??POTS

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Hi - I have a lengthy story of being "ill" since Jan 1.  It started as a possible pneumonia which is what they treated me for but I never got better with abx or steriods.  I then had a UTI with a different abx.  I had scans and xrays and the only thing that showed was inflammation.  I then developed this episode of what I call a "rage".  I had dry eyes, facial flushing, hives on neck. freezing then hot sweats, palpitations, tingly hands and feet, headache, dizzy, felt faint, burning skin, no appetite, difficutly swallowing, runny itchy nose, tingly lips and nose, high heart rate and severely high BP.  All this was new I also have weird feeling inside like I feel a vibration inside like a phone is in my pocket on vibrate I almost feel my insides moving.  Very weird. Anyhow my hormones showed pre menopause and that was the only test I had that was abnormal.  I had zillions of tests also.  My BP is still very high and I am on two meds for it.  I still have episodes of shaky, tremors, dizzy, vibrating feeling, I also get this weird feeling in my left abd area like when I breath in it is almost like my stomach growling, headache.  My pressure still 150/88 ish when this happened.  I have sore muscles, joints, bones they vary day to day.  I just feel awful.  I was referred to the mast cell site and I am waiting to see a rheumatologist and on the mast cell site they said possible adrenergic POTS.  Just looking for others thoughts.

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  • Posted

    does your heart rate go down to normal when you are lying down? Are your symptoms alleviated or lessened by lying down? I believe this is a defining feature of POTS but of course ask your doctor about it. It can't hurt to ask to question. 

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    • Posted

      I have only taken my pressure while sitting. During this "rage" the symptoms were constant. But I still have the high BP

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    • Posted

      my understand of POTS is that it is a consistently high heart rate while standing but normal heart rate while lying down. I don't know much about the adrenergic form. I have low blood pressure. I would just lay down for 10 mins or so and then check your heart rate and compare it to when standing. I believe the diagnostic criteria for POTS, not sure if it's differnt for adrenergic, is that from lying down to standing your heart rate will increase by 30 or more beats per mninute, or go above 120, within 10 mins of standing and remain high. You really should ask a doctor about it though. They can run tests to check if you have POTS. much better to see a doctor than try and diagnose yourself or have someone do it over the internet. 

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    • Posted

      I am going to see a dr. It's just the appointment is far out due to hard to get into. I am not having internet diagnose I'm just trying to see what people think. My primary dr. Suggested mast cell but he doesn't know much about it so referred me out. I joined a dec book page on mast cell and in me asking questions they said sounds like POTS. My question was:

      I see a lot of people have low blood pressure with mast cell does anyone have high blood pressure?

      And one reply was sounds like adrenergic POTS and referred me to a Facebook page but I also use this forum so posted here. Just trying to see how others feel and symptoms while I'm waiting for my appointment. I have never had high blood pressure I've been to my dr weekly since January 1 for suspected pneumonia bp was perfect then boom that rage started with high BP and the bp remains high. What is being told to me by my dr is possible mast cell from possible pre menopause and hormone change and the mast cell said mast cell and POTS go together a lot. Thanks for the info.

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    • Posted

      Not sure. I am on a beta blocker for my bp so that lowers heart rate significantly. I'm on a pretty good dose too. My heart rate was really high prior to the med.

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    • Posted

      beta blockers are one med used to treat POTS. so then the other question I could ask then is do you feel better if you lie down? that is another defining characteristic is that symptoms typically are relieved or less intense when lying down and exacerbated by standing and sometimes prolonged sitting up. 
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    • Posted

      I'll have to pay attention to that. I really don't sit much and I only lie down if I am going to bed lol. What are the exact symptoms of POTS?

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    • Posted

      I recommend you do some research on that as it is too long a list and too varied person to person to explain here, especially as there are different types of POTS. the adrenergic POTS you mentioned, what little I understand of it, includes a rise in blood pressure upon standing. so it would be normal or at least less high when lying down. 
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