History:
I have had PCS off and on for 3 years and currently going through a stretch of 5 months of terrible symptoms. I almost have done everything possible to help the condition. I have been slowly getting better the last month or so but no where i need to be to be able to work and get back to my normal schedule. With my experience I found out that nothing in particular works, it may help but does not get you healed. The best I found was just rest and relaxation. I did take a drug called Topamax for 1-2 years and that worked great until i stopped working 5-6 months ago, and not sure why.
General:
This PCS is a straight up ***** and no one has any idea about what u are going through except for individuals that are going through it or have been through it.
Unfortunately, I do not know of anyone that has it. It would be nice to meet up and hang out with people that have been through it or going through it. It would be nice to be with people and to talk to people that have experience in the issue and make you feel comfortable knowing u are with a person(s) that have the symptoms...
Ideas/Thoughts:
Ha I live in St. Louis MO if anyone is interested to start up a group session or anything that works. I feel that it would help us all to be with people that are going through it or have.
More History and Recommendations
I currently unable to work but stay as optimistic as possible, esp since I know it has worked in the past. For those interested, I am on Lamotrigine, which has been the most helpful medicine other than Topamax. I also see a cranial-sacral therapist that has helped me feel a little better, and Ill take it. I know a Major League Soccer player that is doing this as well.
Thanks hope this helps and hope people keep responding to this and continue a nice long thread.

what is Lamotrigine.?? never heard of it.

Generic for Lamictal, an anti-seizure med.

Oh...I had a huge allergic reaction to Dilantin...wound up in the hospital...rash fever ..worst than flu. Needless to say..won't be trying those again.

I was on Dilantin back in 1971. It messed up my gums. They got really swollen. Doc switched me to phenobarbital. Dilantin is an old drug. It was developed back in 1908. It was put into wide use in 1938 as a non-sedative alternative to phenobarbital. It is amazing how many OLD drugs are still in use today.

I have to agree with your assessment. I'm 28 months into this hell and am still searching for answers. I recently applied to the head injury program in my state (pa) and was approved for services for a year through their program that is coordinated through the brain injury association. It offers weekly group counseling and home help for cognitive issues. You may want to see what's available through your dept of health or ask your health professional for a referral. I have a physiatrist that specializes in brain injury rehab and was referred to a health center that specializes in brain injury. Hopefully that might provide an avenue for you to speak with others that understand your concerns and situation. Good luck!

I want to make one comment when it comes to the different seizure
medications. You really need to understand each one is different.
And just because you have a reaction to one. Please don't let that
stop you from trying a different one.

Donna

i'm writing a separate post about this...my head is in a constant state of throbbbing/shaking. its rediculous. When I'm overstimulated (at least I think that's when its happening) I get a throbbing chill type thru my body...then it goes away. I'm seeing a "headache specialist" may10 ---

oh...and I can NEVER sleep on my own...I just doze