it that way. However, deep down I know that I have developed such a heightened sensitivity to head trauma that it not only prevents me from participating in my love for sports, but also may prevent me from being able to exercise in a fulfilling manner or even have a legitimate career. It’s depressing to think about, so I try to focus on exploring different angles to improve my PCS problem.

Here are things that have helped me in the past: vestibular therapy, visual ocular therapy, occipital nerve block injections in my neck and head (improved symptoms for a few days), slowly returning to physical activity with a heart rate monitor and focusing on cardio (Currently, I can get my heart rate up to the 140-150 range on the elliptical machine without provoking my symptoms too much, but I absolutely cannot do push-ups, heavy lifting, or any actual jogging/running), getting a neuromuscular massage (MRI and X-Ray revealed no serious damage to my brain, but I do have a “mild compression deformity of the superior endplates of the C4 and C5 vertebrae in my neck” which indicates cervical issues such as cervicalgia of muscles and underlying compression which may be contributing to my headache and dizziness symptoms), adderall for focus and energy as needed, an OTC drug called Migralex has helped me with headache symptoms in a much more effective manner than regular motrin, advil, or Tylenol.

Here are things that did not really work for me in the past: acupuncture, topomax (made me drowsy with no improvement in symptoms), low-dose of doxepin before bed (just made me drowsy the next day), prescription painkillers, therapy with a psychiatrist, cranium sacral massage.

Things that I am currently exploring: I am starting Mark’s vitamin routine this week (last week my blood test showed that I am low in vitamin D and vitamin B). I am also scheduled for a sleep study, but I doubt that they will find anything game-changing. Finally, I am considering trying Imitrex.

Please let me know if anyone has suggestions, ideas to research, or things to brainstorm that I could try. Obviously, I want a “cure” for this problem more than anything else but I know the chances of finding one are slim. About a month ago, my pain specialist put me on a course of methylprednisolone steroids over 6 days. I took 6 pills the first day, 5 pills the second day, 4 pills the third day, etc. Immediately after taking the first 6 pills on the first day, I felt 100% better for the rest of the day. I didn’t even realize that it was possible for my head to feel that painless and for my mind to feel so mentally sharp. Unfortunately, that feeling wore off and my symptoms returned after I finished the course of steroids. I know that I cannot take a high dose of steroids indefinitely, but maybe I can find an alternative or more natural solution to mimic the anti-inflammatory effect of the methylprednisolone. Any ideas?

Best wishes to all who have this problem! I know how it can be absolutely devastating, and it’s good to know that we’re not alone in walking this path.

Welcome to NeuroTalk. That is a lot of information.

Migralex is an expensive way to take buffered aspirin. I combine aspirin and Tylenol for a strong pain relieving effect. Have you tried using ice packs to help with neck inflammation and head aches ?

I have not tried combining aspirin and Tylenol. Whenever I take Tylenol it helps with the headaches, but only for a short period of time. I will try combining aspirin and Tylenol this week.

I have not tried using ice packs. I will give it a go after my vestibular & physical therapy tomorrow.

Thanks for the suggestions, Mark.

Your right, we sound like a pair of book-ends! Thanks for sharing your story. If this stuff sounds like group therapy, it's because it is! There is clearly something therapeutic about this site when personal struggles are so easily understood by others.

In my little world of medicine, there are many symptoms I can push through or medicate when I'm having a bad day(s)...which usually follows that wee bump to the head. However the one that I find tough is the reduced cognitive stamina.....feeling mentally exhausted by noon but knowing I have a full afternoon of patients to see. The only thing that helps is a few weeks of healing. Drugs don't seem to have a great place here.

I've been fortunate to be able to work knowing full well that things could have turned out very different. I am humbled when I read people's daily struggles on this blog. When I'm discouraged about not being able to exercise (as I once could), I'm quickly reminded of the many PCS sufferers who barely to make it through a day. Getting discouraged is effortless when you see your career path face, what seems, so many insurmountable hurdles. I'm sorry to hear that your semester has been derailed by a trivial head bump (I completely relate to your story and symptoms). With regards to your law degree though, sometimes seeing the finish line is not the immediate priority. It's like the spiral staircase of a house. You don't have to see the second floor to know you're going to get there. You just have to see the next step and trust you are going in the right direction. We both live day to day with the uncertainty of when the next minor bump will turn our lives upside down again. I constantly remind myself that things always improve with time. Hopefully, your symptoms will settle quickly. But it is what it is. Something as important as being patient during the recovery from the physical and cognitive symptoms is maintaining a hopeful and positive mental attitude in the wake of disappointment. All too often, that little voice in our head gravitates to the "dark side". Tonto once explained to the Lone Ranger that there were two barking dogs in his head. The one he fed the most barked the loudest.

Although I've spent a lot of time researching PCS and consulting with colleagues, the effort has been more to understand my symptoms as opposed to find a solutions. Thus far, accelerating the return of cognitive stamina after an injury remains elusive. Stay tuned and keep in touch. Canadoc

hey there i have had 10 concussions and they have had the same result bt this one i just recently had is so far the worse but i was told if you drink alot water and take supliments such as vitamin c and d and fish oils you can get back to no headaches... if that doesnt work i was told a mri is good or a neuroligist

i hope you feel better concussions suck!

Thanks for the encouraging note, Canadoc. I know that staying positive is paramount in order to recover, and I am fortunate to be experiencing slow and steady improvement. I have found that woodworking is a great activity that I can pursue in between vestibular and vision therapies. I can get my heart rate up to 165 now on the elliptical machine without bringing on excessive symptoms, although I went to an NBA playoff game last week and felt on overload of stimulation. I also felt like I was going to pass out on a walk the following evening after a long day of doing stuff, so I guess it depends on the day and circumstances.

A couple interesting developments have been revealed by my blood work recently. My vitamin B, vitamin D, and cholesterol are all extraordinarily low (Total Cholesterol is 101; Triglycerides: 30; HDL (good): 74; LDL (bad): 21). Do you know if having too low cholesterol can affect brain health? I forget the exact vitamin B and vitamin D numbers, but they are well below the typical range. One doctor thinks my bloodwork in conjunction with my PCS symptoms could actually be an indication of Lyme disease, so I got tested for Lyme disease but I am still awaiting the results.

Regarding alternative treatments, I am considering trying hyperbaric oxygen. I am reading Dr. Harch's book, "The Oxygen Revolution," about using hyperbaric oxygen to treat PCS. It reviews some fascinating studies on the effectiveness of HBOT (hyperbaric oxygen treatment). HBOT appeals to me because I have always said that my PCS symptoms make my brain feel like it's not getting enough oxygen. I know that traditional, old-school neurologists belittle HBOT treatment as a snake oil solution with no evidence behind it, but I think recent studies that implement SPECT brain imaging can objectively show an improvement in oxygenating the brain and seem to have a real effect in helping the symptoms for combat veterans. Do you have any thoughts or experience with HBOT?

HBOT is an expensive process with usually little gain. Some see no gain, others see a small gain. Either way, it usually requires 40 to 80 sessions (dives) to see a difference. One could easily spend $10,000 on HBOT. It can be shown to improve capillary growth and function but daily living functions are harder to measure.

You can effect your B-12 and D3 levels with supplements. 5000 units of D3 and 2500 mcgs or more of B-12 methycobalamin would be a good start. I read a study years ago that connected low cholesterol to poor brain function. Larges doses of Omega 3 DHA fish oil may be worthwhile.

Before I answer this question, I'm going to do a little research. There is plenty of information available on the internet these days. The problem is the quality of the info. In order to justify a recommendation, people sometimes quote studies that were either improperly powered to make specific conclusions because of sample size, were not randomized, had selection bias, etc...... Sometimes there aren't any properly constructed studies to answer a specific medical question and one has to rely on the best available evidence. I know little about HBOT and PCS recovery but will venture to see what quality evidence there is to justify such a cost. Stay tuned.

Canadoc

Further to my recent reply,

I did a pub med on-line search and came up with a few studies of interest. Unfortunately, in most of the abstracts, the sample size of study subjects is small. The other issue that is not well described in the abstracts is the profile of the participants with regards to their disabilities. As you know, PCS comprises a multitude of symptoms that likely reflect injury to different parts of the brain. Grouping all those afflicted with PCS under a single diagnosis would make the study outcome more difficult to extrapolate to an individual. When extrapolating study outcomes involving vitamins, one must distinguish between individuals who are supplementing because of a state of deficiency versus those (which includes most of us) who supplement even though we are vitamin sufficient. I'll let you make your own conclusions.

HOBT
http://www.ncbi.nlm.nih.gov/pubmed/24260334
http://www.ncbi.nlm.nih.gov/pubmed/24255008
http://www.ncbi.nlm.nih.gov/pubmed/24004322
http://www.ncbi.nlm.nih.gov/pubmed/23031217

Vitamin D

(Not much I could find on specifically mTBI and benefits of Vitamin D supplementation in human study subjects other than case reports or very small studies. Plenty of research on vit D and its potential role in neurocognitive health. Whether this can be extrapolated to those suffering from PCS is less clear from an evidence point of view. Remember though absence of proof doesn't mean proof of absences. Not much data on optimal daily dose from a purely neurocognitive perspective and any recommendation I would make would be purely anecdotal. Personally I follow the current recommended daily dose of 1000-2000 units considering the other proven benefits of this supplement (especially in colder Canada). If there indeed is a role for vit D in PCS healing, that's icing on the cake).

http://www.ncbi.nlm.nih.gov/pubmed/24604440

Vitamin C

Many of the studies I came across involve ACUTE head injuries and involve animal models. There is great interest in the role of vit C and its reduction of oxidative stresses in the acutely injured neural cell. Extrapolating this data to the improvement of outcomes in chronic PCS patients may not be accurate but not necessarily unreasonable considering the low risk of toxicity at recommended doses. I realize this may be contrary to what others have stated in this blog but I'm basing my statement on purely evidence-based data that I've been able to find. If others have come across data to support recommendations, I would invite them to respond.

I had to answer your question over 2 blogs due to time pressures. Just a few comments on the other issues. I don't believe having a NATURALLY low cholesterol is of relevance regarding your potential for neurological healing. In other ways, this may well prove to be a significant advantage with regards to reducing your lifetime risk of manifesting symptoms of dementia later in life. I would trade cholesterol profiles with you in a flash!

Vitamin B12 is very important to maintain a healthy neurological system. Those who are deficient benefit from supplementation. Few would argue this point. There are differences in opinion as to what constitutes the ideal blood level. Your laboratory report would have the acceptable reference range. Does correcting a state of B12 deficiency accelerate healing after an mTBI or in an individual with PCS? Who knows! I have not been able to find any convincing evidence to that effect. It does make sense however to correct a deficient B12 state in order to avoid the other well documented neurological and hematological problems associated with low blood levels. I have equally not come across any evidence to suggest that supplementing a B12 SUFFICIENT individual provides healing benefits. Again, I would invite anyone with evidence to the contrary to share their insights and knowledge.

Just a final note on your low vitamin D levels. If you live in an area of the USA where sunshine hours were at a premium over the past 5 months or if you spend most of your waking hours indoors (or both), your vitamin D levels would have naturally fallen (unless you were taken supplements). You may wish to discuss with your doctor about remeasuring your levels during the summer. You might also want to inform yourself about supplementing with vitamin D during the colder months of the year as a rule.

Hope this info has helped. I wish to remind you that the above information is my own opinion and, ultimately, you should review any medical decisions with your personal physician. Cheers. Canadoc

Hi Canadoc,

Thank you for the in-depth research and input on the aforementioned issues. I took them into account and adjusted my treatment accordingly.

Recently, I received some possibly life-changing news. Upon the suspicion of one of my doctors, I had some more blood work done. My IGENEX blood work results back as POSITIVE for Lyme disease.

It makes sense to me that Lyme is a major contributing factor to the inflammation in my brain and a major cause of my headache, fatigue, brain fog, and vestibular issues. Apparently, the Lyme bacteria lives in different fatty tissues in the body (in the brain, lymph nodes, joints, etc.), and the body's autoimmune response to the bacteria causes inflammation wherever the bacteria happens to be located. Looking back at my re-occurrences of post-concussion symptoms, I realized that nearly all of them coincided with swelling and pain in my groin lymph nodes and testicles. I visited many urologists over the years who couldn't find anything wrong, and just described the swelling as chronic idiopathic prostatitis.

In addition to Lyme explaining the lymph node swelling, I am convinced that Lyme is a primary cause of my symptoms because since starting antibiotics, my symptoms have gotten much worse. The worsening of symptoms was predicted by my doctors and is called a Herxheimer reaction. Basically, as the antibiotics kill off the bacteria causing Lyme disease, my body has a difficult time ridding the body of the dead bacteria which causes the worsened symptoms. For example, the first night after taking antibiotics, I woke up sweating profusely. Apparently, this my body trying to get rid of the dead toxins of the bacteria. Also, I have noticed that half of my face is very tingling after taking antibiotics (possibly related to bacteria dying which caused previously unnoticed bells palsy).

Now I am taking antibiotics, probiotics, detox supplements/dieting, and doing HBOT five days a week. In addition to promoting the growth of capillaries to regenerate brain connections, the HBOT is supposed to magnify the effect of the antibiotics and force out the Lyme bacteria that is deeply rooted in the tissues in my brain. While many of my symptoms are worse than ever (I am so fatigued that I am sleeping 12-16 hours a day now), I am convinced that the worsening in symptoms has been caused by the "Herxing" effect, and that this is a good thing for the long term. I feel like I am finally on the right path to recovery.

I know that the medical community is divided on treatment for chronic Lyme, but I am seeing a specialist and trying to absorb as much information as I can about the disease. Lyme can manifest itself in all sorts of weird ways, so I would encourage anyone who has experienced anything like me to explore Lyme as a possible cause of your symptoms.

Best wishes,
Nimrod

nimrod,

I don't have the reference handy but years ago, I read a report that said studies show very low cholesterol increases the risk for dementia later in life. btw, I paid attention to this report because my father had historically low cholesterol despite eating fatty foods and transfats his whole life. He died of dementia at 78 with the physical fitness and heart of a 50 year old.

My mother is 89 and has had a 240 or higher total cholesterol for decades. Her heart has been strong.

Hi Canadoc,

I just thought I would let you know that you are not alone and I experience symptoms almost exactly the same as you.

If I raise my blood pressure (especially by lifting weights) this causes an increase in intra-cranial pressure which results in an immediate 'pressure' feeling in my head followed by cognitive decline for approximately 24 hours. Even something as simple as a bowel movement quickly brings on symptoms. I do not experience a 'head ache' though.

I have experienced this problem for 3 years now and with no improvement unfortunately. However, like you, if I take a course of steroidal anti-inflammatories my symptoms are completely eliminated and I return to 'normal'.

Considering the success of steroidal anti-inflammatories, what do you think this means?

My hypothesis is a permanent hypersensitivity of the brain (perhaps the meninges as you suggested) to increased ICP followed by immediate inflammation that lasts for a short period of time. The inflammation reduces blood flow in the affected area of the brain as well as cellular function. I am not sure if a neck issue is relevant in my case.

I wish I could provide a 'quick fix' answer but I think that recognising the issue is related to hypersensitivity and inflammation is a step in the right direction to some kind of treatment.

Lucky for you, at least you can avoid bringing on symptoms by avoiding raising ICP. Unfortunately for me, even taking a non-strenuous bowel movement causes the symptoms. So I'm just trying to learn how to cope with it as a permanent condition...

I'm always open to advice though.

Halfnelson

Mark,

Thank you for the message. When I have asked my doctors about my super lower cholesterol, most tend to shrug it off and say that they don't know of any conditions associated with low cholesterol. I think most doctors have this reaction because they hadn't studied it med school for whatever reason (possibly b/c having super low cholesterol is very rare). I see some articles online now suggesting that researchers are finding a link between low cholesterol and brain disorders like dementia and alzheimers. It appears that some cholesterol is necessary to perform critical functions in the brain on a cellular level. I've also seen some indication that low cholesterol may be linked to liver problems, thyroid problems, and mood disorders.

In light of this, I am making a conscious effort to eat a little more bacon for breakfast to get myself closer to the normal range. :)

I am also getting my blood work done the first week of every month for the rest of the summer to keep an eye on things.

Thanks for your input.
Nimrod

Perhaps a little explanation might clarify some confusion about cholesterol and dementia. First off, dementia is an umbrella term that encompasses several types of diseases that lead to neurocognitive decline. The 2 most common are Alzheimer's dementia and vascular dementia. Although the outcome is quite similar, the mechanism of disease is very different. Whereas Alzheimer's involves the deposition of "amyloid-beta" plaques and tangles in the brain, vascular dementia stems from the blood supply to parts of the brain being choked off by "clogged" or damaged blood vessels. They can also co-exist.

Cholesterol particles exist in several forms in our bodies. Some of these particles promote the deposition of "plaque" inside the blood vessels and "clog" them up (low-density lipoprotein or LDL, very low-dendity lipoprotein or VLDL, etc). Some particles do the exact opposite and are protective (high density lipoprotein or HDL).

Generally, when people refer to their "cholesterol levels", they mostly talk about the "bad" cholesterol. It is this type of cholesterol that is lowered (diet, supplements, medication) in the hopes of slowing down the progression of cognitive decline in those who suffer from vascular dementia.

However, a LOW "good" cholesterol can also have implications regarding an increased risk of premature vascular or blood vessel disease. So doing things to increase your "good" cholesterol, if it is indeed low, makes sense. Regular exercise is one of several ways. Unfortunately, eating more bacon, as you proposed, just won't cut it!

Bottom line, find out which cholesterol particle is LOW. If it's the "bad" kind, then thank your parents for passing on good genes. If it's the "good" kind, then find ways to stay aerobically active among other things.

Hope this helps.

Cheers, Canadoc

Hi all,

Although I haven't posted much on this forum, I have been an avid follower learning along the way. I'm very blessed to have learned a lot from this site and have seen continued improvements. The concussion world is a ever changing confusing topic (pun intended :).)

Quick recap- My concussion was on Oct 26, 2013 playing rugby, I whip-lashed and hit the back of my head. I suffered from PCS for a little over 8 months now. Been through a number of symptoms including Depression/Anxiety/Headaches/Exhaustion/etc. I have never suffered like this and I have a new level of sympathy for others who deal with these same problems.

I'm close to having my life back to what it was pre-concussion. No more depression, I've been staying positive, no anxiety, and fewer headaches.

One thing in particular has been stressing me out. I haven't been able to work out. I'm not trying to max out lifts or become the world's strongest man, but slowly get back into having the ability to life (I've been starting with 1/10 the weight I used to lift). It's been a cat and mouse game. If I don't do anything I feel like I'm getting stagnant and losing weight/strength, if I hit the limit where I did too much it's an immediate 1-2 week set back.

I am wondering if anyone else has this same problem. It sounded like Canadoc mentioned his inability to lift without raising the ICP levels. I can relate, it feels like a throbbing headache and is definitely my brains way to tell me to take it easy.

I'm just looking for people who are dealing with this same type of problem and/or people who have been through this and saw improvements. What have you done, other than rest, to get back into this.

Thank you in advance for any suggestions or stories.

Continued healing to all on here, B.

good ol' head pressure with effort
 

This is the one symptom whose cause remains elusive to me. I've spent a lot of time thinking about possible mechanisms. I always seem to come back to the notion that there must be an acquired maladaptive response to handling rising intracranial pressure (such as the case with a valsalva manoeuver) in some people after a mTBI or that there is a heightened sensitivity to ICP even in the physiologic ranges. The other questions is whether the problem stems from the arterial or venous side of the cerebral vascular system, or both.

I have been trying to figure things out from the venous side given that the pressure is definitely related to straining. One of the things I'm trying to figure out is the adaptive response in a "normal" brain when someone in turned upside down for a prolonged period of time. In this situation, cerebral venous hydrostatic pressure rises quickly which must drive fluid out of the vessel and into the interstitial space of the brain. How does the brain cope with this fluid shift on the short term such that homeostasis is maintained? What leads to this homeostatic mechanism to eventually falter over time if the upside down position isn't eventually corrected? Perhaps there is similarity is what occurs after an mTBI. Just wondering out loud.
Anyone with theories?

My concussion doc is outstanding and, in general, he doesn't recommend weightlifting (beyond light-to-very-moderate weights). Too much strain on the brain.

And, of course, people in the acute phase of recovery should not be doing any lifting of consequence.

Totally relate to this thread!!
 

So I can completely identify with every post! I've been suffering with PCS since January of this year and it has completely turned my life upside down!! Canadoc have you made any more progress since this original thread? As in treatments etc... I'm particularly interested b/c your symptoms are so similar to mine and you also work in the medical field. I can say with out a doubt that Hyperbaric oxygen therapy has been the ONLY thing that has made any significant difference in my recovery. And I mean almost immediately, however I cracked my head on the hatchback of my van as I was unloading equipment for work and have regressed pretty significantly!! The minor bumps are maddening!! I went to hug an elderly lady at church and she came in a little too quick and that small bump just set me back even further. I was at a social function today telling people please dont hug me as Ive re-injured my head. Even thought about wearing a neck brace just so people would be more careful when they approach (we hug eachother down here in the South). I'm struggling with the fact that I might not be able to exercise the way I used to. (talk about anxiety and depression) At this point, I can't excercise at all, however I was making progress in the early part of my hyperbaric treatment which is now so much more frustrating since I am now back to balance problems, muscle weakness, brain fog, vision problems, cognitive issues, etc... Was considering Atlas orthogonal, but I've also read about that making things worse. Anybody with some experience with that type of therapy for PCS?

musicman,

Welcome to NeuroTalk. CanadaDoc has not participated in this thread since last July. He checks in occasionally but not lately.

You posted "So I can completely identify with every post! I've been suffering with PCS since January of this year and it has completely turned my life upside down!! Canadoc have you made any more progress since this original thread? As in treatments etc... I'm particularly interested b/c your symptoms are so similar to mine and you also work in the medical field. I can say with out a doubt that Hyperbaric oxygen therapy has been the ONLY thing that has made any significant difference in my recovery. "

Glad to hear HBOT made a difference so quickly. Most do not see an improvements until they have had 40 or more treatments. I wonder if it just accentuated spontaneous healing that 85% see in the first month or two.

"And I mean almost immediately, however I cracked my head on the hatchback of my van as I was unloading equipment for work and have regressed pretty significantly!! The minor bumps are maddening!! I went to hug an elderly lady at church and she came in a little too quick and that small bump just set me back even further. I was at a social function today telling people please don't hug me as Ive re-injured my head. Even thought about wearing a neck brace just so people would be more careful when they approach (we hug each other down here in the South). I'm struggling with the fact that I might not be able to exercise the way I used to. (talk about anxiety and depression) At this point, I can't exercise at all, however I was making progress in the early part of my hyperbaric treatment which is now so much more frustrating since I am now back to balance problems, muscle weakness, brain fog, vision problems, cognitive issues, etc... Was considering Atlas orthogonal, but I've also read about that making things worse. Anybody with some experience with that type of therapy for PCS? "

Many have tried upper cervical chiropractic (Atlas Orthogonal and NUCCA). It is very helpful for some and no improvement for others. Every brain injury is different so it is problematic to try to compare outcomes from any treatment.

What else have you done to help with healing ?

Since you brain appears to be responsive to metabolic issues, have you tried any vitamin and supplement regimens to help your brain heal ? There is a Vitamins and Supplements sticky at the top that is worth your read.

Playing the same tune as musicman
 

Dear musicman,
Been quite busy with work and haven't had the chance to read the Neurotalk site lately. I, like yourself, have to be very careful with those greeting "pecks of the cheeks" that female friends do automatically. A bit too much much of a "head bump" and I'm in to damage control for a few hours and sometimes days. The other one that kills me is the "guy hug" where we whack each others back. That simple vibration is as bad as a head bump.

Can't say I'm any closer to an explanation and the solution for now is simple: do what you need to do to avoid bumping your head! Mark in Idaho gives great advice to people struggling with the dramatic changes this syndrome has brought to their lives. But the best one remains "acceptance". Know that you're not alone is this struggle. Resign yourself to the fact that setbacks will happen and most of us will naturally get "down" when this occurs. Healing happens but is does so at "its" speed, not yours. Most of all, focus on the many things you can still do and not the ones you can't. Most of the time, having a positive outlook takes a lot of work. But it's so worth it. That's how I have managed my life. Hope it works for you.

Mark, thank you yes I did look at the sticky post and was doing some but not all of those supplements recommended. About to finish up a round of 40 HBOT dives and I can say it has helped more than anything else. However, I am by no means cured and acceptance is coming slowly!! Man I just read about Nimrods experience. Just want to say I feel for everybody!! I can completely identify and the majority of the people in my life are understanding but I can't say they get it, so it is nice to be able to come here to participate in group therapy. Might explore the Lyme disease issue too!! NUCCA? I'll check into that too. Thanks and yes focusing on the solution rather than the problem is the only answer!!

Canadoc thanks yes acceptance is coming slowly and I know that focusing on the solution rather than the problem is the only answer! Will continue to check in as the group therapy of this forum is something I can appreciate!!

I am a 36 yr old male. After a few concussions two years ago, I have similar symptoms. I hit the back of my head skiing, and had pcs symtoms for a few months. They subsided, but i've been left with an inability to exert myself physically.

I can physical do workouts, however, that night, i get extremely disturbed sleep. The next day I wake up with intense brain fog, fatigue, nausea, headaches, my eyes becoming sunken, and I look very sick.

Those symptoms can take a few days to clear up. I absolutely cannot lift weights. Even a few sets of push ups will make me symptomatic. I also cannot perform any sustained activity. 5-10 minutes of jogging is ok, but that is it.

I went to the buffalo clinic with dr Leddy, and he does not believe my symptoms are pcs anymore. I went to a cardiologist, and everything looks good. I do have a history of migraines. In any case, I used to work out 5-6 days a week, now I can barely weed my backyard for more than 20 minutes. I've learned to accept my condition, but I still miss all the physical activity.

Overall, I have made zero improvement in my ability to exert myself in two years. This is leading me to believe that it is a permanent condition, and no doctors can seem to explain it.

er98ah,

Did Buffalo consider any neck issues ? I think Pittsburg (UPMC Concussion program) looks at neck issues. Lifting weights puts a lot of strain on the neck and could be messing up your brain stem with inflammation. This could cause sleep disturbances.

Has anybody witnessed your sleep at these disturbed sleep times ? Are you breathing properly ? This system may help you do a bit of self investigating. http://www.amazon.com/Withings-WAM01...pulse+oximeter
Wear it while sleeping, especially after a work-out and see it is records any changes in O2 saturation.

Mark, thanks for the reply. Dr Leddy analysis was that he does not think it is related to my neck. Also, it's not just lifting weights, but essentially doing anything physical, for more than a short period of time. That would include walking up a steep hill for ten minutes ,or weeding my garden for 30 minutes.

With regards to the sleep, something is definitely going on during sleep. Even without exercise, I've suspected something isn't right. I'll buy that censor, and see how the results turn out.

What is worrysome is that I have made ZERO improvements in my ability to work out. You would think over two years, maybe I would make small improvements, but there has been none whatsoever.

Dr Leddy can say your neck is not involved but that relates to your good days. You said your bad days are right after a work-out or physical effort. My neck is fine except when I sleep on it wrong. Then, I have nightmares and a bad day. But, nobody has been able to find anything wrong with my neck.

The common PCS neck injury is very subtle and only causes problems when specific circumstances happen.

My solution was to figure out my own therapy or change in behavior. I had to learn to not look side to side with my neck only. I had to turn my shoulders too. This was very important when I was scanning the backyard looking for my dogs' waste.

My neck is much more stable now that it was but it creaks like an old wooden floor.

Mark, i think you are on to something here. I am noticing that when I do exert myself, that night, I have disturbed sleep and wake up with slight neck pains.

My question to you is how long you've been dealing with this? It's been over two years now, with zero improvement. I have come to peace that I will most likely never be able to exercise again without feeling ill. But it would be nice if there was some type of way, to at least increase my threshold for exercise over the years. In other words, will this get better? Is there anything you can do to improve it? i've heard of people getting neck surgeries. Any thoughts on that?

If you are waking up with slight neck pain, you need to find a position to sleep in that does not cause neck pain. I have to be disciplined with sleep and rest posture. I learned what worked by realizing I slept much better in a recliner. I learned to sleep on my back and do much better. It took months before my neck started to stabilize.