Baclofen is not everyone's panacea

[Isolde]

Baclofen is not everyone's panacea

Dosage0;1185033 wrote: Look... I would ask for both sides of the argument to stop and take a breath. I know this thread and this post is going to cause both sides to erupt in an argument because the of the second sentence about the messiah line and because it is directly posted in the medication forum. Please, I wish both sides would just calm down and realize that there is no one specific way to stop drinking and we are both trying to make it work in our own way. AA is correct when they say that there is no one way to stop this problem. I sincerely hope that whatever way you find is the right way for you. I am so passionate about baclofen, that I can barely stop singing its praise from the mountain tops, but I realize that it is not a magic bullet. There are so many different aspects of drinking and why people drink that there cannot be one way that works for every person on the planet. Please... just please... stop hating in either direction. I know when people come here and hope that drinking will stop because they take a certain medication and it doesn't work causes a lot of heart ache. I understand your pain. But please also understand that for some people this is the magic bullet and it has helped so many. Just be good to each other and stop the hate in each direction.

Just find what works for you... whether that be a spiritual program, a pill, some psychological counseling, AA, or whatever you find. Just post your positive experiences and stop all of the negativity. We can be negative in so many ways to each other... just please allow us to grow in a positive direction whatever the circumstance.

Allow the positives to overtake your negative comments,

Rob

[Isolde]

Baclofen is not everyone's panacea

RudyB;1185164 wrote:
lady, i dunno, but anacervix sounds like it might be best for your female parts.

:H I thought the same thing!!

I still take Piracetam every day and it helps immensely. I've never heard of Vincamina, I'll have to look into it. Researching stuff like that is a passion of mine.

[Cinders]

Baclofen is not everyone's panacea

Yes, the "messiah" line was a huge mistake. It did make me sound snarky, and oh heck, maybe I am.

I don't mean to be, though.

I simply wanted to convey that those who come to the meds forum, start excitedly on Baclofen and discover that, for whatever reason, it doesn't work for them, that they should continue on trying.

I now realize the title wasn't well worded, either. It seems like a Baclofen bashing title and that was never intended. I am ecstatic, and admittedly extremely jealous, of those for whom Baclofen works.

But, at the end of the day, if something doesn't work for you, just keep trying. Never give up trying to quit.

Apologies to those whom I offended. It really wasn't intentional.

I do want to add one snarky comment, though. I notice UK has been a bit bashed. I know the posters don't mean to bash her but the disbelief she has encountered about her Baclofen experience is one of the reasons I started this thread.

Cindi

[wanttobesober]

Baclofen is not everyone's panacea

mario;1185054 wrote: For the majority of us we have enough of a struggle with alcohol without struggling with whose recovery group or way out is best or worst. I have said it before - If it works for you great, hold onto it, if it doesn't then try another approach. Think of the recovery scene as a restaurant with a large menu - choose what suits and respect other people's choice.
Come on people we are all here after the same thing goal, To stop our abuse of Alcohol lets focus on that.

Well said Mario, as always!

Cheers,

Brian

[Dosage0]

Baclofen is not everyone's panacea

Cinders;1185454 wrote: Yes, the "messiah" line was a huge mistake. It did make me sound snarky, and oh heck, maybe I am.

I don't mean to be, though.

I simply wanted to convey that those who come to the meds forum, start excitedly on Baclofen and discover that, for whatever reason, it doesn't work for them, that they should continue on trying.

I now realize the title wasn't well worded, either. It seems like a Baclofen bashing title and that was never intended. I am ecstatic, and admittedly extremely jealous, of those for whom Baclofen works.

But, at the end of the day, if something doesn't work for you, just keep trying. Never give up trying to quit.

Apologies to those whom I offended. It really wasn't intentional.

I do want to add one snarky comment, though. I notice UK has been a bit bashed. I know the posters don't mean to bash her but the disbelief she has encountered about her Baclofen experience is one of the reasons I started this thread.

Cindi

No worries Cindi... I really do hope you find something that works for you. Medication like baclofen or anti depressants, or pretty much anything does not work 100% of the time. I have been on prozac, wellbutrin, paxil, lexapro, and a host of other medications I cannot remember at the moment. Each took 30 days to find out if they did anything, and each one worked on a different level. I think baclofen and derivatives of it will need to be tailored to specific people to find something that works. The brain is such a complex organ and as a society we have such a hard time admitting that MAYBE there is a problem in certain areas. Most people have no problem accepting a heart problem or diabetes as needing medication. Many of those same people are skeptical of any "brain" medication.

I just encourage you to do what works for you... be that medication, meditation, AA, skydiving, or intensive gymnastics. It is a horrible, debilitating, awful disease which deserves a lot more attention than what it is getting.

Rob

[Cinders]

Baclofen is not everyone's panacea

Thank you, Rob.

Cindi

[Dosage0]

Baclofen is not everyone's panacea

hey Cindi... I tried to PM you but it said your mailbox is full. Erase a few things!

Rob

[Guest]

Baclofen is not everyone's panacea

Cinders

Thanks for you concern, but I've now worked out what the score is around here and simply moved on. It's not worth getting worked up about. My experience was my experience but it's going to stay that way. My only anger was that everyone was saying baclofen works for everyone, no doubt about it and then when I was suffering and Dr Chick told me it wasn't the drug for me, the same were telling me to up my dose even further. The pressure was pretty immense and only through my own determination and individuality was I able to resist it, and find the right path for me (which some still doubted). It was difficult but I can say that if I hadn't had such a bad experience with baclofen, then I'd not have been so desperate as to consider TSM which involved drinking - something I actually wanted to stop, full stop. I just wish I'd been convinced and informed about Naltrexone sooner(there was virtually nothing on this forum so I knew little about it until Charlieboy mentioned it). Doesn't matter now I found my way out. I did for a while want to perhaps help inform others, prevent anyone else from going through the same but I know that isn't welcome here.

Time for me to concentrate on my own life.

[Cassander]

Baclofen is not everyone's panacea

Ukblonde;1185878 wrote: Cinders

Thanks for you concern, but I've now worked out what the score is around here and simply moved on. It's not worth getting worked up about. My experience was my experience but it's going to stay that way. My only anger was that everyone was saying baclofen works for everyone, no doubt about it and then when I was suffering and Dr Chick told me it wasn't the drug for me, the same were telling me to up my dose even further. The pressure was pretty immense and only through my own determination and individuality was I able to resist it, and find the right path for me (which some still doubted). It was difficult but I can say that if I hadn't had such a bad experience with baclofen, then I'd not have been so desperate as to consider TSM which involved drinking - something I actually wanted to stop, full stop. I just wish I'd been convinced and informed about Naltrexone sooner(there was virtually nothing on this forum so I knew little about it until Charlieboy mentioned it). Doesn't matter now I found my way out. I did for a while want to perhaps help inform others, prevent anyone else from going through the same but I know that isn't welcome here.

Time for me to concentrate on my own life.

UK -- Before the dust settles entirely around here and life gets back to normal (whatever that is) I'd like to speak candidly and openly to you. Please take this as constructive criticism, intended only to help you and help those who come here looking for help.

You say "My only anger was that everyone was saying baclofen works for everyone, no doubt about it". In fact you have come on to bac threads repeatedly and said things like this. Its simply not true! Nobody. I repeat. Nobody. Says this. Nobody says this. Once and for all, nobody says this.

The truth is: nobody knows for sure what will work for any individual alcoholic, or addict. Not Dr Ameisen, not Dr Addolorato, not Dr Chick, not Dr Levin, not Dr Lo0p. Certainly nobody on this board. However, there is mounting published evidence that high dose baclofen suppresses craving at least for certain alcoholics and the number who have found relief increases virtually every day.

Yes, the administration of high dose baclofen often results in side effects. Interestingly, the existing literature relating to the administration of baclofen for spasticity suggests that the side effects are usually easily tolerated.

However, based on the reports on this board, as well as in published papers, it appears that alcoholics (including alcoholics who are still drinking, and who may still be drinking heavily, and who may have abused alcohol over a long period of time, and who may be using other medications and drugs, illicit and otherwise, and who may have other health conditions, including serious health conditions, and who may or may not be taking high dose baclofen under a doctor's supervision) often have significant and, sometimes, ongoing side effects. Nobody denies this. The side effects can be serious and debilitating.

However, there is plenty of anecdotal evidence that for "many" who attempt high dose baclofen, the side effects are temporary, or diminish, or are tolerable. There is plenty of anecdotal evidence on this board that it is possible for many (but not all) to titrate up, down or through the side effects. Especially in light of the cost/benefit of escaping from addiction. That is the main message of those who have found relief with baclofen and who stay on the board to help others.

And yes, for some (like you), the side effects (real or perceived, exacerbated perhaps by other conditions) and conceivably a lack of efficacy, are a real problem. These people drop baclofen and try other ways out. No one on this board, I repeat no one, will deny that high dose baclofen does not work for everyone.

And yet, you come on here again and again and accuse the participants in the bac threads of saying that baclofen works for everyone. This is simply not true and it is old and it is wrong and it is high time you stopped saying it.

And another thing.

It seems to be your habit to regularly pop into a bac thread and suggest that bac doesn't work and to suggest that the poster try naltrexone. I also don't think you should do this anymore.

Not that there is anything wrong with naltrexone! (I know very little about it, but I do know that it has a different mechanism of action than baclofen and may "work" for different biochemical reasons).

There is plenty of information in the meds threads and in mwo in general about baclofen and naltrexone and frankly every other conceivable approach to slaying the beast known to man (or woman). I assume that newbies and lurkers can find all this stuff.

It is not helpful (at least in my opinion) to pop into a bac thread and say something to the effect of, by the way, bac didn't work for me, it won't work for you and have you tried naltrexone? If the poster has done the research and started bac, this just doesn't seem very useful to me.

Or... if you really really believe someone is really really having difficulty with baclofen for reasons similar to the reasons you did, then maybe, maybe a helpful balanced comment would be in order.

So, UK, please take this criticism constructively. Nobody's perfect here (far, far from it) and we are all here to help ourselves and, if possible, help others. Yes, medications are tricky and there is lots that is still unknown. You seem to have made some good progress on your own journey. Let's see if we can't also be as helpful as possible to those who come here after us.

Cassander

[Cassander]

Baclofen is not everyone's panacea

I've just re-read my last post and I want to say again that, Uk, this is not any kind of personal attack on you. Its just with all of the recent upheavals, its something I've felt for a while and I thought it might contribute to a more constructive tone going forward. (That's why we take any medicine that doesn't taste good.)

I also want to say, on the long shot, off chance that there is a doctor or other healthcare professional or heaven forbid! an addiction specialist out there reading: this is really an untenable situation!

There is now indisputable proof that addiction is a condition of the brain and there are numerous medications out there which may or may not relieve alcoholism in a given patient. And yet many, if not most, of the members of mwo find no help in doctor's offices and are left to find their own way out. Isn't it high time that the medical and healthcare community embrace the discoveries of science and engage with patients to assist in the recovery process?

It seems negligent? an abdication of responsibility? (not sure what the right term is) for individuals to be left to on-line support groups to decide which prescription medication - nal or bac or topa or campral or antabuse or some combination, with or without supplements, benzos, SSRIS, etc etc will work for them? And whether the side effects of bac are tolerable or not because the switch is -- or is not -- just around the corner?

In all seriousness my heart goes out to UK who couldn't tolerate the side effects of bac. And also, for example, to bottlestopper, who this summer desperately wanted to quit drinking but had terrible apnea-like side effects on bac, but wasn't under a doctor's care. I don't know whether she succeeded in reducing her craving or had to quit bac due to the side effects. I am pretty sure there was no doctor involved.

I'm not going to go back into my files and dig up the facts and figures regarding how many hundreds of millions of dollars are spent around the world on alcoholism and alcohol research, education and treatment. Not to mention the undoubted billions lost on alcohol-related illness and accidents and lost productivity.

Its such a big problem (understatement). And the medical community seems to be just, plain, simply absent...I don't get it.

Seems to me I wouldn't be sitting here at my keyboard admonishing UK for how she expresses her concerns about bac and nal if the medical community would step up to the plate and start really treating this disease. Openly and directly. And aggressively.

[Cassander]

Baclofen is not everyone's panacea

And lastly...

Now that the mods or admins or whatever have stirred themselves enough to ban certain members from the forum, maybe now is the time for them to also take seriously the repeated suggestion of many here that a couple stickies be placed on top of the meds thread.

Why not place a general meds sticky up top with comprehensive information about the current status of medical intervention, with sub-stickies for nal, campral, topa, antabuse and bac (and whatever else). Then newbies and lurkers could find general information about each med at the top of the forum and members could stop worrying about whether one med or another is getting too much play. It sure would be a help to the newbies and it might relieve some of the tensions on the board.

[Otter]

Baclofen is not everyone's panacea

Cass,

We all live in hope. There is a wealth of info on this forum but it is like the last scene in Raiders of the Lost Ark, some sort of vast cyber warehouse with little nuggets of information tucked away here and there. This forum is the victim of its own success which is why some have taken information away and written books started other web sites. Ultimately some reputable doctor will write a book on Baclofen and the profession will move. In the meantime there are other places where information is stored on websites which is why I set up my site. This site is for support and exchange of information. It is just not feasible in the long run to think of it as a resource centre because of the shifting membership and the huge effort of constantly having to do over what one has done before. It is a bit like bailing out a boat with a hole in the bottom instead of just plugging the hole.

[KatieSmiles]

Baclofen is not everyone's panacea

Otter;1185976 wrote: Cass,

This site is for support and exchange of information. It is just not feasible in the long run to think of it as a resource centre because of the shifting membership and the huge effort of constantly having to do over what one has done before. It is a bit like bailing out a boat with a hole in the bottom instead of just plugging the hole.

Well said Otter, I agree.

[Cassander]

Baclofen is not everyone's panacea

Otter;1185976 wrote: Cass,

We all live in hope. There is a wealth of info on this forum but it is like the last scene in Raiders of the Lost Ark, some sort of vast cyber warehouse with little nuggets of information tucked away here and there. This forum is the victim of its own success which is why some have taken information away and written books started other web sites. Ultimately some reputable doctor will write a book on Baclofen and the profession will move. In the meantime there are other places where information is stored on websites which is why I set up my site. This site is for support and exchange of information. It is just not feasible in the long run to think of it as a resource centre because of the shifting membership and the huge effort of constantly having to do over what one has done before. It is a bit like bailing out a boat with a hole in the bottom instead of just plugging the hole.

Hello Otter!

I know (I think we all know) that mwo is perhaps not the ideal vehicle to accomplish numerous (somewhat conflicting) objectives relating to bac, including

-providing information to those interested in bac,
-providing a forum for those on bac to keep track of their progress and reach out.
-providing a forum for others to support those on bac,
-surveying the world of bac and bac research and bac acceptance, and
-persuading the powers that be to recognize the efficacy of bac

I applaud you for building a site and hope that it contributes to the greater understanding and hopefully acceptance of bac.

As for me, I am still trying to learn as much as I can about mental health, mental illness, including depression and anxiety, and alcoholism, its causes, consequences and treatments, the brain and its chemistry, baclofen and other medications, and the impact of nutrition, exercise, sleep and community and all of their interrelationships. I sense they are all connected but, as you know, Otter, this is all very complicated.

I am motivated not only by personal and family issues and stubborn curiosity but also by the sense that somehow its all coming together and that we are on the verge of some wonderful breakthroughs. But, again, as for me, I am still pretty much a student at this stage so I'm not too unhappy with our imperfect meds forum here at mwo.

I do wish the vigilantes would stand down, though, and let us losers do our loser thing and grope our way towards the finish line in some kind of peace...

Cassander

[Guest]

Baclofen is not everyone's panacea

Cassander

Back towards the end of last year, when I was struggling and looking at baclofen that was when one or two posters were insisting it works absolutely. I won't name names but that was what was being said back then, and the reason I said "OK I'll give it a go if that it so".

The posts have now shifted to "It works for a lot of people".

No I won't be posting on any more baclofen threads, I decided that
before you made your post above because it's quite clear it is not welcome. My experience was a one off as I've been told time and time again, and it will only put others off. I initially posted hoping I'd help anyone who had been or was in the same situation as I had, where they might feel alone or under pressure - but it's obvious that isn't required and I don't want to have to justify my posts which is why I said "I'd moved on", I have made a concious decision not to interfere or comment on baclofen, or share my experience of those few months any more. Having to post this is actually breaking my promise to myself not to get involved any more, and just reminding me how fed up I am of this 'justification of what can and cannot be posted'. It's a public forum which belongs to RJ, I can post whatever I like as long as I'm not offending or being abusive.


I'd actually just got through a difficult day, but with a great ending to log in here hoping for inspiration and support. To find people making assumptions again.

I had already moved on and forgotten it.