My buddy Baclofen might be turning on me

[truvision]

Well,Ive posted on here already a few times already about how fabulous that baclofen has worked for me. At only 30 mg for namely for anxiety it has been a miracle so I feel kind of stupid that now it seems to all be going wrong out of the blue yet suddenly and ferociously it seems to be turning on me.Some of the minor SE's like runny nose, even bloody nose at times, constipation, coughing, dizziness etc I didnt even equate to baclofen (even itching but not entirely sure that has been from the bac however).Well, all that as Ive stated before on here I can handle those as the med really gave me my life back.

What I had been noticing for a while however, were these strange fleeting thoughts that come suddenly like "Oh my God Im gonna lose my mind" or feeling almost a trapped sensation where I want to almost break free of my own body.. although yes they come quickly and pass after I get my mind right I know they are not normal and are quite disturbing. Then last night and on several other nights this week right before I go to sleep I feel like Im going to quit breathing, have panic right before Im about to go to sleep which keeps me from sleeping and mild hallucinations. Now in the beginning of bac I had some truly WICKED audible and visual hallucinations that subsided and then it was all great. Anyways, I thought let me try and maybe taper back a bit and see if it gets better.

Now, I am only on 30 milligrams but withdrawal from baclofen from what I have read is not dose dependent meaning I guess that my withdrawal can be just as bad as someone on much higher doses. I am also at the upper, upper extreme of sensitive so thats not abnormal for me and so knowing my body I knew tapering back even five mg at a time was way too fast. I thought well why not try the SMALLEST chip in reduction first.. ,must have only been like a half of 2.5 mg that I reduced.. well only hours after my missed dose I started feeling mild panic. To make a long story as short as i can, (hha sorry) by that night I went back and even took a neurontin with it to help and still a no go, it was getting much worse.Only when I went back and took that tiny freaking chip did it all go away.

I know this is going to sound TOTALLY unbelievable but from less than 2.5 mg I was having insomnia, mild hallucinations and extreme heart palpitations.It seems I suddenly cant live with the stuff and cant live without the stuff. I just cant believe how quickly it has turned on me but now I fear I cannot even back off of it two milligrams without going into mild delerium.I still feel pretty normal and calm throughout most of the day but these odd thoughts and extreme withdrawals I cannot handle.

I guess my questions are..

-Has anyone else had such a hard time titrating off of such a miniscule amount?

-How long is it between a drop in dose that the body levels out, 3 days or so?

-Has anyone used something like neurontin to calm withdrawals while titrating off? I have heard that Lyrica helps a lot with baclofen withdrawal so theoretically I would think that neurontin would as well although its not as strong.

I cannot handle benzos as I can take just one of those and feel rebound anxiety afterwards for five days.Thats why I suspect Im having such a difficult time titrating off baclofen as Im just VERY sensitive to gaba-ergic withdrawal.


In my experience doctors do not help AT ALL and may even do more damage by yanking you off a medicine for which there are very few replacements for so I would much rather handle this on my own if I can. Sorry this has been so long but just wanted to see if any of you has any thoughts on this.Im well versed with withdrawals and have been through them all but this one seems like a beast and I am suddenly pretty terrified.

[TexasAg]

My buddy Baclofen might be turning on me

Hi Tru,

Sounds like you are extremely sensitive. I've been on Baclofen for about 9 months and titrated up to 160mg. I'm now at a maintenance dose of 80ish (I forget to take a pill here and there) but I have not experienced the type of sensitivity you have. I travel a lot and once did have a type of anxiety attack when I thought I hadn't packed my Baclofen. It hit me like a bull, couldn't breathe rapid heart, etc. Luckily I found them after a while. But I think mine was more me panicking. Does this sound like yours?

When I titrated down, I went down 20mg per week. In hindsight that was too fast, I'd probably do it 10 per week now, but not because of SE's but because I didn't need to find a maintenance dose that fast and wasn't ready (i.e. I binged again :upset

I only used a benzo when I was titrating up and got insomnia really bad. It was a very low dose prescribed by Dr. L and am happy to say that SE went away fairly quickly.

Sorry I can't be much help. But hopefully another Baclofentista can give more insight.

cheers!

[truvision]

My buddy Baclofen might be turning on me

Hey Tex, woa man I bet that panic attack you had on that plane was a BAD one. That's one of my worst fears is either losing my bac or a doctor that doesnt know the seriousness of bac withdrawal( which are most from what Ive found) somehow yanking me off if because they think for whatever reason that I just dont need it anymore. What a relief I bet it was for you when you found them!

How I soooo wish I was like you able to come down 20 mg in a short period of time, wow! Have you ever had anxiety at all? From what Ive heard people with anxiety are notoriously med sensitive. People without it tend to handle meds and withdrawal quite a bit better. I will concede that some of my panic attacks are precipitated by the fear of withdrawal only because of how bad many others have for me have been, but what I felt the other night was def the beginnings of something pretty bad for such a small dose reduction.

Because of my history of addiction I have actually had doctors assume that I had been taking way more of something than I said I was because med tapers have been so intense. Thats why I dont even like dealing with them; its too frustrating and it even makes me feel like not being so upfront with them when they are like that. Glad to hear its working for you though!

Thing is its still working to a degree so Im hoping maybe just maybe, I can get off a bit of it and the side effects will resolve. If they dont then I guess the next best thing for me will be to use it as needed for anxiety although I know it will not work as well that way. I hate to say this, but usually in the past when I start having problems with a med they dont resolve but just get worse.:upset:

[bleep]

My buddy Baclofen might be turning on me

Baclofen withdrawal only kicks in from 48 to 96 hours after you last take baclofen, so I don't think it was a reduction in baclofen that caused your anxiety. Just an unfortunate coincidence. Try it again, but don't panic, and be on the lookout for symptoms that aren't there, if you know what I mean.

I'm heading out for a few days, and won't be able to respond, but hopefully someone else will be around.

[truvision]

My buddy Baclofen might be turning on me

Im starting to think that some of what Ive been feeling has actually been from the bac itself as in body anxiety and restlessness seems to appear a couple hours after I take the pill. Ive been taking five milligrams at a time today and that seems to have leveled that out.I also noticed when I take it before bed now it has been having an opposite effect of wiring me up. Perhaps this is whats been happening and I was confusing that with withdrawal. Im going to also stop taking bac before bed. Bleep- your right Ill try not to work myself up any either and Ill report back tomorrow. (:

[Ne/Neva Eva]

My buddy Baclofen might be turning on me

Hi, Tru.

I have good news and bad news. The bad news first: Bac isn't really a first line anti-anxiety med. I'm not suggesting what it is exactly, because I couldn't begin to guess. What I'm suggesting is that if you're dealing with resolved alcohol addiction, and unresolved severe anxiety, low dose baclofen may not be the answer. At least not long term. Why? Well, I don't know.

What I do know is that baclofen treated something I call anxiety for lack of a better word. I didn't know I had it until it was gone. It took a lot of baclofen! And that was long before I quit drinking against my will. But in general, I have to treat my anxiety (for lack of that better word) in other ways. I use other medications, sometimes. But mostly I use other tools. When I don't use those tools, my mind gets on a carousel of negativity and fear. I don't think this is particular to alcoholics, much less to me. I think that it's the human condition. Some of us just have a lot more of it than others.

As bleep mentioned, 2.5mg in less than a day is unlikely to do anything physically. If you're already frightened of the result, and continue to be fearful about having to go off of bac, while not really sure you should be taking it, then 2.5mg might be way too much. Because anxiety and panic are not in your head. They affect every single cell in your body. Hormones go haywire, flight-or-fight kicks in and the next thing you know, your BP is up, your mind is racing and WHOA!

Ah, yes, I know it well.
So what can you do to manage your anxiety? Meds don't do it. At least not any that I've taken. (Albeit, that's not saying much. I'm no aficionado...Much too nervous to start popping pills. )
(Hmmm. Just so I'm not being a hypocrite I have to clarify a little bit. I actually think baclofen does it. It does for me. But I am NOT suggesting you go up on baclofen. It doesn't seem like that's a very reasonable or viable route. And even with lots of baclofen, I use other tools to stay off the carousel.)

Hang in there, Tru. And keep posting if you're comfortable doing that. It helped me a great deal.

[truvision]

My buddy Baclofen might be turning on me

Hey Ne, thanks again for the help. Yea Ive been on just about every other anxiety med on the block and actually came across the bac initially the way you guys did. I found this forum about ten years ago when I was battling alcohol addiction and asked my p doc for it.I didnt give it a good chance last time however, so I never really knew how well it could work for both.None of the other ones worked for me at all though, well I guess some of them numbed me out a bit by making me too tired to care but that was it.

Your so right, anxiety and panic may start in in our heads, but then it really does take on a life of its own!

You know I even have a AS in psychology, enough to know that meds are not the lifetime answer for anxiety but it seems no matter how many techniques I employ the anxiety, namely social anxiety, was still always there. Three weeks after starting Baclofen I had numerous people that had actually made fun of my anxiety comment that I had a "renewed confidence" and that "something had changed with me" (and they had no idea I had just started bac).Sad thing is, they were actually people that were in the helping profession (I was interning at a rehab facility).Those damn narcisists thought that they were somehow responsible for my boost in confidence when it was really the bac.:H

Hopefully I will be able to manage these side effects by coming down a bit more but even if I have to come off completely it has at least allowed me to see that it is okay to be confident when talking to people and that nothing bad happens when I am.I am able to see the difference in how people respond to me without constant fear as a companion. Now that I have had the fear temporarily removed and now see that ,hey nothing bad happens when you do this or that, its almost been a form of therapy in itself.

I think this temporary reprieve from anxiety has taught me just how irrational my thoughts have been. So in the end its been almost like a form of therapy in itself making it almost more than a chemical if you know what I mean.Anyways, sorry Im rambling... like I said, Im staying positive and gonna try to come down a bit tonight and check back in tomorrow.

[Ne/Neva Eva]

My buddy Baclofen might be turning on me

truvision;1490852 wrote:
I think this temporary reprieve from anxiety has taught me just how irrational my thoughts have been. So in the end its been almost like a form of therapy in itself making it almost more than a chemical if you know what I mean.

I can't tell you how strongly that resonates with me. That's the part of baclofen that I had no idea about, the part we generally call "anxiety" but isn't really. I had no idea it was there until it was gone. I assumed it was normal to live in that heightened state of...*sigh*... anxiety.

It's way past my bedtime, and I can barely think two words together, so I'll have to leave it at that. But I wanted to let you know that I understand and can completely relate. Thanks for posting.

[truvision]

My buddy Baclofen might be turning on me

Oh I am so pissed right now I just logged a whole update since Ive been up all night anyways, hit a key and lost it, thats the second time that has happened today! Oh well gotta laugh about it.Ne - that also kind of helps me to know that even you had that but didnt even realize it until it was removed. For me, my alcoholism was def caused by anxiety and not the other way around as Dr A has said.

Anyways, yea Im up waaay past my bedtime too but sure dont wanna be, looks like what Im feeling is withdrawal...insomnia, this odd head pressure beginning when I lay down i(ts really weird), very mild back spasms and tightness, restlessness and intense heart pounding. I know it says withdrawal only shows 20 or so hours later but I swear that this has been after only five hours, same as last time, and less than 2.5 mg dose reduction. I know that's sounds totally unbelievable and I wouldnt even believe it myself if I wasnt going through it (and I wasnt even worked up at all, I wasnt even thinking about it).As crazy as it might sound whatever it is, Im now for certain its from the reduction.

I think the reason why I might be having such a hard time is because this year I have tapered off of alot of other pretty heavy meds so my body is just not handling this one as well ( and it is very in tune to even the tiniest reduction).That is why I think my Im having such an uncharacteristically bad taper and not what is normally seen.

I actually just got off of neurontin not too long ago as well and might have to get back on that in the meantime while I taper down on the bac.

Could any of you tell me that have came down how long between a dose reduction that it takes before the body levels out?

Im wanting to know because that might help me to maybe white knuckle through this a little more and just go on and get through like a five mg reduction every 6 or so days because at this rate it will take me a month to taper down 10 mg. I took a couple neurontins and feel much better now at least.Thank goodness I have them.

[kronkcarr]

My buddy Baclofen might be turning on me

Hi, truvision,

I'm sorry I've been reading your posts and I'm sorry for what you're going through. The thought that comes to mind is that when I tapered down (even for 50 mgs to 40 mgs and 40 mgs to 30 mgs) I still got SEs. Would it help calm you a bit if you reframe your thinking from "withdrawal" to "side effect"?

I had/have the insomnia, the weird headache, back pain and my organs hurt. And my anxiety started to return. I increased my dose to 50 mgs and the SEs are gone.

I understand your sensitivity to drugs and tapering. And I'm sorry it's been so rough.

[truvision]

My buddy Baclofen might be turning on me

Hi Kronkcarr,thankyou so much for that heartfelt response. I think it just helps having people to talk to that know what your going through.Your right..thats some pretty darn good thinking there , Im so sick of the word "withdrawal" so sick of it ,as like I said this has been the year from hell as far as thats concerned. I think I will start reframing it that way and thinking of it as side effects.

So you have had that weird headache thing too? Now that SE is truly bizarre,I dont know if youve ever went to high altitudes before but to me it almost feels like when you are driving up a mountain and your ears start to pop and the pressure in your head increases. It seems to be worse when laying down.

Anyways, some good news is all those bad SE's I had last night have seemed to settle down pretty quickly. I had a rough night but I feel pretty good today. I think its the neurontin that really smoothed things out.

I wanted to tell you or anyone else that is having a hard time tapering or maybe even with SE's going up(not as sure about that one though) that if you keep having a hard time Neurontin is a miracle in helping to taper or come off of ANY medicine. Lyrica is a bit stronger and more habit forming but Neurontin isnt as much and is easier to get a prescription for. I think with the Neurontin I will be able to push through this much easier.

Im not pushing more meds or anything, but sometimes for people who are especially sensitive we need a little more help.My doc has had me on both, but it got to the point that I realized the bac was all I needed for anxiety. As for tapers off of meds though, neurontin is a life saver. I dont know why it works so well for that but if you ask anybody whos come off of anything they will tell you it makes things infinately easier.

So K how are you doing now?

[kronkcarr]

My buddy Baclofen might be turning on me

truvision,

I'm glad it's going better for you.

That headache is like a sinus/ice cream headache to me and usually it is at the base of my neck, but I've had it in my temples and in the middle of my forehead. I work with a lot of people who have MS and take, or have taken, bac for spasticity and that headache is reported frequently.

Thanks for asking about me. I was down to 30 mgs with no desire for alcohol, but anxiety started returning so I went up to 40 mgs. Then I had a person coming in who is really loud and never stops talking, and I kind of "catch" her mood so I took 10 extra mgs. I found that I feel alive, happy and motivated at 50 mgs, so that's my new dosage. So far no SEs.

I hope tonight's good for you.

[truvision]

My buddy Baclofen might be turning on me

Yea the headache thing is kind of like that too I guess, didnt even think of that analogy. I wonder what the science behind why we get that headache is? Thats pretty weird.So it sounds like for some people that they can taper down for a while and then go back up and the SE'S get better. Hmmm.. maybe that could happen for me too.

Thanks for bidding me well tonight. Im starting to think I can do this. Like I said, if it gets really bad I know Ive got neurontin and that in itself has helped to calm my mind down. Hopefully things will continue to be predictable though, if you know what I mean.
*****
I just wanted to post a quick update since last night woa K your right , its just like an ice cream headache. The nights are really rough but strangely and I swear this is SO strange, during the daytime I almost feel fine... almost REALLY good. Hey, Im not comlaining but now Im curious as to why this is.Its almost as if Im feeling a mild high along with the rest of the SE's. Could this perhaps be from a sudden increase in dopamine (ie since gaba supresses dopamine) once the gaba is slowly removed this causes a flood of dopamine to the brain causing a mild high? Has anyone else experienced this?