I would greatly appreciate any advice/support ideas on how to deal with recovering from from long terms symptoms of PCS. I have had 5 concussions in my life, the 5th occurring in January of this year. The one in January seemed moderate, but the PCS symptoms have been much longer lasting than any other concussion. I have been to every medical/psychological specialist under the sun (including neck/ear specialists and trying acupuncture) and I'm not seeing material improvement. On most days I feel light headed and nauseated, some days worse than others. I have tried mild exercise (through therapy), mild work hours, no exercise, no work for extended periods, and everything in between. The symptoms seem to improve/get worse with no consistency based upon my level of work/physical activity (i.e., I can't figure out what will make me feel better), although if I push myself hard clearly the symptoms get worse. For the most part I have rested for much of these 10 months and I am becoming increasingly frustrated as the doctors can't seem to tell me anything new. I know there are no easy solutions, but I am worried that this could last the rest of my life. Has anybody has a similar experience or advice regarding other steps I could take to help improve my situation? Thank you.

slrjr,

Welcome to NeuroTalk. Sorry to hear you are struggling with PCS.

When you are inactive, what kind of an environment are you subjecting your brain to? Is it quiet or a active environment with sounds and visual stimuli? What is your lifestyle like?

Have you made any nutritional changes? Do you avoid any foods or food ingredients?

How did you get so many concussions? Did you play sports? Which ones?

What have the doctors and such done or recommended?

Hopefully, we can discover something that is delaying your recovery.

My best to you.

Sorry to here someone else in the same shape I'm in I have been fighting PCS for 2 and a half years with no sings of getting any better it has stopped me from doing anything and everything ,,, they have tried meds PT And still I'm the same.. I sleep most of the time miss out doing a lot with my family vac's / movies/ car rides I get sick and throw up all the time get dizzy have bad headachs all the time ....it is really hard I feel for you...

Thanks for your reply and the kind words. I have tried pretty much all environments, but for the most part I have tried to avoid excessive computer time and any physical activities. I watch a lot of TV now because I can't seem to do much else w/out the symptoms getting worse (the TV doesn't seem to make the symptoms worse, and I avoid shows with excessive movements around the screen).

Before the most recent concussion I typically worked about 60 hours/week and exercised about 6-8 hours per week. Now I am working much less and not exercising at all. I generally eat pretty healthy (lots of turkey, chicken, fish, fruits and vegetables), and since the injury I have added to my supplements at the instructions of various doctors (fish oils, brain activator supplements). The one bad thing in my diet is that I drink a lot of diet coke. I met with a nutritionist as well to discuss my diet in conjunction with the PCS (she wasn't much help, but had a few ideas that are good regardless of the PCS).

Regarding my past concussions, most are sports related. I played ice hockey most of my life (recreational), and 3 of the 5 were from that. One (the only severe one) was 20 years ago (I'm 40 years old) from playing pickup tackle football. The most recent one was getting caught in the middle of an unfortunate brawl where some very drunk people were out of control and looking to fight anything that moved. I don't remember getting hit, but I had some major scratches on my head and one bad scar where I must have been directly struck in the head (others that were present told me that thought I hit my head when I was tacked to the ground, but I am uncertain of how it actually occurred). In any case, based on the scars and my feeling the next day, I am certain that I got hit in the head in some respect. I remember everything from a few seconds after getting hit in the head, so I didn't think it would be nearly this bad. I suspect the issue here is the multiple concussions. The symptoms were very bad for the first month or so, then they began to get better. Problem is that they are the same now as they were after about a month after the incident.

The doctors had me on Amantadine for a while, but it didn't seem to do anything for me so I'm not taking that anymore (it is a dopamine enhancer). I am not on any other medications. Beyond that they referred to me 3 specialists (one psychologist, one eye/ear specialist and one physical therapy specialist). I met with these 3 for several months but I wasn't seeing any progression and I was able to do the exercises (minor things, nothing physically demanding) from the therapists fairly well on my own. The psychologist gave me the cognitive tests and such and I improved to the point where we both felt I wouldn't score any higher even if i was feeling 100%.

Hope that helps and thanks again for the comments.

Rob (sorry for the acronym, I didn't realize it would show as my name).

slrjr71, NOS455 - I am with you guys on this one. (3 and a half years). I did missed out so many things and always some symptom brings me down. But dizziness is the worst and mine is not spinning and more like falling, feeling faint etc.,

Unfortunately some of it is tough to diagnose and treat. Like Perilymph Fistula which rarely happens with head injury. Also there are so many other things can go wrong (neck, vision, ear and brain itself).

Few things which did helped me temporarily are:
Neurofeedback
Cranio Sacral Therapy.

As for as medicine wise I take Xanax (lowest dosage) which keeps things under control. Before I drive or go out I take them and my dosage varies how I feel that day. I also have prescription for Zofran and when nausea gets out of control then I go for it.

I tried so many meds and right now hanging to this.

I do some meditation and started some gentle Yoga too however I can tolerate.