Jump to content

Mom of 4

  • Posts

  • Joined

  • Last visited

Everything posted by Mom of 4

  1. I think you have every right to feel the way you feel. Just step away from the news and information for a bit and find a happy distraction if you can.
  2. This is my experience on Midodrine. I am not giving medical advice. My doctor prescribed it 2 times a day as needed. I was told not to take it before bedtime/or lying down it can be dangerous. You can look that information it is true. I was told if I feel like I need it (I know my body more than my physician does) then take it. I only use it during flare ups. It is silly for me to take a medication when I really am not symptomatic. I hope this helps
  3. The first TTT I really don't remember it but feel like maybe it was a mild case of my knee buckling and the EEG stayed the same. Since then I have had Brain surgery and there is alot of artifact and did not have at tilt table during the spells. I get really bad looking seizure like activity after surgeries due to the anesthesia and I don't breathe. Sometimes I can hear people and not move. I slowly come to. MY last TTT was 2016 just to diagnose POTS and I did not pass out an no EEG. I go to the Vanderbilt Autonomic clinic. They are good but once they see something everything else is off the plate. I work and lead a normal life until I have an episode and then it takes me out of life for about 3 weeks or more. I am in a flare up now and was in hospital for 3 days getting fluids bc every time I stood up I would pass out. I have to go to a different hospital due to my insurance so it is frustrating bc those doctors see it and say yea probably from lack of blood flow to the head or oxygen. I take a Beta Blocker and the refuse to treat with IV fluids. I only see my family doctor and the Vanderbilt Autononomic Clinic This only happens maybe once a year if not longer unless I have some sort of anesthesia. I live a normal life otherwise and am going to turn 48 this week.
  4. I have had POTS more than 20 years. I will be 48 this week (yikes). I have have passed out too many times to count with seizure like activity. EEG always negative. I was told because they didn't see anything during tilt table on EEG (in 2008) that it is not a "true" fainting spell. I certainly can't fake this stuff nor do I want to. Been in ICU for weeks at a time for not being able to sit up with out passing out and apnea spells. I guess I just need validation that I am not crazy. Feedback welcomed ❤️🌴
  5. Have you tried Banana Bag Oral Solution? It works great . I use it during flare ups and after hospital stays
  • Create New...