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About angelloz

  • Birthday 01/28/1959

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    McLouth, Kansas
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    Weather, my children and grandchildren, husband and K-State

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  1. 12 years ago I had a tetanus booster. I was 50 years old. Two days later began my journey with autonomic dysfunction. It took about 6 years to improve and get some of my life back. I now need my booster again. I know there is no way to know for certain that the booster was the cause of my autonomic dysfunction. I am scared however. I don’t think I can go through those early years again. I was bed bound etc. My doctors cannot promise that there is no correlation. I live on a farm and often get cuts. Any thoughts?
  2. I used to get very forceful heartbeats when I rolled over. It has finally stopped but took several years.
  3. Suddenly developed edema. Could it be the salt loading? I have done this for 12 years without issues. I see my doctor’s nurse Thursday. Will see what they say. Has anyone else had this issue?
  4. Well my breathing troubles continue along with chronic dry cough....this has been going on for months along with my dysautonomia returning. Had chest CT , heart work up etc... I guess next is a pulmonologist . I had this a bit the first time around but way worse this time. Breathing takes so much work and feels like I'm not getting enough oxygen. My pulse oximeter is 98 most of the time. Can go down some when upright and moving around but not always. I am wondering if anyone else has the odd cough? Hope everyone is doing as well as they can.
  5. Well I have been having some of this too. I too drink water deep breathe and try to lay so I don't hear the pounding. I think mine may be heart related. I am 62 and having new issues. Having some tests done. I had this at times too when I was younger and only had autonomic dysfunction so don't over worry. Hang in there!
  6. I have this as well. I have a question. If you can manage to go to sleep does it go away then . So if you stir in the night do you notice it? With neuralgia and things like atypical tooth pain it is usually gone in the morning then returns rather quickly. Some days are worse than others. Amitriptyline helped me but I stopped it for some issues I was having. Ice at night does help me. It is miserable and having multiple things to deal with just doesn't seem fair. There are many medication combinations that can help.
  7. I am 62 years old and with salt and fluid loading have had very few issues for the last five years...then started having nausea, breathing issues, a slight dry cough. One night I had arm and shoulder and chest pain and went to the ER. Heart EKG ,Troponin, looked good. Had a nuclear stress test to be certain heart is OK. That was fine. Now I am home, can't stand for long without chest, arm, back pain, breathing labored, some nausea. Feel awful. The first time around I had similar issues but no pain. I am going back to the cardiologist but wondered if anyone else had any type of " heart related " pain that comes and goes. Thanks in advance.
  8. Hello all, I am finding on my worst days I have low pulse pressure. I have checked my BP machine at the doctors and it is accurate. One day I felt so badly I called the nurse with a pulse pressure of 11...she told me it couldn't be that low. When I research low pulse pressure it doesn't mention dysautonomia...only other severe aliments. Does anyone else have this issue? What is the cause? Do I treat it like low BP with fluids etc? Sigh.....
  9. I used to do this all the time at the beginning. Not certain was causes it but would be doing the dishes and realize I was sort of holding my breath and not breathing. I had to remind myself.
  10. MomtoGiuliana, I also have had a relapse after many years and my B12 and D was discovered to be low? Strange? Also, I used to have autonomic storms and a doctor told me low blood volume can actually cause panic attacks. They have a physical cause.
  11. Hello to all, I was diagnosed with autonomic dysfunction around age 50. I won't go through the horrid list of symptoms as you all know them:). After about 5 years my health improved greatly. Best thing for me was salt and fluid loading. I am now 61 and things are suddenly awful. BP drops are back, temperature dis-regulation and now nothing is moving through my stomach, trying to stay hydrated and barely eating. I have upcoming tests. The one change in my life was starting the NEW oral CGRP medication Ubrelvy for my migraines. It was helping with that and I took it for several months. I have now stopped . I am afraid it has wrecked my body again. It is so new I seriously doubt all side affects will be known for years. I'm not sure what I am asking but I am so scared I ruined my health. I don't think my body can fight through this again. Sigh....
  12. I get those reading frequently and have been diagnosed with low blood volume. Medications cause a migraine increase which leads to vomiting...so I salt and fluid load.
  13. I always became sleepy from benadryl until my dsyautonomia. Now it makes me feel nervous and uncomfortable.
  14. At the beginning I believe mine was overactive , just like Stark mentioned. I never got sick, stopped having cold sores etc... As I have improved over the years I am now getting colds. and illnesses that are going around. Go figure.
  15. Low potassium was one of the few things that always showed up in my blood work at the beginning of my journey. it is still low but not as low as at the beginning. I see this many times from patients with autonomic dysfunction. You would think it would be a clue!
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