[springchange09]

My husband is a T4/T5 Para. He has been having spasms that are so bad they interfere with his ability to breathe. His abdomen literally freezes up and it's getting worse and worse. It happens usually at night before he goes to bed, or I should say, as he is getting into bed. He takes Baclofen orally 40mg twice a day...he used to take 20mg four times a day, but kept forgetting to take them in the middle of the night, so he changed to twice a day with his other meds. Is this common? Did anyone out there have this problem and overcome it? Also, his accident happended about 4 months ago. He has not slept through the night since, because if he does, his bladder leaks. He has to cath every 4 hours, or else!!! Does this ever get any better? Any feedback from anyone would be appreciated. Thanks

[SnoFl]

Hi Springchange09,

You ask really good questions. I, too, have spasms severe enough to effect my breathing--cannot move until it releases or lets-up some. So, I can relate. Sorry, I do not have a solution to the problem... I would hope that his Neurologist/doctor is helping him to determine the best medication to use and dosage level. My Neurologist (of whom I adore) ordered more tests for me just last week; so, I am waiting now for the results. Has your husband had recent neurological tests done? The Neurologist told me that Baclofen could be causing more problems for me than helping me (he mentioned that there are other medications that I may need to try)--He, also, told me that the spasms could just be part of my degenerative spinal disease. That's my situation anyway. I need to be patient now and wait for the follow-up visit with my Neurologist.

I wish you both the best. I will be watching for replies to your questions and watching for any updates from you.

gentle hug for you...

[Kwag_Myers]

Your husband's Baclofen is actually a fairly low dosage and he may need to step it up - something to ask the Neurologist. I recall someone posting that they were on 200 mg a day before they went on a pump.

As for the accidents, your husband has to learn to manage his fluid intake. Personally, I never drink more than 24 oz between cathings, and rarely drink anything after dinner. Subsequently, I'm able to go all night and generally output about 400-500 cc in the morning. But your husband has to learn what his capacity is - everyone is different and it seems to decline with age. Seriously, my wife recently drove from Atlanta, GA to Michigan with four seniors and had to stop at every rest area. She thought she'd never get home.

Anyway, the first six months is all about relearning your body's abilities and limitations. I hope this helps. Keep us posted.

[qbounce]

Springchange,
Kwak Myersis totally right about the baclofen dosage. I also take 20mg x4 a day, the lowest dosage perscribed. You definately could stand to up it. Botox injections are also used for extreme cases.

There are bladder spasm meds as well. I always mention it as a posssibility, even though they may not work for everyone. Detrol LA, and Oxybutynin are just a few out there. I recommend trying different ones if the first doesn't work. . . . trial and error.

[Andy p]

springchange09, on Sep 27 2009, 06:48 AM, said:

My husband is a T4/T5 Para. He has been having spasms that are so bad they interfere with his ability to breathe. His abdomen literally freezes up and it's getting worse and worse. It happens usually at night before he goes to bed, or I should say, as he is getting into bed. He takes Baclofen orally 40mg twice a day...he used to take 20mg four times a day, but kept forgetting to take them in the middle of the night, so he changed to twice a day with his other meds. Is this common? Did anyone out there have this problem and overcome it? Also, his accident happended about 4 months ago. He has not slept through the night since, because if he does, his bladder leaks. He has to cath every 4 hours, or else!!! Does this ever get any better? Any feedback from anyone would be appreciated. Thanks

Hi i'm also a T4 complete, the dosage of baclofen is very low i've been taking the max. dosage in a day which was 25mg's 4 times a day and was also on 50mg's dantroline 4 times a day, i've cut back as I still had bad spasms, so i'm now on 20mg's bac. and 25mg's dant., and still pretty much the same, at the moment i'm still waiting to see if i'm going to get the baclofen pump, I would prefer if I could get them to calm down in any other way. Have you tried lots of leg excercises that helps some people. Oxybutynin could help, talk to your specalist before you change anything. As for taking medication in the middle of the night I dont bother I take it first thing, lunch time, tea time and last thing at night. The toilet issue I wear a sheath and leg bag then into an overnight drainage bag, after a while I found I dont need to waken through the night to cateterise, I just pee when i'm sleeping which means you get a better nights sleep most of the time, spasms will still wake you some times.My accident was 4 1/2 year ago. Hope this is of some help andy p.

[mcferguson]

You said your husband's spasms happen when he is getting into bed. Do they last a long time? I get the same spasms, but mine are over in about 20 seconds and I am not on any Baclofen. If the spasms happen only once a day, I'd ask the neurologist if a different medicine might help.

As far as the leaking bladder, I had the same issue until I upped the Oxybutynin to 15mg when I was 7 months post injury. I haven't had a leak in about 3 months, although my urologist said it takes about 1 year for the bladder to settle down. I still have not had a complete nights sleep as I get up at 2am to cath. I could probably start training my bladder by getting up later, but I woke up too many times with a wet bed to try that just now.

Hope you get things figured out soon.

[springchange09]

mcferguson, on Sep 30 2009, 12:43 PM, said:

You said your husband's spasms happen when he is getting into bed. Do they last a long time? I get the same spasms, but mine are over in about 20 seconds and I am not on any Baclofen. If the spasms happen only once a day, I'd ask the neurologist if a different medicine might help.

As far as the leaking bladder, I had the same issue until I upped the Oxybutynin to 15mg when I was 7 months post injury. I haven't had a leak in about 3 months, although my urologist said it takes about 1 year for the bladder to settle down. I still have not had a complete nights sleep as I get up at 2am to cath. I could probably start training my bladder by getting up later, but I woke up too many times with a wet bed to try that just now.

Hope you get things figured out soon.

[springchange09]

Thanks so much to all of you for the fabulous feedback! I got so excited to hear all of your stories and it gave both my husband and I such a boost! Just knowing others out there are dealing with the same challenges is, weird as it sounds, comforting!!! It was so crazy after his accident, how no doctor or therapist ever discussed with us what living with SCI long term, would be like. It's like they stabilize your back with surgery (with no neurological follow-up), prescribe you medications (through the re-hab doc who is not a neurological specialist), give you a little in-patient rehab (nothing like it used to be years ago), and kick you out the door. You're left to try and figure this out on your own. I am so grateful for living in a time where we have access to the internet and websites such as this. Your feedback will help us to ask more intelligent, pertinent questions of the Doc's. So,,,,we have finally decided to get more ascertive and push for a neurologist to see him. Also, we have decided to get him into a urologist for a baseline analysis. We just have to help him obtain a better quality of life! Thanks again to all of you. God Bless.