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Posted

Hey all....

Finally got to see a specialist.......this appointment was like a dream come true! And worth every cent of the slightly astronomical fee i hadto pay!

She said I tick every box for vasovagal dysfuntion/NCS/dysautonomia and am very symptommatic. I got a POTS diagnosis last year but no proper testing to see what exactly was fueling it all. She did say that she feels POT's is becoming a 'slap on label' given by docs who have little understanding of Autonomic dysfunction or appropriate testing and feels im more Vasovagal.

Im unsure about this myself but im sure further testing will point us in the right direction. Im not hung up on the label i get I just want to kno exactly whats happening in my body and how to fix it!!

She started me on Florinef (which I hope will suit me better than midodrine did!). She's ordered a 24hr urine collection, 24 hr BP monitor (ive been asking my docs for this for over a year now!) and another TTT with GTN now (last one was with Isoprenaline which she said is outdated now ???)

However it directed me down a different line than I had been researching before and I discovered some interesting stuff! My worst daily presyncope symptom is dry wretching/heaving. Ive tried to explain this to docs before and I always get the 'nausea and vomiting is all part of near fainting' line.

But I never ever feel naseous and dont vomit...just wretch severely. It has always felt like a sudden reflex reaction.

Discovered that Stimulation of the Vagovagal reflex stimulates the Vasovagal nerve to slow down the heart rate, one of the ways to stimulate the vagovagal nerve is to induce the gag reflex!!!!!

Seems my body has sussed its own way to slow down my heart rate!! Sure enough once ive been wretching for a few mins it stops of its own accord and my heart has slowed down. Also my last TTT i got severe twitching/muscle spasms (didnt faint at all) I didnt pay any heed to that and no one else did either...but ive now discovered that this is a significant sign of vasovagal dysfunction when doin TTT!

I just want to know has anyone ever experienced this/know anything about it/had doctors discuss it??

Would love some insight from some of ye that have lots of experience with these things! im only picking up bits and pieces as i go and trying to make sense out of it al!

Posted

That's very interesting! Before I was on my meds I would throw-up suddenly and hadn't felt sick a minute before. If I hadn't eaten, it was wretching, of course if I had eaten I was throwing up. It came on very suddenly and then I was fine. I will be interested in what they do for you.

Posted

Hey, it's worth a try s-pot ~Hope it helps you.

Posted

Look up cranial nerves, and you will find that there is a point where the optical, vestibular and vagal nerves all come together at one point. I found that interesting during my research, since my presentation was nausea/dizziness/vertigo, and I also have facial nerve and swallowing issues, as well. Also look up the trigeminal nerve, too. That involves facial nerves, biting, chewing and swallowing...The vagal nerve affects so many things. Here it is on Wikipedia...

http://en.wikipedia.org/wiki/Vagus_nerve

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