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    Sudden high bp with fluctuations.
    An_192125 posted:
    I've always had issues with low blood pressure. My blood pressure has been as low as 60/40 because I have dysautonomia. I've been taking Midodrine and Florinef for about 5 years and it's helped so much. With my medicines my blood pressure is usually around 105/65.

    But, suddenly my blood pressure is really high. I went from having my normal blood pressure with meds to having it go as high as 168/118. It's been much higher then usual for 4 days now. I've had a really bad headache since this all began and there have been times where my face and ears turn bright red. I've stopped taking the medications. I saw a cardiologist on the day it all started and had an EKG, which was normal except for sinus tachycardia (111). The doctor was talking about admitting me, but only to monitor the pressure. He had no idea what could be causing any of this. I ended up not being admitted because my bp gotten down to 138/98.

    Luckily my heart rate is now 95, but my blood pressure was 156/107 about 30 minutes ago.

    I've noticed that my bp has fluctuating like crazy. I know that bp changes constantly, but these are pretty big fluctuations. Both my systolic and diastolic pressures are changing by 30 mmHg without my moving. I will take it a few times in a row, without changing position, and its always different. Both my dad, who is an anesthesiologist and my mom's best friend, who is a recovery room nurse, have taken my blood pressure on different machines at the hospital and both have noticed it's all over the place.

    I am a 23 year old female. I am 5'3'' and 140 lbs. I get some exercise, but I have multiple health issues that hinder it sometimes. I don't think my diet is too bad. I don't eat super healthy, but I don't eat fast food or drink pop. I was born with dextro-Transposition of the Great Arteries and had corrective surgeries as a baby. I've really had no issues since the surgeries. I also have Ehlers Danlos Syndrome III and secondary dysautonomia. My aorta is slightly dialated, but it has not changed in almost 10 years (I had it checked two weeks ago). It's thought to have been caused by the Ehlers Danlos and not the heart defect or surgeries to correct it.

    I'm not really sure what to do, and either does anyone else. I've talked to my cardiologists and they are baffled. I've been worried since this change was so sudden and my health issues.

    Does anyone have any idea what this could be? Any questions I should ask my doctors? Has anyone had this happen to someone they know?

    Sorry to write so much but I have no clue what to do. Thank you!!!
    BillH99 responded:
    You might ask this over in the Heart Disease forum.

    There no experts that participate in this forum.

    Something to check, someone in this forum has periodic BP spikes and found out that it was caused by a blocked renal artery.

    And I would contact local medical schools and see if they have any doctors that specialize in Ehlers Danlos Syndrome and/or dysautonamia.

    And if not who in the country would be experts in this area.
    Haylen_WebMD_Staff replied to BillH99's response:
    Here is an organization that might be able to help:

    Ehlers-Danlos National Foundation
    1760 Old Meadow Road, Suite 500
    McLean, VA 22102
    Tel: (703)506-2892
    Fax: (703)506-3266
    Email: [email protected]

    An additional article with resources here:

    Best in health -


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