Thinking of getting off the bac

[hoping4better]

Hi all,

I don't want to discourage anyone who is using bac, b/c it has helped a LOT of people moderate or become AF. But so far it's not working for me.

At 5'3" and 125 lbs, I am up to 200mg with no results but a lot of side effects, some of which I can no longer live with, especially not hitting the switch. I keep saying, ok, I'll go up to X and if I'm not feeling it, I'll stop. My stopping point was 200mg. Beyond that, I think the SEs would be just too much to deal with.

The main SE I've had since about 150mg is this buzzy, dizzy, "high" feeling 24/7. Then there's the constant snoring, gag-inducing postnasal drip, weight gain, sweating, hair falling out....I would be willing to endure this for a little while longer if I knew I would hit the switch. But I am not a large person and continuing to titrate up much more would become debilitating.

Just throwing this out there. Like I said, I don't want to discourage anyone who is doing bac as it has worked for many others. I have also done TSM without success, so I really don't know where to turn from here.

[OZboy]

Thinking of getting off the bac

yeah!!

but it is an ideal situation??

..so what ar u' gonna do now???

OZ needs to know!!!

[OZboy]

Thinking of getting off the bac

.BTW:

I wouild9CAN;T,SPELL''

..DON'T..TAKE BAC FOR THE FOUN OF IT......OKKKKKK???


..DR OLIVIER IZ A FRIEND OF MYNE....

..ozBOY..:new:

WELL I'M SORT OF HERE..but whpklko..cares...:H

[hopefulspirit]

Thinking of getting off the bac

Hey,
I'm just about where you are in terms of dosage, not weight But I'm not that far from it either. May I ask how long you've been drinking and how long you've titrated up? I can say that I've really done this slowly... maybe too slow but I let my body tell me when I can take more. If your body wants you to back down, maybe you should for awhile?? Maybe stay at a comfort zone until your body accepts the Bac and slowly go higher.
Your SE's sound terrible but you've come this far...
-HP

[tiptronic_ct]

Thinking of getting off the bac

It saddens me when I see posts such as these. I feel frustrated and bloody well powerless.

But I guess one must accept that bac is not, in the end, a magic little pill for everyone.

The alternative (depending on AL intake) is actually too ghastly to contemplate. I have no doubt that I would have been either dead or destitute by now if it hadn't been for MWO and baclofen.

H4B: if you don't mind, can you please give us a recap of your bac journey? Period of time on it, speed of titration etc. I think it would just help to contextualise your decision.

Whichever options you consider going forward, just know that MWO and its members will be here to offer you support and encouragement.

[tiptronic_ct]

Thinking of getting off the bac

infotechproximity8;905818 wrote: I would be willing to endure this for a little while longer if I knew I would hit the switch. But I am not a large person and continuing to titrate up much more would become debilitating
__________________________________________________ _________________
Used Auto Parts | Used Car Parts

At what level are you now? Speed of titration?

[tawnyfrog]

Thinking of getting off the bac

Infotech - if you want to talk to us, please remove your spam.

[PhoenixRising]

Thinking of getting off the bac

Have you considered going down to 180mg and hanging there till the SE's abate? I was the same as you back in Dec at 190mg and got scared, so I went back down to 30 and am now kicking myself. I am at 225 (145lbs) and feel I am very near the switch. I actually put wine back on the shelf last night.

[Sunnyvalenting]

Thinking of getting off the bac

If you do decide to stop the medicine take several weeks to taper down. Suddenly stopping the bac will give many people severe symptoms. It must be tapered slowly. I was told no faster then 10 mg/day for a week. so at 200 mg that would be 20 weeks!
I know of one clinic where they prescribe baclofen plus naltrexone. Don't know if that would help your case.
Good luck and keep posting. We care.
Sunny

[hoping4better]

Thinking of getting off the bac

Thanks for all your responses. I really appreciate it.

Tip, I've been on bac since late feb/early march, so about 5 months or so. I titrated fairly slowly, first adding 5 mg every few days, then 10. Since I reached 150mg, I've been even more cautious. But at 180, the SEs became really hard to deal with. I am also having auditory hallucinations (hearing things, music etc) -- I also experienced this while on Campral. And I noticed today that I'm starting to get a bald spot!

I realized that I am expecting meds to do the work for me, without me adding effort or willpower. I wanted so badly to believe that, poof, one day I'll look at a glass of wine and be repulsed!

HP, I'm 46 and have been drinking my whole adult life, but I would say it started to become a real problem after my divorce 7 yrs ago. I am a daily drinker, but "only" at night.

Phoenix, yes I have titrated down the last few days b/c of the SEs.

Sunny, I was on nal when I first started bac but stopped using it.

Not sure yet what I'm going to do, but it's so great to have this support system!

[Brave Hearted]

Thinking of getting off the bac

Hi hoping, Just wanted to say hi and my heart goes out to you ! it seems that like any drug it does not have a blanket effect. The s/e seem very extreme and can imagine why you are considering giving up, what abotu contacting Dr Levin and chatting to him and he claims to have zero s/e with his patients on baclofen, I know you have to pay to speak to him but it would be better than giving up untill you have exhausted every avenue.

Good luck

[hoping4better]

Thinking of getting off the bac

HI BH,
Thanks for the good thoughts. It's hard to believe none of Dr. Levin's patients have had SEs -- I have stuck with his method of taking the same dose at regular intervals and titrating up slowly. But you make a good point. Maybe I will call him and get his input.

[houtx]

Thinking of getting off the bac

Testing - I have posted 2 replies and they won't go through

[houtx]

Thinking of getting off the bac

UGH - of course my short one did! Let's try again:

H4B, I am thinking of going off BAC for all the reasons you mentioned. I am at 120 mgs & it has taken me since April to get here. I haven't lost my hair yet, but your post freaked me out. What have you decided to do? I got a new shipment a few days ago and wondering if I should continue on up and live through this ongoing HELL...or start to titrate down and give it up?

I HATE baclofen!! Since getting to 90mg. the mental fog I am in is constant, the weight gain is a nightmare, and the very thought of losing my hair is enough to make me scream NO!!!! I would rather fight this demon on my own terms again...I think. I don't know - I was soooooooo hopeful -

And now to see if this will fly -

[Otter]

Thinking of getting off the bac

You should read the post by DeeBee on L-glutamine and weight gain.

The mental fog goes away. It has taken my wife a year of titrating up to get to a point at 120 where she feels happy and normal and AF. After 20 years of drinking that is amazing.

If you want to go back to drinking that is fine. There are a lot of people on this forum who have found their own way out of the hell of alcoholism thanks to Baclofen when nothing else works. My wife has not lost her hair. Her weight gain is less than it was when she was on other medications and she has a hope of a useful life.

I would not give up. The side effects wear off. Lower your dose for a while then try going up gradually again.

You can go off it but remember..Nothing else works...Nothing...