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leg twitching affecting my marriage - help!!

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  • leg twitching affecting my marriage - help!!

    My twitching legs have gotten so much worse this past year. Heck, even this past week! I just don't know what else to try. Any suggestions would be wonderful. My poor husband ends up going out on the couch most nights so that he can have some decent sleep.

    The twitching isn't described so much as violent jerks, but more like a fast bouncing up & down. It can last just a couple of seconds to quite a bit longer - 15-20 seconds maybe, then the legs calm down for a few minutes before starting in again.

    Sleeping on my sides helps a little, but I will twitch no matter what position I am lying in. I don't find myself twitching during the day in my wheelchair however.

    I have tried: flexeril, requip, klonopin, and a couple of others that I don't remember. I have also supplemented my baclofen with 6mg brand-name zanaflex capsules (doc claims that the brand name capsules have no equivalent generic yet, and work better than regular non-capsule pills).

    I currently take a 50mg dose of baclofen at bedtime (plus 20mg in the morning and 20 mg a little after lunch.

    I sometimes sleep thru the twitching, and sometimes it's heavy enough that it wakes me up.

    Any suggestions would be more than welcome!

  • #2
    Have you tried eliminating all caffine from your diet? Coffee, Tea, Soft drinks, and (I hate to say this) chocolate?

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    • #3
      Umay want to discuss getting a pump which work more effectively
      "Smells like death in a bucket of chicken!"
      http://www.elportavoz.com/

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      • #4
        Several years back I started taking wellbutrin for anxiety and I started having spasms like crazy. I went back to the doctor to get something to help with the spasms and he sent me to a neuropsychiatrist. That doctor talked to me for a short time and discussed my meds. Then he weaned me off wellbutrin and onto Lexapro. He said that Wellbutrin could cause spinal seizures in some people. He was right. My spasms went back to 'normal'. So, it could be caused by a change, or increase in medications. Just a thought...
        ____________________

        "We are the ones we've been waiting for. We are the change that we seek."
        - Barack Obama

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        • #5
          Stretch before going to bed.
          Change your position often.
          Get dual mattresses?
          Not a fan of increasing your drugs till you find out what in your night routine is increasing the spasms. Could easily be rough sheets.
          Get involved in politics as if your life depended on it, because it does. -- Justin Dart

          I shall not tolerate ignorance or hate speech on this site.

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          • #6
            Hi,

            It could be many things and is not always easy to pinpoint the cause. I would start with yoru doctor who is familiar with you and then possibly a neurologist. I don't really know if the pump would be more effective for baclofen in this case. Keep us posted.

            AAD
            The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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            • #7
              Neuronton or sleep apnea, but betting on a nerve quietner

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              • #8
                hi, my suggestion is, if you could stand up (standing position) at least 45 min or 1hr just before go to bed, this kind of posture help me to reduces and eliminates the spasms for many hours.

                btw. Don't you have constipation trouble?
                Every rose has its thorn
                Just like every night has its dawn

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                • #9
                  Wow!! Thanks so much for all the input I have tried stretching before going to bed, and my husband says that sometimes I seem to spasm worse when I do that.

                  I've discussed this with my neurologist quite a few times. He's had me try quite a few different medications (requip, flexeril, klonopin, more baclofen, add zanaflex, etc.). So I feel like he has really tried most of the stuff that's out there, ugh. I didn't know if anyone else had this same issue or had any tips on overcoming it.

                  I change positions quite often. Laying on my side used to "cure" it, but now I twitch quite a bit there too. Slightly less perhaps than when lying on my back, but it's still a ton.

                  Neurontin might be worth trying. I used that for a bit when I had my shingles outbreaks, and I don't remember offhand if my twitching lessened during that time. It would be worth looking into tho since so many other things haven't helped!

                  And I might try standing upright for as long as I can before bed. It can't hurt to test it out, and it's good for me too!

                  BTW, I have secondary progressive MS and also an extensive (t4-sacrum) spinal fusion for scoliosis & flatback. Some of the symptoms of those things overlap. I'm in a powerchair for the majority of the day, tho I can still walk very short distances (i.e. to toilet) with heavy dependence on my walker.

                  Thanks again for the help, and any other suggestions would be appreciated!

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                  • #10
                    In the olden days we would try 'frogging' our legs to prevent spasticity. Bend legs at the knee with feet together, then lay each leg out flat. Not a great description, but the bent legs into reduced specificity.
                    Be sure to put some support under each knee to relieve pressure on the hips.

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                    • #11
                      Marjuana helps my spasms and helps me stay asleep to.
                      Worth a shot.
                      c3/c4, injured 2007

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                      • #12
                        Hi retto76. I have primary progressive MS and nighttime spasticity to beat the band. Frog-legging sometimes helps, as Van Quad suggests, and I find that lying on my side in the fetal position can calm it down. Liz321's idea about the double mattress is a very good one. You could either opt for twin beds, or a dual-controlled air mattress. I understand that there are some memory foam beds that accommodate two mattresses in one frame, though I have not seem them available in the US (maybe I'm just not looking in the right places).
                        MS with cervical and thoracic cord lesions

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                        • #13
                          night time spasms

                          I suffered from this for years, and the problems was always bladder related. If you haven't had urodynamics done recently, I would suggest you do so. There are two things to check out; one is a UTI, and the other is bladder pressure. I assume your injury is incomplete, if you have that much spasticity.

                          If you have a UTI, then follow your urologist's instructions in regard to anti-biotics. If you don't have a UTI, bladder pressure could be the possible culprit. This is very tricky to treat. First, empty the bladder before bedtime. Secondly, go to a SCI center or rehab that has experience with SCI and get pressure mapping for seating and positioning. For some us the nature of our injury is that the bladder is making direct contact with the cushion. Pressure builds up and can create spasticity. If the map shows red beneath the bladder, different seating, both in your w/c and your cushion can make a difference.

                          This was my experience and I was prescribed a cushion with extra gel and my seat is 18" long as opposed to the standard 16". After getting the new cushion the spasticity was reduced by 90% the first couple of nights. These many years later (which includes retirement from work so that I don't sit as many hours per day) night time spasms are no longer a problem.

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                          • #14
                            Originally posted by retto76 View Post
                            My twitching legs have gotten so much worse this past year. Heck, even this past week! I just don't know what else to try. Any suggestions would be wonderful. My poor husband ends up going out on the couch most nights so that he can have some decent sleep.

                            The twitching isn't described so much as violent jerks, but more like a fast bouncing up & down. It can last just a couple of seconds to quite a bit longer - 15-20 seconds maybe, then the legs calm down for a few minutes before starting in again.

                            Sleeping on my sides helps a little, but I will twitch no matter what position I am lying in. I don't find myself twitching during the day in my wheelchair however.

                            I have tried: flexeril, requip, klonopin, and a couple of others that I don't remember. I have also supplemented my baclofen with 6mg brand-name zanaflex capsules (doc claims that the brand name capsules have no equivalent generic yet, and work better than regular non-capsule pills).

                            I currently take a 50mg dose of baclofen at bedtime (plus 20mg in the morning and 20 mg a little after lunch.

                            I sometimes sleep thru the twitching, and sometimes it's heavy enough that it wakes me up.

                            Any suggestions would be more than welcome!
                            sorry, misfired!
                            - cherish or perish
                            - vanquish or languish

                            otherwise so neSCIent...

                            Comment


                            • #15
                              Originally posted by Van Quad View Post
                              In the olden days we would try 'frogging' our legs to prevent spasticity. Bend legs at the knee with feet together, then lay each leg out flat. Not a great description, but the bent legs into reduced specificity.
                              Be sure to put some support under each knee to relieve pressure on the hips.
                              Could someone elaborate on this? Is it similar to a butterfly stretch maybe? And when you say "lay each leg out flat" do you mean stretched out straight in front of you like you'd picture someone trying to stretch forward to touch their toes? I am incredibly flexible, but I do have a spinal fusion from T4-sacrum that prevents my spine from bending. It's nearly impossible for me to sit up straight on the floor with my legs straight out in front of me.

                              Thanks for all of the good ideas! I had a hugely busy weekend (my bday and our annual MS Walk which I'm on the planning committee for!), so I didn't try these things yet. I will get started on them this week and hopefully report back some positive news!

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