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

[ignominious]

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

C'est la vie, Red. C'est la vie.

Great post though, thanks for sharing.

Correctly you predicted that the maintenance dose would be an issue for some of us! Tend to think along Greg's lines that if OA has done it why can't others. At the last count I heard he was on a dose of 120mg.

[spuddleduck]

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

thanks for this great information. i dont suppose anyone can answer a question i have. i have read that bac can mess with blood sugar levels. does anyone have any experience with this. im diabetic so obviously this would have to taken into account if i were to take bac.

[Lo0p]

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

Greg;1058639 wrote: 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.

Dr. Levin told me that Ameisen had to go back up to 320 mg/day. Not sure if that means here is there currently ftr.

[redhead77]

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

I have to make this fast. I have to head into work. I will post the titration schedule but I won't be home from work tonight till 8:30 or so. I work hella long hours. Same for tomorrow so I will try to do it in the next 2 nights, but if not, it will be Monday for sure. Yes, spuddle I have read the same. I am seeing an endocrinologist because of 3 diabetic pregnancies and he is trying to prevent me turning diabetic. This worries me as well, and I never got to it with Dr L. Clearly, if I have to stay on this for the rest of my life, this will need to be brought up. I had so many questions on staying on this and what will I tell the doctors who ask and on and on. We came up with a plan. I will post more later.

Greg, scream it from the rooftops. The message should be passed on and we talked ad nauseum about all the alkies that are dying everday due to not having this info. Speaking of, I'm sure I will meet and care for some today. Remember, you can titrate down and test this all you want. The risk is relapse, but bac is always there to start over. No risk in relapsing and this not working again.

[Ne/Neva Eva]

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

Man-o-man-o-man-o-man.
Your detailed account is just brilliant, Red. Thank you so much.

Clearly, I am going to have to figure out how to get my insurance company to cover the bac! Generic it may be, but inexpensive at this level, it is not! (for me!)

Sincerely, thank you. (and you, too, beatle, for getting the ball rolling!)

Ne/Karen

[seeking_serenity]

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

Redhead--thank you for the FABULOUS post about your visit! I loved all the details. He sounds pretty much like I pictured him.

Glad to hear you'll be doing psychotherapy with him! Now that I have insurance I'll also be doing weekly psychotherapy sessions with him as well. He is just so easy to talk to and I trust him more than I've ever trusted a medical provider. I do see him as my salvation from a lifetime of anxiety and alcoholism.

What a wonderful thing he is doing. And how wonderful that you were so generous with sharing your experience. These types of posts save lives. That is not a joke and not hyperbole.

:h

[Isolde]

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

Redhead, another big thank you for sharing the details of your visit with us. I felt like I was sitting there in the office with you!!

Bad news about the switch/maintenance dose, but GREAT news about it always working again if we relapse. I don't see how I could have stayed on 180mgs and been able to function on a daily basis. Maybe some of the SEs would have gotten better over time, but maybe not. If I have to go back and forth between 80 and 180 every few months, or however long the effects "stick", then that's fine with me.

With OA, it does seem that the maintenance dose continued to work for him for quite some time. I guess now that more people here are hitting their switches, the whole maintenance dose/relapse question will really be the thing that we will want to start looking at. Seems like Dr. L is finding out new information all the time, just as we are (and FROM us, too!). Very cool stuff.

[bleep]

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

Great stuff Red, thanks very much for all the information. Absolute gold. What you say about the maintenance dose rings true with what I have just posted in my thread.

Again, a big thank you for all your help, I hope you managed to get time to go over your case!

[Greg]

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

Anyone who looks like Alan Alda just has to be awesome (sorry but I'm a MASH fanatic!).

Lo0p, thanks for that info about Dr Ameisen going back up to 320 mg/day. His book only gave details up to a few years ago, when it was finished obviously.

Redhead, thanks, I'll happily pass this along and hopefully find a doctor in my part of the world who will prescribe like Dr L. And yes it's great that people can go back up to the switch dose if they mess up and relapse after trying to titrate down. Let's hope that in future most people don't have to keep ordering online and can be under a doctor's care, so no more worries about supplies not showing up in time and running the risk of serious withdrawals (very important if this has to be a lifetime committment).

As far as baclofen and blood sugar/diabetes is concerned, maybe the best place some of us could look for that info would be responsible drug sites like rxlist, or doctors who already use a lot of bac for spasticity, MS, and so on. It is sensible for people to be concerned about dangers, but we also have to remember the alternative dangers of alcoholism, which would include diabetes and related issues I'd imagine.

[beatle]

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

From my conversation with Dr. L.

I am copying and pasting this from my thread about my conversation with Dr. L.

I think it goes well together with Red's. And I hope someone will find Neva's similar post in which she details her experience with Dr. L, and answers loads of Qs.

Notes from my discussion with Dr. L
Keep in mind that I had an extensive list of questions and did not have time to get to them all. Also, the conversation takes on a life (and direction) of its own. (More about Trazadone in a later post.)

? As AL consumption goes down, less SEs. And improvement happens faster with reduced drinking (I didn?t get to ask him if the switch point might also be lower if you are AF.)
But ?I don?t want to get you crazy about it? (mentioned something about stress and increased adrenalin levels being detrimental to treatment). ?My job is to make sure that you cut down, not your job. My job is to turn the chemistry off.?

? Works closely with Dr. A, and if he had any questions, he would consult Dr. A immediately.

? Regarding brands of baclofen:
Doesn?t know anything about brands. Didn?t even know what brands are being dispensed for his prescriptions.*
Just believes the U.S.-filled prescriptions are safer because they go through a pharmacy (which would apply elsewhere, i.e. Europe). He said the pharmacies are ?strict on quality?, not ?fly-by-night?.
(Didn?t even know the brand name Lioresal. Had to ask me to spell it and looked it up. Didn?t know Novartis, either. He is only concerned about the overseas internet-dispatched products because they are not controlled).

? After you stop drinking, it takes about 1 -1.5 years for your brain to ?normalize? and then it will ?continue to improve?. He also used the word ?maximize?. I?m a little confused on this point ? but I think he meant your brain will start recovering from the time you stop drinking, but it will take 1-1.5 years before this process (of improvement and rebuilding the brain) is ?maximized?.

? Most people respond to baclofen at 210 to 275 mg (later in my notes I wrote ?250-260 => Golden level?)? weight has nothing to do with it. It?s all ?chemistry and genetics.? I didn?t get to ask him what ?respond? means ? but I think he meant reach indifference. I also didn?t get to ask him what ?most people? means?90%, 70%? (Also didn?t get to ask him if the length of time and how much you have been drinking play a role.)

? SEs:
He said ?I don?t want there to be any SEs. I don?t want it to be different than water.?

When I asked him about hallucinations, he said he had never heard of hallucinations as an SE of baclofen. ?(You are) a genetic anomaly? (is this true? I thought a lot of other people had reported this.. maybe not.)

? From my notes:
?BDFN kicks with the GABA reception? first connection? bac undoes this connection?
?Like you never had any alcohol in your life. Just like magic. It stops. It turns itself off. And it will stay there for the rest of your life.?

*I did not mean this in a denegrading way, although it sounds like it. In fact, his lack of knowledge about the different brands only proves, and attests to, his complete separation from the various baclofen producers. I probably should have written: "To his credit, he doesn't know anything..."

[ogel]

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

Thank you so much!

Just call now and then to read threads and posts which I find encouraging and informative. Was also interested to see if you had been to see Dr. L as you had hoped. Great post by you about the visit and good to have the answers to the Qs some of us had posted. Quite happy to stay on my low dose for ever and a day. Cannot thank you enough for doing this - a geat help to us all. Best wishes, Ogel

[beatle]

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

oh, and Redhead -- wow! That was amazing. So helpful and so thorough. Answered loads of questions, and gave good feeling about the doctor -- what he looks like, his surroundings, your impressions... priceless. Thank you so much!

[Ne/Neva Eva]

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

The notes I took after one of our conversations:

https://www.mywayout.org/community/f2...vin-46680.html

I agree that it would be helpful to have a master list that we can refer to quickly and easily. Maybe it they can be included in the opening post for this thread, and each subsequent post with updated info can be edited in as they come up? A la consolidated?

[Grommet]

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

WOW Red, all I have to say is

:grouptrophy:

AND

:wave:

AND

:disco:

Your rock girl. I love the intro about how the office was decorated - I felt like I was settling in to a great novel with a hot cup of cocoa!

[bleep]

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

The more I think about it, the more the maintenance dose makes sense, and it's something I've wondered about in the past - If a dose "cures" you, you shouldn't need to take it anymore at all. Similarly, if you need to keep taking it, it makes sense that you need to keep taking it at the "cured" dose to remain cured.

Ig, I'm also taking sulpiride. The two seems to work very well together. Doubtless someone is going to hop in here and say the two are contra indicated, I hope not.

I agree with Grommet, it's a really well written and smooth post!