How do I live better with Dystonia?

Today after a week of the nightly cramps and pain I asked my movement disorder Dr for help to sleep. The Botox just isn't working well any more. It has really hit me hard that my life has become about my pain and altered life instead of the fun in life. I just feel so defeated. We will go on a cruise soon and I was looking forward to it so much. We have never had a vacation like this! I have tried so hard to dovrhe things I want and need to do. I feel like taking this med is giving up.

9 Replies

  • The pain and interrupted sleep must be hard to bear. I am concerned however that you think taking the med is giving up. With it, you may be able to enjoy your holiday. Without it, probably not. The med sounds like a good opportunity to me.

  • Try Emergen C for at least 3 or 4 weeks & see if it helps any of your pain and/or stiffness. It definitely helped mine. It has vitamins C, several B's, magnesium, electrolytes, etc.

  • Requip helps with Dystonia as well as restless leg. I have Dystonia from time to time always at night but Reqiup stops 95% of it. My Dystonia is caused i believe By the large dose of carbidopa levodopa i take, i take 18 25/100 tablets a day along with 2 6 mg 24 hour release Requip.

  • don't forget magnesium, especially before sleep every single night need to be taken. You might benefit from potassium also if you have a heart medication. Doing a massage on your legs might also help.

  • There is a dystonia expert I worked with in Toronto... He works a lot with PwP. He shows you how to reduce tremors, eliminate spasms and rigidity etc. I flew from uk and had four sessions with him. Very well worth it.

  • "I feel like taking this med is giving up"

    You mentioned "we" are going on a cruise.

    Take the meds, live your life to the full and enjoy the here and now. Taking a medication to allow you to live your life is not giving up. Its being realistic.

    Who knows what the future holds for us ?

    All the best.

  • I have great results with 400 mg magnesium right before bed I take omeprazole for acid reflux. And read it strips the magnesium from the stomach.

  • I know exactly what's happening to you. Tonight I'm having cramps so awful I can't lay down, sit for long or walk.. both legs from knee to feet just screwed suddenly and I almost collapsed. Had my hands on a walking frame and screamed for my husband. He really didn't know what to do and just helped me to edge of bed. He was asleep. In vain I tried to fall asleep but impossible . I'm back in my tip out feet screwed again making my journey pitiable and frantic to get settled before I fell. It's a numbness I'm powerless to control. I swallowed 2 x125 MADOPAR about an hour ago which is kicking in but now I have Dyskinesia. It's 1.00 am and just want to sleep. Only averaging 3/4 hrs nightly now. Diagnosed 12 years. Now waiting for the miracle and very depressed about what my life has become. My home is in a small Oceanside town in Australia with no specialist services so my GP Skypes my Neurologist. I have one in a week or 2.

    I have no suggestions as I need what you need too.

    It seems I'm going backwards and soon to need personal help. It's mid winter and I have summer clothes on as sweating takes hold too is being used ie Dyskinesia jerks. Have a local supplier for medicinal cannabis . Have experienced a few wonderful days lifting my condition to almost normal but at moment regressing.

    Im awaiting sunrise in 4 hours to start all over again my daily routine of pill popping with diminished 'on' time but more time to search the internet for a welcome positive report on PD....Xadago seems to be promising but not available in my country.

    Over and out


  • Try a spoon of magnesium in water an hour before bed.

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