BFS and Sleep

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

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BFS and Sleep

Postby seventhcandle on August 31st, 2012, 4:15 pm

Ever since having BFS, my sleep has been absolutely miserable. Not only do I get twitches at night in every imaginable place (head to toe), but I also get really annoying and frequent myoclonic jerking which makes it impossible to fall asleep or stay asleep often. And it keeps getting worse as the days go by.

How do you guys deal with the sleep issue? What works to help you sleep at night, especially with all the twitching and jerking?

So far, anything I've tried has backfired on me and made the symptoms of bfs worse, so I'm interested to hear what works (and doesn't work) for you guys. Thanks!
Been on the BFS journey since 6/26/12...

Twitch way do I go from here?

BFS does get better with time. Almost two years in and able to do almost everything I could do before I had this condition. Still twitching away of course...
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Re: BFS and Sleep

Postby MarioMangler on August 31st, 2012, 6:21 pm

Try to meditate for 20 minutes right before bed. And make sure you are doing nothing that stimulates your nervous system in any way whatsoever. No reading a scary book, no watching TV, no video games, nothing. Try to find the most boring thing on the face of the earth and read it for 15 minutes right before you go to sleep. Try to make your body as bored as possible right before bedtime. My trick is I used to read a book about astronomy.

Alternately, you could also pop a benadryl or a klonopin because those would work too.
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2. No, the location doesn't matter
3. Yes, we have all had that symptom
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5. No, that's not ominous
6. No, you don't need an EMG
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Re: BFS and Sleep

Postby Carts on August 31st, 2012, 6:27 pm

I too get similiar symptoms. I sort of cycle in and out of those types of twitches. Stress seems to bring my stuff on and the more I can relax the better I am. I do take a low dose of Celexa that has helped my aniexty.
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Re: BFS and Sleep

Postby Yuliasir on August 31st, 2012, 11:54 pm

I was using first benzos and gabapentine (separaterly of course) as my sleep pills, then - since I am not on gaba or benzos any more - I returned back to my dear and beloved valeriana root pills - they never miss the goal. Doxylamine is also a good option but it is for severe cases of sleep disturbance because it is not for long usage, as far as I understand.

Then - finish any work in 2 hours before the sleep time. Drink a cup of tea in English way - with milk or cream (more dairy products than tea :). As Mario said, read the most boring book you can found in your library or read the book you know by heart, like Three Mousketters, for example ( I assume almost everybody on the West knows the plot so there would not be any surprises in it). Historical books are also good for that - like Gaius Julius Caesar, Notes on Gallic war - well written and absolutely kicking asleep, find any you would like, however.

Also overall decreasing of daily workload helps (if possible).
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Re: BFS and Sleep

Postby seventhcandle on September 1st, 2012, 9:11 am

Yuliasir wrote:I was using first benzos and gabapentine (separaterly of course) as my sleep pills, then - since I am not on gaba or benzos any more - I returned back to my dear and beloved valeriana root pills - they never miss the goal. Doxylamine is also a good option but it is for severe cases of sleep disturbance because it is not for long usage, as far as I understand.

Then - finish any work in 2 hours before the sleep time. Drink a cup of tea in English way - with milk or cream (more dairy products than tea :). As Mario said, read the most boring book you can found in your library or read the book you know by heart, like Three Mousketters, for example ( I assume almost everybody on the West knows the plot so there would not be any surprises in it). Historical books are also good for that - like Gaius Julius Caesar, Notes on Gallic war - well written and absolutely kicking asleep, find any you would like, however.

Also overall decreasing of daily workload helps (if possible).


Thanks for the suggestions, however, doxylamine is what got me into the bfs mess to begin with - it's actually the drug that triggered it. And then I tried Ambien one time and it made things exponentially worse. And then I tried some l-theanine and well, it made things even worse, now to the point where I don't get any deep sleep at all and I barely sleep 2-3 hours a night, if I'm lucky.

I feel like my only hope is benzos at this point, but if I reacted badly to Ambien (I know it's not a benzo, but it acts like one) and it made me hyper and increased my twitching, do you think I will find the same bad experience with klonopin?
Been on the BFS journey since 6/26/12...

Twitch way do I go from here?

BFS does get better with time. Almost two years in and able to do almost everything I could do before I had this condition. Still twitching away of course...
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Re: BFS and Sleep

Postby Yuliasir on September 1st, 2012, 9:29 am

Well, with such deep disfunction of sleep as you describe, I believe you rather have to ask sleep specialists, not your fellows at the board... maybe they can do some tests to see what is going on with your brain causing such reactivity...

As for benzos, nobody can tell in advance how you could react to it. They are so individual....

Anyway less then 3 hours of sleep per day is a real problem, I believe... However I still think you might also try herbal sedatives at least to decrease overall high NS response. But professional help should be addresed too, on my point of view.
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Re: BFS and Sleep

Postby Seepi27 on September 1st, 2012, 2:51 pm

MarioMangler wrote:Try to meditate for 20 minutes right before bed. And make sure you are doing nothing that stimulates your nervous system in any way whatsoever. No reading a scary book, no watching TV, no video games, nothing. Try to find the most boring thing on the face of the earth and read it for 15 minutes right before you go to sleep. Try to make your body as bored as possible right before bedtime. My trick is I used to read a book about astronomy.

Alternately, you could also pop a benadryl or a klonopin because those would work too.


Advocating klonopin, without highlighting the risks, is irresponsible, to say the least. After over a thousand posts you should know better.
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Re: BFS and Sleep

Postby Seepi27 on September 1st, 2012, 2:57 pm

seventhcandle wrote:

I feel like my only hope is benzos at this point, but if I reacted badly to Ambien (I know it's not a benzo, but it acts like one) and it made me hyper and increased my twitching, do you think I will find the same bad experience with klonopin?


If your only hope is benzos, then it's false hope, I'm afraid, unless you take them for no more than a week or two at the very most. However, it is my understanding that GPs are all too quick to hand these things out like candy, thus embroiling unsuspecting patients in a vicious cycle of addiction, interdose withdrawal and a myriad disabling and often quite horrendous symptoms.

Benzos have very nearly ruined my life. I say 'very nearly' because I refuse to give into them completely. But if you have any love for yourself or those dear to you, don't go near a benzo, not now, not ever. They have their place in medicine - as sedation prior to operations, for example - but they should never be used as a quick fix for sleep problems. Go visit a sleep clinic, talk about 'sleep hygiene' with a medic, buy some valerian root and try finding a solution that way. But don't go down the benzo route, not if you value your physical and mental health.

Message me if you have any questions about benzos and the havoc they wreak.

Best wishes!
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Re: BFS and Sleep

Postby raindog on September 2nd, 2012, 3:21 pm

Pain and sleep, hard to fault a bit of weed

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Re: BFS and Sleep

Postby plainslady on September 2nd, 2012, 3:53 pm

I second Raindog's idea. Lol. Works wonders but our lovely gov't would rather spend billions of bucks fighting weed than discovering the benefits of it for medicinal use...but I digress. My sleep has been a disaster since 2007. Severe bouts of insomnia, unrefreshing sleep, daytime drowsiness. I've never had a sleep study done because I am positive I would not sleep. If I can't sleep while travelling, muchless in the comfort of my own home, thers no way in hell I could sleep in that kind of setting. Sleep problems are my biggest reasons for not having a job outside of the home. After working a full time job for 2 1/2 years on 3 or 4 hours of sleep a night its no wonder my neurological system went apesh*t.

I can be dead tired at 2 or 3 in the afternoon but by bedtime I am fully wired again. The more tired I am, the harder it is to fall asleep. Night before last I was up until 5am...slept for 5 1/2 hours, got up, had a busy day, and it was 3am before I fell asleep this morning. This happens all the time.

I've been through it all...Ambien and the like as well as benzos put me to sleep but I cannot function the next day AT ALL no matter how many hours of sleep I get. Things like benadryl, valerian root, melatonin...I might as well take a sugar pill as they have no effect on me. My mother says I was an insomniac even as a child, so it seems I have a bit of faulty wiring. (Imagine that!) I have fully given up on sleeping like I should. Its just never going to happen.

Frances
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Re: BFS and Sleep

Postby raindog on September 2nd, 2012, 5:48 pm

plainslady wrote:I second Raindog's idea. Lol. Works wonders but our lovely gov't would rather spend billions of bucks fighting weed than discovering the benefits of it for medicinal use...but I digress. My sleep has been a disaster since 2007. Severe bouts of insomnia, unrefreshing sleep, daytime drowsiness. I've never had a sleep study done because I am positive I would not sleep. If I can't sleep while travelling, muchless in the comfort of my own home, thers no way in hell I could sleep in that kind of setting. Sleep problems are my biggest reasons for not having a job outside of the home. After working a full time job for 2 1/2 years on 3 or 4 hours of sleep a night its no wonder my neurological system went apesh*t.

I can be dead tired at 2 or 3 in the afternoon but by bedtime I am fully wired again. The more tired I am, the harder it is to fall asleep. Night before last I was up until 5am...slept for 5 1/2 hours, got up, had a busy day, and it was 3am before I fell asleep this morning. This happens all the time.

I've been through it all...Ambien and the like as well as benzos put me to sleep but I cannot function the next day AT ALL no matter how many hours of sleep I get. Things like benadryl, valerian root, melatonin...I might as well take a sugar pill as they have no effect on me. My mother says I was an insomniac even as a child, so it seems I have a bit of faulty wiring. (Imagine that!) I have fully given up on sleeping like I should. Its just never going to happen.

Frances


Gee Frances you could be describing me, I'm supposed to be having a sleep study ...been waiting over 6 months but this is the UK ...Ive not got apnea for sure just wired up wrong like you describe, somewhere down the line a 3 amp fuse blown and was replaced by a 13 amp. :lol:
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Re: BFS and Sleep

Postby mike fla on September 3rd, 2012, 10:28 am

Frances,

I think I know the answer to your problems. Get a night job and sleep during the day and you should be GTG.
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