18 replies to this topic

[sciiaf]

i'm due for a botox injection next week, but for the past few weeks the spasms have been out of control, especially at night, most nights, i get maybe 1 or 2 hrs sleep..that's it, last night they were horrendous, occurring every 17 seconds, at the worst EVERY TWO %$#@@#%!^!^ seconds.

i try bullshit techniques to try and make them stop, i sleep with my legs hanging off the bed, or curled up to my knees, i get up in chair and try and sleep by resting my head on the sink or kitchen table...i hit my legs repeatedly, or,this seems to work but could kill me....

i lay on both my bended knees, i try and bend my legs and lay with my stomach and head resting on them.

nothing is more &^@%@$#!$@^@& HORRENDOUSLY F*******KING annoying than spasms, and no, i just cant 'wait until monday' for the surgery,

i get ZERO sleep at night, if they let up during the day, i'll try and sleep then.

does anyone have any idea on how to curb them? make them stop?? i'll try anything, i'll even cut the mother F******ng things off

and yes, i'm on baclofen and tizanidine...

[wheeliebear75]

I hope having the injection makes them stop. Until then....you're not alone.

[pinkcloud]

hi asia a and spaz..i type with lump in me throat for ya

spaz attacks. Me definition..like a fish out of watr trying desperatly to get back in it.

I sit up...spaz attacks..I walk..spaz attacks..i do feck all...spaz attacks

Now lucky the whole body shaking dont happen to me...but....them that ripple under me back and near the spine, in the abdomen and when the legs go spazzy....well before the legs just moved as 100 miles an hour..now they smash up and down on the floor more slowly too.... like they are made of steal..and of course the intercoastal muscles are the main bad boy muscles that spaz..that is evil.

make me life as a should be walker/sit up..into less ###### mobility than real bad sci chair users. And its crap.

I had botox too..now i'm due for more and waiting..and am i paying the price.

massage dont help them muscles in constant spaz..i near enough pass out to have them touched, feck them botox are gonna hurt your spaz muscles...like nothing else in the world..i swear i willed to die to when i was being injected. and that is how i cope with spaz..i just compare it to botox injections and no matter how bad they are....no pain was worse than that or the time of me operation. No other help except to say the word clorazenpam....which i have be near dying to take as its so fecking knock out...i fell asleep on me mobility scooter as i was driving it on 1/2 a 2mg tablet. For night time only for me anyway.

i'm sorry have no help..but to say botox is worth the agony of needles and for you to know ya aint alone. it really is as bad as you feel it is and no you are not just being a wimp.

[drunkidiot]

standing (i use tilt table) or warm shower b4 bed usually calms mine down for a while

[biggdoggpa]

do you guys/women stretch regularly? i know my friend had some problems but as he began to stretch regularly and work out they really subsided

[russ1]

Baclofen pump - I went from spasms that ruled my life to none at all...

[Millard]

russ1, on 08 September 2011 - 02:57 PM, said:

Baclofen pump - I went from spasms that ruled my life to none at all...

I had spasms in my left leg so severe that they would slap me down to the ground with no notice. I talked to my neurosurgeon and he said he could do back surgery but I would probably lose feeling and all sensation in that leg. I regained feeling and use of the left leg after about 6 months and never had any problem with the spasms in my left leg since.

Good luck on any choice...except shooting yourself.

[St. Peter]

Take a blant

[tsh3406]

sciiaf, on 08 September 2011 - 11:46 AM, said:

i'm due for a botox injection next week, but for the past few weeks the spasms have been out of control, especially at night, most nights, i get maybe 1 or 2 hrs sleep..that's it, last night they were horrendous, occurring every 17 seconds, at the worst EVERY TWO %$#@@#%!^!^ seconds.

i try bullshit techniques to try and make them stop, i sleep with my legs hanging off the bed, or curled up to my knees, i get up in chair and try and sleep by resting my head on the sink or kitchen table...i hit my legs repeatedly, or,this seems to work but could kill me....

i lay on both my bended knees, i try and bend my legs and lay with my stomach and head resting on them.

nothing is more &^@%@$#!$@^@& HORRENDOUSLY F*******KING annoying than spasms, and no, i just cant 'wait until monday' for the surgery,

i get ZERO sleep at night, if they let up during the day, i'll try and sleep then.

does anyone have any idea on how to curb them? make them stop?? i'll try anything, i'll even cut the mother F******ng things off

and yes, i'm on baclofen and tizanidine...

I quit taking baclofen, 80 mg a day wasn't cutting it, more is hard on your insides, and it had too many side effects. Been taking 4AP for almost two years now with fantastic results....

Tim

[Vanessamaee]

I dont take anything for my spams (1. I hate taking medicine 2. parents refuse for me to go onto baclofen) but I strech a LOT. I take hot showers which usually relaxes them and I also ride the FES bike which tired them out so they dont spaz (and also gets in a cardio workout WIN/WIN!) ve never even heard of botox injections for spasms???

[wheeliebear75]

My TENS unit helps tire out muscles in that same way.....only more portable.

[rue2you]

I think Botox is for spasticity more than for the wilder spasms. Doesn't it relax the muscles that are too tight?

I also do not take any meds. I have medicine phobia!! My spasms aren't as bad as what was described by the OP though. I don't like them when they are spasming but I like what they can help accomplish - better circulation, working my muscles even when I can't and I have not had a huge amount of atrophy in my legs. My spasms didn't kick in consistently until about 1.5 years into paralysis and actually my calves got a little bigger over time. Not a huge difference but a little.

To handle mine - I stretch (and my hubby helps me) morning and night, and a LONG hot shower when they get really disturbing. Mine always go crazy when I lay down in my bed. I just let them go crazy and play themselves out which usually happens within about 30-45 minutes.

I hope yours get manageable.

[Tetracyclone]

When my spasms first began they were painful and sleep depriving like this. However, Spasms - God Help Me I Want To Shoot Myself Or Cut Legs Off this is probably an overreaction.

[Snakeye]

Hot baths, stretching and valium, if that don't work I reccomend a "Wood Boss" with a 24' bar and have an expert sharpen the chain before cutting..One can't be too careful in these matters..Good luck whatever you decide...

[Stand]

Have you tried marijuana?

How many milligrams of anti spasmodic med's or you on?

[megatrig]

fingers crossed for the botox! Hope it works as it can make a huge difference!

[style71]

+1 on the hot shower and stretching

[A trophy guy]

As someone whose paralysis is flaccid in nature and doesn't suffer spasms or spacticity, I can say that there certainly is a downside to the lack of such involuntary movements. As someone else already mentioned, it helps keep one from developing advanced atrophy and muscle wasting in the lower body.

Now it is definitely, overall, a good thing, I'd say, that I don't suffer from spasms. However, because I am already a lean guy, when I have extreme atrophy in my lower body (which includes my hips, butt and legs), the result is literally just about skin and bones. And this can result in serious problems, as one might expect.

Most specifically to my butt. Because I had no natural protection in that area whatsoever (just about); no muscle and no fat; I had no butt cheeks to serve as cushions for that tissue.

Now it's complicated trying to explain how my wounds on my butt were different than decubitus ulcers, or pressure sores. I spent the past six years wearing big huge "butt pads" which I would administer every single day immediately after getting out of the shower. This was a three-step process consisting of medical-grade adhesive pads, guaze and hypoallergenic tape that wouldn't irritate skin but would be strong.

It started out of desperation and necessity because I would injure the tissue of my butt with all the different surfaces I would be on throughout the day and the strenous training I would put my body through at the gym. I would get these painful puncture-like wounds where the skin would get ripped through by the bone-against-surface grating against my butt. And this is with having a high profile roho cushion for my chair.

I would bleed and I would HURT. But I never got infected. Because, after totally-unhelpful trips to dermatologists, psyiatrists and even plastic surgeons; I came up with the idea of putting a "fake butt cheek" on in order to cushion the area and hopefully heal the area.

It took a little bit of trial and error, but after I got it down, it was a process of putting a 3x4 adhesive pad directly over the wounded areas of the buttcheek. Then the thick (about an inch) layer of soft guaze was carefully placed over the adhesive pad; and then I would tape the guaze down all around on my surrounding skin (and I would tape the HELL out of it, I'd have to in order to keep it there throughout the day).

Do this on both buttcheeks, and voila; Jamie got back, baby. Now, my right side was always worse than my left, so I'd have to do a bit more guazing on that side, but both sides were done.

I did this every single day, without fail, for more than six years. I truly believe, if I hadn't done this, I would have ended up in the hospital a long time ago. There are other aspects to the problems with my butt that are too difficult to try to describe here. But I never had any sort of infection, and I think it's only because I was fastidious about taking care of it.

Finally, about 6 months ago, I decided to try going without the pads for a day. It went well and I slowly increased it from there, to the point where I was doing everything without them, even working out (that was the last thing I did without them). I still keep all the supplies ready in case I must return to the regimen, but it has been tenously successful so far without them.

(sorry I blabbed my whole life story here)

[strngink]

you know i take methadone and poof they r gone and im not effected by it like falling asleep it works straight to the pins&needles that hold one back from sleep shoot even hard to do anything wheni dont have my meds try it out seriously works....

some ppl say its bad to take cause u might get addicted but hey here is the deal if ur in as much pain as i am then u will worry about the addicdtion later however with sci u an i most likely will need meds for a very long time so help ur self an try them out.