Thanks JDPhD,

I got TMD in my accident, too. Wouldn't it be wonderful if fixing my jaw fixed the blasted ringing. I'll have it checked out.

Cheers

I'm up to 600mgs. of Neurontin and it has improved my tinnitus...that's about all it is helping (other than to make me sleep). Hasn't really touched the headaches and has made my cognitive problems worse. I have also experienced an increase in fatigue and dizziness while on it. I'm hoping it will improve as my body adjusts to the Neurontin.

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.

That sounds alot like Tinnitus Retraining Therapy. TRT works, and the only one that really has been shown to work. I'm undergoing it, and have improved GREATLY in the past 3-4 months.

I wear Amplisound pink noise sound generators about 8-10hrs a day.

jemahon,

Have you looked into the inter-actions of combining Neurontin and Xanax (Alprazolam)? The data I found says that they can react synergistically. The sedative effects of the Xanax may be magnified by the Neurontin.

I was on Klonopin and switched to Neurontin. The Klonopin was making me too sleepy and drowsy.

Maybe you could switch to another drug for the anxiety. I take Paxil for an anxiety related disorder. My brain gets stuck looping on mundane thoughts like the words to a song or spelling of a word, etc. The Paxil allows me to break out of these looping situations or even prevent them altogether.

Benzodiazepines (Alprazolam is one) are a rough drug to take long term. Have you tried any other form of treatment? Have you had any blood work done, specifically your folate and B-12 levels? I would bet you are low in both. B vitamins are the anti-anxiety vitamins. Some people have a genetic predisposition to be low in these compounds.

Do you drink any coffee to help with the fatigue and dizziness? My doctor read me the riot act for using caffeine to combat the benzo fatigue. They work against each other.

Lucy and Mark,

Thank you for your replying to my post.

Lucy my employer is aware of the injury as I did report it as a work related injury and Workers Compensation is paying for my visits to the neurologist. What I am perhaps remiss in doing is not being open with my employer as to how much the injury has impacted my life and ability to carry out my job related duties. I have been open and honest with my GP and neurologist as it would be foolish to hide my ailments from them and expect them to help me. Yes, with hindsight I should have taken more than one week off post injury. I was confident that I was going to be better soon and figured I would just work through it as I did not want to appear that I was "milking" what appeared to be a minor injury. I do not know if my employer has been communicating with my physicians, but if they have, then they will know that I'm not doing as well as I try to appear to be.

Mark, it's funny you mention the caffeine...I hadn't used it in over 15 years until my injury last April because it could and at times did trigger an anxiety attack. After my injury I have had regular coffee in small amounts on a daily basis for the brain fog caused by the accident. I've taken Xanax for 17 years now and never had the benzo fatigue. My wife was VERY surprised when I took up coffee again after so many years of not even touching decaf. As long as I am careful, a small cup off coffee does help me make it through the work day. Any more and I get to feeling somewhat anxious and uncomfortable.

I eat a very healthy diet and take folic acid together with a timed release B-complex vitamin daily to keep my homocysteine levels down as I have coronary artery disease that was treated with stents in July of 2009. Although I am a vegetarian and might be low on B-12.

Thanks again Lucy and Mark...it's a blessing to be able to share this battle with others who know what I'm going through. BTW, my neuro wants to put me on Elavil if my cardiologist agrees to it...it seems that Elavil can affect heart rate and induce an arrhythmia in some individuals.

The benzo fatigue is made worse by the combination with Neurontin. They multiply the effect of each.

The Elavil might be helpful but combining it with the benzo should be considered carefully. A psychiatrist may be worth a consult, especially if you can find one with PCS experience.

Have you considered getting a neuro-psychological assessment? It might be worthwhile. Before you go much farther with your Work Comp case, check out www.tbilaw.com. Attorney Gordon S Johnson has some very good information regarding protecting yourself from insurance companies.

Concussion claims with Work Comp can be very problematic. You want to be very careful as you present your case.

Regarding a neuro-psych assessment, it is not uncommon for some erroneous diagnoses when assessing a PCS subject. Some of the test will overlap PCS symptoms with depression symptoms. The depression diagnosis can be a problem. Been there, done that, lost my case.

Mark, I have not filed a comp claim, nor do I desire to do so. My major concern is getting better and I believe litigation would be detrimental to my health at this point. For me to do so would concede defeat to the enemy PCS. A lot of times I am frustrated and feel overwhelmed. Never have I felt clinically depressed as a result of my injury. My major problems are poor memory, headaches, tinnitus, dizziness and insomnia with hypersomnia at times. I also have some sensitivity to bright lights and have experienced episodes of outright rage over petty issues like a bill dispute with my cell phone carrier that shocked my wife.

Perhaps I'm in denial, but I really do not want to think of this as a long term situation and would rather discuss ways to get better than ways to get a disability rating. At 47 I feel much to young to accept a permanent disability.