Vile side effects but really want to plough on. Any advice?

[mycall]

OK, for about the third, maybe forth time over the last few years - I'm trying to use Baclofen to control my cravings.

I'm a bit of a light weight, and at only 50mg (my highest to date!) and having only been on it for around 3 weeks, I am suffering some pretty intolerable side effects.

They are as follows:

Drowsiness - particularly at around 3pm, pretty much wherever I am. It's like a spell has been cast!
Insomnia - Ironic given the first effect - but get a rubbish night's sleep, then wake around 4.30 unable to get back to sleep
Sore eyes - could be due to insomnia, but painful and irritating
Clenching teeth and hunching shoulders
Painful joints
Feeling like a zombie - so spaced out!
Bit mentally impaired - memory, ability to concentrate, fuzzy head etc

I am still drinking around a bottle of wine a night, which I know is stupid, but if I could quit drinking on my own I wouldn't have started with the Baclofen.

So my question to you good people is, should I continue in the hope that the side effects will improve, and is it likely that the side effects will get a lot worse as i titrate up?

The effects of too much alcohol are pretty hardcore on their own, but with bac in the mix, I'm not sure I can handle it

Thanks in advance

[Ne/Neva Eva]

The side effects for me were really horrible until I got to about 90mg of baclofen. I have no idea why. I'm pretty sure I'm an exception not the rule, though, so your experience may not be the same.

I would say going down and then going up more slowly would probably be the wise thing to do. I was never smart about my own titration, though, and just plowed through. I don't recommend it, but I did it. It sucked but it worked.

Also, I know now that there are some other medications that when used in combination can help with the side effects. They can be pretty intimidating, but they work. I highly recommend you talk to a doctor about it, though, rather than do it on your own, even if the doctor doesn't know about your use of baclofen. Atypical anti-psychotics like Abilify (or something similar) help tremendously with sleep, which should help with the somnolence, too. I'm on what my psychiatrist calls "a holistic dose" which is the smallest amount one can take and is really used in conjunction with antidepressants to help with their effects and not as an anti-psychotic. (I'm not psychotic. I just got very depressed and found that the Abilify has helped enormously with sleep and other SEs I associate with titrating up on baclofen. I'm not the only one. There have been many, many accounts of people taking it or something in the same class and those people rarely have SEs.)

You could also combine it with naltrexone, as I've heard that might help to cut down on the drinking more quickly, which will help a great deal with the SEs. They're (obviously) much worse when combined with booze. But I hear ya'. I couldn't stop either.

Good luck and hang in there no matter what you decide.

[Otter]

I agree with Ne that you should reduce your dosage.

The French doctors who specialize in treatment with baclofen advise to take the dosage down and to spread it out through the day and night to such an extent that you have no side effects from it. This might mean, for instance, taking only a quarter of a pill a few times a day. If you feel absolutely no side effects from it, then increase it, but only a tiny amount, for instance, another quarter of a pill at another time of the day so instead of four doses through the day, you take five.

I read a lot of the posts on the French forums and they really concentrated on this aspect of taking baclofen. They all went on about being patient and going up very , very slowly and spreading it out through the day as evenly as you possibly can.

[mycall]

Oh that's great advice - thank you both so much. Will look to maybe going back to 40, then 30 if nec - I'm just so impatient to ditch the booze!!

The most unbearable one, and which affects my entire day, is the insomnia. Will definitely look into getting some help with that.
My doctor knows I'm on Baclofen - but has no idea how much and the real reason why (I told him I needed it for restless legs) so I can be upfront when I tell him about other medication.
I have looked at getting Naltrexone but it is so expensive from River - and I don't want to come clean to my doctor at this stage

Anyway, thanks again, much appreciated

[Otter]

My wife took Zopiclone to sleep. She also found that after taking baclofen for a few years with many relapses but a much improved life, she really got on top of the drink when she took Mirtazapine as well as baclofen. She also took a lot of vitamins as per Seven Weeks to Sobriety by Joan Larson. If you have the time, that is a very good book to read to get a good understanding of the many ways alcohol damage the body and how you can repair that damage by replacing all the vitamins and minerals that alcohol depletes, or that you don't get if you are using alcohol as a food instead of...food.

[Otter]

I think, looking back, the one thing that we really lacked from the start was support from people who understood my wife's condition. We got hold of baclofen for stroke at low dose. When we finally found Dr. Chick to get a higher dose, my wife had been on baclofen for a year but was constantly relapsing. However, the reduction in drinking made her look like a normal person with a drink problem so he only agreed to go up to 100 mg a day and told her to go to AA.

It was catch 22. That's the problem with baclofen therapy. There are virtually zero doctors who understand it. If there were, then we would have a hugely different situation, like in France, where tens of thousands of people take baclofen under medical supervision of doctors who actually understand how to prescribe.

Ultimately, what worked was that I went into a very good and very kind doctor and asked him to take the treatment seriously and he did. He said that he would come to our house whenever I called and he would just get up and drive to our house at a moment's notice. He changed the dosages, added Valium for extra anxiety relief, added Mirtazapine, and just kept pluggin away until it all came together.

You just don't get doctors like that. For me, that is the big problem now. There are so few doctors prescribing, so few who understand and are able or willing to roll their shirt sleeves up and make the effort. What they need to understand is that if you do focus on the issues, like lack of sleep and depression and read the material on new anti-depressants and combine with other anxiety drugs, you can get on top of an alcoholic condition fairly quickly rather than trying one drug and waiting for the patient to come back a few months down the road, or not.

[nicnak68]

The thing is otter,your wife didn't work so could take Baclofen and just work through the side effects at home.
I found that it was changing my personality and I could barely function.My husband looks back now and says he didn't know me and was really worried about me and my mental health.
Don't get me wrong,I think Baclofen is amazing and if I didn't have to work I would try it again in a shot.But the lack of sleep and all the other side effects made my life hell

[Otter]

I think the issue with baclofen, as you point out, is that the side effects have to be weighed against the benefits in the particular circumstances.

You make a good point. You work. You post here. My wife was jumping off cliffs and wandering out into the sea fifty miles from home in the middle of the night. She became dangerously psychotic from alcohol abuse and hadn't worked for many years. She was extremely ill.

I had a client who had a serious alcohol problem and kept getting arrested for assaulting police officers who showed up to where he was drinking. I told him to use Marijuana instead. It worked in reducing his drinking. It's not a cure though.

Why I get upset here is that this forum has been hijacked for quite some time by SF who has made a concerted effort to downplay the significance of baclofen and he uses arguments about drugs like Nal to try to discourage baclofen use or interest in it. I want to make it clear what these drugs do, how they work and for WHOM they work.


You are right that my wife wasn't working. That is because her alcoholism was full blown and the side effects of baclofen were nothing in comparison to the effect alcohol had. It's not a fair analysis to say that baclofen isn't what it is cracked up to be or Ameisen was wrong because of the SE's. It's positively damaging to many people looking for help, however, many people who come here would, like you , find the side effects of baclofen too limiting because they are still working, which means that the "side effects" of drinking are not so serious, ie., you haven't lost your job, your marriage etc.

Sorry if I sound as though I am being critical of you but I have had a long, long history of antagonism on this forum with people who write off baclofen, say it is just like any other drug that "works" for a particular person, nothing special. It kinda gets my goat.

[dundrinkn]

I have had some pretty miserable side effects. Some still persists (leg pain). I did and do tweak my dose. Going up or down can help. But in your case, mycall, I would go down. I also think that vitamins could help -- even a good multi. I've also had some great results recently with Adrenal support. It will help lower your cortisol levels and sleep better. Worth a try.

[mycall]

You were very lucky Otter - I'm so glad your wife managed to find the right help.

Like nicnak, I have to work - I teach 13 - 16 year olds who literally sniff out mental irregularities and will quite happily take full advantage of the situation!! I really can't afford to be walking around in a fog, or falling asleep at my desk. Can you imagine what I would wake up to?
I forgot to mention another symptom that has got me quite worried - I have had times during the night when I feel as though I'm suffocating. It's disturbing to say the least.

I'm hoping that if I take it a bit more steady, I can alleviate some of these symptoms

Thanks again to you all

[mycall]

I have had the leg pain too - ironic really given that I conned my doctor into giving me baclofen in the first place to help with restless legs and cramps!
Will give the vits a go

[Mom21961]

Baclofen works

mycall,

You've gotten great advice here. I did want to let you know that I also struggled with terrible side effects. I had to spread my dose out over five smaller doses throughout the day. I also had to increase very slowly when I got to a certain level. I just wanted to let you know though that it was SO WORTH IT! Baclofen was a miracle for me. Side effects have virtually gone now that I've been at the same dose for a couple of months and AF. Still a bit of somnolence, but it's getting much better.

Good luck to you! :thumbsup:

[Baclofenman]

mycall,

You've gotten great advice here. I did want to let you know that I also struggled with terrible side effects. I had to spread my dose out over five smaller doses throughout the day. I also had to increase very slowly when I got to a certain level. I just wanted to let you know though that it was SO WORTH IT! Baclofen was a miracle for me. Side effects have virtually gone now that I've been at the same dose for a couple of months and AF. Still a bit of somnolence, but it's getting much better.

Good luck to you! :thumbsup:

Well said Mom

I had some minor side effect titrating to 150mg a day - Then after a couple of months nothing - I have dereased to 100mg a day and apart from a few old injuries coming back into my mind there is nothing at all for me to worry about

That said Baclofen consumption IMO is a very individual thing, which I guess is why some people choose to keep their records to themselves - Slowly is definately the key

I lost a bit of interest in AL early (30/60mg a day) so I did not drink through most of my titration - I wonder if the SE would have been different if I had

Regards


Bacman

[mycall]

That is such a positive post Mom - thank you for that, I feel ready to recommence the battle!
To be AF would be just amazing. I lowered the dose yesterday to 40, had around half of my usual alcohol intake last night (two glasses - albeit big ones - of wine) and took an OTC sleeping pill
Feel good this morning - so think I'll try to follow your example if I can Bacman.
Thanks for the support

[Baclofenman]

Feel good this morning - so think I'll try to follow your example if I can Bacman.

What I did not say above was that I actually decreased to 75mg a day which I felt was not enough - Whilst I was not thinking alcohol alcohol alcohol - I did feel vunerable - Its hard to put to paper the feeling, it just did not feel right - Im not sure by waffling on about not feeling right (and now having rectified this) I will add anything to the thread so I will leave it at that



Regards


Bacman