I hope you are slowly cutting the dosage of baclofen -- if you do it suddenly, you can really get into trouble.

Hello all. Ive finally found people who have some knowledge of the use of baclofen..I was put on oral baclofen last year for a muscle spasm in my face. i had an ear pain which then resulted in my face and tongue going into spasm..i have a history of tight muscles in my back and a torticollis and the ear pain caused everything to clench so was put on baclofen to relieve the spasm in my face. i was prescribed 30mg but on just taking 20mg my arms started burning so i reduced my dosage to 5mg to stop the burning. When i went to see my regular neurologist he just told me to come off baclofen cold turkey as it was only 5mg and that i would be fine.....well i wasnt:( I began violently retching three days later after only using baclofen for two weeks and eventually after two weeks they decided to reinstate and wean me off(I think 2 weeks was just too late)...When i was put back on the baclofen at 5mg someone opened the doors of hell and pushed me in.I came off again on the 1st August 2007 and suffered horrendously again for the first week.

I suffered from hallucinations, violent retching, a feeling of my intestines swinging from side to side ,extreme nausea like you would not imagine..you have to live it to believe it, menstrual bleeding for 40 ..yes 40 days!! muscle rigidness and spasms, sharp shooting nerve pains, retching, couldnt sit in the bath without the sensation on my skin making me heave woosiness, giddiness, a feeling of swinging from a hammock, thoughts of impending doom..basically i thought I was going to die and wrote a goodbye letter to my family, severe headaches, gastro intestinal problems and a loooong list of other withdrawal symptoms. I have been diagnosed with central nervous system malfunction caused by oral baclofen and the assumption that I should improve over time.

Anyway im actually looking for help here of someone who has experienced the same as me. At the moment Im 5 months off baclofen and still unable to work. My normal muscle tone has not returned and I get spasms of pain instead. i get a buzzing inside me and inner vibration.I am nauseus every morning and have an inner feeling of rotation. Doctors have been really unhelpful and have just let me get on with it. Im on half pay at the moment and in 4 months time im on nothing..This has been a tall price to pay for a muscle spasm...i went to the docs with 1 problem and got 30 back in return.


Is there anyone who is able to tell me why im still suffering and if i will eventually recover...please bear in mind that I am still rather frightened that i will be like this for life now. I know people on benzos take between 6 and 18 months to recover. Is it the same as baclofen. Im still going through so many problems including gastro-intestinal. i always have a window of well being after 6pm but the rest of the time is just spent dealing with my symptoms...i get all sorts of strange sensations inside me. The docs are trying to cover up. I was normal before this happened and working as a full time teacher. Now my life seems to be just dealing with symptoms and all because i took baclofen for just 2 weeks and came off just 5mg. Someone must have experienced something similar even if its for a short amount of time. Im 5 months off taking baclofen. please help.

Sandy, Wow... This sounds just terrible! I'm so sorry!

I have been on baclofen in varying doses. The pills I have are 10 mg. I never take more than 1 at a time, but some periods I have taken up to 4 pills in a day and there have been periods up to a week that I haven't taken any (that was a nice stretch :).) I find it's a prn kind of drug for me and my PM agrees with how I've been using it. I have not had any kind of reaction like this. If anything, it does make me sleepy, so I don't take it during the day if I can make it without. I'm really wondering if you have something else going on. Are you able to seek another opinion? My understanding of baclofen is that you have to be careful if you've been on it consistently and then suddenly stop, but it isn't such a strong medication as valium or flexeril, even. Hmmm...

Please keep posting. I'm really, really concerned about you!
- Margaret

hello Margaret and thankyou for answering my post. The neurologist has thoroughly checked me out...infact two of them. Ive been to hospital three times and had lots of tests done brain scan, spinal scan, blood tests three times, abdominal scan, chest x-ray and because my symptoms come and go and some have stopped since I first came off they say I was just very sensitive to the drug. If it was permanent some of my symptoms would not have reduced. I have similar withdrawal symptoms to benzo users. I found an article written by a professor in America who talks about baclofen withdrawal syndrome and that it does happen and that people can suffer from delirium which is what I had...my hallucinations have stopped now and I stopped retching 8 weeks ago:) so thats how they know its not permanent.

I have written to the proffesor in america 2 days ago and will wait for his reply. On a good note..last night I had a window of clarity and almost normality except for muscle tone from 5pm til I went to bed and have been told by the benzo group thats a good sign of recovery. If you know anyone else who takes baclofen can you please pass the word around and ask for any other withdrawal symptoms other than drowsiness ie hallucinations? or even a foul taste in the mouth?

Are you on any other medication other than baclofen which goes through the central nervous system? That may be a reason why you havent suffered Like I did.

All I can do is wait for those windows of clarity to get longer..Do You have any GI issues with Baclofen or change in menstrual cycle(Sorry for asking personal questions)

Thankyou for your concern. I will continue posting to you so at least I get to chat to another Baclofen user.

Thanks and God bless sandy.xxx

Sandy,

It sure sounds like you're doing your homework, which is great. The other meds I'm on are: Topamax 150 mg., a birth control pill called Necon, and in the meantime, I've been trial-testing reflux medications. I take pain killers prn. I just discontinued Cymbalta in the last few weeks. I did not have the symptoms you reported. I don't know of other people taking baclofen, so I can't offer you other insights. This is just scary! I'm hoping you're on a tapering schedule that is monitored by doctors?

I haven't experienced any menstrual problems, but that may be because of the BCP. I always have minor digestive problems - they haven't changed on baclofen. Oh, I just cringe for you...

I really hope your medical team is helping you through this. What a devastating blow on top of everything else! I hope you can keep you mental strength up and fight your way through it. Please let us know how you're doing - good or bad. I'm having surgery Friday, so if I don't post for a while, that's why. It's not that I don't care. ;)

Best,
Margaret