jemahon,

I am surprised at your struggles with Neurontin. Do you take it once or twice a day? I take it in the late evening. It has a very short half-life (8 hours) so should not have much effect during the day if taken the night before. I was on 600 mgs for 8 years. I finally had to increase to 900 mgs this past year. Maximum therapeutic dosages up to 4800 mgs per day were studied without problems.

Hockey,

One of the benefits of Neurontin is it has reduced my jaw clenching. I had wrecked my TMJ with jaw clenching.

My physical therapist does an in the mouth procedure that helps my TMJ settle down. I looked into a variety of TMJ therapies but most were far more expensive than effective. The PT's tricks have been my best solution. I think it is a variety of myofacial release. Painful for a while but worth it.

Mark, I take it once a day at bedtime. Perhaps your system tolerates the Neurontin better than mine? It also could be that I have been using a relatively high dose (6mgs) per day of Alprazolam for anxiety and panic disorder that has haunted me for years and worsened after my injury last April. The other thing is I have to work every day and cannot sleep in long enough to feel refreshed. I'm increasingly getting frustrated with the whole situation. Things just aren't getting better and I'm growing wary from the battle I wage each day to function at my job. PCS is sheer madness...I would have NEVER believed this could happen to me. I administer land use law and as laws and statutes change, my mind increasingly fails me because of my inability to retain much in the line of new memories.

Hi there. I have just been catching up about you. I must admit I am worried that you have not taken time off work or told your employer about your injury. Like you I would never ever have believed that this could happen to me, nor would I have believed it if somebody had told me what PCS is like.

I have now had 8 years of PCS. (mine is a result of cumulative injuries)

I firmly believe it has stayed with me because I never took the time off work (law) soon enough. I struggled on working full time - I could hardly read, couldn't remember letters I had written, settlement dates etc etc.

Fortunately I didn't do anything to shocking or, alternatively nothing caught up with me before I stopped working 2 years ago. I seemed to have been operating on remote. I was doing the work but didn't have any recollection! With clients I would forget what I was talking about mid sentence - I became very good at covering that up.

I forced myself to go to work each morning, dragged myself out of bed, did my usual dressing and make up, drove to work and put a smile on my face and my brain felt like it was screaming and burning.

My A&E doctor told me that there was nothing wrong with me and he knew about people like me - like I was fraudulent - I who was like Mrs perfect goody two shoes who never made a mistake, who lived in the lovely house on the hill with 2 teenagers and the golden retriever. That has all gone.

I finally found a good GP and neuropsychologist (Dorothy Gronwell) but could never understand or get my head around the fact that there is absolutely no use in pushing yourself to do anything and/or every thing if you don't feel like it -doing that prolongs and exagerates the symptoms. Dorothy used to talk to me about waiting to get better. I didn't have any patience with anybody let alone myself. You have to be kind to yourself, avoid the noise, bright lights, stress - at one stage I couldn't even deal with the decision of deciding what to have for dinner.

Dorothy immediately told me to stop working and take a month off work then to complete further testing and we would decide on a plan of action - unfortunately she had a heart attack and died. Since then I have had to fight with our Accident Compensations system and have never been able to work full time since. I was sent for all sorts of assessments = specialists who appeared to know less than me who criticised me for knowing so much about PCS.

When I got my hours up to 6 a day my blood pressure went crazy, hospital and back down to 3 hour days, then 2 years ago I was fired by a developer client - that was the end of me - I simply couldn't cope with that and it was the last straw and I haven't worked since.

I guess what I am trying to tell you is -or recommend that you do is; stop working, avoid all stress and find a health professional who understands PCS.

As I psychologist recently said to me "Ask yourself - what would I say if this was a friend that had this PCS?"

Lynlee

Sorry if I have waffled on it is late here and way past my bedtime - so time consuming trying to put this together - Mark seems to be a lot more patient and perservering than me!

I now take zopilcone and nortryptiline at night and usually sleep well. I wake up feeling about 60% which is alot better than previously.