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About valiz

  • Rank
    Advanced Member
  • Birthday 01/07/1951

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  • Location
    Shenandoah Valley Virginia
  • Interests
    Quilting, handwork, reading.

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  1. I was having, what I call involuntary body jerks. I also had accompanying involuntary moan/groan at the same time of the jerks mainly when falling asleep. If I had them during the day they were less severe. The severe ones happened when I was trying to go to sleep or that transition time. Some times I just had several and other times 10-12 before I could finally go to sleep and stay asleep. As you can imagine I had terrible insomnia. After numerous times my body would quit wanting to go to sleep. That was the first symptom to resolve after I started taking Northera (Droxodopa). Unfortu
  2. Thank-you for your response, Kim. I only had Northera for 4 more days so I "bit the bullet" and ordered my Northera at the specialty pharmacy and charged it. I also contacted my Physician's office to see if there might be something else to take but I don't think there is anything in that classification. The office is looking in to see if they can get me any assistance but I doubt they can. I have been on the phone for hours at a time making calls or on the computer looking for help to no avail. I appreciate you letting me know if you have any new leads. elizabeth
  3. I'm wondering how many of you with dysautonomia have or are taking Northera caps (Doxadopa)? I started taking it 2 1/2 years ago. I has been a "game" changer for me. It has given my quality of life back in many respects. From the beginning of taking it I received assistance from Caring Voiced Coalition with the co-pay, in fact they paid all of the copay. This year they are not giving out ANY grants. They gave me names and numbers of other organizations but none of those helped me. I called my specialty Pharmacy today and they said my bill will be $2,600 some dollars the first 2 months
  4. I have that happen occasionally too. Sometimes it is in the area you describe but more often I feel it in my feet. I figured in the feet it was neuropathy. What is methyldopa? I take Doxadopa (Northera). I feels like vibrations to me when it happens.
  5. Could you update us on how the Mestinon is going as far as benefits and side effects. Has it affected your sleeping in any way? What is LDN, I am not familiar with that medication? Praying that you are having good results. elizabeth
  6. I too, had many nights of jerks/jolts when relaxing and trying to go to sleep. Besides the jerks I would make an involuntary loud groan like noise. I would startle my husband and my mini dachshund. It was so hard to sleep anyway and with this going on it made sleep almost impossible. I haven't been on this site for some time because I have been doing so much better. I started on Northera (Droxadopa) in June. It has completely stopped the jerks along with helping many more symptoms. I started out with a diagnosis from Johns Hopkins of POTS and NMH. It has now progressed to Pure Autonomi
  7. I am 63 and have been diagnosed at Johns Hopkins with POTS and NMH about 5-6 years ago. I had many symptoms starting around age 11 and had symptoms until my early 30's. Then I went through a "remission" for about 15 years, then the symptoms came back but it took years to get a diagnosis. A nephrologist figured out that might be what I had and referred me to Johns Hopkins for the TTT. I would think that people our age that have been affected by this disorder would be valuable to be studied. That is just my opinion. Remember POTs and NMH were not recognized as a diagnosis until much later
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