Sleep Problems... Suggestions?

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

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Sleep Problems... Suggestions?

Postby nate911 on November 7th, 2011, 1:25 am

Hi Everyone,

I posted my story in the "Support Group" forum and mentioned in it that one of my biggest problems is getting to sleep at night with the twitches. I've accepted the benign condition of BFS and do not think it is progressive to some horrific disease. However, I have a hard time falling asleep because I can't stop concentrating on my legs which seem to twitch a lot more when I am lying down. I've tried some deep breathing techniques and other meditative/relaxation techniques in order to try and get my mind off of them but sometimes, it's just too difficult. After all, a part of my body is moving when it shouldn't be!

I mentioned in my other post that I have had success with Xanax in helping me sleep (and it also seems to decrease my twitching). However, I have heard that Xanax can become addictive and I don't want to become dependent on it for sleep. Has anyone tried anything else that has worked (someone else mentioned klonopin but I assume it is similar to Xanax in terms of dependence)?

I feel like if I could just get a restful sleep at night my anxiety (and as a result twitching) would greatly decrease!

Thanks for your time!
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Re: Sleep Problems... Suggestions?

Postby MarioMangler on November 7th, 2011, 2:19 am

Here's something really easy that helped me a lot when I first started with BFS. Put a pillow between your legs. If your legs aren't touching, you don't feel the twitches from one on the other, so you will cut down the sensation by like 200%. I did that at the start and it made a world of difference in getting to sleep at night.
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Re: Sleep Problems... Suggestions?

Postby mwagner on November 7th, 2011, 10:54 am

When I'm not taking either Xanax or Ambien, I take melatonin, which works well for me. I take Ambien about 3 nights a week, Xanax once a week, and melatonin the rest of the time. I was told Ambien is safe and non-addictive as long as you take it 4 nights a week or less. If you take it more (like every night) then you'll become dependent. My doctor told me Ambien has a way less risk of dependency than Xanax. You might give it a shot.

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Re: Sleep Problems... Suggestions?

Postby bfshopeful on November 7th, 2011, 1:01 pm

Valium, Valium, Valium....the mere fact that you are afraid of getting addicted means you won't.
"It's mind over matter. If you don't mind, it don't matter."
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Re: Sleep Problems... Suggestions?

Postby plainslady on November 7th, 2011, 4:10 pm

Because I have no idea whether or not you have an "addictive personality" I'm not going to tell you one way or the other what you should do. What I can share with you is my experience with Xanax. I was first prescribed Xanax when I was 18. I'm now 33. When I stared taking it I was told to take .25 mg up to .5 mg four times a day. Up until this neuromuscular freak out, I'd never taken more than 2mg a day, and that was a bad day! My 30 day supply usually lasted me 5-6 months. I've even gone years at a time without touching it. I did take more with the whole ALS paranoia, but once I returned to taking Zoloft and getting therapy I completely quit taking them over a three week period and haven't had any in several weeks now.

I know there are LOTS of people addicted to it, but I've never seen the big draw of being hooked on it. I only take it when my anxiety is sky high and even then it doesn't chill me out 100%. I never take it when I don't need it. Sometimes I think people who can get hooked on Xanax would get hooked on snorting bird s*it if they tried it. I know that's a gross mental picture, but seriously, most addicts are looking for the next big thing and sometimes they land on Xanax. That's just my not so humble opinion. :wink:
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Re: Sleep Problems... Suggestions?

Postby AndrewS on November 7th, 2011, 6:26 pm

Hey Nate,

Just wanted to put in my two cents. I am a medical student who has also been scared of getting addicted to random sleep aids. In my work with an addiction specialist (part of my psychology rotation), he claims that all of these drugs mentioned so far are addictive. The Ambien study was conducted over a 2 (3?) week period, but it takes 6 weeks to get addicted to the other similar drugs, so he claimed it was the biggest balogna study ever performed to measure addiction. But I would definitely think it would be less addictive than a benzo (like Xanax). I don't know if he is right, but I trust his knowledge and thought I might share it with you.

As for your sleep problems, perhaps you should try a non-pharmacologic approach, in the form of relaxation techniques. I have recently begun going to a psychologist who is helping me learn some of these techniques. One is the deep "belly" breathing technique. You might also simply try counting techniques and exercise to really tire you out and relieve stress (if you have time for it).

Here's to a good night of sleep!! =)
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Re: Sleep Problems... Suggestions?

Postby nate911 on November 7th, 2011, 11:13 pm

Thanks for all the responses today, everyone.
Last night was a horrible sleep night - really couldn't get my focus off of the twitching. So it was nice to see these messages!

Mario - I like the pillow idea. I've never thought of it before! I will give it a try tonight!

Mwagner - How long have you been taking Ambien for? Do you find on the nights when you take melatonin that you don't sleep as well, or are missing the Ambien? How much melatonin do you take and how soon before bed?

Bfshopeful - That's exactly what my doctor said today! He said to try and think of the xanax as there if I need it - and not to worry about taking it in those instances. He couldn't see me becoming addicted to it based on my history - which was reassuring. I was pretty "playful" in my early twenties and used a lot of recreational drugs but never became addicted to that stuff either.

Plainslady - Thanks for sharing your experience. I've only been taking .5mg a night and it seems to do the trick. My biggest fear is that I will progressively need more and more in order to sleep. Did you have to keep upping your dose?

AndrewS - I have a appointment to go to a psychologist sometime next month. I'm hoping to pursue CBT... My doctor offered me another SSRI today to try but I turned it down... I want to try and handle this on my own but sometimes it's just unbearable! Maybe Ambien would be a better sleep "back up" then xanax considering it may be slightly less addictive (or at least have a decreased chance of becoming addictive). For me it's a matter of trying to get my attention of the twitching. Since it's my calve muscles I can't really get any relief (I can't flex them easily in bed like I can my quads). So I have tried breathing techniques and I do exercise... but sometimes I just can't ignore the fact that I'm trying to relax and focus on "nothing" so I can fall asleep - while my legs are twitching up a storm!
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Re: Sleep Problems... Suggestions?

Postby plainslady on November 7th, 2011, 11:37 pm

I've always only needed .25 or .5 to sleep. It's never required more for me after all these years. But, I usually don't take it regularly...just as needed and mostly at bedtime. When I decided to stop taking it because my anxiety became more manageable, it was pretty easy for me to stop. I've never been the type to get seriously hooked on anything. Even with my pain medicine for my back I only take it when I can't tolerate the pain anymore. Addiction has never been an issue for me.
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Re: Sleep Problems... Suggestions?

Postby skinnywilson on December 26th, 2011, 8:23 pm

Klonapin and keep the room really cool. Dont let your body heat up too much. I sleep with the ac cool and 2 fans on in the room. The klonapin relaxes me, puts me to sleep, I dont think I am twitching because I am sleeping so well, I would not know it if I was.
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Re: Sleep Problems... Suggestions?

Postby cenkay.a on December 30th, 2011, 8:04 pm

ok so this is a completely different method to anything mentioned, and i completely understand it may not make even the slightest difference to alot of people on here, but for me this was a big help...

when i couldnt sleep because i was focusing on twitching 24/7, or if i woke up then couldnt sleep again, i would turn the tv on to a music channel (no depressive crap! just upbeat music) until i fell asleep, litterally for weeks i done this, and i still do it now and then if i cant sleep for whatever reason...


like i say, i can imagine it wont help alot of people, but for me, one of the most important discoveries to help me stop worrying LOL



take care
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Re: Sleep Problems... Suggestions?

Postby chicagobfs on December 31st, 2011, 4:22 pm

I use melatonin some nights when I'm nervous and have these weird jerks, usually works great. I split one pill in Half( 3mg) bought at Costco at very low price. Also I sleep with pillow between my legs as well for last few months and really improve my sleep. I found that I can't sleep when I'm too anxious or to hot as was told above, room should be at 68 F, at least mine is.
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Re: Sleep Problems... Suggestions?

Postby mwagner on December 31st, 2011, 4:34 pm

I just realized I never answered this. Sorry...

Mwagner - How long have you been taking Ambien for? Do you find on the nights when you take melatonin that you don't sleep as well, or are missing the Ambien? How much melatonin do you take and how soon before bed?



I have been taking Ambien for 10+ years now, off and on. I never take it more that 3 times a week and sometimes less. I don't miss the Ambien when I take melatonin. I take them for different reasons. I take Ambien when I need to get to sleep fast (like when I travel for work, or if it's really getting too late and I have to get to sleep). It only lasts 5-6 hours max in my system (10 mg) and then I'm wide awake. Melatonin works in keeping me asleep (I take 2.5 mg and take it about 1/2 hour before I fall asleep) but I don't sleep as deeply, and I dream a lot. I take Source Natural's that melts under your tongue and tastes good, and also has B6 in it. But I wake up tired and unrefreshed with melatonin (I think it's from all the dreaming, being in REM sleep is like being awake - all Alpha waves). But, at least I sleep quite a bit using it. Xanax also helps me sleep on occasion, and it's a calm and wonderful sleep, but I wake up groggy. Ambien is the only drug that helps me not wake up groggy, and where I think I hit Stage 5 (Delta waves - deep, restorative sleep) the most. I feel like I don't get much Stage 5 sleep with Melatonin.

(very long answer, I apologize).
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Re: Sleep Problems... Suggestions?

Postby dreadpirateroberts on January 3rd, 2012, 12:55 pm

I take one klonopin (clonazepam), 0.5 mg and one baclofen (10 mg) before bedtime. Calms the nerves (klonopin) and the muscles (baclofen). Doesn't get me completely through the night, but I do get relief for several hours. I don't think one gets addicted to xanax or other benzos (like clonazepam). It's more a dependency as your body gets used to the drug. I've never "craved" klonopin, but I know when I miss my nightly dose I have crazy dreams and sleep poorly. Because of this, I think withdrawal would be an issue (and its been documented as such) and one that should be considered.
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Re: Sleep Problems... Suggestions?

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