Alternative to baclofen?

[SunnyCJ]

I am wondering if anyone takes anything for their spasms besides baclofen (other than Zanaflex)? Also, has anyone gotten abdominal pain from taking baclofen, specifically a cold, burning sensation?

I recently found out that baclofen has been the cause of my severe cold burning sensation in my abdomen and back for 12 years. I found out from being almost overdosed on baclofen. I got a baclofen pump several months ago to manage spasticity and in hopes of relieving the burning pain in my butt, legs, abdomen, and back. I have been slowly increasing the dosage once a week for the past three months. This past Monday, I had the pump refilled and went up to what I felt was going to be the last increase of 400 µg. Almost 2 days later, I woke up with the same severe, cold burning pain all the way up my chest, throat, face, and head and my usual pain in my abdomen and back was even worse. What had ended up happening, was the idiot doctor who refilled the pump did not realize the new vial of baclofen was a higher concentration of what was in my pump, so when he added the new medication, he did not change the pump and I ended up getting twice that amount of baclofen I thought I was getting (800 µg). I ended up in the ER because of the severity of the pain and was told by the ER doctor that baclofen was definitely causing the pain and that he did not prescribe it himself because of its life-threatening side effects. I was surprised to say the least, but relieved.

So the idiot doctor practically killed me, but the good thing is, I figured out that this horrible burning pain I have been suffering from for years is actually from baclofen. Every time I increased the intrathecal baclofen, I noticed the burning pain got a little worse in my gut and back. I had been telling doctors for years that baclofen could be a possible cause to the burning in my abdomen because it started right after I started it, three months after my injury. I didn't have any pain when I was first injured. But because burning pain is not atypical side effect of baclofen, every doctor shrugged it off. I did try Zanaflex years ago to try and replace the baclofen, but got bad heart palpitations and had to go off of it as well. I don't know if it's that they are similar medications or what, but I obviously don't react well to them.

So now I am going to decrease off of the intrathecal baclofen and add some pain medication for my other pain to the pump (and pray the cold burning pain goes away completely), but am concerned about my spasms without any medication.

Any feedback or similar stories would be helpful!

CJ

[razzle51]

I was on Bacoflen for a short time and didnt do a thing for me. I am now on Flexerill 10 mg 3 x day. Doing better but not 100%.

[Wise Young]

CJ, thank you very much for posting this. This is very useful information. Wise.

I am wondering if anyone takes anything for their spasms besides baclofen (other than Zanaflex)? Also, has anyone gotten abdominal pain from taking baclofen, specifically a cold, burning sensation?

I recently found out that baclofen has been the cause of my severe cold burning sensation in my abdomen and back for 12 years. I found out from being almost overdosed on baclofen. I got a baclofen pump several months ago to manage spasticity and in hopes of relieving the burning pain in my butt, legs, abdomen, and back. I have been slowly increasing the dosage once a week for the past three months. This past Monday, I had the pump refilled and went up to what I felt was going to be the last increase of 400 µg. Almost 2 days later, I woke up with the same severe, cold burning pain all the way up my chest, throat, face, and head and my usual pain in my abdomen and back was even worse. What had ended up happening, was the idiot doctor who refilled the pump did not realize the new vial of baclofen was a higher concentration of what was in my pump, so when he added the new medication, he did not change the pump and I ended up getting twice that amount of baclofen I thought I was getting (800 µg). I ended up in the ER because of the severity of the pain and was told by the ER doctor that baclofen was definitely causing the pain and that he did not prescribe it himself because of its life-threatening side effects. I was surprised to say the least, but relieved.

So the idiot doctor practically killed me, but the good thing is, I figured out that this horrible burning pain I have been suffering from for years is actually from baclofen. Every time I increased the intrathecal baclofen, I noticed the burning pain got a little worse in my gut and back. I had been telling doctors for years that baclofen could be a possible cause to the burning in my abdomen because it started right after I started it, three months after my injury. I didn't have any pain when I was first injured. But because burning pain is not atypical side effect of baclofen, every doctor shrugged it off. I did try Zanaflex years ago to try and replace the baclofen, but got bad heart palpitations and had to go off of it as well. I don't know if it's that they are similar medications or what, but I obviously don't react well to them.

So now I am going to decrease off of the intrathecal baclofen and add some pain medication for my other pain to the pump (and pray the cold burning pain goes away completely), but am concerned about my spasms without any medication.

Any feedback or similar stories would be helpful!

CJ

[anty]

I was going to have the baclofen pump put in but my nerosurgeon said it was not for me. I am on keppra-1000mg-baclofen20mg-4 times a day-clonacepan 0.5mg 4 times a day. These meds seem to work for me i had very bad spasms at night now my legs stay still. I hope this is helpful.

[razzle51]

are there any side effects with Keppra , well what I mean is any that really need watching ? The Requip is just not working , going back to dr. tomorrwo. thanks

[anty]

I have had no side affects from keppra. But everyone is different. With any meds you have to be careful.

[Lewis]

Have they ever tried decreasing the medication? At first, I believe I benefited from baclofen. But as time slipped past I felt that it was not working as well as it had previously. The severity and frequency of my spasms decreased when I came off of baclofen and I have gone several years without the need to medicate my spasms. Range of motion exercises and weight shifts can go a long way. For me, there is a direct correlation between spasms and not perform in range of motion exercises and weight shifts religiously.

I think today's doctors prescribe medication to easily and when it doesn't work, they up the dose. Just my take.

[painlessjoe]

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Goof Luck

Joe
Special Massage Therapist

[trainman]

I can't feel below the neck, so I don't know about the pain, but I agree with doctors and baclofen. I started on it 7 years ago and am now up to 80mg per day. I never noticed a real difference when increasing the dose and still have spasms. Now the doc wants to do a pump, no way I'll let him.

I agree to range of motion/exercises, it helps the best of anything.

[razzle51]

Hey Trainman se you are from Iowa , where abouts??? I am in Lawton just outside Sioux city.

[trainman]

Hey Trainman se you are from Iowa , where abouts??? I am in Lawton just outside Sioux city.

I'm down south east of Des Moines in Pella.

[razzle51]

I know where Des Moines is hubby brother lives there. and I know about Pella but never been there. Do you have trains ? do you know where Lawton is ?

[Stormy]

Back to the topic..

I am prescribed Marinol (The active ingredient found in Marijuana) instead of Baclofen for muscle spasticity and neuropathic pain. It works like a charm. It is a legal drug in the use with a prescription.

I highly suggest that if Baclofen does not work for you, to give Marinol a try. I guaruntee you won't regret it.

[Mike C]

I was about to suggest the same as Stormy. Weed, and it´s artificial clones for the most part work wonders against spasticity.

[QuadPro]

Yes thanks cj for your input. I do remember when I was in the hospital my burning pain started around the same days they started giving me baclofen. Funny thing is they started to give it to me before I even started having any spasms. Im gonna try getting of baclofen completely to see if my pain decreases. Looks more and more like im just gonna smoke the good herb for spasms and for pain too.

I will report back if I get any good results.

[SunnyCJ]

Thanks Stormy for the suggestion. I'm curious if your insurance pays for your Marinol prescription? I have Medicare and Medi-Cal and will soon have a new Medicare prescription drug plan and was wondering if they would cover this medication even with it being legal. It sounds like it might be a good replacement for baclofen.

CJ

[MZack]

WOW!!! I've had a chronic lower abdominal/lower back pain for several years and have tried everything to locate the cause. After seeing several doctors and having a bunch of tests I gave up the search for answers. I even thought it might be weight-related so I dropped at least 40 lbs. Felt better generally but it didn't do a thing for the abdominal/back pain.

I take 80 mg of baclofen/day so I wonder if that could be the cause. Hmmm... Problem is I drive a lot and w/o managing my spasms I'm a menace on the road.

MZ

[QuadPro]

Well for the past week I cut my baclofen dosage to half the amount and I must admit I feel less pain....the pain feels less intense. I want to try to fully eliminate the baclofen to see if I feel even less pain.

But I got to take something to reduce the spasms so I think smoking herb would take care of that.

[razzle51]

I was on Bacoflen didnt do squat . So dr. gave me the ole Flexerill . 10 mg 3x a day works for me .

[recycleme]

valium

[rfbdorf]

Mywife has been on baclofen for quite a while now; the pain specialist prescribed it even though she has never had any spasms - he said a side-effect was pain relief. She takes 10 mg 4 times a day. Now I'm wondering if we should try removing it from her drug cocktail, to see whether it is contributing to any of the pain. What guidelines are there for stopping baclofen? Gradually over a couple of weeks? Cold turkey? Somewhere in between?
- Richard

[Laurie290]

I had my Op for an intracather pain pump in March 08.The drug they are using is Morphine although I do know other meds can be used.I have had numerous probs since surgery.The biggest seems to be a rejection of the steel computer box in abdomen.I had a lrge amnt of fluid already drained off ,but they can only do this once.After 5 botched back surgeries & numerous severe side effects ,I was praying that this would end the majority of pain meds & pain.So far, I am dissappointed to say the least! I am going back & forth to implant clinic for increases to the morphine ,but am far from getting adequite amnts.I have no idea how long my body will take to accept this steel box? It is very painful.Feels like searing flesh underneath when moving & protrudes, making clothes quite uncomfortable around the waistline.I have noticed an increase in depression,leg pain,bladder weakness,etc.Seems all I did was trade the oral meds for another cesspool of problems.:confused:

[Mona~on~wheels]

I've been taking 20 mg baclofen every 4 hrs.
6 times a day x 20 = 120 mg a day
I've never noticed any pain associated with it.
Of course I take 25 mg ultram every time I take the baclofen.
I have no spasms either.