19 replies to this topic

[M@CHINE]

i've been taking baclofen 4 times a day and my spasms have escalated from none in the beginning to shaking everytime I move, over the past 9months and keep getting worse. Hope they level out at some point. Has this happened to anyone?

[Smileyblue]

Hi there.. ;-) I also had zero spasms in the beginning. Now I'm taking baclofen, valium, and another new tablet (starts with a "t", can't remember the name right now) for the wild spasms.. My legs kick, and "run", and stomp, and cross over and point like ballet, and my whole body flattens out straight sometimes.. I always tease they're training for the Comrades Marathon.. Lol.. Everyone told me they'd calm down or even go away with time, but I haven't been that lucky yet..

[Super-Quad]

I had the same problem, my legs would both stretch out, my arms would stiffen, my stomach would tighten up and my hips would thrust forward...and when all this happened at the same time, i would actually slide out of my chair - which can be quite dangerous when i'm on my own. I was taking baclofen 4x a day (total of 100mg) but it didn't seem to help. To make things worse, they were getting worse over time. For a quad who loves being out and about on my own, they were really ruining my life!

So, what did I do to improve them?

Well first off, I went and got myself a botox injection in my bladder - this worked like a miracle, I would say it cut my spasms by 70% at least! So now I get an injection twice a year. The added benefit to this is that i can get away with using the Oxytrol patches and stop taking those DISGUSTING ditropan tablets...finally breaking free of their unbearable side-effects!

Another thing that helped my spasms was the use of a tilt table - if I stand up for around two hours I don't spasm for a whole day...really weird, and don't ask me why:-)

Finally, the use of a muscular stimulation device on my lower back muscles. This is the most perfect option for me because i work full time and don't have time to use a tilt-table that often. With the muscle stim, I use it for about 30mins before I get out of bed to get ready for work - and my spasms almost disappear for around 6-8 hours afterwards and are significantly reduced after that. Best of all, the stim device only cost me around $1000.

[Stickman]

Yeah, same here... dont know why but stretching helps if you can or have someone help do it. Baclofen didn't help at all, i take tizanidine at night since it helps me sleep.

[Super-Quad]

Oh, I forgot to mention, since I had the botox and using the muscle stims, i only take baclofen 3x a day...not much of a reduction but hey, it's less:-)

I will tell you though, baclofen doesn't seem to help with the 'ugly' spasms (the ones that turn you into a river dance spectacular:-) - for me, it only helps for the small shakes.

[Tetracyclone]

All,

It is a given that the more use your muscles get the less spasms you have, except of course for the get used to period in which the increase in activity (fatigue) can cause more spasms.

Thanks for the useful stories of success.

It is also said that anything wrong below injury site causes spasms. As i slowly correct the hip displacement on my left side i am also able to do more without spasms. The displacement never hurt, just caused me to be awkward.

Yesterday a full 23 minutes on the exercise bike of vigorous work and my feet never jiggled off the pedals. Of course, when i went to bed it took 2 hours to settle down...

[benok]

I think the more you tire them, the less they will be spastic. go for the ergo and other exercises in a daily schedule in a spread out time. I have only one problem with my left leg that is sooo spastic while the right is flaccid.

[benok]

Hello everyone, leg spasm is getting worse in my left leg that I am walking plantar flexed.... any help or suggestions especially what type of stretchings. I am actually walking with a left leg planted on the floor while the right does not even touch the floor because it is flexed. whew... if we can only tame our legs

[onejobbob]

interesting that the use of bacclofen is almost a given for so many. I try so hard to only use natural stuff even tho its slow to work and not as effective, I am apparently lucky that i can get to sleep on two advil (good for 1 hour of no kicking and as long as i don't kick myself out of bed(happen occasionally) i stay asleep all nite merrily kicking every 10 seconds.very fortunate for me. If i sit too long like driving, my leg will kick sideways inward. Trips me when walking and i have to to watch the sudden decceleration when driving , I know then its time for a pit stop and a walk. I was surprised that so many said that working helped with calming their legs. That and heavy lifting and carrying will trigger the kicking. about 25lbs seems to do it. onejobbob

[Chloe]

My leg spasms are relatively mild, and manageable with clonazepam. However, over the last two years they have clearly increased in frequency and intensity. My SCI was four years ago. I thought muscle spasms were supposed decrease over time rather than increase. Why is this happening?

[MagiCiSee]

I also had no to very little muscle spasms n now it seems like the pills make them worse to the point where it hurts my muscles cause i get them n my legs back n in my abs

But my spasms in my left leg do help my walk dramtically..its like hate them but i love them

[Mern]

Ahh my spasms are also getting ridiculous... I didn't have any at first but now my legs never seem to stop bouncing up and down or kiking out straight at any oppertunity and my back flings backwards or my stomach cntracts pulling me forwards. At first it was just embarassing but its really getting dangerous now. I nearly race planted a concrete ramp the other day and if it hadn't been for my strong male friend catching me I would be covered in cuts and bruises right now.

Ive been avoiding baclofen and other drugs because the last thing I want at the moment are the side effects when I'm at college 5 days a week but this is getting ridiculous. Can anyone give any more info about getting botox?

[Edinburgh Colin]

Have you tried Dantrolene? I use Baclofen and Dantrolene but I'm weaning off Baclofen as it maked my legs really stiff. I get exactly the same spasms as youand we are about the same time post injury both caused by a bleed. Prone lying I.e. Face down or a warn shower or bath if you can helps to sooth them. Dantrolene does not seem to be to bad for side effects I only take 150mg/day and it's juat enough to stop them almost. Good luck I'm out just now but PM me what you've been trying and when I get home later I'll give you a better run thropugh what I've been doing for the last 7 month. There will be a way before Botox, we just need to find it.EC

[Trinity]

I am sure dantrolene has more side effects in women than men, I think off hand that it *can* (not will!) cause problems with the liver and being a woman makes you more susceptible (btw I am talking to Mern not Colin here, I am pretty sure Colin is a guy!)

[Mern]

Hmm I'm just not keen on drugs at all to be honest. I havn't been on anything since I was in hospital and I like not having to remember to med every day (I don't think my brain has the capacity for it hahah)
I should really speak to some sort of medical person about it I guess. Just such a pain being so far away from my spinal unit.

[Edinburgh Colin]

Trinity, on 03 April 2011 - 09:11 PM, said:

I am sure dantrolene has more side effects in women than men, I think off hand that it *can* (not will!) cause problems with the liver and being a woman makes you more susceptible (btw I am talking to Mern not Colin here, I am pretty sure Colin is a guy!)

Yep Trinny, last time I checked I was a guy and a bald one at that (only temporary).



So you think the Dantrolene has more side effects? I was advised to take it ramping up - 2 x 25mg/day then 100mg/day, then 150mg/.day where I am at now as the spasms stopped along with 2 x 20mg balcofen. I've since cut the baclofen to 10 mg last weekend and it was probably a bad Idea has the spasm's have increased. I was going to up the Dantrolene to compensate but you have me thinking now!

My biggest problem is that these drugs seem to make my legs very stiff and hard to move around, the spasms are in my legs and all the way up my torso to my injury level at T3.

My consultant said I could keep on upping my Dantrolene - 150/day , 200/day, 300/day and even up to 400/day. I have bloods taken monthly to check my LFT so obviously there is a concern.

Obviously I'm only on a low dose of Baclofen and can raise it if need be but I hate the stiffness and loss of voluntary movement I have in my left leg as I'm incomplete.

Going to see my consultant on Friday again and would like to have some ideas to throw at her rather than her just prescribing more pills.

Trinny can you offer any suggestions as would any of the other long term anti spasm drug users out there as I'd really like to be armed with some information and experiences before I see her.

[Trinity]

Edinburgh Colin, on 06 April 2011 - 11:48 AM, said:

Trinity, on 03 April 2011 - 09:11 PM, said:

I am sure dantrolene has more side effects in women than men, I think off hand that it *can* (not will!) cause problems with the liver and being a woman makes you more susceptible (btw I am talking to Mern not Colin here, I am pretty sure Colin is a guy!)

Yep Trinny, last time I checked I was a guy and a bald one at that (only temporary).



So you think the Dantrolene has more side effects? I was advised to take it ramping up - 2 x 25mg/day then 100mg/day, then 150mg/.day where I am at now as the spasms stopped along with 2 x 20mg balcofen. I've since cut the baclofen to 10 mg last weekend and it was probably a bad Idea has the spasm's have increased. I was going to up the Dantrolene to compensate but you have me thinking now!

My biggest problem is that these drugs seem to make my legs very stiff and hard to move around, the spasms are in my legs and all the way up my torso to my injury level at T3.

My consultant said I could keep on upping my Dantrolene - 150/day , 200/day, 300/day and even up to 400/day. I have bloods taken monthly to check my LFT so obviously there is a concern.

Obviously I'm only on a low dose of Baclofen and can raise it if need be but I hate the stiffness and loss of voluntary movement I have in my left leg as I'm incomplete.

Going to see my consultant on Friday again and would like to have some ideas to throw at her rather than her just prescribing more pills.

Trinny can you offer any suggestions as would any of the other long term anti spasm drug users out there as I'd really like to be armed with some information and experiences before I see her.

I think if your LFT's are ok then you are fine, it's women that have more chance of developing liver problems.
actually I have just looked it up in the BNF.....

Cautions

Potentially life-threatening hepatotoxicity reported, usually if doses greater than 400 mg daily used, in females, patients over 30 years, if history of liver disorders, or concomitant use of hepatotoxic drugs; test liver function before and at intervals during therapy—discontinue if abnormal liver function tests or symptoms of liver disorder (counselling, see below); re-introduce only if complete reversal of hepatotoxicity

Counselling

Patients should be told how to recognise signs of liver disorder and advised to seek prompt medical attention if symptoms such as anorexia, nausea, vomiting, fatigue, abdominal pain, dark urine, or pruritus develop.

To be fair though, if it works for you and they are keeping a close eye on your LFT's then there shouldn't be a problem. There aren't many options out there, tizanidine is one and diazepam is another but thats about it. I guess there is not enough money in muscle relaxant drugs for companies to bother developing new ones

As for anything else that works, not much that I have found (I take baclofen) stretching and hot baths is about it, one of those I do everyday, the other is every 3 months or more!

[Edinburgh Colin]

Trinity, on 06 April 2011 - 12:29 PM, said:

Edinburgh Colin, on 06 April 2011 - 11:48 AM, said:

Trinity, on 03 April 2011 - 09:11 PM, said:

I am sure dantrolene has more side effects in women than men, I think off hand that it *can* (not will!) cause problems with the liver and being a woman makes you more susceptible (btw I am talking to Mern not Colin here, I am pretty sure Colin is a guy!)

Yep Trinny, last time I checked I was a guy and a bald one at that (only temporary).



So you think the Dantrolene has more side effects? I was advised to take it ramping up - 2 x 25mg/day then 100mg/day, then 150mg/.day where I am at now as the spasms stopped along with 2 x 20mg balcofen. I've since cut the baclofen to 10 mg last weekend and it was probably a bad Idea has the spasm's have increased. I was going to up the Dantrolene to compensate but you have me thinking now!

My biggest problem is that these drugs seem to make my legs very stiff and hard to move around, the spasms are in my legs and all the way up my torso to my injury level at T3.

My consultant said I could keep on upping my Dantrolene - 150/day , 200/day, 300/day and even up to 400/day. I have bloods taken monthly to check my LFT so obviously there is a concern.

Obviously I'm only on a low dose of Baclofen and can raise it if need be but I hate the stiffness and loss of voluntary movement I have in my left leg as I'm incomplete.

Going to see my consultant on Friday again and would like to have some ideas to throw at her rather than her just prescribing more pills.

Trinny can you offer any suggestions as would any of the other long term anti spasm drug users out there as I'd really like to be armed with some information and experiences before I see her.

I think if your LFT's are ok then you are fine, it's women that have more chance of developing liver problems.
actually I have just looked it up in the BNF.....

Cautions

Potentially life-threatening hepatotoxicity reported, usually if doses greater than 400 mg daily used, in females, patients over 30 years, if history of liver disorders, or concomitant use of hepatotoxic drugs; test liver function before and at intervals during therapy—discontinue if abnormal liver function tests or symptoms of liver disorder (counselling, see below); re-introduce only if complete reversal of hepatotoxicity

Counselling

Patients should be told how to recognise signs of liver disorder and advised to seek prompt medical attention if symptoms such as anorexia, nausea, vomiting, fatigue, abdominal pain, dark urine, or pruritus develop.

To be fair though, if it works for you and they are keeping a close eye on your LFT's then there shouldn't be a problem. There aren't many options out there, tizanidine is one and diazepam is another but thats about it. I guess there is not enough money in muscle relaxant drugs for companies to bother developing new ones

As for anything else that works, not much that I have found (I take baclofen) stretching and hot baths is about it, one of those I do everyday, the other is every 3 months or more!

Thanks Trinny, remind me to stay upwind of you if we ever have the pleasure of meeting! Do you find that your legs get stiff and very tight on Baclofen?.

I take Diazepam at nights sometimes to help but as I'm already on 20mg Amitriptylene and 0.5mg clonazepam at night it just knocks me out for a few hours and I still wake up at 3 am stiff and sore and dozy as hell.


Maybe I need to go back to Baclofen and raise the dosage and cut the dantrolene, I just seem to be taking too many drugs and some times it seems several for the same thing?!

See my hair is growing back too!

[Trinity]

Edinburgh Colin, on 06 April 2011 - 01:59 PM, said:

Trinity, on 06 April 2011 - 12:29 PM, said:

Edinburgh Colin, on 06 April 2011 - 11:48 AM, said:

Trinity, on 03 April 2011 - 09:11 PM, said:

I am sure dantrolene has more side effects in women than men, I think off hand that it *can* (not will!) cause problems with the liver and being a woman makes you more susceptible (btw I am talking to Mern not Colin here, I am pretty sure Colin is a guy!)

Yep Trinny, last time I checked I was a guy and a bald one at that (only temporary).



So you think the Dantrolene has more side effects? I was advised to take it ramping up - 2 x 25mg/day then 100mg/day, then 150mg/.day where I am at now as the spasms stopped along with 2 x 20mg balcofen. I've since cut the baclofen to 10 mg last weekend and it was probably a bad Idea has the spasm's have increased. I was going to up the Dantrolene to compensate but you have me thinking now!

My biggest problem is that these drugs seem to make my legs very stiff and hard to move around, the spasms are in my legs and all the way up my torso to my injury level at T3.

My consultant said I could keep on upping my Dantrolene - 150/day , 200/day, 300/day and even up to 400/day. I have bloods taken monthly to check my LFT so obviously there is a concern.

Obviously I'm only on a low dose of Baclofen and can raise it if need be but I hate the stiffness and loss of voluntary movement I have in my left leg as I'm incomplete.

Going to see my consultant on Friday again and would like to have some ideas to throw at her rather than her just prescribing more pills.

Trinny can you offer any suggestions as would any of the other long term anti spasm drug users out there as I'd really like to be armed with some information and experiences before I see her.

I think if your LFT's are ok then you are fine, it's women that have more chance of developing liver problems.
actually I have just looked it up in the BNF.....

Cautions

Potentially life-threatening hepatotoxicity reported, usually if doses greater than 400 mg daily used, in females, patients over 30 years, if history of liver disorders, or concomitant use of hepatotoxic drugs; test liver function before and at intervals during therapy—discontinue if abnormal liver function tests or symptoms of liver disorder (counselling, see below); re-introduce only if complete reversal of hepatotoxicity

Counselling

Patients should be told how to recognise signs of liver disorder and advised to seek prompt medical attention if symptoms such as anorexia, nausea, vomiting, fatigue, abdominal pain, dark urine, or pruritus develop.

To be fair though, if it works for you and they are keeping a close eye on your LFT's then there shouldn't be a problem. There aren't many options out there, tizanidine is one and diazepam is another but thats about it. I guess there is not enough money in muscle relaxant drugs for companies to bother developing new ones

As for anything else that works, not much that I have found (I take baclofen) stretching and hot baths is about it, one of those I do everyday, the other is every 3 months or more!

Thanks Trinny, remind me to stay upwind of you if we ever have the pleasure of meeting! Do you find that your legs get stiff and very tight on Baclofen?.

I take Diazepam at nights sometimes to help but as I'm already on 20mg Amitriptylene and 0.5mg clonazepam at night it just knocks me out for a few hours and I still wake up at 3 am stiff and sore and dozy as hell.


Maybe I need to go back to Baclofen and raise the dosage and cut the dantrolene, I just seem to be taking too many drugs and some times it seems several for the same thing?!

See my hair is growing back too!

The baclofen loosens everything up a bit for me, I have quite a bit of tone/spasticity but not too many of the violent type of spasms as a rule now.
The hair is growing back quickly! Must be hot in Edinburgh today too as you have shed the hoody!

[kidrock]

Hi

I just saw this thread, I felt like I was going mad. My spasms are becoming horrendous. 4 years into my injury to start with no spasms and over the years there getting worse. The last 4 weeks i've been crying due to lack of sleep. Every night is the same. I was told to increase the Baclofen and i've gone from 30mg a day to 90mg and it's not helped. I have bladder botox so have just e-mailed the doctor to book me in. I've also done a water sample to check for an infection.

I was wondering, I also have botox injected into my legs and thighs could this be the reason?

I had a MRI scan 3 weeks ago as I have a Syrinx (it's been behaving itself) but, i've had neck pain and my arm keeps going dead. (I sound like a right sicknote)

Any other suggestions, I would be really grateful.

Thanks