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Is there even a medical name for this?

Discussion in 'General Symptoms' started by taniaaust1, Mar 22, 2012.

  1. taniaaust1

    taniaaust1 Senior Member

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    Ive known for ages (since a 24hr monitoring was done years ago) that my BP goes very low into hypotensive ranges at night when Im asleep.

    Anyway..yesterday I was taking my BP while in bed while wearing support stockings as I'd planned to take it on standing too as I was trying to see if POTS would appear on monitoring with stockings on.. so I took a couple of readings in bed.. then I suddenly had a bout of bad breathlessness happen (almost panting to breath) so took it again when laying, only to find my dystolic BP had suddenly ditched from 88 down to 62.

    I took it then yet again to try to double check that a sudden ditch had occurred (next reading it was at 65). So it certainly had ditched and obviously that ditch made it hard for me to breath. This symptom with sudden BP drop, lasted only for 1-2 minutes. (I didnt take my BP again IN BED, I got up but by then the breathlessness breathing issue had stopped).

    (It showed up POTS as usual when I took it when standing but this time while I had the new support stockings on.. so I wonder if they are going to help? (maybe someone with experience with this can tell me? Does your POTS still show up on monitoring when wearing support stockings, if you are a person the stockings help with your POTS symptoms?)

    One thing different this time is the hypertension was starting to happen AS WELL as the POTS, Ive never seen them happening AT THE SAME before on the monitor and had developed a theory that my body copes with its issues with getting just one or the other of those things on standing. I didnt continue standing longer to see me go into full bad hypertensive state as I was a bit upset by what I was seeing occuring with the stockings on.. I dont know if its a coincidence or what)

    I used to for first years of ME and even before the ME suffered from hypotension (couldnt stand suddenly or I'd collapse and I'd always have low BP). I thought I wasnt getting hypotension causing me any symptoms any more, and I had no idea at that my BP was ditching down so suddenly when Im laying.

    Now Im wondering what on earth this issue is called?.. the orthostatic hypotension definitions everywhere define it as ditching when standing.. not ditching when laying. (I have orthostatic hypertension when Im standing).

    Anyone know what sudden ditching BP when laying is called then? (Ive no idea if Ive had that issue all along but havent noticed it before.. or if it was triggered by having my support stockings on when I layed down.

    the other thing which appeared to happen when that was going on.. my heart wasnt properly beating, it wasnt showing that heart pulse thing properly on the monitor.. it was like doing half beats. I dont think Ive seen it do that before.. it went into tachycardia but with half beats (like it wasnt squeezing properly..the black heart which shows on my monitor was coming in fast but faded as it wasnt coming in fully instead of going black) instead of the proper full tachycardia POTSY beats I usually see ..

    (I havent told my new specialist yet that I have any BP issues .. just told him last visit about the POTS and hence then took up his recommendation of support stockings for that.

    He's (which is quite sensible as it stops us both from being overwhelmed in an appointment), told me he doesnt want me bringing up too much in an appointment so Ive not told him about my more complex BP issue for the time being.
    Im starting with him on the easier things and things he's more familiar with so we can build a good doctor/patient relationship before I hit him with the weirder stuff).

    I really really wish I could see Dr David Bell. Im a little scared im going to try to treat my case of POTS wrongly or that a doctor could treat my case wrongly with not understanding all the issues I have and hence end up in serious trouble with the BP and heart issues. I dont know any faith in others knowing about orthostatic hypertension, narrowing of pulse pressure and all the rest I also get happening.

    Im actually worried that my autonomic dysregulation may end up killing me, its so terribly stuffed up. (new specialist didnt suggest a tilt table test but just took me on my word that I have POTS).
  2. hurtingallthetimet

    hurtingallthetimet Senior Member

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    hello i dont know alot about this issue...but i wanted to say that i hope you are feeling better...i dont check bp at all...have been checked befroe by doctor laying, sitting and standing...it dropped fast and was given fluids..told was probrably dehydrated...

    again i hope you are feeling much better maybe you should call your doctor...i know you said you didtn want to bring up too much but if this concerns you then as your doctor he should help you...these illness are very complex and have a million illness that follows it seems....

    can you emial the doctor you said you wish you could see? maybe if you just ask it in a general question way....not in a way that your wanting a diganosis etc...maybe he will email you back with his thoughts on it?

    just trying to come up with ideas...
  3. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    sorry to hear your doctor just assumed you were dehydrated at time and didnt retest. I think doctors do far too much assuming of things instead of retesting and actually checking things.

    that is a good idea and i have been considering doing so. Probably will end up trying to do that.

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