Maintenance Dose Myth or for Real?

[TX Git Slinger]

Perhaps this has been settled on previous threads or elsewhere, but there is a huge amount of conflicting information on whether one has to stay at the switch dosage or is able to titrate down. Conventional knowledge was that Dr Ameisen titrated down considerably and stayed sober there. Dr Levin told me that that false, and that he "learned the hard way." Can anybody settle this and maybe even why there is conflicting info. I'm in the process of titrating up and want to know what to expect when I hit the "switch."

[Baclofenman]

Re: Maintenance Dose Myth or for Real?

A Switch? - This would suggest a night and day change. Some people have reported this, yes.

For me, I stopped drinking after two or three weeks on Baclofen, something around 70 mg daily. I still had the urge to drink and I realised that Baclofen had not got to a stage where it had my anxiety under wraps. From the science and anecdotal reports I had read about, this (anxiety) was the key to my urges, so I continued to titrate.

When I got to 180 mg daily, I found that my urge to reach out for alcohol (be it habit/anxiety/x y & z) had passed. Coffee is good and sparkling water is my treat. This was my switch, my indifference.

I reduced down to 150 mg daily, where I have been ever since. On a couple of occasions I have reduced to 120 mg daily but always returned.

The only side effect I have now is my hatred of drunk people. The smell and the behaviour makes me a very pious and sanctimonious bastard. If this is what it takes then so be it but it does mean I alienate myself from what the majority (it appears) call fun!

It appears indifference can be much harder to achieve the second and subsequent times around!

Regards



Bacman

[TX Git Slinger]

Re: Maintenance Dose Myth or for Real?

I hit a switch very decisively. I went off of the medication for four years. I'm hoping that is time enough for my body and brain to have re-set so that it works. Disheartening to hear that when people try it again it doesn't work.
My question was--and have yet to find a definitive answer--did Ameisen relapse and have to titrate back up? Dr Levin says he did. All the other accounts of his life and baclofen experience say otherwise.

[ig]

Re: Maintenance Dose Myth or for Real?

I hit a switch very decisively. I went off of the medication for four years. I'm hoping that is time enough for my body and brain to have re-set so that it works. Disheartening to hear that when people try it again it doesn't work.
My question was--and have yet to find a definitive answer--did Ameisen relapse and have to titrate back up? Dr Levin says he did. All the other accounts of his life and baclofen experience say otherwise.

I've been taking this drug ta various doses for about a decade. At the time of Ameisen's demise I was also curious about many factors, however my sensibilities got the better of me and I declined to ask. The pervading attitude at that time on the forum was that he was a saint - I would have suffered mightily for heresy!:happy2:

If anyone has some information I would greatly appreciate some enlightenment.

In my mind suicide could have been the ultimate reason for his death. I also found it strange that he died from a heart attack when he was one of the worlds leading heart specialists and would have known better than anyone on the planet how to avoid that fate or how to induce it. It's no secret that he was acting in a strange and omnipotent manner about his discovery. If he discovered that his medication didn't fulfill his promises I would consider that to be sufficient motive.

Only questions and musings so please no hate replys!

[TX Git Slinger]

Re: Maintenance Dose Myth or for Real?

Thanks for the candid response. Curiously, how has baclofen been working for you at the various doses?

Indeed, there is a lot of mystery and things that aren't adding up for me as I try to make sense out of this. I was on bac from mid 11 to mid 2012 and had to get off because I thought it was inducing panic attacks (turns out it was something else). I was getting scripts from Dr Levin who was telling me different stories than Dr Ameisen himself was telling. There are many discrepancies. I guess they don't matter; I'm just curious. But it is all strange. Dr L was telling me that this "Dutch study" was likely going to yield a Nobel Prize and, several years later, no word on it. Many on these forums were talking about this study too, for which they had been given a massive grant. Perhaps the study didn't produce the results they wanted and they folded their hand? If things DID go awry with the study or with Ameisen personally, that is unfortunate, but I don't see why it would be verboten to talk about it. Nobody seems to want to.

Anyway, my paramount concern is that the baclofen works again for me this time. I am in the process of titrating up and am currently at 62.5 mg per day. My concern--based upon what I have been hearing--is that it won't work the second or subsequent time.

[nicnak68]

Re: Maintenance Dose Myth or for Real?

I was indifferent in 2015 at 180 but due to worry about getting the next shipment I titrated down and lost my switch after only 16 days.In my I thought I could just titrate back up to 180 and all would be good again but I got to 280 and still no switch.But to be fair I would drink a glass of wine and want no more and in hindsight I should have stuck with this but I was chasing that illusive switch.I gave up for about 6 months and then decided to try again.Success this time at 160 after just 2.5 weeks.But after about 3 months I started drinking a glass of wine a week and enjoying it.My intake gradually increased even though I was still hadn't even begun to titrate down.
I titrated down to zero and straight away started going up again but again ended up at 250 with no switch and no decrease in drinking,So gave up again and decided to wait a month and try again.
So this is where I am now at 200 with no switch.Im begging to loose faith in Baclofen and not think it's the miracle cure I once thought it was

[ig]

Re: Maintenance Dose Myth or for Real?

My experience with dosage is that the more you take, the easier it is to not take a drink. I believe, for many of us, there is a reason that we became addicted, a psychological reason. This is difficult to come to terms with under any circumstances but probably easier while sober.

Don't look at baclofen as the cure but as a way to get to a place where you can look at your life from a new unclouded perspective. Take it from there and gradually reduce your dose.
I think that even AF that we still have the beast inside us. I've met many a dry drunk at AA meetings. They are still uncomfortable with the world and with the AF added self satisfaction; often uncomfortable to be around!

Back in the day, when I had just reached indifference I remember one forum member who had achieved sobriety at a measly 30mgs. She continuously advocated that we all 'try' to be sober. It was an oxymoron when you consider, with our understanding of addiction, that you don't get the chance to 'try' (the message to drink just doesn't go through that part of the brain). Having said that, I believe that her point was that baclofen will give that part (reasoning part) of our brain a chance to get used again and it's from there that we can start to make good choices in our lives.

Don't give up, I believe baclofen will get you there again. Once there, use your time wisely to get new patterns of behavior ingrained.

[Otter]

Re: Maintenance Dose Myth or for Real?

Ig, I agree with your characterization of baclofen's role. What I would add, though, is that there is a perception we have that we are more in control of our thoughts than we actually are. A lot of behaviour is, I believe, hardwired into us while other behaviour is patterned by experience. The brain scan video by Dr. Childress points out that we make decisions in a billionth of a second so in many cases it's really impossible for us to have any control, if things are out of whack. Baclofen slows the process down in the part of the brain which deals with anxiety craving , giving us a chance for our thinking brain to weigh in on a decision.

I've posted the most recent development in France on the Baclofenista Wordpress site linked below. The RTU has been extended and there are now new rules about when baclofen should be used. I'll follow up as and when I find out more. From my reading it looks like baclofen will be fully approved in about 9 months. I think the delay is because the full evaluation of the results of the two French trials have not been fully assessed.

[Otter]

Re: Maintenance Dose Myth or for Real?

I hit a switch very decisively. I went off of the medication for four years. I'm hoping that is time enough for my body and brain to have re-set so that it works. Disheartening to hear that when people try it again it doesn't work.
My question was--and have yet to find a definitive answer--did Ameisen relapse and have to titrate back up? Dr Levin says he did. All the other accounts of his life and baclofen experience say otherwise.

I hit a switch very decisively. I went off of the medication for four years. I'm hoping that is time enough for my body and brain to have re-set so that it works. Disheartening to hear that when people try it again it doesn't work.
My question was--and have yet to find a definitive answer--did Ameisen relapse and have to titrate back up? Dr Levin says he did. All the other accounts of his life and baclofen experience say otherwise.

I don't have an answer to the question about Ameisen. His position was that one can always relapse but because one can also get back on track with baclofen, there's no risk of becoming "alcoholic" again. I expect he relapsed on and off. That was the considered view of everyone who looked into it, but he continued to function and didn't return to his pre-baclofen condition. He took on a lot in his later years/months. He sent me an email at one point saying he felt he had no "steam" left. We have found the same thing, that we thought this was a cure-all and that one could behave like a normal person, so we took on all sorts of challenges, doing things we could not have imagined doing without baclofen. I think that drove up the anxiety levels and along came relapse after relapse. Now, we don't do anything, or try not to and things are much calmer. Baclofen gives one, imo, a false sense of security, that you can go about doing things everyone else does, and more. It puts you at risk. The other thing I've found is that people who aren't familiar with the treatment feel that you've got better because you've decided to put down the booze and that this is you returning to being a "normal" person who should be expected to withstand whatever is thrown at you, so they throw everything at you. When you relapse, it's an opportunity for them to say "still an alcoholic" and you descend back into the old mess you were in before.


We now keep to ourselves. I've given up my volunteer work and we hardly go out of the house. It doesn't seem to be safe out there. It's a shame and it's something which I have tried to post about for many years. There's no point thinking this is a "cure" for alcoholism if you see alcoholism as a mix of medical and social problems. Baclofen doesn't "cure" the anxiety which comes with having been seen as a waster for 20 years. It doesn't change people's attitudes towards you and it doesn't clear up all the mess, legal, social, family, that you've made for yourself.

If it were the case that this treatment became widely recognized and that there was a holistic approach to recovery, then things might be different. But, for us, it's been an unpleasant experience trying to maintain our privacy, lead normal lives but at the same time, trying to stay away from all the garbage out there that causes anxiety and worry. At the first hint of a problem, you don't get sympathy or medical support, you just get "know nothings" telling you not to drink, having lured you into situations where you are exposed to drinkers and drinking. We are in a retirement haven with lots of heavy drinkers, none of whom are the least bit interested in stopping or in alcoholism treatment. It's very isolating because we just want to keep away from these people, but they are everywhere, and so opinionated and narrow minded.

I think that Campral has helped. I took some for a few days with baclofen. I noticed a real difference in my general anxiety levels about a lot of things. I feel more grounded. My wife is doing well on it and it's stopped a lot of her intense anxiety which manifested itself in the mornings. I think there is something to this idea of taking Bad and acamprosate together.

My hope is that some day, there is a wide acceptance that there is a medical treatment for alcoholism, ie., baclofen, and that people are given the chance to recover properly, with support from family, employers, the medical profession, and that they are allowed the time and space to recover, encouraged to use combinations of drugs under doctor's supervision and with hospital and counselling back up which starts with science, not will power, based solutions. I think we are still years away from baclofen being widely recognized as a treatment, outside France and even further away from the development and implementation of protocols for treatment by the medical profession which give the public at large a useful program for treatment.

I'm now just doing a lot of gardening and pool maintenance, getting my house up and together. I don't work and I don't see myself ever working again. I'd like to take forward a movement towards getting more public awareness and support for this treatment but I feel like the "attorney for the screwed". It's like throwing pebbles into an ocean of ignorance and intolerance. Who knows? I can't change the world...at least not overnight, lol.

[Mom21961]

Re: Maintenance Dose Myth or for Real?

we thought this was a cure-all and that one could behave like a normal person, so we took on all sorts of challenges, doing things we could not have imagined doing without baclofen. I think that drove up the anxiety levels and along came relapse after relapse.

I have to agree with this. I was happily at my switch when my mother who has dementia moved in with our family. My stress level went through the roof, and I relapsed. I titrated up, and found indifference again after adding an additional 60 mg. I don't think we can take our switch for granted. I also think there are many facets to quitting and reaching indifference is just the first step on a longer road. We then have to find other ways to deal with anxiety, to cope with stress, to replace the old habit with new healthy habits.

To answer the question on whether a maintenance dose is a myth... I think, as in all things Baclofen related, this varies widely. I stayed at my switch dose for 8 months and have not been able to titrate down significantly (40 mg). However if you read back on MWO, there were many who titrated down successfully, some down to only 30mg. The french forum also has a thread with current status that shows people titrating down successfully, although the maintenance dose varies (as a % of switch dose). There's always a risk of relapse if you go down too far. It's all over the map, so you just don't know until you try.