Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).


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Old 12-30-2007, 09:17 PM #21
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Lynlee, since you could pull up the site i copied what is said about provigal. i hope this helps.

Provigil (modafinil). Provigil is one weird drug. Its primary function is to promote wakefulness in people with narcolepsy, but it is being prescribed off-label for just about everything. It is approaching Neurontin (gabapentin) in the snake oil sweepstakes. At least the people at Pfizer know how Neurontin works and what it does. Provigil is a true mystery. Other than binding to a few dopamine sites in the brain, but not releasing any more dopamine like amphetamines do, the good folks at Cephalon haven't published (for the 2002 edition of the PDR) just how the hell Provigil does its magic, because they didn't know! They do know that monkeys like it as much as cocaine. The IAAF still doesn't know if it's stimulating enough to affect an athlete's performance, and who better to know about drugs than a sports federation, right? They plan on banning it next year. The World Anti-Doping Association has just banned it. Even though it doesn't do jack **** for an athlete's performance, except maybe in the biathlon. Anyway, Kelli White mentions how it helped her with narcolepsy in this article. I found it to be moderately useful for ADD and to counter the lethargy induced by my Topamax-Neurontin-Risperdal-lorazepam cocktail. I'd have enough concentration, focus and wakefulness to have a bit of a life until about 3:00 or 4:00 p.m. Then it was time to just watch Buffy and eat a reheated supper until the meds caught up with me and he fell asleep in front of the TV around 8:00 p.m. Believe me, it was a vast improvement. At least the food got made, the bills got paid and the dishes got washed. I was most grateful for having that much of a life every day thanks to Provigil. Through experimentation I found that 200 mg first thing in the morning worked best. Any more got me wired and vaguely hypomanic, and hypomania is a potential side effect for the bipolar. Taking extra in the afternoon or dividing the dose to take some in the afternoon just made me hyperaware of how god damn tired I was. Provigil has been found effective as a treatment for ADD for children in studies. According to my doctor, it works best for ADD if sleep disruption or brain injuries are involved. Why, just like me and Mouse!
Mouse finds it to be better much better than Ritalin but less effective than Adderall. She only takes it if her Adderall prescription is screwed up and she runs out. I found Provigil to have the mildest of antidepressant effects, although it is prescribed off-label as an antidepressant. Some people are finding it best when taken in a cocktail with other antidepressants, so maybe that dopamine action is just the boost their other antidepressants need. If the lethargy of mood stabilizers is just too much to bear, and believe us, we know about it being too much to deal with, Provigil is an option to discuss with your doctor. If you get samples, get a prescription right away. I found Provigil to be one of those drugs that if you stop taking it and start again it is less effective, although Mouse doesn't have such issues. I did great on samples of 100 mg, but then when I got a prescription for it and got it filled from Canada it took 200 mg to achieve the same effects, and nothing else changed in my cocktail. Some meds are just like that. Headache and nausea are really common side effects, but I didn't experience them. However, I have since had to start taking Provigil again, combining it with Strattera (atomoxetine) for ADD. This time 100mg of Provigil combined with 40mg of Strattera is most effective for concentration, focus and dealing with the lethargy, although I do get the headaches now and then.

Freakiest rare side effects: hallucinations and flatulence.
Initial dose is 100-200 mg in the morning and may be increased to 400 mg either as a single dose in the morning or divided into two doses. Doses above 400 mg are not recommended for anyone who does not have narcolepsy. Provigil is rated for doses up to 600 mg a day.
Provigil's half-life is 15 hours. I used to buy this med as Alertec from Canada, but the FDA or DEA rescheduled it right in the middle of my order being processed, which really hosed things. Anyway, no more purchases from overseas. For non-narcolepsy usage, the monthly cost is about $120-$330. For narcolepsy that can go up to around $500. Cephalon.
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Old 12-30-2007, 09:19 PM #22
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Old 12-31-2007, 12:42 AM #23
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Default Hi Lucy

Good Evening Lynlee, Sorry to read about your bad experience with Provigal no fun. I did look up this medication on the website Mc Gee posted and it does not look very promising for treating TBI/PCS symptoms.

Thanks for the website Mc Gee Bookmarked that one.

Pono was on line this am but did not post anything and the last 3 post on the another thread were to go get some help, lets hope that is what Pono is doing.

Take Care Jeffn
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Old 12-31-2007, 10:16 AM #24
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{{{{{{{{{{GREAT BIG HUGS PONO}}}}}}}}}} Gaye
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Old 12-31-2007, 11:43 AM #25
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Default Lynlee

Well it sure sounds like the Provigil is NOT for you! I'm so sorry that you went through that experience.

I still believe that it's good for me, as long as I don't take it two days in a row- because I tend to overdo it (as was the case this week. I'm STILL paying for it).

Today is my first day venturing out after my melt-down last Thursday. I've agreed to meet some friends for lunch- one of them being from out of state. I've been dreading it, to be honest, because I'm so tired. All I want to do is sleep and sit in a quiet room.

But- life goes on, so must I.

Again, sorry that this didn't work out for you. Isn't it interesting how our bodies are so different in the way they react to things?
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Old 01-08-2008, 05:42 AM #26
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Default Lori

Thanks, I was so disappointed that it didn't work and the pain in my head was awful - the strange thing was that I could actually feel it happening - even when I tried the half tablet - weird. I guess some part of my brain which has been damaged couldn't cope with the drug.

On the 2nd Jan, I was sitting on the couch and burst into tears and cried for hours and hours - nothing like the crying I had done previously - I think things had finally sunk in and the psych 'lessons" and the disappointment of the provigil not working finally really caught up with me - I don't think that I had ever really cried like that in my entire life - not even when my father died when I was 13. I was always so in control and when I felt like crying only ever got tears in my eyes and that was it - I think crying with physical pain is different. I'm raving!

Jeffn - I had studied it up on other sites and so had my GP - provigil was used for narcolepsy - and we had hoped that it could keep me awake all day instead of my 2 sleep times - honestly 6 years 7 months and now 6 days of this is enough.

I think that I will see what the craniosacral will do and then I guess my last option in the neuro feed back - I won't be able to do that myself - apparently some one has started it up in Auckland where I live so will find out about their qualifications and see if insurance will pay.

For about the first time in my life I feel like I have lost my sense of humour and seriously can't think of anything to look forward to plus I don't think I can drag myself back to work on the 21st Jan - don't know if it is the fact that all my holidays are gone until next Christmas or what. I suppose I should be feeling grateful that I can supposedly work 3 hours but at present I don't think I can any more.

And I hit my head again - car door frame again!!! Getting out of it this time - nothing seems to have come of it and the 3 days are passed but my distractability is at an all time high - memory also is hopeless.

Anyway - what do you call it Lori - a pity party - I think I have just been indulging myself big time!!!!!

Hope you are both doing OK and Lori - no over doing anything!!!!!!

Lynlee
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Old 01-08-2008, 07:55 PM #27
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Default Hi Lucy

Hi LynleeI've been useing Levothyroxine a thyroid suppplement for the last 30 days. This is helping with the chornic fatgue and mental alertness with no negative side effects and I'm able to stay awake all day.

I'm putting my money,time and research into neurofeedback and hope to have everything on line by the end of March. Yes March 08.I watched a documentary on PBS on sharks over in NZ pretty cool water and coast line over there.*OK Take Care JeffnPS I wear my pink bike helment everytime I leave the house so I wont bump my head
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Old 01-09-2008, 09:01 AM #28
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Default Provigil

is a "strange" drug ... per previously cited info/Links esp. www.crazymeds.org site .
as I do recall from trying years ago, Provigil, did help w/ daytime sleepiness --which for me now is more Fatigue tho I do fall asleep if/when i sit, esp wathcing Tv. Provigil made my sleep problems (NOT sleeping at Nite) much worse... so that is main reason I stopped that drug + some other info (i can't recall now) along w/ other adverse side fx.

there was a question if I did have narcolepsy--due more to drop attacks that manifested as Catalplexy, which supposedly only occurs w/ Narcolepsy.
Drop attacks continue (w/out def. DX) as does Fatigue & other problems.

I'm again trying to deal w/ some of those w/ Vitamins , supplements, Herbs.

B12 (as Methyl B12) -- for fatigue, & other BRain /neuro problems/

Magnesium --for Headaches...

I"m trying Kava , as herbal tea, for sleep & pain.

and some others ....
there's lots of great info at Forum for Vitamins, Herbs, suplemts-here @NT--check out or go there to ask/post specifics.


but I'm still continuing to search for other options--alternatives ---as well as try/use RX & other things as seems appropriate, etc.
BOTOX is one--for HA which may be my biggest issue recently, but it's hard to isolate ONE ting-- Fatigue, sleep problems, other pain /issues -- all play roles.... and create challenges and difficulties in daily life/living.

we are each different, unique--- and works works for one may be anothers poison.....

wishing all the Best....


Jeffn.... think I'll have to get me one of those helmets too!! can't afford any more dings in dis head...




I do feel NEuroFeedback is a great option but also had problems w/ accessing in my area (same w/ good CraioSacral practioner)

Last edited by pono; 01-09-2008 at 09:07 AM. Reason: add
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