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.