Discussions By Condition: I cannot get a diagnosis.

Cant stand without non stop blood pressure

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: Anonymous
  • February 10, 2011
  • 06:17 PM

For six months now have been flat on my back. When I stand my blood pressure keeps rising without stopping until I black out (one minute max).After ten days in the heart ward the hospital says my heart is fine and don't know what is causing it. They first said it was the condition called POTS but after seeing a neurologist they said it was the opposite of falling pressure associated with POTS. Since this time my doctor has given no guidance or help I just go every where by gernie if I have to leave the house.The doctors in the hospital said they don't know how to treat the condition and said I would have to be sent to the Mayo clinic or John Hopkins. My insurance has refused doing this and here I am stuck. What government agency can I call to make them send me to a proper treatment arena. Thanks for listening!

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  • I am sorry not being able to help with the diagnosis, but would you be able to walk with help of a walking frame for children? I'm thinking of a low frame, so that you can bend forward as much as possible. Could that be a temporary solution? I wish you best of luck!
    Felsen 510 Replies
    • February 10, 2011
    • 09:10 PM
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  • I am sorry not being able to help with the diagnosis, but would you be able to walk with help of a walking frame for children? I'm thinking of a low frame, so that you can bend forward as much as possible. Could that be a temporary solution? I wish you best of luck!I experience the opposite--I black out sometimes when I stand too fast because my Blood pressure (BP) goes too low. In case it helps, what you described (stand up, increased BP) is called "orthostatic hypertension". Are they having you take anything for high BP? There are tons of factors that can affect BP (vessel dilation, blood volume/thickness, heart rate, pump strength)--have you been told any more about which it might be?
    Anonymous 42789 Replies
    • February 11, 2011
    • 08:23 AM
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  • I am sorry not being able to help with the diagnosis, but would you be able to walk with help of a walking frame for children? I'm thinking of a low frame, so that you can bend forward as much as possible. Could that be a temporary solution? I wish you best of luck! Probably wouldnt help the original poster as she needs to keep her head equal with or below her heart level if on feet or will have the orthostatic issue coming in anyway.
    taniaaust1 2267 Replies
    • February 12, 2011
    • 04:17 AM
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  • Hi pinetree. Im a POTS patient too. What many dont realise that with POTS one can have other kinds of orthostatic BP issues too coexisting with the POTS.. like you, my BP goes up sky high when im up on my feet (I know of 3 others with POTS in which this happens to too.. at the CFS/ME sites but in your case your issue seems to be solely autonomic dysfunctions). I'll try to find my old posts here on this for you to read and put the link in another post to you if i can find them). POTS stands for postural orthostatic tachycardia syndrome.. and can be diagnosed by what the heart is doing hence the tachycardia in the name (increase of 25? 30 beats per minute when standing after laying, this increase may happen immediately or take 10 mins to happen). The diagnoses of this has nothing to do with BP (thou often does affect BP). So firstly.. i suggest for you to get your heart rate taken from laying to standing to see if it is increasing this much.. if so.. you DO have POTS and may be helped by POTS treatments if that is the case After you've worked out that you need to work out if you have a second autonomic problem going along with this POTS. A low BP has never been recorded for me when standing (thou my BP is dysregulated and in my case goes low when im sleeping but to standing... it can shoot up). There was a specialist (Dr David Bell in America) who had a good article of autonomic nervous system dysfunctions including POTS and including the various different kinds of BP problems one can get from autonomic dysfuctions (he seems to be specialising in that area). Ive posted links at this site before to his article on these little known conditions but unfortunately the article is now gone. If you have one autonomic issue, it makes you heaps more likely to have another of these issues due to this system which governs control of things not working right.
    taniaaust1 2267 Replies
    • February 12, 2011
    • 04:33 AM
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  • I just found one of my old posts Ive talked about this a little more in depth in response to someone (at start of the thread i didnt know what the problem was but if you read more, I ended up finding out) http://forums.wrongdiagnosis.com/showthread.php?t=26179 The autonomic issue is called Orthostatic Hypertension... (in my case orthostatic dystolic hypertension). It can coexist with POTS or coexist with other medical conditions. I have complete unconscious too.. (for up to 5 mins according to friends). Tilt table testing will have me almost pass out completely just on raising the table up. Just standing talking to my sister my BP went up to 176/138 (before that I'd been sitting or laying on lounge). So research Orthostatic hypertension (there could be more online about this little known condition since I researched my issue back in 2008) best luck ps im still not being treated for it thou ive come across two people who had it who now have heart failure cause the high BP episodes place extra pressure of the heart (those their BP had been going up even higher then mine when they were standing). So do try to find a doctor to diagnose this issue and hopefully treat somehow (is there even a treatment for this BP issue?? i dont know) Im yet to find a GP still to help me with this :( :( (If i was in America, I'd try to see Dr David Bell or go to the Mayo or John Hopkins)
    taniaaust1 2267 Replies
    • February 12, 2011
    • 04:57 AM
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