I was happy to find this Forum for Traumatic Brain Injury & Post Concussive syndromes. but surprised --
thought would be more activity, that this forum would be buzzing w/ questions, stories, sharing, support, info.

I'm trying to learn all i can about TBI & PCS
and overlapping conditions
as well as other disorders & challenges in my life

there are so many dimensions,faces of TBI
and the affects of PCS..
for me, the physical, tangible aspects are easier to deal w/
than the cognitive issues -- in their various manifestations
I can't elaborate w/out getting lost in process,
as I get lost in the processes of daily life
feeling sabatogued by my brain
wondering why can't I THINK?? talk?? write?? **
frustrating, confusing, exhausting...
hope for more... and better
ways to deal w/ my brain & problems w/ thinking, memory, problem solving,
and issues connected to TBI & PCS

**"brain damage" --excuse or justification --

I'm losing my thoughts & words--again...


hope to see more in this forum
as well as other relevant areas

Hi Pono

yes, this particular forum for TBI and PCS is just a week or so old, and so will take a few more members posting regularly to get some more activity.

So sorry that you are going through all this Pono...I can only imagine how hard it must be for you.

I did post some links to earlier discussions on PCS up above here on the useful sites sticky thread, so not sure if you have read thru those. They have some very valuable information and experience sharing on them. http://neurotalk.psychcentral.com/sh...ad.php?t=19462

Do stay with us Pono
More will start posting soon

I hope you will find info here to help you as well as the support you need from others who understand what you are going through

Hi Pono,
good to meet you.
There are a number of people scattered around the forums here. This forum is brand new. Hopefully people will find it and start posting here. I have had a post concussion syndrome for a couple of years although I was told it's not supposed to last that long. LOL Call me a cynic but that's not the impression I'm getting. I'm doing pretty well this past month. A lot of my symptoms have got a lot better all of a sudden.
Very tired here and I have to go, but just wanted to respond to your message.
Talk later,
Lara

Hi Pono,

Sorry to hear that you are feeling bad. You're not alone. I had a concussion about 8 months ago whilst doing sport. I went back to training after about 10 days because I felt fine and the doctor gave me the all clear but then a few months later I started feeling very tired and started getting headaches all of a sudden. I had an MRI scan done and that came out as fine and was diagnosed with PCS. Since then I have been needing much more sleep than normal, got poor concentration and now that it's been so long, I'm getting fed up with it all. Some days I feel so tired that it's hard to get up and do anything useful at all which makes life depressing because I can't go out and see friends, work or otherwise enjoy myself. There are days when I do feel more awake and that gives me hope that it will end sometime but then I get a bad day again and it's like it's all starting again.

Has anyone recovered from PCS? What is your story and how long did it take?

Hi All,
Glad to see some more activity on this site. There were alot more posts a few months ago when the weather was worse. I hope you all get much better soon. My son has PCS, the heat seems to fatigue him alot lately. He really has a limited amount of mental stamina and gets a strained look on his face. He seems to be suffering with irritability with the whole thing. Lazar, I am happy to hear you have had a sudden change fot the better. Although I do not personally have PCS, I feel the pain and frustration and wish my son did not have to suffer with such a bizarre, unpredictable and difficult to describe clustering of symptoms. I feel now that he is getting better but so fragile and vulnerable to relapse. I too wish we could hear from past victims who are doing well to give us all hope. Hope you all have a good week and "hang in there" and keep plugging at it . I do feel time will heal.
Nancy

glad to see more activity also sorry for the reason ya' all are here--
personally struggling or watching loved one suffer. Hard to feel hopeful
when at the affect, & outcome is so questionable , as is sequelae.

Yes it would be good to hear from others who are doing well
I've been reading the scattered Posts & responses here.
Thanks to all for the support.

I composed a detailed Post earlier -a major accomplishment-then Lost
now can't recall what .....

reply to question: what's My Story...
I've had several concussions; wonder about repetitive head trauma.
I've just not felt "right" since last injury 6 mths. ago struck in head by hydraulic lift on wheelchair van. knocked down & out for several minutes. strange accident happened at hospital (had taken my father to ER)
... under circumstances, I chose not to seek treatmt then. didn't think I needed stitches for laceration; big lump & headache, w/ nausea after.
two days later woke w/ excruciating headache, blurred vision, vomiting,
and more . went to ER, tests showed no brain bleed. Injection helped headache & pain, but returned & has remained w/ nausea, photophobia,
& other sensitivities esp to sound/noise, smells.
I couldn't sleep at nite, exacerbated the fatigue & weakness. and
"emotions" -irritable, anxious, depressed, confused... felt I'd lost myself.
cognitive dysfunctions --memory, thinking, and doing , etc...
began to sleep at nite, w/ meds, but wake often; feel tired & sleepy and
retreat to bedroom often to rest but also feelings of overwhelm. Hard to be around people & stimulation . so much more that is hard, to describe and contend with. For me the biggest challenge is maintaining as primary Caregiver for my terminally ill father. I live w/ him, struggling to tend to his needs but not able to keep up w/ other responsibilities in home. Do have aide 9 hrs week , but ..... don't know what's going to happen.

Pray for best outcome, for all.....

Pono,
Thanks for story. I imagine the stress of primary caregiver never gave you much rest time. We need to get more prayer and spiritual thinking in our recovery process. I think that kind of energy may be more effective than anything else in this injury. My son also is not very comfortable in a very social environment. He does not want alot of attention to him and gets anxsious. You are organizing yourself and being more articulate than you think. Describing how you are experiencing life with your brain injury is very difficult and one of the biggest problems for patient's. Sam, my son, hates to answer any questions I have in regard to how he is feeling. We will keep site posted on our recovery and any helpful advise we get. Tomm. we go to neurpsychologist and next Monday his neurologist. Both are PCS specialists. Rest up and try to keep positive.

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.