Mark, do you have any reference or literature you can point me to to help me discuss with the doctor? Thanks?

Re Insomnia....

I am gettinig beter at this! It was a nightmare for at least a year....I was told that some people with brain injury sleep all the time and others stay awake all the time! Both are problematic!

A neuropsych counselled me on reducing my stress over the insomnia...he said to aim for a solid three hour chunk and build from there. I am getting better, and realise I can function (somewhat!) without a full 8 hours. But it does make me wonder how much faster I could improve if I had had great sleeps for 18 months!

Also check your medications...I was taking one that caused insomnia (amantadine) so I stopped it. Now that I am sleeping a bit better, and seemed stalled in my recovery, I am back on amantadine because I believe it is very effective for me. So far, waking up only once or twice. But I am trying to go with the flow!

I tried sleep medication (lunesta type) but it didn't work! Just made me feel tired AND groggy the next day.

Good luck...it does improve, I hope! It has for me, but I know what a night are it can be.

Thanks for this information. Had a really interesting conversation today with my neuropsychologist who said that with PCS my tension/arousal levels are higher than normal causing reduced concentration, headaches, photophobia and fatigue etc, so when faced with stress the impact is a lot greater on me. This probably explains why I have isolated myself from my family, and children for the past few months and enjoy my own company. I don't feel good about it, but I feel better for it! As time goes by the tension/arousal levels drop and with it the symptoms drop, until eventually everything falls back into place. Stressing about the condituon isn't going to help when you have already raised levels of tension/arousal. I know only too well this is easier said than done! Biochemical changes have happened which will reverse in time, it is a temporary condition for many. The pressing sensation in my head is apparently muscular and has nothing to do with bloodflow like I thought, I have learned a lot today.

I think that makes sense. My happiest place is usually being by myself. :(

I think having my symptoms explained to me, and the causes of them has really helped. Knowing that I am in a heightened state of stress/arousal and subsequently the normal stresses of the day are exacerbated is a relief to me. That the pressing in my head is muscular and not to do with bloodflow, and that the wave like symptoms I have relate to stress and not something else. When you have PCS you need a neuropsychologist to help you! I slept 11-12.30 and then 1-6, I feel like I could run a mile - not that I will be doing that! Please God it will continue.

A neuoropsychologist is a great support during the Pcs journey! My NP says she is my concussion Sherpa and it is her job to be my guide along the way :) Just knowing the reasons why things are happening, that they are a normal part or recovering from concussion and that they will get better or go away is a huge help!

Just having someone understand and believe what you're going through helps. Mine has also been fabulous at explaining things to my doctor, disability company and family when I wasn't able to very well. Of course this all doesn't come cheap! Everyone should be seeing one if they can afford it or have insurance coverage!

CC

Cyclecrash, you are absolutely right! Just having someone who can answer your questions is so important. My neuropsychologist has explained to me about all my symptoms and it has helped me understand what my potential triggers are and as a result I am better equipped to deal with them. It is also important to hear that everyones reaction to PCS is different and that because of the changes that are happening now, and that symptoms are coming and going that I will get better. What is more since seeing her I slept 6hrs the first two nights and 8-9 hrs last night, this time last week and since my injury I have been getting 3hrs sleep. Stressing about symptoms will not help your recovery, but keeping a diary and logging positive changes and achievements will help.