Baclofen withdrawal syndrome

[sandy222]

Hello, I came off a muscle relaxant called baclofen last year and am still suffering from withdrawals despite a reinstatement..It has done a similar thing to me as coming off a benzo. Is there anyone who has taken this drug or has had to be weaned off it and had any withdrawal symptoms at all. i cant find anyone who has suffered like me. I have found info that says that abrupt withdrawal leads to horrible side effcets(been ther done that) but they are still lingering. I have had alot of support from a benzo group who say my symptoms will reduce which they have but Im still suffering from some lingering ones and I am afraid. Please respond here or email me

 

Even the smallest bit of experience will help. Thankyou

Edited 10 Jan 2008, 5:06 pm by Marina

[Marina]

Hi Sandy and welcome to our forum

 

Yes, I was on Baclofen - 10mg 3 times a day - and I was weaned off it over just one week (or maybe it was two, I don't remember I'm afraid). I had no withdrawal symptoms at all...

 

I'm sorry if I'm not of much help to you in this...

[sandy222]

Hi marina, thankyou for your post. were you on any other medication when you were weaned off it? I wasnt weaned off at all

 

The reason i ask is sometimes another medication can stop you from going into withdrawal if it acton the central nervous system..one more question (sorry)

 

Can you recall..did your normal muscle rigidity/spacticity return after you came off it. Was it gradual or sudden? i had a total of 30 withdrawal symptoms and got taken to hospital on 3 occasions, once in an ambulance.

 

I was only on 5mg when I was taken off. My intestines are still not working properly

 

Thanks for your support. will keep posting

[Aldo]

hi i was on baclofen 10mg as well started on 2 a day then 3 then6 day, in total for 35 days, no major problems while on them but some of the side effects. did how ever have a few bad days after stopping them, soon cleared tho!

[Marina]

Sandy, I hope you won't mind but I deleted your other topic in the "Introduce yourself" section as it was basically the same as this one and I thought it best not to have it as two separate topics in two different areas

 

The only other med I was (and still am) on was LDN. In fact, I came off the Baclofen as it was adding to my fatigue and it also seemed to weaken my muscles quite a bit, which in turn has possibly been the cause of my muscles wasting as well. We felt that the LDN was now helping the spasms and painful muscles instead. There shouldn't be any interaction between LDN and Baclofen at all. I also take the occasional Lorazepam for muscle spasms too, and had no problem with that and weaning off the Baclofen either.

 

As for my muscles, I suspect there's been a very slight return of the rigidity (and pain I can get sometimes get in my calves, especially mornings), but it's nowhere as bad as it was when I was first given Baclofen (two years before LDN).

 

5mg is a very low dose. It certainly does seem as if you're reacted most unusually to having come off it. How awful for you... I haven't so far heard of anybody else having had any degree of withdrawal symptoms although it doesn't mean it can't happen.

 

How long ago did you stop taking it? What does your doctor or neuro say about it?

[Shirl]

Hi, I've been on lowest dose of Baclofen for many years. That's 1/2 a tablet 3x a day. Yes, they don't actually make the lowest dose tablet as such! No other gripes with it except to say was thinking to ask GP or Neuro if I could increase it as wondering if effectiveness dwindling or I'm just used to this dose.

 

ANYONE withdrawing from any drug has my utter sympathy. I had to come off Atenolol (beta blocker) at the beginning of last year and felt very unwell with scary symptoms.

 

However, I cannot add much to the original question here, sorry.

[sandy222]

Thanks for everyones responses. In some ways Im pleased because it should mean that in time I should heal.

 

Question for Aldo..what did the few bad days consist of? Sorry to ask for details but it is important for me to understand what has happened and why and any similarity, be it small.

 

 

Marina-I came off it on August 1st 2007 after a very bad renstatement and a gradual reduction of the drug for the second time..Its really messed me up and am a bit afraid that I could be like this forever and never get my life back.

 

My neuro and doc all say I had a bad reaction to the drug and are not sure what to say except given that baclofen has been around a while..its very rare to have this reaction so I should recover.

 

Ive had so many tests done to clear everything else and Im fully fit in other ways.But Im starting to notice other health issues now as a result of the withdrawal and am worried that my health is now being compromised as a result of taking this drug. it has messed up my whole body and it will take years to recover if at all.

I get a feeling of the wheel of a steam train moving inside me every day and nausea on one half of my torso only. Other symptoms seemed to have calmed down. hope they dont return now.

 

Im feeling quite upset today. I feel Im the only one out there and that this is never going to go nd I will be stuck like this. No one has been able to give me any proper answers..its all guess work. I have written to a proffessor in America who has written about baclofen Withdrawal syndrome and am waiting for his response.

 

My original muscle tone has not returned and my intestines havent started working properly again so have GI problems. If anyone else can relate to any of this please post. please also ask around for me for anyone who may have suffered fom this withdrawal or the withdrawal of any other muscle relaxant and did they eventually recover from their symptoms?? many thanks to you all. xxx

[Aldo]

as you asked..

Main thing were,

problems sleeping and genral feeling tired thro out the day. nightmares,feeling low about things. mind you air caution here pls i had a bit of a cold and me and partner were not getting on to well at this point in time, mind you after reading the baclofen sheet in the boxes i put 2+2 togeather, now if that makes4 or 5 who knows, whatever it was it passed within a few days.

 

TBH baclofen did naff all for me apart from stop me having a drink over xmas holidays, yes the tremmors stopped but they come back.

[sandy222]

Thanks Aldo..the more i ask the worse it gets..no one has suffered with the physical side except me..the psychatric side ie hallucinations etc have stopped.

 

My current symptoms are a feeling of inner rotation..like someone has put the wheel of a steam train inside me and a feeling of one sided nausea on my torso..I have it all day until about 6pm then it goes...I too had the nightmares but they have gone..Did you or anyone get additional muscle spasms of any kind or stiffness of the neck or shoulders. Does it ring a bell with anyone at all or gastro problems..Im so scared this is going to be permanent with me and I will be put down as that very rare case.

 

Is there anyone that I could write to and ask for help other than the drug company on whether I could be permanently damaged?

 

Sorry to vent people..Im so frightened at the moment and feel very alone. There doesnt seem to be anyone to share with.

[Aldo]

Sandy sounds as if you are having real issues, Id go and see the person who put you on them. It kind off remindes me when I was on diazipam and tramadol for 2 prolapsed dics almost 12 months had problems when i stopped, as i say i was only on baclofen for 35 days

 

sorry to hear you are suffering sorry i cant help more

[Marina]

My original muscle tone has not returned

Nor has mine... and I came off Baclofen in August or July last year, which is one of the 2 reasons I came off it, as I've lost what seems like all muscle tone and what was already an almost non-existent bum has turned into a totally non-existent one... My legs looks like pins too. I had thought it was due to lack of exercise because of my other pains, but now you've got me wondering if I'll ever recover muscle tone and if it's due to the Baclofen...

[Shirl]

The reason I was put on Baclofen, Marina, was for dire pain in my limbs and that has been controlled. I tired to stop taking it - small dose, no problems withdrawing - but the pain returned quickly so I now take it without any thoughts of ceasing.

 

My limbs could never be described as pins - pines, maybe - as in tree trunks. I am still reasonably active around the home but cannot walk outdoors.

 

I think all our drugs will affect us all in different ways - we have to weigh up the pros and cons and go with the best case scenario. I just cannot live with pain so have accepted the dosage box as part of life.

[sandy222]

Thankyou for all your responses. I will keep searching for answers..its all I can do now. I was thinking of writing to a scientist who would have more knowledge of gaba receptors, what the drug has done to the muscles and whether normal muscle tone will return. Ive got what seems like rebound spacticity instead ie aches and pains in other areas and stiffness of joints etc in other parts of me that I never had before and the aches and pains that I used to have ,, have not returned. I also have gastro intestinal issues where the baclofen has affected my intestines working...??

[sandy222]

Also, actually some of your posts are giving me some hope...some problems have gone ie

The below symptoms seem to have come and gone:

violent retching, severe nausea..you have to experience it to believe it, vibrations inside my body, a feeling of swinging on a hammock, a feeling of movement even though Im sitting still, prickly itchy skin, an inner feeling of burning, sever menstrual bleeding, thoughts of impending doom, touch sensitive skin..if you touched any past of my body I would violently retch, swimming and crawling senstaions throughout my entire body, tinnatus, nightmares...and a few more that I cant remember now

 

I now get rebound spacticity effects, tingling sensations, cold feet,poor muscle tone persistent strange dreams, jaw clenching and a feeling of not being able to control my jaw and inner feeling of movement (Horrible), constipation with diaorrea, stool discolouration, malabsorption,mild nausea,dry mouth, changes in urine colour from cloudy to clear

 

Anyone developed problems with their kidneys while on baclofen???

 

Do any of these ring a bell with anyone?

 

I can see from my own list that somethings are improving and my cns seems to be calming down and hopefully I will post here that I have made a recovery over the next year.

 

Has anyone just come off a small dosage cold tukey and even experienced one or two problems as Ive described above even if it was for a short period. Any info appreciated. Has anyone hit tolerance with baclofen and experienced any of these? Many Thanks