Baclofen after the Switch - to taper or not to taper

[tiptronic_ct]

Ignominous alerted us to a statement by Dr. Levin, that "they" are adopting a new protocol, whereby patients are advised / expected to remain on the dose at which they achieved indifference to alcohol (the switch), rather than tapering down to what we have come to refer to as a maintenance dose.

This is what I posted in response to that:

I did notice this statement - obviously with some concern.

However: I can only view this in the context of my own experience and others who have posted on their experiences on titrating down. I have titrated down to 80mg successfully and have been happily AF for well over a year. I see no reason to have remained on 270mg indefinitely. My sobriety is easy to maintain: I simply don't want to drink...

Since no detailed explanation is available as to why "they" think one should remain at the switch dose, I will remain fairly sceptical. What has come to mind is the possibility that the success stats can be "boosted" by reducing the risk of people relapsing should they titrate down too low or too fast (as we've seen happening here with cravings returning).

What is actually of much greater concern is what the long-term impact of this can be on the treatment of alcoholism with baclofen. I know that I, for one, would have had 2nd thoughts if I knew upfront that I would have to remain at such high doses of baclofen. The prospect of taking only a maintenance dose after the intial effort provided me with some comfort. Then there is the cost factor. One also cannot lose sight of the issue of broader acceptance of baclofen in the medical community. I'm fairly certain that if long-term high-dose baclofen without the prospect of tapering down to a level more in line with current clinical guidelines becomes the advisable route, many doctors will think twice before prescribing.
What do others think? I really don't see the need to titrate up again after tapering down so successfully.

[ignominous]

Baclofen after the Switch - to taper or not to taper

Thanks Tip

The origional thread was "Baclofen Doctors".

I'm surprised that we suddenly get this information, previosusly we followed OA's nethod of titrating / tapering down.

Now suddenly I find that my game plan must change.

I am a lost soul clinging onto a lifeline that's been thrown to me. If anyone has information about this change in protocol please post it.

I don't envy either OA or Dr Levin position, we the "followers" have set them up as guru's, they are not. They are shedding some light on a previosly unknown path. For that I'm grateful, there's something to this stuff (baclofen).

If anyone has pertinent or even frivolous information pertaining to this (baclofen) please let poor sods like me know. So that I have the most information (not necessary the best and certainly not sanitised) available to me to base my decisions on. After all it is me who's fucking around with my brain chemistry!

[kabeck]

Baclofen after the Switch - to taper or not to taper

Hi Tip,

I TOTALLY agree with you! I reached my "switch" @ 400mg, I can't imagine staying at 400mg for a long period!!!

I recently post that I was titrating down and the cravings didn't return at all! Now I'm at 100mg and feel great and no cravings or AL thoghts, no SE's, etc .... my plan is to go up to 80-75mg approx and stay there for 6 months or a year (like you did) and see what happen after that.

By the way, at what dose are you right now? Still at 80mg? and how are you doing after a year @80mg?

Best,

Kabeck

[Isolde]

Baclofen after the Switch - to taper or not to taper

I'm still titrating up to reach my switch, but I can tell you that regardless of what "they" are now proposing as the new method, I WILL titrate down after reaching it. I'm basing this on what Dr. Ameisen experienced personally, and what so many people here have experienced. I don't see the point of staying at such high doses of baclofen permanently when it's not necessary (and would get really expensive for those of us who are ordering it online). Just as the switch is a different dose for everyone, so is the maintenance dose. We all have to see how it goes for us when titrating down, and maybe go back up a little higher at some points if need be.

I definitely agree with you Tip, I don't think it bodes well for baclofen to be widely accepted and prescribed for alcohol addiction if it's recommended that we should stay at the switch dose indefinitely. Titrating down after the switch seems to have been working quite well for everyone, I don't understand why it would be proposed to change that.

[tiptronic_ct]

Baclofen after the Switch - to taper or not to taper

kabeck;969720 wrote:
By the way, at what dose are you right now? Still at 80mg? and how are you doing after a year @80mg?

Best,

Kabeck

Yep - still at 80.

I tried going down further than that, but I felt an uptick in anxiety. At this level, I don't feel it in my system at all. I take it in a single dose between 12.00 & 14.00. I changed it to a single dose simply because it easier to remember and more convenient. I took my lead in that regard from Lo0p. I've PMed him to ask if he still does that since he consulted Dr. Levin. Hoping he responds soon (nudge nudge, wink wink ) so that we can see if that approach is also contrary to the protocol currently being adopted.

And I feel great after a year

The bulk of the social issues around alcohol consumption have gone away - the feelings of being "left out", not being able to relax in company, being worried about what people will say if you don't drink etc. etc.

I'm physically more active (extremely moderately so by the standards of certain other members), my health is better than it has been in years (now there's an understatement!), I'm enjoying being a dad and husband again, work has become meaningful etc. etc.

And I love my shrink :h

Apologies for a partially off-topic post :new:

[Seethepony]

Baclofen after the Switch - to taper or not to taper

I think some doctors just bought shares in Baclofen, Inc. *

Remember, this is second hand information, apparently based on one phone call - so until someone comes out and explicitly gives good reasons for a change of game plan, I would treat this is a misunderstanding or mere hearsay. And even if Dr A has changed his entire philosophy, doesn't mean you need to.

If it works, don't uh, you know the saying.

(*Impossible, I know - it's a generic drug!)

[ignominous]

Baclofen after the Switch - to taper or not to taper

I am pleased for Isolde that he/she doesn't see the point of staying at the switch dose permanently. Unfortunately I am not so well informed.

Does Isolde propose that widely accepted would necessarily be good? Similar to the acceptance of cigarettes in the early part of this century, maybe? Oh; that was before the widespread knowledge that smoking could lead to cancer.

Frankly I am not in the business of blindly promoting Baclofen. I personally would like to know why OA supposedly has changed his opinion. As I said previously I am looking for what bodes well for my future health.

It seems to have been working quite well for everyone is based on a sample of what? We don't have enough information or statistical evidence for this kind of statement. I am desperate that it works but putting your head in the sand does nothing to quell danger.

[ThirdMan]

Baclofen after the Switch - to taper or not to taper

Then it seems the only way to solve this matter once and for all is for someone to ask Dr. Levin to clarify what he meant. Then it would be a pretty open-shut case.

[Isolde]

Baclofen after the Switch - to taper or not to taper

ignominous;969830 wrote: I am pleased for Isolde that he/she doesn't see the point of staying at the switch dose permanently. Unfortunately I am not so well informed.

Does Isolde propose that widely accepted would necessarily be good? Similar to the acceptance of cigarettes in the early part of this century, maybe? Oh; that was before the widespread knowledge that smoking could lead to cancer.
I (she, btw) definitely don't believe that what is widely accepted must necessarily be good. Just like I don't believe that soy is healthy and that doctors know what is best for me. But that's besides the point. I don't think the acceptance of cigarettes earlier this century is really analogous to staying at a switch dosage of baclofen, however. First of all, it's been proven that baclofen is safe in high doses. But what you seem to be saying here is that NOT staying at the switch (higher levels) of baclofen could possibly be unhealthy? Seems to be like the less meds you have to take and can still retain health, the better.

ignominous;969830 wrote: Frankly I am not in the business of blindly promoting Baclofen. I personally would like to know why OA supposedly has changed his opinion. As I said previously I am looking for what bodes well for my future health.

From what Tip said, it seems that it was Dr. Levin who proposed not titrating down, not Dr. Ameisen. As I've never spoken with Dr. Levin, and I don't know what his credentials are, I'm really leery of a random post in the forum saying that he's proposing a new baclofen protocol. Dr. A actually wrote a book and published reports in medical journals about taking baclofen up to a point that you reach indifference to alcohol, and then titrating down. Slightly more trustworthy, in my opinion. And in any case, as Tip mentioned, even if Dr. A was the one proposing a change in the baclofen protocol, doesn't mean any of us have to jump on board with it. That's the thing about this baclofen trip - it's all very personal and subjective. You gotta go with based on how YOU feel. And hey, if you need to stay at your switch dose in order to keep your alochol cravings under control, then that's fine. But you're the only one who can say that for sure.

ignominous;969830 wrote: It seems to have been working quite well for everyone is based on a sample of what? We don't have enough information or statistical evidence for this kind of statement. I am desperate that it works but putting your head in the sand does nothing to quell danger.

It's based on a couple of months of reading everyone's testimonials here on MWO. I'm not making a hard and fast statement, I didn't say, "It works for everyone." Based on the personal stories here, most people seem to do very well with being able to remain abstinent (or moderate, depending on what their goal is) while titrating down after hitting their switch. I certainly don't think I have my head in the sand. I didn't jump right on board with baclofen either. I read and read and then read some more, including Dr. A's book as well as what everyone on here had to say about baclofen (including all of the vastly informative baclofen consolidation threads) before deciding to try it for myself. For a lot of people here on MWO (and certainly for me as well), it doesn't seem like staying at the switch dosage indefinitely is very appealing, whether due to financial reasons or intolerable side effects at higher dosages, so being able to retain the benefits and titrate down is desirable. I haven't read one testimonial yet of someone who had to stay on their switch in order to retain the benefits. So it doesn't make sense that I would take as rote something that somebody posted on a forum about some doc. I've never spoken to or read about proposing such a drastic change in the baclofen protocol, especially with no reasoning to back it up.

In any case, my original post merely stated what I personally planned to do (titrate down after the switch), not what I thought everyone on baclofen should do.

Ignominous, you gotta do what you need to do for you. I'm not telling you I know what that is, cuz I don't, you have to figure that out for youself as you go on this journey. I'm doing what I need to do for me, as everyone else is - checking in with how they're doing on bac, going up or going down as need be, and constantly reassesing until they get the desired benefits. I wish you luck on your journey.

[ignominous]

Baclofen after the Switch - to taper or not to taper

Ahem... cough...cough (I feel a long post coming)!

The point I was making is not about: what you do or do not believe, but whether "widely accepted" is a valid reason for taking a side.

Ar first glance it would seem to me like taking less of any medicine would be better to retain health. However, is that actually correct in this case. All I'm trying to provoke is some investigation into this original post on the "Baclofen Doctor" thread.

I just spoke to the doc. What a wonderful guy. I'll start the bac asap. BTW there is a new system and regimen. Titration is a process (2-3 mos.) and there is no maintenence dose, you stay at the dose where you hit the switch. This comes from Dr. Ameisen through Dr. LeVin. Super psyched to start

I was surprised too. I've been reading about this treatment for almost two years now and I've never heard of this philosophy, including with the self-administration technique of OA. When I spoke to Dr. LeVin, and he told me to stay at that dose when I hit the switch, I stopped him and asked about going down to a maintenance dose, he told me verbatim, "we're not doing that anymore." I was surprised and didn't push him on the subject, as I was anxious to begin with and grateful for all his help, but he did intimate that this was the new philosophy in administration of high dose baclofen. This isn't totally surprising as such a new treatment must require early fine tuning and experiment. Take that for what it's worth, I'm only relaying what I was told. I will post my full regimen when I start, and hopefully the newly refined technique will work for me, and if it does, for others as well.

Just because OA originally pioneered tapering down, it is not beyond reason that he may have changed his mind in light of new evidence. Hence my comparison with cigarettes which were believed at one time to be therapeutic.

As ThirdMan suggested a clarification of the above quotes is required.

I have never spoken to Dr Levin and apart from difficulties with telecommunications from where I am, I am reluctant to impose on him.

However leary I may be about about unsubstantiated statements made on this forum, I don't believe I can simply ignore them just them because I don't like them.

Possibly the people who have bad results from tapering down are disinclined to post their results here. The combined wisdom on MYO may be tainted by peoples sensitivities about not wanting to upset people on this "feel good" site.

Isolde I'm glad that you agree that individuals should make these decisions based on their own findings and what they need to do. My comments are not to be taken personally. Only I wish to have more evidence on which to base my decisions.

[Doggygirl]

Baclofen after the Switch - to taper or not to taper

I hope it's OK if I ask a question out of curiosity. I've read the other threads that talk about some pretty uncomfortable SE's at high doses. If one were to stay at a high switch dose long term, would the SE's subside?

Thanks - I follow the Bac info with interest. But since I don't take it myself, my questions might seem stupid. (I don't mind if you don't mind. )

DG

[Isolde]

Baclofen after the Switch - to taper or not to taper

I hear what you're saying. And for me, widely accepted (meaning based on a lot of the testimonials here) is a valid reason for taking a side. At least until I see how it works for me.

I hadn't read that part in the other thread about Dr. Levin's change in the protocol coming from Dr. A. I agree that there needs to be some clarification as to the "why". I'm definitely curious about that. And if anyone ends up following the new protocol, I'll also be very curious to see how it ends up going for them if they stay at the switch dose long term. To me it just seems like common sense that why take more if you can get the same results with less. And I certainly wouldn't be changing "sides" without any evidence to the contrary.

It seemed to me as though you had accepted the new protocol, without it being either widely accepted or even explained:

ignominous;969718 wrote: I'm surprised that we suddenly get this information, previosusly we followed OA's nethod of titrating / tapering down.

Now suddenly I find that my game plan must change.

Fine by me if you had decided to go that route, but I'm glad that you're looking to get more information about it too.

[Sunnyvalenting]

Baclofen after the Switch - to taper or not to taper

I never looked for a "switch" and was easily abstinent and remain so at quite low doses. I got up to about 110/day and am now down to 10-20 at bedtime as much to sleep as anything.
At any dose increase I noted side effects which fairly quickly went away. (mostly sleepiness when i stopped doing anything). I don't know if this would be true a the highest of doses.
I can see no reason whatever to stay at a dose above the level where I can easily maintain my abstinence. I think each of us is a case history of one and need to decipher for ourselves the best course.
Sunny

[electron]

Baclofen after the Switch - to taper or not to taper

I read Dr A's book and my understanding of the reason that the high doses were decided to be safe was because his friend regularly prescribed doses of up to 300mg per day to people that needed it for different reasons than we need it but the important thing that I got from that was that they needed the high dosage and that dosage is what they needed for the medication to be effective for their disease symptoms to be relieved. I assume they need to continue to take that high dosage indefinitely to treat their symptoms. So I guess if the side effects (if any) are preferable to the symptoms of their disease then they are to continue to take the high dosage.

I realise that I'm making assumptions and I don't pretend to be knowledgeable in any of these things but I just wanted to make sure that other people reading this thread don't freak out about the possibility of taking the medication at high dosages when they may not have read the book or have any knowledge of the actual main purpose for this drug.

So in summary, I think there are people that are taking high doses of baclofen for the treatment of m/s or other diseases without any plan of reducing the dosage and that may be of some comfort to anyone that is worried about the safety of taking this drug in high doses.

[gratitude]

Baclofen after the Switch - to taper or not to taper

perhaps wildrover or far far away can comment as they are both I believe in contact with dr. levin recently, according to their posts.
tip, do you think you lost the nervousness about being around alcohol socially because of the bac? or because you are just getting used to it? I've been sober 3 years without bac and I still can't take being around it without that nervous, left out feeling. thanks all.