Baclofen nearly destroyed my life

[GolfMonster]

deleted

[kronkcarr]

Baclofen nearly destroyed my life

GolfMonster,

Thanks for your post. I'm interested in anyone's experience with baclofen so I appreciate your post. Before I came on MWO I thought my bac experience was the way it was for everyone. Imagine my surprise! 😳

I've been going back through old threads and seeing disagreements. I don't know why I'm surprised in the way some of them were handled--maybe it's because I still have a bit of Pollyanna DNA! Anyway, thanks for telling your experience and thoughts.

kronkcarr

[Xadrian]

Baclofen nearly destroyed my life

Like it has been said before, baclofen is not a cure for all. Most people here benefit from it eventually, but some people don't.

There are several causes for alcoholism and for some causes it may not help. Further research is necessary, but as you probably know, because an expired patent there's no big profit for the industry to be made.

Whenever possible, one should be supervised by a doctor. When not possible to be supervised by a doctor, one has 2 choices: Stay an alcoholic or try to do something about it on one's own.

Sorry to hear that baclofen didn't work out for you as it did for me, but also good to hear (another) not so successful story.

Maybe you could give us some information about any pre-existing problems you have, aside from alcoholism? That could be valuable information to help other people to decide if baclofen could be a solution or not. Does alcoholism run in your family?

[YouKayBee]

Baclofen nearly destroyed my life

As many here already know baclofen really wasn't for me either. It wrecked my quality of life just as much as the booze, and like you I had the wierd thoughts too. These did go eventually once I tapered off so I can be pretty sure it was the baclofen.

I'm also going to say something pretty honest here. I felt bullied into taking it, at the time quite a few members kept repeating at me that "baclofen works for everyone fullstop, no doubt about it", "take the pills" etc. So I said what the hell, ordered a shed load and started getting them down me. I really did at various points want it to work, some said you can drink, some said not so I tried being abstenant-but mostly that was an attempt to minimise the horrendous SEs. When I struggled I was told to break the doses up, which I did do, and I also stayed at a reasonable dose for some weeks but just couldn't do it. People said keep taking the pills, some even said that when I'd been told by a respected authority that baclofen wasn't for me. I actually felt a failure because of it too not least because forum members took the piss out of my side effects, or said they didn't exist. At times I felt very alone and it was difficult to go against the advice posted here but I did doit.

It was a painful, frustrating time for me and all I tried to do was report my experience.

I do know it helps some people an awful lot, but it's not a cure all and does affect some people more than others.

It was thanks to baclofen that I did find my cure, if I'd not sought Dr Chick's advice and also heard about TSM via another forum member's posts then I wouldn't have set off on the transformation journey I have and I most certainly would/could be dead right now.

By the way I did like you come down to 20mg per day, and later did cut it out altogether so it is possible.

[dundrinkn]

Baclofen nearly destroyed my life

I am new here and just started bac. I am sorry to hear of your experience. I have been on it just 4 days and have had two days AF. This hasn't happened in many, many months in spite of meetings, therapy, herbs, meditation and a lot of wasted willpower. My dose is 20 mg a day now. I don't plan to go up to find a "switch". I have relief. Relief I never found in 9 years of "sobriety" through AA. So I hope your brain turns off the alcohol craving with abstinance. Mine never did. Since my nine year stint in AA, I have since had months, and a few times went for more than a year without drinking and never lost the desire/compulsion to drink. I am a very functioning alcoholic and perhaps that creates an illusion that I can moderate, and thus keep hope alive... and therefore the desire. Not sure. But I can tell you without a doubt that this last three days have been the first in my adult life where I have not had an overwhelming, mind altering focus on when I might be able to have drink. I hope you find relief as well.

[Bart-man]

Baclofen nearly destroyed my life

I can see how it may not work for some and nothing is perfect. But I'm on day 3 and feel so hopeful. I did fall asleep at work yesterday though. Then took a 2 hr nap after work and was up at 2AM. But hey I didn't drink and felt great this morning. People have to think I'm on something to be so chipper. My demon was Scotch like several of the others. I stopped the Naltroxene and Campral in lieu of this stuff. I'm my own doc at this point. So hopefully you enjoy the ride with me

[COSGringo]

Baclofen nearly destroyed my life

The SE's are very rough.
It's not for everyone. I don't think people should push it. I think if you are going to rough through it there are times you just have to hang in there and go up in dose.

I am not sure I could have done it if I had to go into an office. I WFH so I was lucky. I completely understand.

I tried so many other things that I was determined to deal with it. I even went to the ER once because of it. Did not realize the SE's of this medicine.

I am glad there are options out there. There is no one size fits all.

I am also glad I found baclofen and support.

[spacebebe01]

Baclofen nearly destroyed my life

Baclofen also didnt work for me, I couldnt function and really couldnt take the effets of it, I couldnt sit down without falling asleep at one point and not much seemed to have changed from being drunk in that respect, I was out of work at that time but there was no way I could have done a job I just about fed my sons. I tried it twice and did feel a failure because I couldnt hang in there for the se's to pass and after stayed on 30mg a day for a while which I did think helped me somewhat. I then tried topa which I had far fewer (if any) se's from but stopped taking it when I had problems with another medication I was on.

Right now I havent had a drink since December which is not something I planned it has just seemed to have turned out that way. I started taking a epilim for bipolar and along with it I havent had cravings for drink. I am hesitant to make such a big deal about this as I cant really find anything else written about this effect with the med, and also because I have tried so many things for so many years to deal with my drinking and had so many failures but right now I am just going with the flow with it.

I am happy for the people who baclofen has worked for it just wasnt for me, but neither was AA, rehab, hospital alcohol treatment unit, diet, exercise, herbs, counselling, acupunture ect. ect. None of these things stopped me drinking, but maybe each of them led me in someway to where I am now. As long as there is no actual physical damage caused by taking high doses of baclofen then I would say I am glad I at least tried it, without doing that I would never have known would I. I also probably would notl be here on MWO where I get daily support now.

[Ne/Neva Eva]

Baclofen nearly destroyed my life

Thank you for posting your experiences.

Awful side effects from high dose baclofen are the rule, not the exception.

[MaryGoRound]

Baclofen nearly destroyed my life

I am glad you posted. I think it does show that no one medicine works for everyone. This is true for any treatment.

It seems similar to anti-depressants. Some formulations work for some while others experience either no effect or negative effects. It is never clear how someone will react until they try.

It can be lonely when going on Bac. It is true that the SEs can be difficult (or in your case completely unacceptable). The anecdotal evidence suggests that the SEs are different are at different doses. That is the reason why people push passing dose thresholds.

Still, it won't work for everyone. If you try it and it doesn't work it then it means another way has to be found. We should all be very careful if the SEs are interfering in a significant way. I have never been on a medicine that "let's itself be known to me" in so many strange ways. For me, it has been worth it. I am in a very good place.

I think we all want to know the science behind it...positive and negative. Baclofen is not a first line treatment. It should only be used when other avenues have failed. I applaud those who have found AA, CBT (SMART), counseling, supplements, etc. and have been able to use these tools to stay sober. I wish it could have worked for me.

[YouKayBee]

Baclofen nearly destroyed my life

spacebebe01;1463732 wrote: Baclofen also didnt work for me, I couldnt function and really couldnt take the effets of it, I couldnt sit down without falling asleep at one point and not much seemed to have changed from being drunk in that respect, I was out of work at that time but there was no way I could have done a job I just about fed my sons. I tried it twice and did feel a failure because I couldnt hang in there for the se's to pass and after stayed on 30mg a day for a while which I did think helped me somewhat. I then tried topa which I had far fewer (if any) se's from but stopped taking it when I had problems with another medication I was on.

Right now I havent had a drink since December which is not something I planned it has just seemed to have turned out that way. I started taking a epilim for bipolar and along with it I havent had cravings for drink. I am hesitant to make such a big deal about this as I cant really find anything else written about this effect with the med, and also because I have tried so many things for so many years to deal with my drinking and had so many failures but right now I am just going with the flow with it.

I am happy for the people who baclofen has worked for it just wasnt for me, but neither was AA, rehab, hospital alcohol treatment unit, diet, exercise, herbs, counselling, acupunture ect. ect. None of these things stopped me drinking, but maybe each of them led me in someway to where I am now. As long as there is no actual physical damage caused by taking high doses of baclofen then I would say I am glad I at least tried it, without doing that I would never have known would I. I also probably would notl be here on MWO where I get daily support now.

Space

I am so happy for you, whatever you are doing keep it up.:goodjob:

[Otter]

Baclofen nearly destroyed my life

There are a number of issues raised by this thread. The basis of baclofen use is that it calms anxiety based craving by treating it neurologically.

Does that necessarily mean it "cures" "alcoholism". So many people who have come here say they didn't drink because they had an anxiety problem in the first place. Some might say they drank because they had a "psychological" desire to drink for social and other reasons. For people in this category, great, maybe they don't need baclofen. Why would anyone take a drug to "cure" themselves of a conscious and deliberate lifestyle choice? Seems like a crazy idea.

Then there is the issue of other conditions besides anxiety related craving. Bipolar, for instance, isn't considered to be an anxiety disorder and yet some statistics I have read suggest that a large number of people with bipolar medicate with alcohol. So, maybe baclofen won't "cure" a bipolar problem.

Then there are people with dystonia who also find relief in alcohol and respond, to an extent to baclofen. It doesn't stop the advance of that illness, however.

What the doctors who wrote the prescribing guide said was that doctors should treat other illnesses as well as the alcohol addiction. They also described the side effects and provided doctors with guidance on dosing, advising to reduce dosage until the undesirable side effects disappeared and to discontinue if the side effects were unbearable and did not subside. They also advised not to drive while taking baclofen and they advised doctors to make patients aware of the side effects.

It seems to me to be possible to use baclofen successfully to treat a large number of people suffering from alcohol and other addictions. For them it is a God send and it can save lives where, previously, there has been no hope at all. It may not "work" for everyone but that is no reason that it should not be used and it is no reason to discourage its widescale use as a treatment in addictions. Time may result in further refinements in its composition and combination with other drugs.

If using this medication might save a life, I don't see how it is unethical to suggest that it be used and there is plenty of knowledge about its titration, side effects, withdrawal so that it can be used safely, consensually and with a full understanding of the risks and side effects. What is unethical is that the medical profession generally takes the view that they just cannot be bothered either to use it or even deal with the fact that a large number of people are being forced to self prescribe without any medical supervision. "Unethical" is hardly a strong enough term for that.

[COSGringo]

Baclofen nearly destroyed my life

Excellent thought out post Otter.

I completely agree.

[ifulovelife2]

Baclofen nearly destroyed my life

spacebebe01;1463732 wrote:
Right now I havent had a drink since December which is not something I planned it has just seemed to have turned out that way. I started taking a epilim for bipolar and along with it I havent had cravings for drink.

Epilim (Sodium Valproate), is of course used for bi-polar, as in Bebe's case , but really it's an anti-convulsant. It's an epilepsy drug!!!!! Yet another anti-epilepsy drug that appears to remove alcohol cravings.

I'd like to know what the percentage of drug-treated epileptics who drink against their will is. I'll bet it's way below the average.

But bac to the baclofen bashing: within a week of starting baclofen I found that I was bald as a coot. Seriously, no trival, pansy-arsed greasy hair SE for me, I was completely bald, goddammitt! Actually, come to think of it, I was also bald for the 20 years prior to that too...but fuggit, I still blame baclofen!!!!!

[redhead77]

Baclofen nearly destroyed my life

I believe that GolfMonster IS a doctor. I think he's said so in a past post and he's given me nothing to believe differently. Is that correct, GM? If you don't mind sharing. I appreciate your experiences and opinions. I think sometimes people get scared to post if bac hasn't worked for them. I also think that a practicing physician would have a very difficult time working on 250 mg. Most people here couldn't deny that who have taken it.