POTS/pseudo syncope It is legit...anyone relate?

[Mom of 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

❤️🌴

[Pistol]

Hello @Mom of 4 - I am so sorry that you are being told this. I have hyperadrenergic POTS, NCS and autonomic seizures. I used to faint all the time, fall out of chairs etc. At some time the syncope turned into what appears grand mal seizures ( all muscles stiffen, my back arches and sometimes I block my own airway during this ).  These seizures where often witnessed by doctors, even happened at my autonomic specialist. I had them when under anesthesia during surgeries, during MRI's … you get the point. Still, I saw 5 cardiologists and some of them insisted that this all due to anxiety. Once I was diagnosed by my specialist he told me about the difference between convulsive syncope and autonomic seizures. I then stayed 4 days in an Epilepsy Monitoring Unit ( EMU ) at a University Hospital. They monitored EEG and Telemetry as well as me boing on camera 24/7. On the third day I passed out - When I fainted the EEG flatlined (  meaning no blood flow to the brain ) and the telemetry showed tachycardia ( the heart attempting to  get blood to the brain ). That is how they diagnosed the seizures as definitely non-epileptic. However - no way I could have faked that!!! I recently saw the neurologist that was treating me at that time and she is still telling people about that!!!! 

When they did your TTT - did you faint? If your spells are still this bad you really should be re-evaluated, 2008 was 10 years ago! What doctors have you seen for this - neurologists, cardiologists, autonomic specialists? How often do you pass out/ take seizures? I am much better although partly due to me having to stop working and being housebound. Despite being in very capable hands with my doctors and specialists ( now! ) I was medication-refractory and am being treated with weekly IV fluids, which in my case have stopped the seizures all together and I barely faint anymore. This is due to the added volume keeping a steady pressure in my blood vessels, which in turn does not trigger the ANS to dump norepinephrine and constrict the vessels. That is the assumed mechanism behind my symptoms.  

www.dysautonomiainternational.org/pdf/Riviello_AutonomicSeizures.pdf

This is some information about these seizures - I hope it is helpful. Please see a specialist that is familiar with these episodes and with dysautonomia in general. PM me if you have any questions. Best of luck!!!!!!

[Mom of 4]

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.