Baclofen?

[Ema]

My doctor prescribed Baclofen for a persistent muscle spasm in my neck. I'd never heard of this drug so I've done a bit of reading and see that it works on GABA receptors but different ones than the benzos.

However, I can't figure out if it has similar withdrawal problems to benzos or not. I see it says not to discontinue it abruptly but I had only planned on taking it as needed. I really do not want to get myself into a pickle with meds that are hard to discontinue but this neck issue is really bringing me down lately and it would be nice to have something to turn to for relief. I haven't had good luck particularly with any other pain relievers or muscle relaxers...

It actually has pretty good reviews on askapatient.com which is generally where people go to post their horror stories so that was encouraging at least. But nothing much about withdrawal...

Thanks for any input on this drug, Ema

 

[heapsreal]

If you are on regular high doses of baclofen then its recommended to taper off it. Normal benzos work on gaba A receptors where baclofen works on gaba B receptors, this might be why there is less addiction problems etc. It is actually used alot for alcoholics to withdraw from drinking and has been used for other substances as well.

I use bac for sleep 1-2 nights a week using 25-50mg, on its own i dont find it helps much but when combined with other sleep meds it greatly increases sleep quality. I have read stuff where they say there is no tolerance to bac but after using it nightly i think tolerance does occurr so i now use it irregularly .

As for muscle spasms and pain, i cant say it has helped me there but seems to help others.

 

[ukxmrv]

I've used Baclofen off and on for about 2 years and not had an addiction or other problems. When I do take it it's at 10mg per night only. Really does help with the restless legs, muscles spasms etc that I get at night.

 

[Insomniac]

I have used it once a week for about 10 years. I use it only when the pain is bad or I particularly need to sleep. I use it *about* once a week because I am also scared of addiction. If I wasn't scared of addiction I would use it every night because it is a great drug for fibro muscle pain, fibro muscle spasm.
(It also helps my sleep quality when I combine it with a tiny dose of clonex.)

In the 10 years of using it once a week, I notice it works less strongly now than it did when I started so from that I assume tolerance can happen.
At one point I used to use it once every 5th night and had no problem with stopping for weeks. I recommmend you either do that or just use it 1 or max. 2 days in a row and then stop before you get used to it. Then you have nothing to worry about.

It's such a good muscle relaxer that there is a chance that you might only need to use it once for the initial neck spasm to go down for good, or improve.

 

[Firestormm]

One of the best drugs I have been prescribed for helping with symptoms associated with this condition. Especially helped with the muscle spasms and restless legs, but generally helps my muscles relax especially after exertion. Personally, I think every doctor seeing a patient with ME should have this one on his list of 'drugs to consider under appropriate circumstances'. Am on 60mg a day (2x10mg three times a day). Certainly notice when I am not on them. So for me the proof is in the pudding, so to speak

 

[Nielk]

I have been taking Baclofen "as needed" for the past 2 months. It was prescribed for me for muscle pain. I was prescribed it after I got off of Klonopin.

I was given a list of medicines that could become addictive and then a list of comparable medications that are not generally addictive and Baclofen was on the good list.

There are some medications that you can't just stop taking cold turkey but, it doesn't necessarily mean that they are addictive.

This list that I have now has become my "bible" of prescription medications because I know that I have a problem with potentially addictive medications.

 

[SaraM]

Unfortunately it did nothing for my muscle pain.

 

[heapsreal]

Dr Jay goldstein a former cfs guru said that baclofen was a drug that either didnt work or when it did it was a great drug for cfs.i think its one of those meds that is quite safe that every one should try and see if their the one it works well in for either pain or sleep, maybe both.

cheers!!!

 

[Ema]

Sounds like it is worth a shot...wish me luck tonight! Thanks all...

 

[heapsreal]

good luck.

 

[Insomniac]

I was on a benzopine addiction forum once and someone came on who was taking baclofen everyday and got terrible symptoms when they tried to stop. That is why I am scared of addiction and chose not to take it everyday.

However it is a great help for me to take it once a week on particular bad days. I think it should be offered just to try to anyone with fibro in my opinion.
Heapsreal post re: Dr Goldstein's comments on the drug are spot on.

 

[Firestormm]

Unfortunately it did nothing for my muscle pain.

Morning Sara,

Baclofen is not for 'pain' specifically. It is generally a 'muscle relaxant' or anti-spasmodic. For muscle pain I am still taking co-codamol as prescribed and for the pain associated with me old noggin - neurontin/gabapentin.

I don't think there is any escaping muscle pain. I think that - as with other symptoms - you can find and be prescribed drugs that will 'take the edge off' and that's about the most we can hope for.

But it shouldn't mean - in my opinion - doctors and patients not working together to try and find something that does just that i.e. patients shouldn't be left alone to manage with nothing.

Now I could be very wrong here but at no time have I been informed that Baclofen is 'dangerous' or 'addictive'. It could be me I guess but there have been times when I have gone without this drug for periods and there was no 'withdrawal' that I felt.

And I haven't felt that this drug or the others that I am on have in anyway contributed to my general levels of 'fatigue' - and both I and my various doctors over the years have experimented with this repeatedly (they sometimes have some funny notions )

What I did find was that the discomfort in my muscles increased noticeably when I was not taking Baclofen. Whilst Wikipedia is not a reliable source, you can have a further read here if you like and enquire with your doctor. He/she should have the answers - if not then ask (with a straight face) why they are pretending to be a doctor

Now if only I can find a drug to take the edge of 'fatigue' I'd be happy

 

[SaraM]

Morning Sara,

Baclofen is not for 'pain' specifically. It is generally a 'muscle relaxant' or anti-spasmodic. For muscle pain I am still taking co-codamol as prescribed and for the pain associated with me old noggin - neurontin/gabapentin.

I don't think there is any escaping muscle pain. I think that - as with other symptoms - you can find and be prescribed drugs that will 'take the edge off' and that's about the most we can hope for.

But it shouldn't mean - in my opinion - doctors and patients not working together to try and find something that does just that i.e. patients shouldn't be left alone to manage with nothing.

Now I could be very wrong here but at no time have I been informed that Baclofen is 'dangerous' or 'addictive'. It could be me I guess but there have been times when I have gone without this drug for periods and there was no 'withdrawal' that I felt.

And I haven't felt that this drug or the others that I am on have in anyway contributed to my general levels of 'fatigue' - and both I and my various doctors over the years have experimented with this repeatedly (they sometimes have some funny notions )

What I did find was that the discomfort in my muscles increased noticeably when I was not taking Baclofen. Whilst Wikipedia is not a reliable source, you can have a further read here if you like and enquire with your doctor. He/she should have the answers - if not then ask (with a straight face) why they are pretending to be a doctor

Now if only I can find a drug to take the edge of 'fatigue' I'd be happy

Hi Firestormm,

Thank you for the comment. I am happy you can tolerate meds without side effects, but I have had no luck with them. I get really weird symptoms with drugs without any reduction in pain. Neurontin , vicodin, tramadol, flexeril, cymbalta,and .....

Caffeine is the only thing that helps me with fatigue, but if I take Excedrin tabs or drink Coca cola. Coffee and coffee pills do absolutely nothing for me.

All the best

 

[Firestormm]

I found Neurontin an awkward one to tolerate. Took some doing to overcome that initial 'intolerance'. I just kept plugging away for it seems like six weeks I think. Anyway, eventually it all settled down and really did help with some (at the time and previously) I thought/think quite worrying symptoms. It's a drug that I find (should I for some reason have my supply interrupted - we often have issues with local delivery - or dosage adjusted) needs far more careful management.

Still generally speaking I have found over the years that perseverance often overcomes any initial side-effects, BUT not always. There have been some drugs that were bloody awful although fortuitously there are usually variants that can be tried which can prove more tolerable. Such a pain in the bum to keep on trying though and there's no guarantee that the damn things will have any positive effect!

Where would I be without Caffeine? Majorly depressed I suspect I simply cannot do without fresh coffee each day. One of my few remaining 'treats' I suppose. Of course when I 'did those diets' it all went by the board, but after ditching all of them and returning to a diet of general balance and healthy food i.e. a normal one with nothing taken away; I returned to caffeine and wondered how the heck I functioned with out (functioned in a non-ME kind of way)!

Not sure really anymore of the link between caffeine and alertness or fatigue and ME. I guess it must help. My system is probably so flooded with the stuff now (and [shock horror ] nicotine) that maybe the effects are negligible. Anyway, both are a pleasure and I've surrendered enough pleasures over this last 15 years or so. My attitude now is largely 'sod it'. Bad enough having surrendered my pleasure over alcohol not to mention sex!!

Take good care Sarah

 

[Ema]

So I have tried the Baclofen at bedtime for the past two nights. I split a 10 mg pill and took 5 mg each night.

The good news is that I don't appear to be allergic or particularly sensitive to it and it does seem to help me stay asleep. I have slept through the night for the past two nights and usually I wake up at least once between midnight and about 5AM.

It may have helped with my neck spasm but I can't really tell. It feels better right now but it felt awful yesterday evening.

I do feel a bit groggy though that could be low cortisol (I have adrenal insufficiency) due to the stress on my system from staining the floors at the end of last week. And the migraine is still hanging around but much less intensity as well.

I'm now starting to wonder if I should try taking it at either a higher dose (10 mg at night? But wouldn't that just increase grogginess?) or possibly try taking it through the day at 5 mg every 8 hours or so? I just wonder if I am not giving enough of a dose to really relax that neck muscle and get some relief of the symptoms. I would love to be able to hit it hard with the med and have it relax enough to make taking it just sporadic from then on...Hmmm.

 

[Ema]

Not sure really anymore of the link between caffeine and alertness or fatigue and ME. I guess it must help. My system is probably so flooded with the stuff now (and [shock horror ] nicotine) that maybe the effects are negligible. Anyway, both are a pleasure and I've surrendered enough pleasures over this last 15 years or so. My attitude now is largely 'sod it'. Bad enough having surrendered my pleasure over alcohol not to mention sex!!

Take good care Sarah

I can really identify with this because for the last year before my 2009 crash, I found the most help not from any prescription meds but from Diet Coke (caffeine) and nicotine patches. My theory has to do with cortisol and acetylcholine but it is not a very well put together theory at all. In fact, that is about the sum of it!

Caffeine stimulates the adrenals to produce cortisol and my adrenals were shot. I think the caffeine propped them up until there was no propping up left to do and at that point it was adrenal crisis after adrenal crisis until I had proper testing and got on hydrocortisone replacement. I dropped the caffeine at that time because I couldn't handle it any longer but I still do miss it!

Certainly nicotine stimulates dopamine and other neurotransmitters that are energizing but I also think it helped to increase acetylcholine which I've read on this board may be implicated in ME/CFS. I do know that phosphatidylcholine is one of my more valuable supplements and perhaps this is why.

I wish I could put it all together but all I can say is that I know that they did help me too - especially together.

 

[heapsreal]

So I have tried the Baclofen at bedtime for the past two nights. I split a 10 mg pill and took 5 mg each night.

The good news is that I don't appear to be allergic or particularly sensitive to it and it does seem to help me stay asleep. I have slept through the night for the past two nights and usually I wake up at least once between midnight and about 5AM.

It may have helped with my neck spasm but I can't really tell. It feels better right now but it felt awful yesterday evening.

I do feel a bit groggy though that could be low cortisol (I have adrenal insufficiency) due to the stress on my system from staining the floors at the end of last week. And the migraine is still hanging around but much less intensity as well.

I'm now starting to wonder if I should try taking it at either a higher dose (10 mg at night? But wouldn't that just increase grogginess?) or possibly try taking it through the day at 5 mg every 8 hours or so? I just wonder if I am not giving enough of a dose to really relax that neck muscle and get some relief of the symptoms. I would love to be able to hit it hard with the med and have it relax enough to make taking it just sporadic from then on...Hmmm.

 

[heapsreal]

if the dose your on is doing the job then just stick to that, improving sleep can indirectly help with pain.

 

[Gavman]

Mmmm baklova.