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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. In the past I have tried Trazodone, which only helped for a short time. Since then I have been diagnoised with Idiopathic hypersomia. Which basically means that no matter how much I sleep, I am still very sleep deprived. It is very disabling. The only thing that helps me is swimming. It makes me feel more alert , and I funtion better. I have to be careful though. I do warm water exercise...just stretching is the best. Two much exertion can just overstimulate me, and then I can't sleep.
  7. I have always benefited greatly by doing water exercise. Not arobic type water exercise, but gentle movement like the breast stroke, or side stroke. I also take yoga type warm water exercise. This has helped my quality of life more than any medication. I also go for walks. The recombent bike was not noticeably helpful for me. If anyone feels uncomfortable going to a regular gym, you can join a hospital based gym/pool. That is what I always do. They usually have a warm water therapy pool, that is great for gentle exercise. You just need a Dr's note to join.
  8. I think this illness requires self monitoring, and that is ok.. I have heard the expression, " don't let your illness define you" but it does define you to some degree, wether you like it or not. For me, it is a full time job, trying to keep a healthy balance between living and taking care of myself, so as not to get worse. I have been ill since I was a child, but became fully disabled at the age of 42. I am now 60. It was a gradual decline. I think being a single parent with a lot of stress probably didn't help . Anyway, when I became disabled and could no longer work. My brain fog and exhau
  9. I get great benefits with gentle swimming, long walks and warm water therapy ( exercise) . I've had to accept that aerobic types of exercise are just going to make me ill.
  10. 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.
  11. It would make sense.... .I don't gasp for air very often either. I guess most of the time I am not aware. I was surprised to find I had central sleep apnea. Apparently it can lead to a stroke or heart failure...so getting a sleep study would be wise if you are dealing with serious fatique. It needs to be treated.
  12. Nymph..... Yes, I have wakened gasping for air, and my heart races occasionally. I have had disabling fatigue for years, and that led me to having a sleep study. Do you have a fatigue problem?
  13. I have been diagnoised with Central sleep apnea.( apena resulting from brain not regulating breathing properly) Since Dysautonomia is a malfunction of the autonomic system, and breathing is part of it's functions, then would it be possible that this apena is a result of having dysautonomia? Anyone dealing with this?
  14. Thanks for sharing Sara.... It is complex stuff, but the jist is that studies have not yet confirmed that these treatments are the answer.
  15. Little Blue Jay.... The TVAM procedure stimulates nerve fibers, which causes increased sympathetic functioning ( reinvigorates ANS) So everything related to autonomic dysfunction is improved with better functioning. They mention, chronic fatique, cognitive impairment, thermal intolerance, waking headaches and bladder/bowel dysfunction. And others....not listed.
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