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Ckitz

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About Ckitz

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  1. PISTOL, I actually have a cooling vest that I wear in the summer here. Looks like a safari vest. You wouldn’t believe all the comments I get. ...are you a safari guide, are you wearing a bomb vest, do you have a back problem, are you a reporter, etc...so funny. Anyway, it keeps my stomach cold, but I still get very hot especially in my face and still sweat. I also still get sick from the heat, so I feel it just doesn’t work. Thanks GREEN...for sharing your thoughts. I do think a place like CT would be better for me. I think any kind of weather change can cause problems
  2. Hi, I am wondering if anyone with low tolerance of heat has found that living in a cooler location creates a better quality of life with Dysautonomia. I have lived in West Palm Beach Florida now for around 11 years. I am 65, and have had Dysautonomia all of my life,but has gotten worse as I get older. The heat makes me a prisoner of my home. Even the winter is mostly too hot. I suffer so much outside, and miss going for long walks. Sometimes I think maybe I would also be intolerant of cold, but the cold would not dehydrate me and make me nauseous. I am here because my son lives here, and I l
  3. ANCY......Thanks so much for your input. I was getting frustrated. I got scared I was going to have a heart attack, but when I think of it ,I have had so many attacks, I would have had one by now. Keeping a balance is hard. I have been going for long walks and I have a feeling this is causing my spikes. I need to keep a BP record again. I hate seeing someone so young dealing with this....my heart goes out to you.
  4. You are right, I need to start keeping a record again. One doctor , awhile back,said my monitor might be off, so I did research on a reliable monitor and bought it. I still got the same high numbers. I take a beta blocker. I just wish I knew what I was doing to cause it to go so high. Maybe just being in a standing position ( walking) too long.
  5. I was diagnosed with NCS after a tilt test when I was in my 50’s., I have been ill since childhood with Dysautonomia and on disability since the age of 40. I suspect I have POTS despite being told I have NCS. I don’t go to a doctor much because they don’t know what to do and I have limited income. I am disabled because of my Dysautonomia.. The last three years I have had a new problem with my blood pressure. Resting, it can go up to 160/ 116 or more, it can also be normal. The bottom number tends to stay in the 90s or 100’s...The few times I have seen a doctor...my BP has been normal, so they
  6. I deal with Miclonic jerks also. They can be quite violent at times. It can be in my chest, shoulders, neck and sometimes in my throat causing me to make a verbal noise. Sometimes it is just a couple jerks...other times, on and off all night. I find that strength exercising can cause it to be worse. Swimming is the best thing for me.
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