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Posted

I just finished the documentary "Changes..." and was interested by the part where the female doctor mentions a medication called Provigil for people who have somnolence as a POTS symptom. I had never heard of this before, and I cannot find any topics on here about it.

Has anyone tried it, or one of it's brethren (modafinil, niuvigil)?

I usually do not take pharmaceuticals because I get side effects 90% of the time. But I have been trying to overcome the need for 10+ hours of sleep for years and nothing has worked (excercise, cutting out caffeine, SSRIs, beta-blockers, licorice, etc.). Major life complications will follow if I cannot get, maintain, and perform exceedingly well at a job this fall.

Any advice is appreciated!

Thanks!

Posted

i can't wait until someone answers you - this is all ME!!!!! i'm struggling to keep my eyes open right now because i only got 7 hrs last night. working from home and can barely hack it today. i need between 9-12 hours. fun stuff. my doc wants me to do a sleep study. not sure if that will help. even if i have apnea, i doubt my problems are becs of that.

i'm like you, i have major problems with side effects to medications, including coffee or any stimulant, so i don't know what to take when i feel like this. the only answer is SLEEP.

Posted

I took provigil for a couple of months last year. I had no heart issues at the time and my doctor thought I had chronic fatigue syndrome. It didn't really do much. I noticed an improvement in my overall fatigue, but I certainly wasn't great. It was also very difficult to get my insurance company to approve it. It might be worth a try, but for me it wasn't too helpful unfortunately.

Posted

what's crazy to me is that if i scheduled my life around my sleep and work, i wouldn't have much time for anything else. how are you supposed to get 10+ hours of sleep and hold down a full-time job? get up, work, sleep. get up, work, sleep. how do you do laundry, cook, etc.? much less have any fun. i'm so sleepy today. sorry if i'm not making any sense. :huh:

p.s. i really don't like taking medication. i'd hate to have to add another one to the mix.

Posted

Thanks gofl1, even a slight improvement in overall fatigue might be worth a try for me!

Anoj, I totally hear you!! I only work two days a week right now, but on those two days I a basically a zombie. Once I go back to a 5-day work week, I know I am going to be very unproductive at home and will probably have no social life!

Posted

we can take this convo to PM if you'd like, but man i can relate to you. i wish i could work 2 days a week! i hate that we need money. i wish my hubbie made 50% more or i won the lottery. life would be so much simpler if we could just focus on taking care of ourselves. it's my first day back at work (from home - ha), and already i'm so foggy i can't think straight, and i skipped physical therapy. :unsure: i just can't seem to do everything. :wacko: :wacko: :wacko: :wacko:

that's the crazy thing about this illness. when i'm not working, i look fine because all i do is sleep and exercise. but when i'm working (pushing myself), i'm symptomatic. i imagine trying to explain that to a disability judge. hrmm..

Posted

"get up, work, sleep. get up, work, sleep" wow... that describes perfectly the last 3 years that I worked.... I had to go straight to bed when I walked in the door in order to get up and go to work again the next day. After the 3rd year, I became symptomatic while driving and had to stop.

I have been wondering if Provigil would help me, too, after re-watching "Changes". I have lost so much of my concentration that I can't even read a book anymore. Oh, how I would love to have that ability back! I tried Dexedrine. but it knock me out like a sleeping pill for goodness sake, lol!

Posted

Okay, I asked my naturopath about Provigil yesterday and she said it is often used for Parkinson's and MS patients. She also said you can build up a tolerance to it. So she wouldn't prescribe it because if I do get MS she'd like that drug to be an effective option. Apparently POTS symptoms mimic early onset MS? I don't know... I kind of think she overreacts sometimes.

Posted

She said that she is keeping an eye out for MS symptoms because she is worried that I might get MS based on my symptoms. I don't think she is at all right on that though. Although I guess about 50% of people with MS have POTS.

Posted

My doc won't prescribe me Provigil (or anything else that is supposed to increase attention/wakefulness) because she says I'm already on too many brain-messing meds and she's uncomfortable tinkering with things lest I get unstable. Which I totally understand, but part of me wishes I could try it :^)

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