My daughter tried biofeedback for her PCS headaches and fatigue, but she found it difficult because it involved intense concentration. She is showing some degree of improvement with 75 mg Effexor (Elavil didn't do it for her) to help with neurogenesis. She had one acupuncture session and the acupuncturist taught her deep breathing (slowly, into the abdomen) and she's been feeling better. She has another acupuncture session scheduled in a few days. I understand your frustration and distress. Keep asking -- something will click for you. My prayers are with you.

Hi all I'm Donna and I just figured out this forum was here.

As some would know I was posting on the post concussion syndrome threads
as they were around. I've been very busy with things doing to my health and
I've not been paying much attention. I had just decided i needed to check and see if anyone had posted on the post concussion threads and needed help.

And to my amazement this was here. I'm not that old of a concussion case and I have my up and down days. So I'm not sure that I'm of much encouragement to you. I've been doing a lot better than in the beginning and
I've been out of PT now since March. I started it in September.

I am having issues with balance and other things, that have to do with things that I've always had problems with and am trying to get help with now too.
And developed asthma and allergies in November, and now have shortness of breath really bad so my health overall is very much effecting my problems.

But I'm hoping soon that things will be better again. I enjoyed my PT and
it was one thing that helped immensely.

Donna

Hi all,
I'm not too sure if this is PCS but I've been unexplainably depressed for the last couple of months to the point that has driven me to do a lot of internet research in the last couple of weeks. I think the source of it for me was a recognition of the loss of self. After my TBI 17yrs ago I don't think knowledge of any of this was around and my rehab just focussed on the physical and cognitive (and not emotional). Like Nancy's son who took some time to realise he had a headache I feel like a it has taken me a long time to realise a lot of my emotional problems were actually there. I've read too of the importance of being allowed to grieve. I've read (and it makes sense to me) that if for whatever reason the grieving doesn't happen it just turns into depression (because the loss and trauma of the event is still real inside the TBIer). I think one of the trickiest parts is that it is incredibly hard for any other person to participate in the grieving process because they can't get inside the other persons head and know what TBI has meant for them (ie. there loss). (On the contrary if someone has lost a relative or any other function of their body we can imagine/empathise with what it is like and at least in part participate in their grieiving process. However if your brain is injured how can another know what it is like to not be you any more. Hence TBI is called the the invisible sickness.) Because immediately after a TBI you are so busy with all the cognitive stuff the grieving doesn't really happen then and it seems can a long time to come out (for me 17yrs!). However when it does as I said before it is important that grieving is permitted (and not scolded, or down-played or treated as self-centredness). What has become very apparent to me is that the breadth of the way TBI affects people is unfathomly big. But these are just the thoughts I have based on my experience of it.
Best wishes to all,
Nigel.

Nigel,
What an excellent post! Yes, what a loss PCS is! For awhile you lose who you are! When you are really ill, you do not even know the degree of your problems and there is so much dirorganization. Part of what was taken away from you when you were ill, was lack of understanding. Your situation was misunderstood back then! I hope that now that you realize this, you can explore these feelings and hopefully you will feel better. You may have a little of what they call post traumatic stress from it. Hopefully more support given to PCS patients will prevent this from happenning. Take care and hope you can feel better!
Nancy

Understand, what I have done is make diary to explain my actions to my kids who, like other "normals" (non-TBI's are normals) really have no clue to the internal, unseen damage. I really do understand the ability to not focus enough to get much of anything written, done or to functions. When I had my last TBI clinic manager, he was telling me to turn my diary into a book that MIGHT, might not, help other TBI people. In truth I know nothing about PCS but it probably damage the brain and, to my damaged mind, that means not normal and another form of scrambled brains with no visible signs of damage understood by normals.

Without typing three hundred pages, the diary, to explain what I discovered, created, invented or stumbled into alone, on my own, that made serious improvements in my ability to function. Seven years post diving into the Severe TBI end of the pool, I live alone and work on the diary/book daily. For me, I ignore what other do such as when they eat, sleep and such since my modified brain has its own schedule. Now I wake at 9am and takes a week and caustic caffeine to start my mind, two hour, sometimes three the focus fades and I do things that do nor require a total brain. Then I nap because my mind needs or rather, demands rest with or without sleep. The brain comes back on line about 11PM till 1AM+/-.

What a normal might have written in six months, I have taken six years and I am finally in the last phase of finishing to the point of putting it for others. I personally believe that caregivers (family not medics paid) have as tough or tougher time that we tibbies in many ways and the diary/book explains my actions so other caregivers a clue and reduce their "normal" anger or frustration. For the last year I have largely ignored my body and concentrated on my brain and my mind, two connected but totally different things we TBI people deal with.
At a TBI group meeting last week, I tried to explain how the excercises given to me for walking (I got a amputation of lower left leg too) helped my walking, gate and such but the excercises did more for my mind and cleared out what I think of as a pool of darkness. The balancing excercises took me a little closer to my mind's normal light.
If this makes no sense, it is a first draft of a letter and I NEVER first draft anything with TBI since I have seen my mind lose focus and wander. How I learned to regain focus is too much to type but if you wish, I will send chapters of my diary/book as I do the last rewrite over the next six months.

You write back, if interested and I will not be offended if you do not as I have learned the my mangled mind confuses or angers others far more often that I would ever wish.

Gary Nelson

Gary... so glad you're posting here. . I read & responded to your Intro.
Know you have much to offer & share...

Focus has been & continues to be issue for me --along w/ other things.
I'd Love to hear more about what you've learned in your process.

Pono: A while back you were looking for some information on a couple of treatment methods/substances that you'd heard of. I've had PCS for several years and I've tried a few of these in the past so I thought I'd relay to you what I experienced:

5-HTP: I was on a 5HTP regimen for 6 months or so a short while back, and honestly it didn't do all that much for me (that said, it didn't do anything to hurt me either, which is the nice thing about taking supplements instead of normal medication - there's little if any risk of a negative reaction). Basically, 5-HTP is a seratonin enabling chemical in the body, but it doesn't always result in more seratonin actually entering your brain (so it's not a cure all for depression, and it's not as strong as SSRI medication, which force your brain to use the seratonin it already has for longer than it normally would). Think of 5-HTP as being like molecules of hydrogen and oxygen that you're giving to your brain... if the brain's feeling dehydrated it can take those bits of hydrogen and oxygen and turn them into water, but if the brain doesn't feel thirsty at all it won't turn those molecules into anything (it'll just flush them out of your system). I hope this analogy makes sense. That said, if your brain really wants to make more seratonin but doesn't have the means to do so, taking 5HTP will give it that ability. If you really want to check out a more holistic approach to brain chemistry, there's a company called NeuroScience Laboratories that operates out of Wisconsin, and they have tests that you can do through the mail (I think you need to get one of the tests through a practitioner), where they take fluid samples from you and can map out your brain chemistry through those samples. They then perscribe a regimen of vitamins to balance out your brain chemistry. I've heard rave reviews from some people that have tried their stuff, while other people have no reaction at all, and others have a small reaction that kind of fades away after a while (this is what happened to me). I think I just laid out way too much information here... sorry.

The other supplements you listed are very similar to 5HTP - they may work wonders or they may do nothing at all. Most supplements are no risk/either high reward or no reward, so they're kind of neat to experiment with (under a nutritionist's supervision, that is).

If you're looking for other therapies, you might want to check out light therapy (one kind called Syntonics is often very helpful for this sort of stuff, and I've heard of some people having success with EMDR, though EMDR can often solicit some pretty violent reactions so enter into that carefully). The one therapy that I've done that's made the biggest difference for me is called Cranio-sacral therapy - it's very light and gentle and can bring about PROFOUND changes in your mind and the rest of your body. I've been doing cranio-sacral therapy for about 5 months now, and during those 5 months I've recovered more from my injuries than I did during the 4 years that came before. It doesn't work for everyone, but when it does it can really help things out, so I'd recommend it.

Hopefully this helps.

what's up my t.b.i. is miserable and anoying as hell but I try so here I go Her is how it hapened on june 22 of 01 I was at work and got of at about 2;45 in the after noon I was working in TurlockCA and going to pick up my then wife and son about 3 miles away north on hwy 99 in CA i was in the slow lane geting ready to turn of to go to my Aunt and uncles house wherethey were At. A man goinging southbound in the slow lane also witnesses said he might have droped his cell phone he lost control of his truck unfortunitly he went over three lanes saouthbound the center devider and three lanes with out hiting anyone unfortunitly went right in front of my truck people that saw said I hit his truck between the bed and the cab of his pickuphis truck split in half and landed on the side of the roud ond so did my truck the fire department took the jaws of life to get me out of my truck they got the other man out of his The ambulence said he died instontly didn't even know what hit him. Unfortunly he died and sometimes I wish it was me and not him.
My brain is starting yo hurt so I will say bye. Anybody reading this anwants to pin pals fell free rite back your pal J.Z. or [ J] talk to you later hopfully bye

Rashelle

Sounds like quite a accident, and that you were very lucky to come out alive.

Hoping you can return and tell us what kind of injuries and therapies you have been through.

Donna

Hi all, I let my son use my space last night. His name is J.Z.. Sorry ,I hope I didn't mess you guys up. I should have wrote you a little note to explain before I let him use it. With his TBI, I need to see if he can use this. If he can I'll set him up a page. Sorry again, Rashelle