Mom of 4

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. 

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

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. 

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

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Have you tried Banana Bag Oral Solution?  It works great .  I use it during flare ups and after hospital stays