sleeping changes

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

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sleeping changes

Postby steves on August 27th, 2003, 9:26 pm

This is my first post. I'm a 35-year-old male, extremely healthy, with one month of twitches under my belt. For the first two weeks, I became extremely concerned about my symptoms, which only made them worse. I was sure that I had @!$ (I don't even like to spell it!), and I couldn't sleep or eat. I lost five pounds, and was literally scaring myself sick.

After two visits to a neurologist, a normal NRV/EMG test, and no other sinister symptoms, I'm ready to live with the fact that I probably have BFS. So far, it definitely seems manageable. I'm not crazy about the occasional sore calves, feet and hands, and the overall tired feeling I get once in a while.

What I can't stand, however, is my new sleeping pattern. Before BFS, I used to sleep through the night--uninterrupted. Very little could wake me up. Now, I wake up at least twice a night. I usually go to bed by 11 p.m., and I always am up between 1-2 a.m. I can usually go right back to sleep, but I'm up again by 5 a.m., and it's hard to get back to sleep after that.

Anyone having similar sleep pattern changes? Anyone been able to do anything about it? I don't want to take nighttime drugs that zonk me out. I just want my old sleep pattern back!!!

Steve in Houston, TX.
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Postby wakefield on August 27th, 2003, 11:09 pm

Steve,

Your dilemma sounds very similar to mine. I also had (and still have) the anxiety associated with that three-letter word. Although I felt tired all of the time, like you, I could not maintain a regular sleep schedule. I believe I was waking up in the middle of the night and "worrying myself awake". I have been prescribed Ambien, and it works wonders for me. I'm afraid I don't know any non-drug alternatives other than daily exercise, meditation, and general relaxation techniques.

Chris
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Postby uber on August 28th, 2003, 3:39 am

wakefield believe me i suffer exactly the same problem as you do, sometimes I beat it and it goes away and sometimes it just comes back :(

its just the anxiety/depression that comes with your problems sadly...you could try natural remedies of course, exercise, yoga, better diet etc..or what you could do is buy some over the counter sleeping medication and just do a 2 week course. The standard medication doesnt "zonk" you out as you put it, but merely puts you into a deeper sleep, and as its only for 2 weeks you wont become addicted to them.
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Postby kdog on August 28th, 2003, 7:22 am

Steve,

Your sleep pattern is also like mine. I was waking up about 3 times a night. I take only one 25mg Xanax before Bed and that has helped tremendously. I too think it is the anxiety and constant worrying that speeds up adenaline and wakes you up. I now only wake up at about 3:00 am and then again at 6:30. Im self employed so I set my own hours. I feel better when Im up and moving so I hop right up at six at and get moving. Also there is an all natural remedy called melatonin that may help. Good luck, you're not alone.

Don
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Postby garym on August 28th, 2003, 1:52 pm

Steve,

what is the name and location of your neuro.? I'm in the houston area and would like to get a second opinion.

Thanks for any help.

Gary

I was just dx. and my sleep patterns have been the same as yours...Hopefully it will get better
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Postby Jenn311 on August 28th, 2003, 2:01 pm

Hey there seems to be a lot of BFSers in Houston. Maybe it's all those toxic fumes heading over the city from Stinkadena.

:wink:
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Postby steves on August 28th, 2003, 2:16 pm

Thanks for the replies/advice.

Gary: My neurologist was Dr. Pollack at Houston Northwest Medical Center (off FM 1960). Actually, Lynette Gogol, who is a D.O. (osteopathic doctor) working in his office did the EMG/NRV. She suspected BFS on my first visit, and all but confirmed it after the testing.

Actually, I don't feel like I've been too stressed out lately, so I thought my sleeping would return to normal. Maybe it still will...or maybe my anxiety is more sub-conscious now!

Steve in Houston
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Postby Arron on September 3rd, 2003, 12:27 am

unconcious anxiety will disrupt sleep and cause waking. You can be nervous without "feeling" nervous, just as some people get tense and get "tension" headaches and stiff / sore muscles without even noticing that they are all tensed-up.

Your brain works even though you are sleeping. Ever have trouble sleeping the night before you leave on a big vacation?, or before a big day? You toss and turn all night! Same thing with the BFS / ALS scare and anxiety.

You are "trying" to deal and come to terms with something that obviously scares you. Enough to stop eating and sleeping, see doctors and post on this site, so even though you have "conciously" told yourself that you don't have ALS, the feeling and anxiety of "what if", is still lurking in your head, even while you sleep, and it WILL disrupt it several times in a night.

This is VERY common for Generalized Anxiety Disorder sufferer's and is also why antidepressants help you sleep better. Notice that everyone pretty much says they have the same anxieties and when they take an antidepressant or an SSRI med, such as Ativan, Valium, Klonopin, Xanax, etc, they sleep better? Anxiety. BUT, I still don't think BFS itself is anxiety related....
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Postby mano on March 8th, 2004, 2:51 pm

I tried ambien not for me and xanax. the best has been 1mg. of klonopin at bedtime and I sleep through the night. hopefully it's a placebo effect because i would like to get off it this month. It's been 3 months.
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Postby uber on March 8th, 2004, 5:16 pm

Steves I had exactly the same problem when my twitching started i got so anxious about it I was waking up having nightmares all the time. Sleeping problems/nightmares etc are all consistant with Anxiety.

I know you say you dont want to try sleeping drugs but perhaps a 1 or 2 week course may help. Dont believe the hype around sleeping drugs become dangerously addictive...its only if you have been taking them for quite a length of time. I was on ambien for a month and came off them no problems at all. My doctor always makes sure I have some spare if im having an "anxiety day". I usually take 6mg of Diazepam around 8pm and 10mg of Ambien around 10pm (make sure you take on an empty stomach or they dont work).

A warning about Ambien though...well I dunno if Id call it a warning cause I quite enjoy the effects they give. They make you seriously drowsy...they can also make you have hallucinations, my vision often goes double when I take them. They make you feel very light headed and as soon as you lay down to go to sleep you are out cold in seconds....excellent stuff :) Sorry if it sounds like im promoting drugs, but Ambien is 1 of the few drugs that have really helped me in the past. As for Diazepam, they make you feel mega relaxed.....if you take around 6-10mg they will take all your anxiety symptoms away along with your twitches. Quite a shame they are an addictive drug and have long term health effects cause I could quite happily live the rest of my days on a Diazepam and Ambien diet :) You need to be very respoinsible with them...at least you do in the UK, if my doctor thought I was abusing them he wouldnt prescribe me them ever again.
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