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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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What is going on?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › POTS › What is going on?

  • This topic has 3 replies, 3 voices, and was last updated 6 years, 11 months ago by skboren.
Viewing 4 posts - 1 through 4 (of 4 total)
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  • February 22, 2016 at 9:02 am #974
    bugbytes333
    Participant

    I’m noticing tremors and shaking going on now as well as weird movement sensations when I’m laying in bed. Rocking twitching. .. I feel like I’m in a boat. There is this dizziness all throughout my body. My arms are shaky as if someone scared me.
    I was not diagnosed hyper pots but I bet I have it. My bp goes high when standing.
    I hope this is just a overload of norepinephrine adrenaline etc.

    February 22, 2016 at 1:40 pm #5888
    Dr. Diana
    Keymaster

    Although none of us can tell what exactly is causing this (over the internet), I remember going through episodes similar to what you describe that were likely high intracranial pressure (corking at the top of my spine). Mine gradually dissipated after being on Diamox. Looking back, we can see how I had pressure on my brain stem contributing to many of my POTS symptoms. Those episodes were horrifying but early on, I was fairly functional between episodes (this changed later — the episodes were less intense, but my functionality between episodes also declined). After the episodes, I was a mess — bad trembling, weakness, etc for a couple of days. I’m so sorry you are going through those but I hope others will pop on about their episodes… 🙁

    February 23, 2016 at 7:12 am #5892
    Barbara
    Participant

    Quick response, this was my experience of night-time muscle reactions:-

    http://prettyill.com/forums/viewthread/165/#914

    Dizziness:

    http://prettyill.com/forums/viewthread/139/#1387

    February 26, 2016 at 8:05 am #5894
    skboren
    Participant

    I don’t know that it’s any consolation but I experience the same things. Try sleeping elevated, either in a recliner or on a foam wedge, or elevate the head end of your bed by putting things under the top two legs. That helps me reduce the shaking significantly.

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