Questions about baclofen -- for Dr. L. and beyond

[Ne/Neva Eva]

Questions about baclofen -- for Dr. L. and beyond

Love this dialogue, ftr. Thanks beatle. He is very amenable to this btw, and I found it useful to email it to him and then go through the questions point by point.

Anyone going to call him Tuesday night?
xo
K

[redhead77]

Questions about baclofen -- for Dr. L. and beyond

Beatle and all,

I'm going tomorrow. I will take questions that are listed with me and if anyone has a couple more that's fine. I don't know how much he has to ask me and how much time I will have to ask him. Either way, I will inform him we need to pick his brain, and how best is that done? I am looking forward to this, I think is will be interesting. I don't go till tomorrow night so pm me or let me know if there is anything I can ask.

[bleep]

Questions about baclofen -- for Dr. L. and beyond

I know 37, amongst others, will want to know how many people he has treated so far, and what success rate he is experiencing.

[ignominious]

Questions about baclofen -- for Dr. L. and beyond

Just found this thread, I’ve been away from MWO for a few weeks. Think this is a very generous offer you're making Redhead and so as “not to look a gift horse” I will proffer one that is pertinent to me. I realize that you are looking for pre-switch answers but I this is relevant to a general understanding of how baclofen works.

Due to many people benefiting from the anti-anxiety effect of baclofen which is then beneficial to maintaining and enhancing an alcohol free life: are there any drugs with a longer history pertinent to this that could possibly be substituted or added to boost this particularly pleasant SE?

I don't want to suggest candidates such as xanax, prozac or wellbrutin as he presumably will have a better idea of the medical effect I am referring to than I do.

I’m post switch, thank goodness. If I were in your position I would have tombs of questions more pertinent however if you get a chance to slip this in, I’d love to hear an answer.

POSTED BY BLEEP
I'm curious as to maintenance doses, so obviously mine can go near the bottom of the list, or even skipped if there is no time. What sort of dosage is he finding to be successful. I'm assuming if there is a golden dosage regarding curing people, the same would apply to maintenance?

POSTED BY GREG
1) Has Dr L found any relationship between the daily dose of baclofen required to reach indifference to alcohol and the average daily amount the person is drinking?
2) Has he found any real benefit (apart from health in general) in a person being already alcohol-free when starting baclofen and working their way up?

POSTED BY OGEL
I would like to ask, and I am sure that all going through the Bac experience would like to know also, if Dr L has thoughts on the way forward for those who have found the indifference we all seek on Bac and are now on very low - 10mg to 20mg dose daily. As he has already said, that 18 months on, we should be back to a stage that we were before starting to drink, does he have thoughts on a maintenance dose thereon or is it ok to stop taking bac after the 18 months?

POSTED BY BEATLE:
Is there a relationship between how much and how long a person has been drinking (drinking history) and the level at which the switch will be reached?

POSTED BY IGNOMINIOUS
Due to many people benefiting from the anti-anxiety effect of baclofen which is then beneficial to maintaining and enhancing an alcohol free life: are there any drugs with a longer history pertinent to this effect that could possibly be substituted or added to boost this particularly pleasant SE?

[redhead77]

Questions about baclofen -- for Dr. L. and beyond

Okay, your questions are noted. I kind of am getting nervous for my appt. I don't really like going to the doc. Not like anyone does......

[seeking_serenity]

Questions about baclofen -- for Dr. L. and beyond

You need to tell us what he looks like afterwards, redhead! I picture a younger Lee Strasberg, probably because they have similar voices/accents.

[redhead77]

Questions about baclofen -- for Dr. L. and beyond

Okay seeking. I'm acting totally bipolar. I want to meet him, I am now getting cold feet. That's just me. Sounds good until it's here and on top of me. Anyway, I WILL go. I thought o myself, well I could just change it to a phone appt......I won't. Thank God you guys are here to hold me accountable! :h

[redhead77]

Questions about baclofen -- for Dr. L. and beyond

Notes from my visit with Dr L:

Wow, where to begin? Firstly, bear in mind that it's been a long day. Driving into the city was horrendous, the traffic. My appt was at 5:30 and between rush hour, and everybody and their brother driving in to play on friday night, it was horrible. My bp had to be through the roof, I was nervous and late. Here goes the best I can explain it all (sorry for all the details, I have a hard time cutting to the chase).

Firstly, he kind of looks like an older Alan Alda. He's in his 60's. He is tall, maybe 6'1 with gray hair and glasses. He is of medium build. Very kind looking. He was dressed casually in slacks and a short sleeved button up. I was looking like a deer in the headlights and he kind of grasped my hand and firmly (but not too firm), and pulled me in his office.

His office had a lot of furniture. Brown leather but it was worn and definately used. Comfortable. He had books and journals everywhere. It was a tad unorganized but not exactly messy. I guess you could say it looked lived in, and I can tell he spends a lot of time there. He has tons of Japanese art and paintings around. He told me he's a japanese freak and also a researcher on Japan. He also has a wall of beautiful architecture in Chicago. He clearly enjoys where he lives.

He ushered me to a seat, and his first question was, so what brings you here, seeking baclofen? I didn't know what he was getting at, I assumed he knew it was for alchohol, but I guess now he is starting to treat heroine and cocaine addicts too. The word is out, and they are seeking him. They follow the same protocol as we do, to get sober (he never uses the word sober, though). After this brief introduction to my substance of abuse, I asked him if he wanted to know how much I drank? He said it was irrelevant. Baclofen will work for me no matter how much I drink.

We then got on to it. He went over the titrating of baclofen and exactly how I will dose it. I took notes so if anyone has any questions, I could post on here his exact titration protocol (which is now Ameisens and what they are using in Europe). Per Dr L, and his titration scale, I will most likely not see the "click" (that's what he calls the switch), until week eight. That's when I will hit 140mg and that is the beginning dosage that he says people start to hit the switch. The vast majority of people will hit the switch between 140mg and 250mg. Although, some (he said very few in his experience), will need 300mg or more.

His experience includes treating around 500 alcoholics. He is getting more every week and is now also treating other addictions. Of the 500 alcoholics he has treated, 5 have failed. Yes, you read that correctly. That is a 99% success rate. I asked the cause of failure and he said that the ones that fail, quit taking it. He said that they all were titrating up too quickly and were having SE's that they thought were intolerable. Instead of taking his advice and slowing down, they just quit.


I asked him if how long one was a drinker or if alcoholic genes had anything to do with how much baclofen it would take to hit the switch. He said no. It appears to be genetic, how much one will need for the switch, but it isn't necessarily based on alkie genes. He says in Europe where they have been treating members of the same family, they all seem to need around the same dose. It is different for every family, though. He can't say what the variance is related to, they don't know.

As far as maintenance doses, and you all will have a hard time with this, I know I did (do). He says that the dosage I require to hit the switch is the maintenance dose that will be required for the rest of my life. Yes, I know how upsetting this is to many of you, myself included. We had a lot of discussion about this. He said that relapse is occurring in people titrating down. From his own experience and Ameisens and everyone else looking at the data, it seems that people need to stay on their switch dose. I said, maybe my brain will heal and I could go off of it? He said, I don't think so. I think that you will probably need this for the rest of your life. Your biochemistry is just different. He seemed sad when he said this. He then said, if after a few years of health, you want to try to come off and see what happens then that's fine.

I then asked him what would happen if I came off or titrated down and relapsed? He said that in his experience that all alcoholics who go back on to their switch, do it just fine. Their is no effect where you can't redo what's already been done. He seems to know a lot about the relapse thing. I think everyone is trying to titrate way down or come off, and they are relapsing. There are no relapses if one stays on the dose that they hit their switch. Verbatim from Dr L. So, to summarize for all, we will never be able to stop taking this drug. For the rest of our lives. You are welcome to try, though. No matter what, you will still be able to stop drinking again with baclofen. There is no "kindling" or whatever I read in another post.

General things we talked about: Dr L is a psychoanalyst, psychiatrist, and brain researcher at Northwestern University. He has a particular interest and passion in the cerebellum. He talked to me a ton about the cerebellum. He recently published another book, he has published two others. This new book, is like all 3 books combined. It's called Emotions and the Psychodynamics of the Cerebellum. He says critics say it is flawed in that the middle chapters are too complicated for a person without scientific or medical training to read. He laughed about that. He seems thrilled with it, really.

We talked about how my insurance would be billed and he stated "there is a whole lot of bullshit going on, and I don't trust billing this as substance abuse". He will bill as depression. That statement got us to talking about alcoholism and the whole it's a moral and character flaw thing. He looked at me and said this is completely biochemical. Of course we alkies, already know that. I'm sorry if this offends any of you AA people but we also talked about AA. He said straight out (most of us also know this), that AA flat out doesn't work. Well, from a scientific perspective 5% or less of people get sober from AA, so we agreed on that one.

What else? He told me he doesn't have all the answers and he learns daily from his patients on bac. He loves my cute pink notebook and said, please write down your experiences and share them with me. I am always learning and will never stop. He does not a have a God complex for sure. He is a believer in psychoanalysis. He told me I should undergo psychoanalysis. He thinks with bac, it is an absolute assurance that I won't go back to being an alkie. He says most alkies also have underlying problems that lead them to drink, plus the biochemistry. I can't say that therapy has ever cured me, I've had hundreds of hours of it. I will be ungoing therapy with him, though. Interestingly, I believe I can totally trust him. I don't trust ANYONE, ever.

So, here is my experience for now. I'm sure there is more, but I can only post, and think so much. Also, I had about 50 more questions when I got in the car. I will talk to him again, many times. I guess the rest will have to wait. At the moment, I'm listening to music and loving my bac buzz. What's up with music and bac? The music speaks to your soul. I will jot this in my journal for Dr Levin, as with the rest.

Peace and love all,

Redhead

P.S. I'm sorry Ignominious, I didn't get to your question. I had 1 hour, and we ran out of time. I will try in the next converation.

[redhead77]

Questions about baclofen -- for Dr. L. and beyond

One last thing I forgot to tell you. He told me when he heard about this he was a complete skeptic. He said, alcoholism was impossible to treat. Not now in his opinion. He says a cure has been found. Again, in his opinion, with 500 alcoholics.

[Lo0p]

Questions about baclofen -- for Dr. L. and beyond

That's awesome! Thank you sooo much for explaining your visit it in such detail!! :goodjob:

[gratitude]

Questions about baclofen -- for Dr. L. and beyond

wow. I wish I could have been with you. this doc sounds very genuine.
thanks so much for posting this. I'm a huge fan of psychoanalysis and neurology. :thanks:

[gratitude]

Questions about baclofen -- for Dr. L. and beyond

p.s.
can you please post the titration schedule? I wonder if you tit slowly you reach the switch at a lower dose? perhaps a good question for " hawkeye" levin.

[Murphyx]

Questions about baclofen -- for Dr. L. and beyond

All his answers seem to coincide with the vast majority of experiences here. I was unsure about him before this, but not now. Dr L seems like one of the good guys.

[Guest]

Questions about baclofen -- for Dr. L. and beyond

Some great information there Redhead. The point about the maintenance dose is very apt for me right now. A few others had mentioned titrating down now I've reached my switch, I haven't because having come so far I do not want to risk drinking again so I've kept my dose the same awaiting more information. Your post has been very timely.

Regards titrating I bumped along with some fairly large increases, and still have come to the switch on a relatively lowish dose(100mg). On the other hand I did have a whole host of tools I was using at the same time too, including visiting a very good counsellor who was maintaining my motivation as well as helping me deal with difficult situations I was having in my life - mostly as a result of having used alcohol to deal with things historically.


Thanks again.

[Greg]

Questions about baclofen -- for Dr. L. and beyond

Thanks very much Redhead, this is greatly appreciated. If it's ok, I'd like to show this to one or two of my alcoholic friends who still drink extremely heavily, but who were very skeptical about baclofen (or any other drug treatment for alcoholism).

Also, maybe it's not impossible for at least a few people to reduce their baclofen dose after reaching their switch, since Dr Ameisen spent a couple of weeks (from memory) at his switch dose of 270 mg/day then went down to 120 mg/day in 12 days without relapse. Even if most people can't do that, they would still be better off taking baclofen than drinking.