A Meta-Discussion on Baclofen

[Otter]

A Meta-Discussion on Baclofen

coalfire;1102035 wrote: Uk you sound very positive. I am glad that you have a plan in place. You are to be congratulated for not letting this setback defeat you. When something didnt work for me I tended to go into a slump for ages.

You have been through the wars Otter,there is no doubt about it.Is there an end in sight for you? How long before you think this legal hoo-ha will draw to a close? Does your wife feel secure in our sobriety now(well as much as anyone does?) I really hope that you are going to be able to move on with your family life soon. This level of stress would kill an ox.

I could not have got through this without Baclofen myself. My colleagues were amazed when, at the height of all this I asked to come back to work. They cannot believe how stressful this is and how I cope.

I have a lawyer who took a case to court which is now the leading case in the country on non-insane automatism, that is, behaviour which is not criminal and which is caused by a drug being wrongly administered. I have a report from Jonathan Chick and two other doctors who will say that it causes hallucinations on withdrawal.

My ultimate goal is to get out of this and to make people realize that there is a treatment for alcoholism for all the sufferers who spend their days worrying about where they get their next bottle, have no lives, no future. It think this medication has huge potential for people like that. In fact, I think it is inevitable that it will have to be adopted as a treatment and if it is not then people who are finding out about it will wonder why they went to jail, lost their children over an illness which is treatable. Because it has side effects. Come on!

I just don't like where this debate is going. It really misses the point in public health issues. Florie can take Bac or leave it. Some people cannot afford to and others SHOULD be forced to take it as part of a program to keep them from constantly being arrested for alcohol related offences and costing the public millions of ?s/$s. They use Subudone for heroin and it causes a fraction of the damage alcohol causes.

I cannot see the end of this actually. I will carry on regardless of the result in either case. There is no real down side as they are not serious cases in terms of their consequences but I have no choice. I am not going to live like this any more and no one should.

There are now other doctors who are looking into Baclofen for alcoholism in this area and I am going to start putting ideas around about the consequences to lawyers if they fail to advise clients to take up this treatment and end up in jail or in some other trouble.

It is all about the attitude one takes. It is ok for people like Florie and Winks to have a cavalier attitude towards this medication and those promoting it, to look askance at the fervour with which some of us are pursuing this. I will lose my ardency and fervour and there will be no conflict as soon as people I am engaging with understand the consequences of failing to give this drug a chance to help people. We all know it works and it should, as a matter of public health policy, be investigated and used. On one side you have doctors, scientists and users who know from their exhaustive research, personal experience and the experience of others that it works, and that side effects are manageable. On the other side you have doctors etc who don't know anything about it at all. There are not many who have or will come out and say that it does not work and should not be used for a life threatening disease just because it has side effects. Doctors don't do that, otherwise chemotherapy would have got nowhere.

Into this mix you get people suggesting not to use Baclofen, or at least trying to stir up some argument or discussion, without any professional qualifications and with no consequences to themselves of their conduct. Suppose you had similar discussions about chemotherapy and people came onto a forum and were put off it, and died? What is this type of debate accomplishing?

This is why people on the French forum get upset.

When Ralph Nader was campaigning for better car safety you got auto manufacturer's putting him down, casting doubt, but that raising of awareness saved lives...end of discussion!

[redhead77]

A Meta-Discussion on Baclofen

Otter;1102034 wrote: Florie, and Winks, if you want to join in.

It seems you think that this is a debating forum so I would like you to put your position on this issue:

It is a matter of statistics that about 2 million people will die from the effects of alcoholism next year.

Question: How do you feel that this thread and your spreading of doubt about the efficacy of Baclofen and information about its side effects which is already widely known will prevent the deaths of any of those people? What is it that you are doing here that is going to stop even one of those people who are not engaging in this debate, from dying of the illness?

I ask this because you seem to be using the word "brave" very loosely. Brave to do your own thing regardless of the consequences to this treatment of your disparaging it when it has the potential of saving other people's lives? Brave to encourage people NOT to use it because it causes mental confusion to you so that you cannot do your dissertation while others cannot even get out of the house from one week to the next? Brave because you mock people who are "desperate" because someone they love is dying in front of their eyes. I don't see how it is brave to tear people down who are trying to save their own lives and others?

To me you are both the victims of your own inverted snobbery. The people who have devoted their professional lives to finding a cure for this are somehow disingenuous because they are making a career of it, helping others to stay alive, while you are "brave" either because you are abandoning it because it has side effects or because you think that this forum is for the "average Joe" who just wants a bit of help without getting all bogged down in the science of it. If it doesn't work for Joe then that is just fine because average Joe can probably get well some other way. Maybe average Joe has a good plumbing job too. Well there are a lot of people who are not average Joe, don't own a computer, don't have any of your advantages in life.

This pill can help them. What are you doing about it Florie, Wink? Or are you not interested in down and out alcoholics. Not in your league?

The emperor has no clothes? Neither do you.

What's the point Otter? We keep threads like this going. There are no lack of SE's on people's personal threads. I just read a very alarming one. This drug will not be tolerated by all. There, I said it. It is not a perfect drug. I'm not a baclofen cheerleader for everyone. I do cheer for the ones it works for. It is your choice to take it or leave it. Some people need to leave it. People shouldn't be deterred on a daily basis by threads like these. Bottom line, it will work very well for some. Give those people a chance. If they had enough of a brain to find this website, they will quickly see there's plenty of SE's to deal with.

I, for one am done meta-discussing anything. We all know it's really not a discussion. It's a baclofen bashing thread. Started by someone taking the drug. It causes panic and hysteria. Mostly, it causes huge amounts of anger in people who normally aren't angry. Please don't attribute this to a side effect of baclofen. It's a side effect of being exposed to pot stirrers.

[PbarE]

A Meta-Discussion on Baclofen

redhead77;1102031 wrote: Baclofen is a powerful drug. Like with any other drug, it won't be tolerated by everyone. Everyone won't find success with it. Whether it be 50% or 20%, who don't. That's one of Dr L's greatest downfalls. There is no drug that has a 99% success rate. Plus, his constant statement that there should be NO side effects. I don't know of anyone who has done this without any side effects.

Red, I have closely followed your journey because you started about the same time I did. I used you as a measuring stick throughout.

To see where you started from and where you are now is pretty amazing. You have become one of the voices of sanity.

When I first saw this thread, I said, "Oh fuck, here we go again....." But it has taken a pretty civil tone for the most part. And I think a discussion about how we discuss Bac is a good idea....at least it is a change from the norm.

I actually shared some of the same feelings as Tracy. Zealots scare me. But on the other hand, people who blindly attack just for the sake of stirring things up just piss me off.

My opinion on bac is pretty much summed up in the above quote from Red. It is going to work really well for some, moderately well for others and not at all for the rest. And the SE's are real and unpleasant.

To be less than candid about those facts is dishonest. I spent the bulk of my addiction being dishonest - I refuse to do it in my recovery. I don't think a full disclosure will dissuade someone from taking Bac. A 50% percent success rate, which is pretty close to what my doctor told me, is phenomenal.

Otter, I see where you are coming from about the spreading of doubt. But to create false hope, only to have that dashed later on, is potentially devastating.

[Otter]

A Meta-Discussion on Baclofen

Red, I agree with your sentiment. Call me a masochist! I think I will stop now. I am in a funny mood now, getting ready to go on holiday. I come here for moral support and I don't find bashing of this medication or the people on it helpful. Give me a bubble of hope, happiness and success any day.

PbarE, I think it is far too early to say that this only has a 50% success rate. Yes, so far and it has only been used widely for a year or so by a handful of people with no real input from the medical profession etc. etc. Why assume that this is the end of the development of Baclofen treatment. If the pharmaceutical industry picks up on this why can they not develop Baclofen similar drugs. It seems easy enough to develop pseudo illicit drugs to get around laws on possession of illegal drugs. Maybe some changes in Baclofen's structure will alleviate the side effects? Who knows until people start experimenting and how can that happen unless people use it, side effects and all.

Anyway, hope is a magical thing. People go on about how just sitting in a room with other sufferers talking about themselves anonymously has some therapeutic effects. Well, maybe so does the support of a lot of people who are themselves free at last of this illness.
There is a thing called the placebo effect so how much better to have a placebo effect on top of something that is also actually working. I wonder if anyone would be tolerated for long at an AA meeting or in a psychiatrists office arguing about how effective either was.

I will not post here any more, I will not post here any more....

[PbarE]

A Meta-Discussion on Baclofen

Otter;1102078 wrote: unless people use it, side effects and all.

Anyway, hope is a magical thing. People go on about how just sitting in a room with other sufferers talking about themselves anonymously has some therapeutic effects. Well, maybe so does the support of a lot of people who are themselves free at last of this illness.
There is a thing called the placebo effect so how much better to have a placebo effect on top of something that is also actually working. I wonder if anyone would be tolerated for long at an AA meeting or in a psychiatrists office arguing about how effective either was.

I will not post here any more, I will not post here any more....

Excellent points, my friend.

[eight days a week]

A Meta-Discussion on Baclofen

Some very interesting posts here. Amongst others, Otter, I admire you, I may send you a PM at some point soon as there are a few things (very important things to me) I'd be very grateful for your input on privately. I went through NHS detox and rehab here, mainly with heroin addicts. The drunks were mostly not the sort to even afford computers, let alone find their way here.

For them, there is only one way right now. Go to detox, go to rehab, then go to AA for the rest of their lives. Fail at any of that? Then it's probably at some point an alcoholic death on the streets, either quickly or drawn out over many years filled with the most pitiable moments. I know that because I would have been there myself and would be dead by now were it not for the fairly comfortable situation I was simply lucky enough to be born into.

Ukblonde;1101949 wrote:
Dr Chick asked me about things I've used in the past and suggested I go back to living ODAT, also he spoke in high regard about AA. He didn't tell me to go back but said that there is a lot of wisdom in the rooms, and to ignore the tub-thumping "You must go to 90 meetings/get a sponsor/do what we say" gang if I do.

I have gotten my life back and feel great. I am sad I lost those months because I put my neck on the line, lost direction and became isolated.

Can only look forward now. I've got a prescription for naltrexone, and may use that to see if it helps but I am going to be concentrating on other areas from now on.
Firstly UK, I'm very sad to hear that you didn't get to where you'd hoped with Bac. To me, it seems to suit some and not others, the same as Naltrexone (TSM or not). However, in my humble opinion, Bac works for many many more than Naltrexone or TSM. Having said that, Nal seems to work for a small percentage (15%, 20% - just a guess from what I've observed after more than a year on TSM and the forum there?) incredibly well, and for very many more than that to reduce cravings. I urge you to try it, and wish you the very best of luck

It reduced cravings/the magical allure of drinking for me, just not enough to affect my intake :/

I've spoken many times now with Dr Chick and he is a lovely man who cares deeply about people. I've always thought, and your post only reinforces that, that he is open to all approaches that bring benefit to the patient and that have scientific backing.

For example, in my case he suggested AA and I told him (pretty gently) that it wasn't for me and he's never mentioned it since.

If you bring suggestions to him of what you think will help he's open to it and that's the route he'll support you in. He's not pro or anti Bac, not pro or anti AA. He won't rule out anything that helps.

He's wonderful at supporting you in YOUR way out. He won't, though, for the moment (?) consider the high-dose Bac treatment, and I don't blame him. It is scary, and with the SEs I had even at tiny doses I certainly wouldn't want to be a doctor prescribing at high levels.

I get the impression he has little experience even attempting high-dose Bac treatment, and it's one path he's not presently willing to go down.

Ukblonde;1101960 wrote: I thought the misunderstanding of dosing was simply because enough trials haven't been run. They really do not know what they are doing, as neither do we.

I think in most cases 'we' here know much more than the 'experts'. Just look at Dr L with his claims of 100% success and 0% SEs! (At least I think those were the claims when he was first introduced to us, that may well have changed.) And yet what the man is doing is absolutely extraordinary it seems.

One more thing about side effects, which I don't think many of the 'experts' get yet. People like me suffer from the harshest SEs and continue to get them as long as we drink. We may be a vast minority, I don't know, but as long as I don't drink or drink very little I feel wonderful on Bac. A bottle of wine over a long evening and I feel pretty out of sorts the next day. Much more than that (and I used to drink 3x that and be just a bit dehydrated the next day - crazy I know) and I am COMPLETELY wiped out the next day, so much so that I spend the day lying down and barely struggle to watch TV etc.

For some people (unless I am the only one?!) Bac is UTTERLY incompatible with drinking above a moderate amount. And I've been on this stuff for over a year. So, if you're still drinking and you have the same reaction as me, I'd personally question Dr Chick's reasoning that you should be used to the side effects.

Otter put it very well here:

Otter;1101957 wrote:
There is a doctor here using Baclofen, on the NHS, he works with Dr. Chick, he uses it over 100 mg, it does work, Dr. Chick treats a different type of patient.

I couldn't agree more. Dr Chick uses it as a tool in the tool box to treat people like me - people who see great results at less than 100mg daily. Otherwise, he points them elsewhere.

I don't know if I hit 'the switch'. Probably not (?) - although taking this medicine I no longer regard myself as an alcoholic. I can still drink too much, and do more often than I'd like, but the penalties next day are incredible (those SEs drinking on Bac even after one year+), and I can see clearly why I'm doing it - there are other issues that need addressing, and which I try to find, still, an escape through some drinks.

Anyway, just some thoughts, all the best to you

[Guest]

A Meta-Discussion on Baclofen

Thanks for you very helpful and supportive post. The thing is I did have periods of abstenance, at one point 3 weeks when I got to 180mgs, and there were no let up in the sides. I am not a daily drinker usually - although I have been on benders of several days, and very occasionally have been drunk 5 days out of 7 for 6 weeks. This resulted in withdrawls and fits. Generally I am a very severe binge drinker, I drink as quickly as possible and to blackout. Even when I managed daily drinking it was still to black-out, pass out and start again.

When I started the baclofen I did go on to daily drinking and yes the side effects were multiplied terribly. I couldn't function at all. As time went on I did reduce these bouts, partly because I just get bored drinking day in day out - because you see when I drink I don't work, don't work out, don't do very much at all. So I went back to binging, so perhaps only drinking 1 or 2 days a week but then of course excessively to the point where I had some bad falls. Then I had a spell at 180mgs where I didn't drink at all. The daily side effects were still there, still horrible. If I drank then these were exaccerbated several times as you describe but I was still suffering on the non-drinking days. In the end I was drinking to escape these side effects but still only perhaps once or twice a week - the remainder were completely AF.

I haven't had a drink for 4 days now, not since Sunday. I've had the odd idea but have started using my belief system again, along with tools I have used in the past to stay AF.

To sum up, there were many periods of abstenance with baclofen(which could have actually have been quite normal for me) and the sides whilst a lot less than when I did drink, were still affecting me in a detrimental way - so badly I couldn't carry on with them. I gave 180mgs around 4 weeks with only 1 binge and still the sides on the none drinking days were not easing.

This is why I think Baclofen doesn't work for me. I'm used to having sober periods without any cloud over them, whereas a daily drinker will have that cloud over them every day. Anything that reduces their daily drinking will improve every day and the SEs aren't as bad as being in the alcohol haze 24/7. A binge-drinker on the otherhand experiences complete sobriety frequently so is likely to feel the side effects a lot more on their dry days.

Basically Baclofen made every day a cloudy day, and took my life away as if I were drinking all the time - is the best analogy I can give. Then on top of that I still had the terrible binges!!!!! Arrggghh.

[alexan]

A Meta-Discussion on Baclofen

What Next For Me... : / ?

Ukblonde;1102255 wrote: Thanks for you very helpful and supportive post. The thing is I did have periods of abstenance, at one point 3 weeks when I got to 180mgs, and there were no let up in the sides. I am not a daily drinker usually - although I have been on benders of several days, and very occasionally have been drunk 5 days out of 7 for 6 weeks. This resulted in withdrawls and fits. Generally I am a very severe binge drinker, I drink as quickly as possible and to blackout. Even when I managed daily drinking it was still to black-out, pass out and start again.

When I started the baclofen I did go on to daily drinking and yes the side effects were multiplied terribly. I couldn't function at all. As time went on I did reduce these bouts, partly because I just get bored drinking day in day out - because you see when I drink I don't work, don't work out, don't do very much at all. So I went back to binging, so perhaps only drinking 1 or 2 days a week but then of course excessively to the point where I had some bad falls. Then I had a spell at 180mgs where I didn't drink at all. The daily side effects were still there, still horrible. If I drank then these were exaccerbated several times as you describe but I was still suffering on the non-drinking days. In the end I was drinking to escape these side effects but still only perhaps once or twice a week - the remainder were completely AF.

I haven't had a drink for 4 days now, not since Sunday. I've had the odd idea but have started using my belief system again, along with tools I have used in the past to stay AF.

To sum up, there were many periods of abstenance with baclofen(which could have actually have been quite normal for me) and the sides whilst a lot less than when I did drink, were still affecting me in a detrimental way - so badly I couldn't carry on with them. I gave 180mgs around 4 weeks with only 1 binge and still the sides on the none drinking days were not easing.

This is why I think Baclofen doesn't work for me. I'm used to having sober periods without any cloud over them, whereas a daily drinker will have that cloud over them every day. Anything that reduces their daily drinking will improve every day and the SEs aren't as bad as being in the alcohol haze 24/7. A binge-drinker on the otherhand experiences complete sobriety frequently so is likely to feel the side effects a lot more on their dry days.

Basically Baclofen made every day a cloudy day, and took my life away as if I were drinking all the time - is the best analogy I can give. Then on top of that I still had the terrible binges!!!!! Arrggghh.

This is EXACTLY how I feel right now -- All of it. And I went up to 340mg.
https://www.mywayout.org/community/f2...m-5-49289.html


I am now on the fence as to what to do next myself.

###

[ignominious]

A Meta-Discussion on Baclofen

Nice, thoughtful post Eight.

[Bruunhilde]

A Meta-Discussion on Baclofen

Thanks UK and Alex and others,

I'm interested very much in bac alternatives. I find bac in low dose to be a bit helpful, but certainly not a cure and I can't go high dose due to blood pressure issues.

I'm thinking of Nal, that is, when I CAN think. Please post on about this. Anyone done the drug test? I think beatle was thinking of it. Wish this forum would allow for "tags"...

:thanks:

[alexan]

A Meta-Discussion on Baclofen

I have found Bac on low doses to be possibly helpful as well -- hey, every little bit helps. Brun read this bit for now; these are excerpts from the book:
thesinclairmethod.com • View topic - Excerpts from The Cure for Alcoholism

Do read the book if you can as it does start off like quite a knocker...so at least the first 70 pages you might find your self glued...
I reserve my opinion on various portions