33 replies to this topic

[Vanessamaee]

Im almost 4 months post injury and my muscle spasms have increased and are now painful, keeping me awake, tossing me out of my chair, interfering with transfer and even when I am pushing my chair they will start acting up and I have to stop and wait for them to subside in order to continue on. I talked to my doctor, he prescribed baclofen. My parents are refusing to fill my prescription because of the possible side effects. They dont understand how severe my spasms are even though they have watched me fall because of them. So does anyone not take anthing for muscle spasms? What do you do instead? Or if you do take something of spasms, what do you take? Maybe an alternative would make them feel better. Who knows. Im just getting sick of them geting in the way of everything. (spasms, not parents.) Thank You

[Scott_C4-5]

I've been taking baclofen for 20 years and change and just recently decided to try and find an alternative. I never really considered the side effects until lately and just took it as a part of a S.C.I. I'd also like to hear what every is taking and if they have any of the same side effects as baclofen.

[Ches]

I dont take anything. I do smoke tho, and that tends to help.. drinking also calms em down..or if Im gonna go out with friends all night I might pop a muscle relaxer, also helps. I've notice that repressing the spasms only tends to make them worse the next day, as if my legs have been bottling it all up. Best thing is a hot shower, stretching, and being sure to move them around every hour or so..
Spasms seem worse at the beginning because youve still got all that pre injury muscle. Eventually (if youre a para) I would think your upper body will be strong enough to hold you in place while your legs flip out. I'm anti-repression thru means of meds b/c I'd like for them to have some sort of muscle tone. I'd rather exercise and stretch them to wear em out.
Another thing I've noticed.. after swimming or some activity that completely turns them lame I have to do extra work to transfer and whatnot. Those spasms help more than you know, once you get better acquainted with them.

[Vanessamaee]

Haha! Maybe Ill convince my parents to let me pick up drinking! ;) but glad to see that someone doesnt take baclofen! My doctors told me that was the ONLY thing they could do! Ugh. I'd rather not be on something addictive

[dianna318]

Wow, if you read the side effects of any prescription and prob most OTC drugs you would feel you must be desperate to take it, LOL. But remember the side effects listed are "POSSIBLE"side effects and you may or may not have any of them.

Just taking to much Tylenol can shoot your liver and that's in most lower pain meds like Percocets. I have taken Baclofen and didn't really notice anything adverse from it but do use a lot of stuff so ... But I didn't consider it an addiction risk. Not so with my oxy,morph and prec's. Now there's some side effects,lol. But I have a set # days a month that I go without to keep from building up tolerance and addiction.


Please don't get mad at me for this, but I find it funny, as in humorous, that your parents were OK

with you being a Rodeo Bullfighter , but not the Baclofen because of possible side effects. Just

saying,lol.

Anyway, you sound like a strong young lady and already have a really good attitude. It takes time, but

you can get back into a lot of things you love and even new ones. I am incomplete and can walk some

with crutches and I never skied or snowboarded before my accident. 2 yrs ago I took up both and found

they were easier for me than walking. Not going to lie, it's painful for me, but it's soooo worth it!

And this winter/spring was able to get back into horseback riding.


I hope you find your way to deal with the spasms. Some one here may be able to recommend a

different drug, but it's still a drug with side effects but maybe not as many.


Nice to meet you and Best Wishes , Dianna

Edited by dianna318, 24 August 2011 - 10:13 PM.

[allis53ca]

ssssmoke spasms away

[knightrider]

Have you taken baclofen yet? Most side effects are just put on there as a warning, i dont get any side effects at all, when i was first on Baclofen i was on like 100mg a day or more now im only on 40mg a day, perfect dose for me as will just get the odd minor spasm for tone. I've tried quitting baclofen but there is no way i could, when i'm off them for just 2 days i can't even push my chair or i'll get a huge spasm and it will throw me out of my chair. God knows how you cope if your spasms are as strong as mine when they fire up!

Just say to your parents, let me try them and lets see the results, and if i get any side effects. No harm in trying hey? It could be a life saver lol trust me. It helps mobility in a huge way in getting around in your chair, transferring and all sorts. If you need to increase the dose go see your doctor, but definitely give them a go i say.

Drinking does help loosen up the legs lol, but you cant go drinking 24/7 or you're a goner. Exercise/stretchiing and swimming all help too. Make sure you're not sitting on something lol and make sure your bladder/bowel programs are all good too, then less spasms. The shakey style ones like you get from lying down in bed after a long day is just spasticity and your legs stretching out, annoying but good for muscle tone lol, not much you can do about them but the huge scary spasms you get like you mentioned that throw you out of your chair can be helped out with Baclofen.

So what you waiting for......Go take them hahah

Edited by knightrider, 24 August 2011 - 09:52 PM.

[Trinity]

Vanessamaee, on 24 August 2011 - 07:09 PM, said:

Haha! Maybe Ill convince my parents to let me pick up drinking! ;) but glad to see that someone doesnt take baclofen! My doctors told me that was the ONLY thing they could do! Ugh. I'd rather not be on something addictive

Baclofen isn't addictive!

Every drug ha the potential to have side effects, the worst listed will be so rare. Baclofen has been around for years and is generally considered safe, certainly I would think the safest of the anti-spaz drugs.

You need to weigh up the risks and the benefit, the risks of continuing poor quality of sleep, falling out chair (you are at a much higher risk of broken bones now) etc etc

Now I am not saying take the drugs, if you can manage without then fantastic but don't discount them altogether, sometimes they make life just a little more bearable!

[Ginny]

I was taking Gabapentin for a while. Spasms were worse early on after my injury. They've lessened as time as gone on. They bothered me most at night, especially towards morning. I found that stretching before bed helped a lot. I'm almost done with my last Gabapentin prescription and won't be refilling it. Things have settled down considerably and I hope they do for you, as well. If not, look at what medications will help.

Edited by Ginny, 24 August 2011 - 10:03 PM.

[tsh3406]

4 Aminopyridine....

It has to be made, and not every Dr. will prescribe it, but I took Baclofen (80mg a day) for 18 years, then dropped it all together for 10-30mg a day of 4AP. There is not one single drug on the market that is side effect free, and Baclofen is on the very mild end of things. You have to take a phenomenal amount to cause any harm.

I think, by "addictive", you were referring to smokin' the reefer? lol....

Tim

[Vanessamaee]

@dianna, Im not mad about that comment, but my parents didn't approve of me bullfighting. I paid for everything, equpiment, training, gas to go to the rodeos, everything, they saw how much I liked it and that I was good so they let me, but they (especially my mom) never wanted me to do it. Kinda a slap in the face now.

Also I was told by my doctor that baclofen is addictive... is it not?

[tsh3406]

Absolutely not....

[dianna318]

Baclofen is not addictive. My Dr was worried about the "ADDICTIVE" drugs I was on and wanted me to use baclofen to try and take lower doses of pain killers.


Now by Bullfighting, you mean you were the person (usually in costume) that protected the bull riders after a fall or dismount?

If so, nothing but Respect!!!

[rue2you]

You might watch this:

Personally, I don't take anything but my PT wanted me on Baclofen. I opted out because I have 6 children and didn't want to feel tired all over (it doesn't just relax your spasming muscles). However, my spasms are more annoying and embarrassing than harmful to me. They do not throw me out of my chair or anything like that. I get them in certain positions and have learned that by now, I know what can trigger them, and I think they are good for my muscles. I have also learned how to use them to my advantage although that isn't 100% guaranteed they will always work for me.

Maybe ask your parents to help you research it or get on here and read these replies.

[Vanessamaee]

dianna318, on 25 August 2011 - 02:48 AM, said:

Baclofen is not addictive. My Dr was worried about the "ADDICTIVE" drugs I was on and wanted me to use baclofen to try and take lower doses of pain killers.


Now by Bullfighting, you mean you were the person (usually in costume) that protected the bull riders after a fall or dismount?

If so, nothing but Respect!!!

Yes that was the kind of bullfighter I was (: I worked as cowboy protection (distracting the bull so the bull rider can get to safety after falling off) but I also did some freestyling which is where it is either you, or your team (you and another person) in the arena and a bull, and you get scored on how close you stay to the bull and they difficulty of your steps and moves. Jumping the bull= high points, but never gave it a go being that Im only 5'3 (:

Also thank you everyone. Thats why I started this, to show my parents what other people are doing, opening up the options (: We decided to wait on the baclofen and see if they improve any on their own in time. For now Ill just keep working on those floor transfers (: My spasms are acting as my rehab! lol

[KayDub]

Vanessamaee, on 24 August 2011 - 05:44 PM, said:

Im almost 4 months post injury and my muscle spasms have increased and are now painful, keeping me awake, tossing me out of my chair, interfering with transfer and even when I am pushing my chair they will start acting up and I have to stop and wait for them to subside in order to continue on. I talked to my doctor, he prescribed baclofen. My parents are refusing to fill my prescription because of the possible side effects. They dont understand how severe my spasms are even though they have watched me fall because of them. So does anyone not take anthing for muscle spasms? What do you do instead? Or if you do take something of spasms, what do you take? Maybe an alternative would make them feel better. Who knows. Im just getting sick of them geting in the way of everything. (spasms, not parents.) Thank You

I'm in the same boat you are exactly. minus the details of the injury and at all my spasms have really picked up. i kept falling asleep in class today because they've been so bad during the night I can't sleep. Then I spasm at my desk and it's painful and freaks everyone out (the class I just had was so bad it was embarrassing and I sit at the very back because the lecture halls are all stadium style seating). On top of that despite being 23 I live at my mom's and still have health care through my dad. My fiance usually takes me to doc appointments and to the pharmacy but after my last surgery my doctor gave my dad my pain pill and baclofen script. He gave them to my mom when I got dropped off and she refused to fill them or give them to me because she didn't think I needed them. ARGH!!! So frustrating. I really recommend the baclofen, try to have your doctor talk to your parents. Also try to present research to them about the benefits and how much you struggle with spasms etc.

Alternatively I take lots of baths with epsom salts with lavender, it helps with that achy pain I get when my spasms get bad. The hot water plus the epsom salts + lavender really relax my muscles too and help reduce the spasms. I swim a lot and try to stretch as much as possible in the pool with the help of my fiance, I don't know if anything close to that is available to you, but anything to stretch out your muscles. Staying hydrated is also a big one. With all the messed up sleep and school I've been downing coffee, which only makes me dehydrated and the spasms worse. Vicious cycle. When I can manage to get more water in the better my spasms are (of course be careful about what this does for your b & b routine, hydration also helps with UTIs in my experience too!)

Good luck.

[Edinburgh Colin]

I take 40mg/day of Baclofen but also another anti spasm drug called Dantrolene. I take 200mg/day of that and find that it works much better for me, particularly for the more violent type of spasms rather than the cramp type.
Neither of these are addictive but you do need to increase and reduce the dosages gradually if you are finding what level you need to control the spasms.
Good luck.
EC

[Irish Wheelz]

I take Baclofen 20 MG 3 times daily, been doing so since I was 13. I also use to smoke mary j and it work out well, way better than baclofen. But moving around does surpress the spasm as well, I tend to listen to music and dance alot.

[mcjane]

Baclofen may not be addictive...but the side effects are increased spasms, and if you stop taking it you can have seizures. I've tried smoking and it does help with spasms, but it seems to increase the nerve pain. I drink good Belgian BEER. Stops spasms, nerve pain, and seems to help the kidneys. No UTI's. Pure piss and plenty of it! I also have a MOTOmed electric exercycle which is nothing short of miraculous. Best investment I ever made.

[Trinity]

I somehow don't think that Vanessa's parents are going to be a fan of the beer or weed option

[dianna318]

Trinity, on 25 August 2011 - 09:55 PM, said:

I somehow don't think that Vanessa's parents are going to be a fan of the beer or weed option

Smoke just knocks me and then eat everything I find.

When I was younger, I played Mexican Sweat Poker(what it's called here)at a couple rodeo's.The last one was close and pretty

embarrassing, so decided 2 times was enough,lol.

[tsh3406]

Don't wanna be a parade pisser, but y'all are really telling a teenage girl(who's hobbies include working with very large and powerful animals) to drink beer and smoke the weed? Really? lol....

[Irish Wheelz]

tsh3406, on 25 August 2011 - 11:48 PM, said:

Don't wanna be a parade pisser, but y'all are really telling a teenage girl(who's hobbies include working with very large and powerful animals) to drink beer and smoke the weed? Really? lol....

Oh man! We're bad influences. lol

[dianna318]

Well she did start High School,lol.Learned a lot of bad habits in those daze. But I think she'll hang with a better crowd than I did!

[McTavish]

I did take Baclofen in Rehab but took myself off it as soon as I was home as my spasms are not annoying and sometimes it is nice to let them legs have a little shake about when they are doing nothing most of the time.

[Vanessamaee]

Irish Wheelz, on 26 August 2011 - 12:37 AM, said:

tsh3406, on 25 August 2011 - 11:48 PM, said:

Don't wanna be a parade pisser, but y'all are really telling a teenage girl(who's hobbies include working with very large and powerful animals) to drink beer and smoke the weed? Really? lol....

Oh man! We're bad influences. lol

HAHA!!! I can't stop laughing. Ya, the wheelchair slows me down a little but Im still around them (cattle,bulls,horses, etc) a lot... I dont think Pot or alcohol are the best options (: lol I decided to let the spasms go for a little bit since Im still fresh and see if they go down a little with time (: Thank you all!

[wheeliebear75]

I think there needs to be a distinction made between meds that you CAN become ADDICTED TO like the pain pills or Valium many of us take....but then there are a few meds out there that the body can't just start & stop for an "as needed" schedule, where you have to start off on a low dose then gradually go up to the therapeutic levels slowly & that if you were to need to stop they'd have to have you SLOWLY stop vs. just STOP taking it.

A lot of other Rx meds are like this including anti-seizure meds...I was on some when I found out I was pregnant with my 1st daughter they had to gradually ween me off.....not because they were concerned about the seizures coming back but just STOPPING could actually do OTHER bad things.....I THINK they are a similar TYPE of "dependency" which is I think where the mix up comes in.

[Millard]

Vanessamaee, on 26 August 2011 - 06:20 PM, said:

Irish Wheelz, on 26 August 2011 - 12:37 AM, said:

tsh3406, on 25 August 2011 - 11:48 PM, said:

Don't wanna be a parade pisser, but y'all are really telling a teenage girl(who's hobbies include working with very large and powerful animals) to drink beer and smoke the weed? Really? lol....

Oh man! We're bad influences. lol

HAHA!!! I can't stop laughing. Ya, the wheelchair slows me down a little but Im still around them (cattle,bulls,horses, etc) a lot... I dont think Pot or alcohol are the best options (: lol I decided to let the spasms go for a little bit since Im still fresh and see if they go down a little with time (: Thank you all!

After I was injured many years ago, my doctor tried me on Valium which made me sleep well but did nothing for spasms. It is supposed to be addictive but I quit (no withdrawal) after about a year as I could see no results. He then tried dilantin which had the same results. After about 4 years post, I just said the crap with it and quit everything for the next 25 years. My urologist wanted me to try baclofen to see if it would help relax my bladder sphincter muscle. It didn't help with the bladder but it stopped all my muscle spams dead. For the last 15 years I have been using 30 mg of baclofen daily. The only warning... if you take a large amount of baclofen daily and want to quit, you must taper down and not quit cold turkey. Quitting cold turkey after taking baclofen for a substantial time possibly could be fatal.

Personally, if I had a 2000 pound bull chasing my axx, I definitely would not want to slow or stop because of a spasm. He might think I was teasing him!

Good luck and feel safe with baclofen.

[Vanessamaee]

Just wanted to give a little update, my parents were (suprisingly) agreeing to the weed option. haha my mom said anything to keep me off baclofen, she said she would rather me take something whenever I need it instead of everyday because I have to. BUT since weed is not legal in the state I live, I decided to go for a more legal approach right now (due to college and trying to find a job, never know when you'll have to take a piss test!) and I got started on Zanaflex today. The part where the doctor told me I might start hallucinating SLIGHTLY worried me, lol but I take it once at night, so I might just have really interesting dreams, who knows (:

Edited by Vanessamaee, 20 September 2011 - 01:58 AM.

[tsh3406]

Vanessamaee, on 20 September 2011 - 01:48 AM, said:

Just wanted to give a little update, my parents were (suprisingly) agreeing to the weed option. haha my mom said anything to keep me off baclofen, she said she would rather me take something whenever I need it instead of everyday because I have to. BUT since weed is not legal in the state I live, I decided to go for a more legal approach right now (due to college and trying to find a job, never know when you'll have to take a piss test!) and I got started on Zanaflex today. The part where the doctor told me I might start hallucinating SLIGHTLY worried me, lol but I start it once at night, so I might just have really interesting dreams, who knows (:

Holy shit man, lol....

The one and only time I ever came home with the marijuana, my lil 5'4" Catholic Kindergarten teachin' mom whupped my 6'5" 250 pound ass. You want Tim Howard to come have a talk with your parents? Haha....