PCS forever?
 

Is there anyone out there who has had PCS for an exceptionally long time? For say 10-15 years or so? Or permanent?

I'm interested to know how the symptoms are after such a length of time. SURELY they must be very manageable after such a period of time.

I have had PCS for 2.5 years and my symptoms are about 50% of what they were in the first 6 months, and although they go up and down very randomly, they remain at a fairly constant state. ie. it's not getting better or worse.

Thanks. :)

I have had pcs 6 years
 

Hi, I was constantly told you will get better and there is nothing wrong with you as the MRI and C/T didn't show anything. I also managed to score average and above in psych tests - despite my head feeling like it was exploding and having to sleep afterwards. My psychiatrist has now told me that this is as good as it gets. To avoid headaches and to be able to function to the max I have to have a half hour snooze and 11.30 am and sleep for an hour in the afternoon. I also have to avoid noise and bright lights. I work 3 hour days. I am now reconciled - most of the time that this is it, but still hope that one day I will wake up "normal". I have had many tbi all described as mild, the ones that did the damage were 6 weeks apart - hit my head on a hanging basket and then on the door frame getting into a car - never would you believe the long lasting effects! I would do anything to make it go away!!

Lucy,
I am sorry to hear of your long ordeal. It is interesting for me to read these stories because the symptoms do seem to be similar. You seem to be suffering from a lack of mental stamina and need the naps to regain strength. I see this in my son and worry if he does not get adequate rest. This seems to be the one thing that makes him sharpest. You have somehow figured this out on your own. There is so much still to understand with these tbi's and listening to the individuals who are suffering and dealing with the effects each day is helpful. I just wish the neurologist would spend more time listening and understanding. Hang in there, maybe you are still getting a little better each year.
Nancy

Figuring it out
 

Nancy, I don't know if I figured it out - it was more like survival! At first I thought resting was lying on the couch and reading a book in front of the television screen!. Of course, I couldn't read or watch as couldn't concentrate or keep my eyes open. I was also told to "wait", "just rest while you are waiting to get better" That was told to me by a private neurologist - who unfortunately died in my first 6 months. Well it has been a mighty long wait!!! Especially when you are not patient! I think that your son has to avoid ever hitting his head again, like don't play soccer, rugby etc it is not worth the risk. Never believe what specialists from any insurance company tells you - they have been my biggest problem and have their own agenda. My favourite saying is peace calm relax....................... - then if you are lucky you won't get a headache!!:)

My symptoms lasted for 3 or so years then more or less totally disappeared, thankfully. They would only return very occasionally if I was particularly stressed out, sleep deprived, or otherwise not doing well.

A recent and very, VERY minor blow to the top of the head has caused them all to return, which is why I'm on this forum. This blow was really quite insignificant, and I was shocked that all these symptoms returned so dramatically. It makes me think that something must have been lying just below the surface, even though I felt more or less fine.

Anyway, happily it's been a week and I seem to be getting better in leaps and bounds this time, probably because the blow wasn't bad at all. I expect to be near 100% within another week, knock on wood.

I've had what I beleive to be PCS for over 20 years now. I'm 33 and had a severe concussion and seizure disorder when I was around 10 years old. My story is linked below, but I have almost all the side effects. Honestly, it hasn't been a huge deal, except maybe in relationships. Probably less of a shock to me since I got it so young and until recently thought that was just the way I was naturally. The coincidences are pretty radical, so I attribute it to PCS, and am looking into Neurotherapy and Neurofeedback as a possible treatment after I get a clinical analysis.

My story and symptoms linked here..
http://neurotalk.psychcentral.com/sh...ad.php?t=31327

e-head: How did you treat your PCS originally?