Hi I am slowly coming of my baclofen I was on a very high dose 30mg 3 times aday to now 5 mg twice aday I've done it very slowly over along time ,this week I've cut out the lunch time one so it's just morning and night , I do suffer with spasticity badly but hate this drug so bad ,my memory ,tiredness so I decided to try it , I was wondering has anyone else done this and how did cope after you where completely off .. Thanks mimm 😊
It was some time since I came off mine and have just learned to cope with them. It seems to happen most after increasing my activities ( I find it hard to accept my limitations ) I do soak in an Epsom salt bath when it is at its worst and this does help.
It was some time since I came off mine and have just learned to cope with them. It seems to happen most after increasing my activities ( I find it hard to accept my limitations ) I do soak in an Epsom salt bath when it is at its worst and this does help.
Hi Did you feel better coming off them , Mine also increase the more I do ,but I want to see how I feel off them , Also everything I've read about the drug is awful ,even though it does totally help some people ,
yes I do feel better because the baclofen can also cause further stiffness in the limbs which was happening to my legs. I have had ces twice and in the first disc which was then fused and have had a second fusion two years ago. As I am 60 yrs old now I have the added problems of degeneration in most of my spine. What I have noticed since trapping the nerves in my neck I am also having these cramps in my upper limbs and abdominally too but I cope by using massage and use the pain as a warning that I am doing too much. I think of the pain as a signal and I feel that medication causes its own effects and often masks important symptoms. Another factor to set the cramps off is allowing my legs to get cold. do hope this helps you but only you will know what suits you and your needs. Good luck xx
yes I do feel better because the baclofen can also cause further stiffness in the limbs which was happening to my legs. I have had ces twice and in the first disc which was then fused and have had a second fusion two years ago. As I am 60 yrs old now I have the added problems of degeneration in most of my spine. What I have noticed since trapping the nerves in my neck I am also having these cramps in my upper limbs and abdominally too but I cope by using massage and use the pain as a warning that I am doing too much. I think of the pain as a signal and I feel that medication causes its own effects and often masks important symptoms. Another factor to set the cramps off is allowing my legs to get cold. do hope this helps you but only you will know what suits you and your needs. Good luck xx
Thank you so much for the reply , Yes it's all about noticing new things that can help ,I all ready notice the benefits already next Monday I will reduce again then it's just 5 mg to go .. Cold sets me off too ,and the usual ladies cramps ,so have heat packs for both , really appreciate reading that makes me feel better , and you don't know unless you try !! Thanks mimm 😊 xx
You are welcome mimm,I do hope all goes well. Seems like we are on a learning journey since our injury first happend and it is so good to have help from others along the way. Take care.
When I came off Baclofen I started smoking cannabis. Just a small amount a week will reduce spasms considerably and it's so much less harmful than the prescription drugs.
on a very high dose 30mg 3 times aday to now 5 mg twice aday
I am on 40mg 4 times a day and have been for many years. I tried the baclofen pump, but I don't have enough spinal fluid to make it work properly (big, painful story). I am trying to go down after I get my permanent standing frame. While i did the trial with physical therapy, my spasticity and nerve pain became almost non-existent which was so awesome!
on a very high dose 30mg 3 times aday to now 5 mg twice aday
I am on 40mg 4 times a day and have been for many years. I tried the baclofen pump, but I don't have enough spinal fluid to make it work properly (big, painful story). I am trying to go down after I get my permanent standing frame. While i did the trial with physical therapy, my spasticity and nerve pain became almost non-existent which was so awesome!
Hi Josh That's a high dose as well ,glad you felt great on the trial ,wishing you the best to get on Ur standing frame ,and good luck coming off the medication ,let me know how Ur getting on with Ur standing Mimm x
Did the same, albeit not slowly (big mistake), for much the same reasons as you. I couldn't stand having a mushy head. Glad I'm off of it...
Hi ray Yes the mushy head awful ,it's been 2 weeks now and I'm not on it ,feels great feel more awake ,I'm constantly drinking water to keep rehydrated and just see how it goes ,the nerve pain I suffer is bad I do take pain relief for that but I try and see it through,in a strange way I feel the spacticity is slightly better since being off it ?? How do you cope with urs ? Mimm x
Did the same, albeit not slowly (big mistake), for much the same reasons as you. I couldn't stand having a mushy head. Glad I'm off of it...
Hi ray Yes the mushy head awful ,it's been 2 weeks now and I'm not on it ,feels great feel more awake ,I'm constantly drinking water to keep rehydrated and just see how it goes ,the nerve pain I suffer is bad I do take pain relief for that but I try and see it through,in a strange way I feel the spacticity is slightly better since being off it ?? How do you cope with urs ? Mimm x
Hi Mimm x,
Mostly I just endure it. I often take 200mg of Ibuprofen before bed as it helps with those aches of sinking onto the bones. Nerve pain is highly variable and most of the time I can tolerate it. For unknown reasons, and 12 years in, the past two months have been worse than normal. The doc gave me the option of part time / on demand Neurotin & Baclofen. I turned that down...
Hi ray Can't believe the difference of being of the baclofen , maybe it effects some people worse ,it didn't agree with me , I also take ibuprofen and yes at night when I try to sleep the nerve pain hell,that's the one thing I miss since this happend to me , being able to go to bed and sleep a straight through night ,I'm lucky to sleep an hour here and there ,that's my next goal !! Try and sort out the sleep lol So I'm just going to try and deal with the spacticity and take it day by day .. Thanks for replying Mimm x