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    • #17256
      Ann Thomson
      Participant

      My husband has been having horrible leg jerks,spasms or whatever you call them. He is taking Baclfen but it’s not helping. He hasn’t slept in 2 days. So, I was wondering if anyone has any suggestions on this. I feel so helpless and useless.
      Merry Christmas, Happy Holidays to everyone on this wonderful forum.

    • #17260
      Delbert Mitchell
      Participant

      Like your husband, I suffer with leg spasms, but I also suffer with spasticity that keeps me awake at night. It’s hard to mentally relax in bed so that your body can relax. Baclofin helps, but I still have days where it’s difficult to sleep. What I have done (I don’t know if it’s healthy or not) is, I take an Aleve capsule occasionally when I have these difficulties. I take the Baclofin pill a couple of hours before bedtime, then the Aleve just before getting into bed. The Aleve relaxes my nerves and muscles. I don’t do it all the time, only when I have anxiety over not getting to sleep. Check with your doctor for any issues mixing prescriptions and OTC medications.

    • #17261
      Kate busher
      Participant

      Our neurologist prescribed tizanidine when my husband experienced this problem.  It resolved the issue.

    • #17268
      Wayne Zatarain
      Participant

      I understand the more Baclofen you take the more muscle strength you lose, muscles get weaker.  I find the fasciculations come and go,  stronger for a few days than less. A single Baclofen once a day doesn’t seem to do much.  Aleve some good, have had no problems with both, but who’s counting.

    • #17269
      Gideon
      Participant

      Dear Wane

      Taking Baclofen don’t make you lose muscle strength.

      My wife taking it every four hour ,+ 900mg of Gabapeatin 3x a day .

      Side effects of baclofen :

      <b>Drowsiness</b>, <b>dizziness</b>, <b>weakness</b>, <b>tiredness</b>, <b>headache</b>, trouble sleeping, <b>nausea</b>, increased urination, or <b>constipation</b> may occur.

    • #17270
      Ann Thomson
      Participant

      Thank you for your suggestions. I am going to give him Aleve PM tonight.

    • #17273
      Hwaida H
      Participant

      Hi Ann

      Sorry for the delayed reply. You can try Magnesium cream . It is fast absorbed and can help for cramps. Also, make sure your husband is well hydrated. You know ALS  patients tend to lose water through drooling.  Also of natural supplements , GABA and Taurine powders  are good options to supply routinely.

      Wishing you and your husband the best .

      Enjoy the holidays

    • #17275
      Jeff Derby
      Participant

      I also get Leg nerve twitching at night when I lay down. My pharmacist suggested taking 1/2 a clonazepam with a baclofen….I’m  not a doctor so please do your own research but this combo I use when the twtiching is really bad, it does help..

      also use CBD or essential oils at night before laying down…,  also would say it helps a little…have tried magnesium life the brand “Calm”  again it helps a little. I believe the trick like everything with ALS, it is the cocktail of treatments, drugs,supplemments that help you…

      Stay safe

      Jeff Derby

    • #17280
      Duane
      Participant

      I’ve had a bad experience with baclofen, so I never use it.  I use Flexeril occasionally which helps me relax, especially before sleeping. My legs are very spastic.

    • #17287
      Owen
      Participant

      I would recommend talking to your doctor about trying Tizanidine (Zanaflex). My wife takes 4mg at bedtime, and another 4mg in the middle of the night when she wakes up to go to the bathroom. I would also look at either OTC sleeping pills (e.g. Aleve PM, melatonin), or prescription pills like Ambien- something to help him stay asleep even though he’s having spasms. Lastly, you might also want to consider trying something like Xanax or another b<span class=”aCOpRe”>enzodiazepine. My wife takes them occasionally to deal with anxiety, but they have the added benefit of helping her sleep very soundly, and she wakes feeling relaxed and rested. I haven’t seen much about Xanax and ALS, but considering how much it seems to help her at night, I think Xanax could merit being suggested by doctors.</span>

      If we’re talking about cramps and not just spasticity, you can try a potassium supplement, and/or magnesium and Vitamin E.

    • #17292
      Kevin
      Participant

      My doctor, a renowned neurologist at the Cleveland Clinic, prescribed me Mexiletine for my leg cramps. It has really helped me.

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