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About Suds3630

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  1. Oh, one more thing, I had a 3 1/2 hour shaking episode last July. It wasn't painful, it looked like a Parkinson's episode, jerking, tremoring and crazy blood pressure changes. I haven't had one since.
  2. I get the breathlessness all the time. It's like I'm not getting enough air, like its been sucked out of the room. If I put a fan in my face it helps immediately! Again, it's like I can't get air, no matter how I breathe. My husband just looks at me when I flip the car vents on high and stick my face in front of it, lol. Yoga makes things worse for me, ( hands over head, head down, deep breathing,). also, I can no longer wear a strapless bra, the pressure on my rib cage triggers this shortness of breath episode. And of course hot weather and eating too much triggers shortness of breath.
  3. YES, as well as hot bathrooms while trying to use a hair dryer. Also no more hot tubs or saunas!!
  4. Chiro.. Has been great!! I never had faith in them and didn't want anyone to crack my neck. I finally went in desperation, she was honest and said I'm not sure I can help you. I didn't want her to crack my body, she used an instrument that is like a small rubber hammer, she hammered the base of my skull and I am telling you what.......miracle. I go back when migraines start and it always fixes me for a month or so. No more daily headaches!
  5. This is interesting.....I had never thought of wearing a vest. If I wear the coolie neck scarf it seems to help tremendously, I learned that when I use to ride my motorcycle. I thought one needed to cool feet, neck, head , back of knees and wrists in order for the body to cool down. Feet is my key!! I've been known to slip ice cubes in my shoes while I'm sitting at a restaurant
  6. Shopping is very difficult for me, especially if I have o reach high and low on the shelves. Yes, pressure changes really effect me. For me a A BP of 104/70 would be telling me my next BP reading will be even lower. I was told , for me, when it is that low, to continue on with life but don't decide to expend a ton of energy at that time ( exercise, going or a walk, run errands etc..) as it will continue to decline.
  7. Sorry it's taken me a bit to get back, I took 2 beta blockers a day, one a.m. , one p.m. I didn't get anything specific about tapering off. I just went to 1 pill a day, for 3 days then quit, my idea because I wasn't told otherwise. I seem to be feeling better but thought that was due to cooler weather. So maybe it was temporary and due to rebound. The fact that I never had high heart rates before would make sense. Alex, your comment is exactly what I was thinking. She kept watching the monitor and the fact that she reported heart rates and BP in her report meant she captured them, so I have no idea why she couldn't get it when I fainted, unless its a timing issue and she might had had to "mark" the readings at the exact moment of the faint, but couldn't because she had to walk away from the monitor. Do you think if I went to the hospital where they did the testing they would have more than the 2 paragraph report I was given? It was probably 3 years ago. My tremors started in my right hand, and now both, it only happens when they are at rest. I'm now on Sinmet and while it has helped tremendously with body rigidity, balance and restless leg . it has not helped at all with shortness of breath , heat intolerance or not being able to stand. I have many many other symptoms but not being able to stand for very long is my main concern as it is what is limiting my quality of life. The swallowing problem started around July. The study showed weakness on the right side of my throat and a timing issue. It's not severe but they sent me to therapy because they said if it is due to problems with the nervous system it could get worse.
  8. Wow, I bet that's it, I haven't checked my stats since. I'll do that. I was encouraged to talk during the tilt, she wanted me describing my "feelings". Her husband should NOT have been there!! She said she had to run over and hold me up so she couldn't capture the rates when I actually fainted?
  9. Naomi, that would answer my question, ( My understanding of POTS is that the tachycardia needs to be sustained and happens in the absence of orthostatic hypotension). I definitely have orthostatic hypotension! The longer I stand in one place, the worse I get! I failed the tilt test. It was a miserable test, I resisted the test for a long time, I hate fainting and couldn't understand why I had to "prove it". If I can share my tilt test, here in my small town here it is: I get strapped in, tilted up and in walks the technicians husband. He is a volunteer at the hospital and had just had a colonoscopy and was waiting for her to drive him home. He begins chatting with me, asking symptoms, picks up my chart etc... I wanted to tell him to leave but was busy feeling like crap. In the meantime I am rolling in and out of naususness. He eventually walks out. I ask the technician if I can loosen the straps a bit because they are pushing on my stomach and chest making it hard to breath, she says ok. Then out of desperation, I'm holding a plastic vomit bin, I say to her, if u just tilt me all the way up I promise ill faint. So she does and that is the last thing I remember. When I come to she says, wow, that was quite a show, you threw the pan across the room and were jerking all over the place, and because you loosened the straps I had to support u up until you quit moving. She couldn't capture my heart rate at faint. Her report stated she couldn't capture the reading, the last she had was 90/60 heart rate 68. Because my heart rate never went into tachycardia my dr. Said it wasn't POTS. He put me on fludrocortisone , later beta blockers were added because the holter monitor recorded irregular heart beats. I get stabbing chest pains, palpitations that go into my throat making me temporarily feel like I'm choking and going to black out. My muscles have atrophied over the last 1 1/2 years so my neurologist suggested I go on a beta blocker break to exercise (since my hear rate wont rise). Since I've been off the beta blockers my heart rate zooms up very high, it has never in my life done that, that's why I was wondering if maybe it was POTS. I felt the orthostatic hypotension/ autonomic failure/ neurocardogenic syncope label he gave me fit, but I have lately developed weakness, resting tremors, body rigidity and dysphagia, so he thinks the dysautonomia is heading into Parkinson's or parkinson isms. He put me on mirapex and it took care of the rigidity, and restless leg and my feeling of being unbalanced, but has done nothing for my main complaint : not being able to stand without shortness of breath, fainting, heat intolerance,& headaches, Sorry for the long post, I haven't had anyone to talk to that has any idea what it's like to live in a body like this,
  10. Thanks for your responses. My neurologist feels its a dysautonomia just not sure exactly which one. He says as time goes on, it will become more apparent and because of health insurance policies perhaps I don't want an official diagnosis. I have a very difficult time standing, I feel my quality of life has so diminished. I sold my motorcycle, I quit playing golf, if it is warm outside I can't push my granddaughter on the swings, shopping is difficult if I have to stand in line, we sold our ski boat because of heat intolerance and replaced it with a pontoon boat with a giant shade cover. I'm now wondering if its POTS, since going off my beta blockers ( neurologist want me off for a few months so I can exercise). I kept telling him cardio exercise makes me sick, he thinks its the beta blockers?) my heart rate goes from 56 lying down, to 152 standing up, but then settles down after a few minutes, but then my blood pressure falls after 4-5 minutes and I have to sit down or ill faint.
  11. Hello, this is my first post. I've been diagnosed with orthostatic hypotension/neurocardogenic syncope/autonomic failure by my cardiologist. Over the last year I have developed tremors and dysphagia, so now my neurologist thinks I'm presenting as early Parkinson's? I'm wondering how many members here also have tremors and difficulty swallowing?
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