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MomtoGiuliana

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About MomtoGiuliana

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  • Birthday 08/16/1968

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  1. I agree that the most important thing an ER can provide (in my experience) is IV fluids. Of course that is assuming the patient has a diagnosis of POTS. I think understanding that orthostatic testing (hr and bp lying/sitting and standing) that might suggest autonomic dysfunction. When I was undiagnosed this was never investigated (at ER or by my GP at the time). Even tho I complained that my heart was racing when I stood. I think most drs do not understand how totally disabling severe POTS can be. So they see a patient in distress and labs etc look normal so they assume anxiety i
  2. Oh no. I am so sorry you aer in a bad flareup. I get both severe fatigue and weakness if my flare up is bad enough.
  3. My guess is if you've had symptoms for 10 years and they have not worsened it's not cancer. However, you absolutely need to have these symptoms investigated. I was diagnosed with colon cancer in December. No symptoms. It was found on a routine colonoscopy. I am feeling extremely fortunate it was found at an early stage when still treatable.
  4. What I have learned is that it is possible to do things remotely or outdoors that in the past absolutely had to be indoors and in person. In general I feel I have learned more about flexibility and what is necessary in life and what is not. Truthfully in some ways some things are going to change for the better as a result of the terrible pain and suffering so many are going through right now. But in other ways, there is going to be very long lasting damage. And too much loss. HCD77--so glad you did not get sick. Yes I think going to indoor salon may be one of the more risky activitie
  5. I get any and every vaccine. I will be getting the shingles vaccine soon due to my age. I have never had an adverse reaction and to/for me the small risk of an adverse reaction is preferable to getting sick. When I do get sick, even with a bad cold, I get a POTS flare up that lingers for weeks. With COVID, there are just too many unknowns about long term problems, not to mention short term complications. If Dr. Fauci gets the vaccine, I am getting it too.
  6. If you know Dr. Rowe perhaps he could refer you or make a recommendation for someone else who might see you sooner? I think it depends on what you are looking for how long you may have to wait.
  7. 27 bpm is awfully close to the official definition of POTS. If you have symptoms too, it's hard to understand why this would be dismissed. My EP has always said dysautonomia is ultimately diagnosed based not simply on TTT but also symptoms (and of course ruling out other conditions with other testing). I don't meet the diagnostic criteria for POTS every day, I don't think that means I have POTS on some days and not on others. Can you keep a record of hr at home to share with this next specialist?
  8. I have had joint pain and GI disturbances (heartburn, general indigestion, nausea) with POTS flare ups. And I can say from moderating this forum for many years that this is not unusual for POTS patients.
  9. A very bad flare up I had two years ago started with my ears clogged really badly and taking a decongestant to relieve the pressure and loss of hearing. May not have any relationship to what you are experiencing, but in my experience anything that is off with the body can potentially trigger POTS. I have felt dizzy yet had highish bp. I have not been told I have hyper POTS, but when I am in a flare up I have episodes of high bp. Tingling of hands can be a symptom of a panic attack/adrenaline surge. Dysautonomia can cause strange, multiple and disturbing symptoms.
  10. Not specifically--I would get pain here and there throughout my limbs, hands and feet. It started out quite severe and after several weeks started to improve eventually completely disappeared.
  11. In my last flare up I had pain throughout my body--limbs mostly. It seemed like nerve pain. Saw a number of doctors as it lasted for 2 months but no new diagnosis. I am a lot better (for) now fortunately.
  12. It is true that fatigue is present in all illnesses but in dysautonomia it can be quite severe, and in fact the most prominent and disabling symptom for some.
  13. I agree with all the masks and social distancing flu should be way down this season. I think from a population perspective flu shots are being encouraged bc flu + COVID may put extra strain on hospitals this winter.
  14. I always get the flu shot. I have never had any symptoms or POTS flare afterwards. I am personally more concerned about what getting the actual flu would do to me. Bc I can get POTS flare ups with common colds.
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