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Clonus is making my husband CRAZY!!!

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  • Clonus is making my husband CRAZY!!!

    My husbands clonus in his feet is making him crazy. He is completely sleep deprived. Its been going on for about 2 years now and it starts at night usually; sitting in the lazy boy and sitting in his chair but it really gets him when he lays in bed. I've counted about every eight seconds they spasm. Wakes him up all night just as he dozes off.

    He is a T 6 incomplete para 25 years post injury. He has tryed the oral medications and they just don't work (along with complications of constipation and or sleeping TOO hard and he doesn't get up and cath and then the UTI appears). He won't do the pump. His work schedule is constant along with our 5 children under the age of 17 responsibilities; there is NO time to go to therapy! He would if it would help, but to be able to do at home would be a huge help!!! He lifts weights, rides bikes, skis and is in great shape. He only takes one medication for bladder control.

    Please Please Please any suggestions! Has anyone tried acupuncture? I've tried to stretch his legs, and it seemed to almost make it worse. He also will get in his standing frame, but that doesn't help consistantly either. Asked his doctor about botox, and he said that there are way too many muscles in the leg for that to work. I'm not buying it! The problem with botox, is he really uses the redgity in his legs to get in and out of cars, and to transfer and get dressed so he is worried about his legs being floppy if he tries the botox.

    Its really awful for him and is messing with his head( Does anyone have any suggestions!!??
    Never be bullied into silence. Never allow yourself to be made a victim. Accept no one's definition of your life; define yourself.
    Harvey Fierstein

  • #2
    Standing and stretching my ankles is the most effective for me. How much does he stand?

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    • #3
      I have good luck with magnesium oil.

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      • #4
        Sometimes about 20 minutes a day. Should he stand longer?
        Never be bullied into silence. Never allow yourself to be made a victim. Accept no one's definition of your life; define yourself.
        Harvey Fierstein

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        • #5
          He should be standing at least an hour a day. In order to stretch my ankles, which helps to maintain range of motion, I stand on wedges <, and also lean forward to stretch my hamstrings. Really helps with clonus in my ankles.
          Last edited by Jim; 03-24-2015, 11:19 AM.

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          • #6
            Sorry for the bad clonus, but I jus got used to it. Mine kick in from afternoon on into the night. I take Restoril at night to get 4-5 hours of sleep. There aint a silver bullet for this one. Maybe get a FES bike or similar leg exercise motion to exercise the legs more may help, but really, once they start bouncing, very tough to calm down till the morning. Honestly, hot showers were the only thing I found that calmed the happy feet consistently.

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            • #7
              Hi guys, if this helps... I can get rid of the clonus thingy when i lift my foot off the ground and which stopsd the clonus, then rest it reeeeaaal slowly so that my ankles don't notice what's going on. I know this is an issue in bed, maybe stick the foot out of the duvet and elevate it at the lower legs so nothing touches it... but this may cause foot drop, so caution is advised.

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              • #8
                Have you tried a small dose of Valium? I take 10mg each night before bed and it was the best choice I made for getting some sleep and calming down clonus and the sniper spasms. If I don't take any for a couple of days my clonus gets real bad and any slight bump in my chair will set it off.

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                • #9
                  I have had similar results as Tman. Baclophen really didn't help but a couple of those nice yellow pills before bedtime have been a life saver for me.

                  Originally posted by Tman9513 View Post
                  Have you tried a small dose of Valium? I take 10mg each night before bed and it was the best choice I made for getting some sleep and calming down clonus and the sniper spasms. If I don't take any for a couple of days my clonus gets real bad and any slight bump in my chair will set it off.

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                  • #10
                    Spasticity drugs help more with spasticity (hypertonicity) than they do with spasms (like clonus). Clonus is often triggered by pressure on the sole or top of the foot, so be sure that heel boots and sheets are not pressing there in bed.

                    Proning (laying on your stomach) is a great way to inhibit and control flexion spasm, spasticity, and clonus. Just be sure that the feet are off the end of the mattress with no pressure on them at all when proning (and kept in a neutral position). Certainly worth a try. 1-2 hours daily is great...all night is even better, and if properly positioned prone, turning is not necessary.

                    Standing is recommended at least 1 hour daily.

                    Valium can help some, but most studies show that its most significant effect on spasticity is making the person using it not care as much if they have spasms/spasticity...

                    (KLD)
                    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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                    • #11
                      Don't ask me why because I can't explain it but the best thing I have found for my spasms is percocet. I take 4 throughout the day and they keep my spasms under control better than any other med I have tried, and I have tried almost all of them.

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                      • #12
                        Originally posted by SCI-Nurse View Post
                        Proning (laying on your stomach) is a great way to inhibit and control flexion spasm, spasticity, and clonus. Just be sure that the feet are off the end of the mattress with no pressure on them at all when proning (and kept in a neutral position). Certainly worth a try.

                        Valium can help some, but most studies show that its most significant effect on spasticity is making the person using it not care as much if they have spasms/spasticity...
                        (KLD)
                        I probably should have added that I have gotten to where I sleep prone the entire night. One pillow to elevate my left or right side at the shoulder and another at my head to make a pocket for breathing. I had never heard that about Valium. I intentionally cycle off every now and then so that I can keep the dosage the same. I can tell a huge difference after two days of not taking it. Baclofen made me feel terrible. I think I've been on Valium at night for about 5 years now with consistent results and no side effects. Cheap too, my 90 count diazepam bottle costs me less than a dollar.

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                        • #13
                          I have had good results with reduced night time spasms with 4AP, maybe that would help with clonus too. I never had this problem when I was walking full time with crutches but after a few years in a wheelchair it has become an issue keeping me awake at night.
                          "The prospects for a cure today are better than they were yesterday."

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                          • #14
                            So, what actually is "clonus"?
                            I get this thing where my legs "bounce" on the footrest of my wheelchair every once in a while. Then sometimes when I lay in bed, my leg will start shaking or just my foot will shake. Are those a result of "clonus"?
                            I also get this thing where my leg will raise up and rotate and my foot will curl inward and this at times can be painful. Looking at my leg in a position where it is all crazy and not normal, I would imagine would hurt like hell id I had feeling. Freaks my kids out, they say all the time that a leg doesn't normally bend that way. I'm guessing that is more of a spasm?

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                            • #15
                              Clonus is a reflex that is a spasmodic alternation of muscular contraction and relaxation., usually seen in the calf muscle reaction when the foot is sharply bent upwards towards the thigh and held in mid position.

                              (KLD)
                              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.

                              Comment

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