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Joann

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About Joann

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    Female
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    Michigan, USA

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  1. This has been happening to me for close to two years and I still am not used to it. I wish I could say it is just POTs, like some of the posters but, I feel like I am dying/having a heart attack and try to be calm and breath easy but still wonder if one of these times it will be the end! I do not get short of breath, but I get the intense pressure below my sternum that builds and then goes up and into back. The left sided pain in neck/head, sometimes back, shouder and left arm. If it is a really bad episode my head will feel like it is going to explode from the pressure. Oh and another crazy
  2. Seattle Chris- I get the same thing you described. The blurry vision and yet you can still see. I get this more in the morning, sometimes right after I get up, sometimes a few hours afterwards. It is usually just one eye, usually the left, but it can happen occasionally the right. My eyes also are always bloodshot, but when I am flaring or this vision thing happens they get extremely red. It doesn't matter if I have gotten enough sleep or not. I have been to the regular eye doctor and they say my vision is fine and they didn't seem to care about the issues as long as I can see their chart. I f
  3. I am similar to Arizona Girl, many of the same issues. I am also hypertensive and get the head, neck pain (and pressure below sternum). I checked some things that don't happen often, but some do during extremely bad episodes or occasionally. Others are daily or very often. Maybe I should have just checked the main symptoms?
  4. I lost weight, in fact, in the beginning the doctors were trying to tell me my problems were just acid reflux and once we got that under control and I was able to eat I would be okay. They would not believe that I was having additional symptoms with activity. But I could not eat anything, even water would bother my stomach. I am 5'7" and I was down to 100 lbs. It has taken over a year but I have gained twenty pounds, this is actually about my normal weight, I have always been really thin. I am trying to gain some more because when I have flares I am unable to eat. I tried eating just healthy f
  5. Hey Jen, Glad you are home and hope you are feeling better. I asked a few of my more "experienced" Potsie friends about this and a couple of replies. One said she had heard of this happening with some POTS and MCAS patients. Another said to check out aps. The web link she gave for that was apsfa.org Several people said they either had it happen to them or some one else. So it is good your neurologist is checking it out. By the way I just got my bill for my first visit to the Cleveland Clinic, the part insurance didn't cover. Uggghhhh! I don't know when I will show that to my husband, maybe aft
  6. Canadiangirl, I have been embarrassed to ask this also. My POTS started in Sept. of 2011 and although I often am discouraged at how I am functioning, compared to before I am much better. I am also on metroprol 12.5 twice a day and also on doxazosin. I am terrified to be intimate because of this. I have the same symptoms as you, sometimes it will also feel like the area around my nose is being suffocated or I don't know how to explain it. I get pain in my upper left jaw and many of your symptoms, and it can set me back for days/weeks. I feel like I am crazy, who heard of such a thing. I had to
  7. Hi. Thanks for responding to my post. Could you tell me about your problems with bending, stairs, lifting and how you are dealing with everything.

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