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baclofen sleep cfs/fibro

heapsreal

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In my previous thread it was mentioned using baclofen as a sleep aid, after looking it up it looks like it could be very useful for cfs/fibro. Any other personal experiences would be good to hear about.

cheers!!!!
 

Lily

*Believe*
Messages
677
I have been using Baclofen since 2002. In the worst of my days with FM it was the first thing to help with the extreme muscle pain. For me, it seems to potentiate the effect of pain medication and sleep medication. I have a friend who has used it for years and years for restless leg syndrome. In fact that's how I first came to use it. Other medications I'd been prescribed left me unable to function, loopy and still in pain. My friend came to visit during a particularly bad time for me with FM. She was completely astounded at my condition as I seemed to sound so much better over the phone.

I had been to a rheumatologist who diagnosed FM and gave me a small dose of doxipen and said that was the extent of treatment for FM as far as he was concerned. My friend encouraged me to try some of her Baclofen in the hopes that I could get a half-way decent nights sleep. It helped me a great deal and it was such a relief.

She encouraged me to break the 20mg tablet into quarters and try it during the day to help with muscle spasms. It certainly did help. The FM morphed into CFS and though I still have muscle and joint pain, it's nothing at all like it was.

I don't think I'll ever give up my Baclofen and it is one of the few things that still helps me. It's such an old drug and so cheap. Some doctors look at you as if you have 2 heads when you suggest using it. However, whenever I finally saw a rheumatologist who specialized in FM, he said it was one of his favorite meds to prescribe. I rarely use it now except at night, and only 5 or 10mg.

So that's my Baclofen story. At this point I would fight anyone who tried to take it away from me!
 

heapsreal

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Thanks for the reply lily, Im hoping it helps with my restless legs and improve sleep too. Its strange how an old cheap medication that can be so effective get 'lost', i bet there are other old meds that would be effective for us but no longer exist. I use to use doxepin and antihistamines for sleep for sleep but of late have found they worsen my restless legs, i hope this works for me, just waiting now on my order.

cheers
 

Lily

*Believe*
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677
Thanks for the reply lily, Im hoping it helps with my restless legs and improve sleep too. Its strange how an old cheap medication that can be so effective get 'lost', i bet there are other old meds that would be effective for us but no longer exist. I use to use doxepin and antihistamines for sleep for sleep but of late have found they worsen my restless legs, i hope this works for me, just waiting now on my order.

cheers

Since you mentioned you have restless leg also, I'll tell you that my friend thinks that the combination of Darvocet and Baclofen works best. Over the years she has bad periods when it doesn't seem to help as much and has tried some of the newer meds specifically for RL. They either have not worked or had many side-effects, and she's always come back to Baclofen and Darvocet combo. And yes she has to stay away from of the anti-histamine type meds - yikes! Good luck with Baclofen. I think she takes 10-40mg. During the worst of my trials with FM I took 40mg of Baclofen with my Ambien and still was lucky to sleep four hours. At the time I thought that was heaven though, compared to what I had been getting.
 

garcia

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Old or not, baclofen is one of Jay Goldstein's core supplements for CFS in "Betrayal by the brain". Another one is gabapentin. I found baclofen to be much stronger/better than gabapentin. I only take at night, and find it helps me get to sleep, and have a more restful sleep. I find that receptors quickly adapt though, so for me it is best taken every-other-day.
 

heapsreal

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I need to get that book by dr goldstein, i think it would be an interesting read. Im on gabapentin at the moment for restless legs after lyrica pooped out on me, gabapentin dose help but doesnt feel as effective for sleep like lyrica was, although probably a cross tolerence between them, but i do find with these meds they help improve sleep when used with another sleep med. I was on topamax for my legs but as dose got to 100mg thats when the side effcts started, chronic reflux where nothing hepled and a constant terrible metallic taste, where i would keep drinking to get rid of it.

Interesting Garcia how you say you adapt to sleep meds quickly, I have the same problem, nothing works more then 2 days in a row. So i alternate a few meds and use benzo's no more then 3 nights a week, the other nights i was using antihistamines or a tricyclic but now they are aggravating my legs. Gabapentin seems to help restless legs when i use seroquel, this might be due to its shorter half life then antihistamines etc, but when i use seroquel i have to makes sure i put aside 12 hours as it knocks me out and gives me a hangover, but its does help alot, i probably use it once a week. Lowering the dose seems to do nothing, when i find the right dose for sleep its 10-12hrs, as i have said lowering the dose doesnt reduce my sleep, just does not work. Some people i know can take the same med for years without tolerance, mmm be nice.

It would be nice to find a med that gives us 8hrs sleep every night without building a tolerance or give us a hangover, one day maybe.
 

xrayspex

Senior Member
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I have been tryng a small amount of liquid baclofen the last few weeks due to a bad flare I got while travelling, it helped calm down muscle spasms in spine which was good but I didnt take it daily because I thought it was making me a bit depressed, my doc pooh poohed that so I tried taking a little at bedtime the last week and realise I am definitely getting into a real negative defeatist depression type mental state, I am a bit weirded out about it as it reminds me of when I tried imiparmine years ago, very creepy like brain in a jar let me out thang, this is sort of subtle but a bit of alienation, any other experiences like that? Its too bad as it helped in some ways too but I can't have that mood thing happen too its too much. I just hope it goes away soon! also I am craving fudge like crazy, GABA, what does this mean about my brain chem that it makes me bummed and potentially cookie monster ----fat?
 

heapsreal

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thanks for that info on your experience, i get the munchies when i use zopiclone but i fight the urge and havent munged out for a long time, lol. I just read about another person getting depressed from it, will have to keep an eye on it, im still waiting for my order of baclofen, hopefully here soon. I intend to use it intermittently with other meds for sleep, muscle spasm relief sounds good for my back
 
A

Ammycin

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My physician prescribed Generic baclofen for spinal cord injury. Also said it's effective for muscle tightness in a body. This medication can cause some of the side effects are headache, dizziness, insomnia and tiredness. Generic baclofen still helps me to reduces my pain and stiffness.
 

kerrilyn

Senior Member
Messages
246
I've never heard of it before. I don't do well on medication usually but I'm having more neurological pain (burning and tingly/pins and needles) and I have an app't with a doc soon who is going to want to give me something. I'm looking for a med that doesn't cause a lot of weight gain. I gained weight on Amitriptyline, have avoided Lyrica for this reason, have been considering Gabapetin but would prefer something in a smaller dose. Anyone have thoughts on Baclofen and weight gain?
 

*GG*

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I tried Doxepin for sleep and that did not work, I am currently on Mitrazapine and that has worked the best of all my meds so far!
 

heapsreal

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finally got my order of baclofen yesterday and took half of a 25mg tablet, within an hour i was nice and relaxed and ready for bed but couldnt quite nod off so i took 1 imovane/zopiclone(normally would need 2) and i slept really well and woke up feeling very refreshed and had a good day at work. Its muscle relaxing effects were good as i was feeling abit tight all over yesterday. I will take a full tablet one night within the next week but will wait till i have a day where i dont have anything planned, so i can see how it affects me. I hope its true that its a cheap alternative to xyrem, that is increases deep sleep and growth hormone secretion, only early days yet so we will see, have also read that tolerence to baclofen doesnt really occur, that would be nice. Half a tablet seem like a nice add on to other sleep meds.

cheers!!
 

garcia

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I've tried both Baclofen and gabapentin/neurontin for sleep (not at the same time). I definitely prefer baclofen as the effect was much stronger. Really seemed to improve the quality of my sleep. I did get tolerance issues though. Definitely thought in my case at least it was best to take every other day. Didn't experience any sides.
 

Otis

Señor Mumbler
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Baclofen dosage?

What dosage of baclofen have folks found useful?

Thanks,

Otis
 

heapsreal

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i started taking 25mg a night and have increased it to 50 mg but now use it intermittently as i think i was starting to develop a tolerence to it, so from my research about not developing a tolerence to baclofen, isnt the case for me, lol. I use it 2-3 nights a week now, but it definately does improve my sleep quality and havent had any side effects.
 
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Location
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Mirtazipine was a great sleep inducer for me but I was not able to fight off the late night food cravings and indulged to the tune of 50lbs in less than a month. It wasn't like a normal hunger...it was like I was starved and I was feeding my soul...like I was soooooo hungry but I could never eat enough. Similar to pregnancy cravings but worse. I use Ambien now but experience "night eating" which is basically me indulging the cravings and not remembering my binge the following day. The trail of cookie crumbs from kitchen and candy wrappers on my bedtime table are a
dead-giveaway! Also, Seroquel and Cyclobenzaprine (Flexaril) also do great for inducing sleep but I have to have about 48hrs to recover from the hangover. I try to alternate benzos/z-drugs to prevent tolerance .

It's interesting but 2 days is also the amount of time I needed in college to recover from the traditional hangover from drinking too much alcohol.
I suspected debilitating hangovers were the result of some sort of alcohol intolerance and not just dehydration.
 

xrayspex

Senior Member
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ok I just had a really awful effect from baclofen, man this dang mcs is killer. I hadnt used it for awhile but have been in a flare since last week from a dental thing that finally was subsiding and I needed to get to sleep early night so decided wanted to alternate something different than benadryl as that can hang me over so tried the baclofen as I thought that had helped before, I havent used it that much but took tiny amount for dental flare body pain last week. Well I must have broken off a bit more than usual from the tablet (I have both tablets and liquid but the liquid is over a year old so thought better not use anymore) and I felt alright the first hour, started to relax and get sleepy and then suddenly something kicked in and my heart started racing and I felt like I couldnt breathe, I got up to go outside for air as I was scared at how much it really felt like I couldnt get my breath, and then I started to faint so got down on ground with head lowered and that helped....it subsided after about 10 mins to where could get back up and then it turned into body pain, headache, like a pressure internally, even brought on more pain in teeth that hadnt been there yesterday anymore. I needed to try to go to sleep but lying down seemed to increase the pressure in my body. A similar thing happened with zantac a few years ago. I don't know if it had a reaction with any or my supplements or little bit of antihistamine I took or what but when I googled baclofen side effects a lot of my experience sounds like what happened to a little girl who o.d.ed on it, except she went into a coma too but she had the hypotension and fast pulse stuff and spastic. I was dx with nerually mediated hypotension years ago per tilt, perhaps it kicked that in too. It felt very vascular, and like heart being squeezed, its still going on, wide awake, it had like the opposite desired effect.
I don't know if can't break it down or what, but I knw I didnt like supplement gaba when tried small amount, cant recall why. In Goldstein's book it sounds like it would be good for me, but not. NOw I wonder if taking a little of this made my dental flare last longer and I didnt realize it. I guess when I took the liquid form I was able to control taking a very minute amount.
 

heapsreal

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it may have dropped your blood pressure by causing your blood vessels to dilate and when this happens your body tries to compensate by increasing its heart rate. Amazing how sensitive you are to it, i have managed to take 50-75mg for sleep without too many problems, maybe a bit groggy, but have good quality sleep from it.

cheers!!!!
 

xrayspex

Senior Member
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1,111
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u.s.a.
yes heapsreal you are probably right. for like 8 hours after that my feet felt sort of numb too so dilation makes sense, it was like a cramping in my extremities when I was lying down on and off trying to sleep.
Its unreal to me how sensitive I am to some stuff, very frustrating.
 

TheMoonIsBlue

Senior Member
Messages
442
Hey HEAPSREAL,
Are you still taking Baclofen?

Do you know what brand (generic I assume) you are takng? You can usually find out by what is imprinted on the pill and looking it up online.

I am trying Baclofen, but it really doesn't seem to be doing anything. It doesn't make me sleepy. In fact, I think it actually makes it more difficult for me to fall asleep!. (I noticed "difficulty sleeping/insomnia" lised as a possible side effect)

I too became interested after reading it came promote deep sleep and help with growth hormones.

Generic brands vary so greatly (despite what you read online mostly) maybe a different manfacturer would work better for me. I think the one I take is by IVAX but now it says it is called TEVA.