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angelloz

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About angelloz

  • Rank
    Advanced Member
  • Birthday 01/28/1959

Profile Information

  • Gender
    Female
  • Location
    McLouth, Kansas
  • Interests
    Weather, my children and grandchildren, husband and K-State

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1,413 profile views
  1. To all, it has been 10 years since I began my dysautonomia issues. I am now 60. In the beginning I was fairly bed ridden. Breathing was off, sleeping was impossible as my body would jerk awake often. Odd dreams, off vision, blood pooling, tachycardia, low blood volume, going to stores and feeling off kilter, weight loss and on and on. I made trips to the Mayo Clinic, saw many physicians, you all know the drill. Slowly, things have improved. I will never be the same but most every issue has lessened in intensity. Salt and fluids are my best friends. I just wanted you to know that things can get better even when it may take quite a long time. I wish I could feel the way I was before my illness but I am so very grateful for the gains I have made. For those just starting with all of this, hang in there!
  2. I also wanted to mention that although temperature issue have improved somewhat over time, I still get blazing hot every night a few minutes after I lie down then it eases. Positional change? That’s all I can come up with. I did have a sweat test done a few years ago that showed reduced sweating on some areas of my body. Oddly, an area on my forehead that they said they see on migrainers. I have had chronic migraines for 30 years.
  3. At the beginning I had problems with temperature regulation. I would shiver and chill and go sit outside on a very hot day...then suddenly become so hot I would feel ill. This symptom slowly improved over time but still pops up now and again. Ice on my wrists for heat and sometimes a hot bath was the only thing that would warm me up.
  4. Hello all, Well this is new. I have nausea with migraines but I am having nausea every morning lasting quite awhile. Have have autonomic dysfunction for 10 years so this is new. I take tylenol daily so I am checking on that. I don't take more than 1000 miligrams in a day. Also eat a high fat diet trying to gain some weight and I don't have a gallbladder so???? But have been eating high fat for awhile. always something :(.
  5. The morning has always been the worst for me!
  6. Same here!!!! Low pulse pressure and I feel terrible but no doctor has really said much about this when I bring it to their attention.
  7. The first test for autonomic issues would be a tilt table test. Symptoms very quite a bit from person to person. I do sometimes get surges that wake me up. They give me a bit of a scared feeling for no reason. Perhaps discuss a tilt test with your doctor.
  8. I have low blood volume diagnosed through a hemodynamics test. I had this done at the Cleveland Clinic. My blood work often shows low potassium levels. This was one of the only findings I had in the beginning.
  9. I have heard that if a positional change , like leaning forward, changes the severity is a good sign but definitely get it checked out. That is my plan!
  10. Thank you for all the input. Didn’t receive any meds at the hospital. See my cardiologist in a couple of weeks. It is so helpful to be able to share experiences. Since my autonomic issues I get so stressed.
  11. Hello all, So last night woke up to severe middle of the chest pain...of course went to ER. Things looked OK still had pain so the did a stress test to check for unstable angina, due to the fact that it happened at rest and the blood tests are usually negative for that type of angina. Upon reading doesn't seem like a stress test would rule it out and it is very serious. Pain took about 24 hours to resolve. Anyone have an issue like this? I will call cardiology Monday and make an appointment but...sigh..am very scared. Thanks for any responses. Hope you are all having some nice fall weather!
  12. When I click on the link, I get a message that says it can't be found?
  13. I had the blood volume testing done twice at the Cleveland Clinic. Once it was minimally low the second time it was moderately low. Fluids and salt help me quite a bit. As was mentioned above the test is long and uses a radioactive isotope. I too was told 24 hour urine gives no information on blood volume.. I can not tolerate most medications so I rely on salt and fluids. I was told not to overdue plain water as it causes electrolyte imbalance which has happened to me and is really scary.
  14. I have some of the same and was diagnosed with IC. Severity varies. At the beginning of my illness I noticed that when I would go I would urinate large amounts. Before autonomic issues I would go pretty frequently but small amounts.
  15. When I am in a flare I also need to urinate immediately upon standing. I believe I read at one point about that being a hyper pots symptom. I too have had occasional bouts of muscle pain and almost feeling flu like symptoms but it usually passes after a couple of days. Sometimes I winder if I have over done it a few days before. Let us know how your doing. Hopefully it will soon subside.
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