Sleep

Information about how to manage or reduce the severity of BFS symptoms

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Sleep

Postby Davidd on September 24th, 2002, 1:11 pm

Here's a question to everyone out there...and if you answer, you have my forever gratitude...for all I want to do is sleep straight through one night...or even just 5 hours straight will do...

I have had the twitches now for a month or two (particularly in the calves...what a shocker) and find it very difficult to sleep. I am a light sleeper to begin with so when it feels like someone is poking at my calves all night long this only makes things worse. If the twitching were at a constant rhythm perhaps I'd get used to it, but it'll twitch, then stop, then twitch again....and sometimes it just feels like there are these *beep* bugs crawling up my calves because of the twitching intensity. Has anyone taken anything or done anything to help cover up the feeling or do you just get used to it after a long time? I've tried wearing socks that go up high and other strange things but nothing seems to work and I am always soooo tired...I'm not stressed over it (at least I don't think I am)...it's just the poke-twitch-poke feeling that keeps me awake...

Thanks.

--David
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Postby Jake_the_twitch on September 24th, 2002, 1:16 pm

Davidd:

The only solution I have found for sleep is either total fatigue after 3-4 nights of rotten sleep or taking a sedative before going to sleep. Even after 1 year of having this I still find it hard to sleep.
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Postby Arron on September 24th, 2002, 6:57 pm

ask your doctor for a sample of Ativan (Lorazapam) @ 1mg dosage, Valium (Diazapam) @ 5mg dosage or something like Klonopin or Xanax. They will calm you down and you will sleep like a baby. I prefer the Ativan (Lorazapam) myself.
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Postby Annie on September 25th, 2002, 10:52 pm

Ambien is good for occasional insomnia. It works well and you don't feel groggy the next day. I wouldn't use it on a regular basis, though. I think once you stop worrying so much about your twitching you'll sleep a lot better.
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Postby Jen on September 26th, 2002, 6:35 pm

I have a lot of cramping with the twitching, and my GP prescribed Flexeril. It stops the cramping, but not the twitches. It does, however, "knock me out" and I sleep like a baby :) . I've no longer freak out over the twitches, so when I do feel them, I just roll over and go back to sleep.
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Postby Davidd on October 1st, 2002, 8:48 am

Thanks for the responses.

I went to see a sleep specialist yesterday and have begun working on the problems. One of these days I'm sure I'll get a good night's sleep...one day.. :)

--David
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Postby tlotoxl on October 2nd, 2002, 4:52 am

i get terrible insomnia. when my bfs really started acting up in july i was only getting 3-4 hours every night when generally i really need around 8 to feel even remotely healthy. i was even more stressed out at the beginning of august because i was going to india to a friend's wedding and i was terrified of having bfs there and not being able to travel and maybe a vegetarian diet aggravating whatever potential autoimmune problem i have, etc....etc...

well, i've never slept so well as i did in india. at least not since i was a kid. maybe it was just the transferal of every-day worries and ennuie to "oh my god i don't want to get malaria" and "thank god i didn't get pick-pocketed today" or maybe it was just a change of pace, but it really improved things. i still had bfs, but my fasciculations were less common (despite the incredibly high temperature in india) and i obsessed about them less.

now i'm back in japan and i hope i can keep sleeping well like i did in india, but only time will tell.

as for tricks to diminish the number of times the twitches wake me up... i used to sleep on my side with one leg resting on top of another. unfortunately this effectively doubles the chance of me noticing a twitch since i have both the twitching leg and the other leg there to feel it, so when the fasciculations are bad i sleep with my futon cover between my legs so that they will not touch during the night/vibrations will be attenuated. lame trick, but it does help me a bit.
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Postby Jen on October 3rd, 2002, 7:01 pm

Good luck with the specialist, David. I hope that you get some much needed rest very soon :D .
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Sleep

Postby Davidd on October 3rd, 2002, 10:08 pm

I hope that the sleep specialist thing works out for me.

I am on a strict regimen right now of going to sleep at a certain time and waking up at a certain time, along with no caffeine and no alcohol (yes, no alcohol!!). I've been tired all week but I have found that I am sleepign 4 to 5 hours per night which is better than it's been in the past. So, we'll see what happens when I see him again in 2 weeks.

What has been anyone else's experience with sleep specialists?

--David
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Postby Jen on October 4th, 2002, 6:15 pm

I haven't had any experience with a sleep specialist, but greatly reduced my caffeine intake years ago. I rarely drink anything with caffeine, and it really does make a difference.
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Postby Nole on October 4th, 2002, 7:35 pm

I also have no caffiene in my diet. I sleep much better because of it and you will probably twitch less as well.
Good Luck
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Maybe you have Restless Leg Syndrome too!

Postby Davey on October 16th, 2002, 1:18 pm

Creepy crawly sensations in the legs at night? Maybe you have Restless Leg Syndrome in addition to BFS. I have RLS and it is not fun. Check out:

http://www.rls.org

I take neurontin (300 - 600 mg at bedtime) and supplement it with vicodin (when needed, which is rarely) for these creepy crawly sensations. I get them in my legs and left arm. These medications help immensely.

RLS is common. I heard Dr. Dean Edell say that perhaps 10% of the population has it.

I bet a lot of people with BFS have RLS and don't know it. I also bet they are related. My opinion of course. Check it out! :shock: [/url]
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Postby Davidd on October 16th, 2002, 6:09 pm

The sleep doctor told me that it sounds like I do have a variation of Restless Leg Syndrome.

Since my last posts about sleep, I have improved a bit. 4 nights out of 7 I definitely get 4-6 hours and 3 nights out of 7 I get 2-4 hours on average...but this is much better than it was before. I think the sleep recovery for me is going to take some time...but I am still hopeful.

BTW, the creepy crawly sensation doesn't bother me as much as it did.

--David
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