This is topic Autonomically Mediated Syncope in forum Medical Questions at LymeNet Flash.


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Posted by Summer3 (Member # 35286) on :
 
Anyone else have this from Lyme? I have no control of my bp dropping and of course it's always normal when I'm stressed at a doctor's office.

I'm on midodrine 10mg doses and my bp is still dropping randomly. Today it was 77/55. My normal is 115/70.

I've tried licorice, florinef, beta blockers, salt tablets, caffeine, fluid loading, compression, etc. Still no control so the only med I take now is midodrine. I'm not a fan of going on SSRI's or back on high doses of Florinef. I'm not taking abx so I'd have nothing to counter any "possible" immune suppression. My lymphocytes are already too low @ 16.

What should I do? I feel like crap and can faint or get close at any time with no warning.
 
Posted by Lassie27 (Member # 31083) on :
 
Hi Summer - I didn't have syncope...but have pots... but it was from chemical exposure... I used midodrine for several months...but seem to need it less and less when i dont take perfect care of myself... are you chemically sensitive at all? creating a clean environment and doing many vitamin/glut/ala ivs really helped...
 
Posted by Lymetoo (Member # 743) on :
 
What's the difference between this and Neurally Mediated Hypotension? Do you know?

I've heard of NMH in regard to Lyme.
 
Posted by Butterfly26 (Member # 43365) on :
 
I have this for about 8 years now. I have had great success with beta blockers...but it seems you've already tried it. Increasing salt intake has also helped me tremendously.

Gatorade has saved me on many occasions.
 
Posted by Summer3 (Member # 35286) on :
 
Yeah I've tried pretty much everything. Can't get control of it. I've had it about 3 years but only treated it individually a few months ago.

NMS is the same as autonomically mediated syncope. My doctor had several interchangeable names for it.
 
Posted by Rumigirl (Member # 15091) on :
 
quote:
Originally posted by Lymetoo:
What's the difference between this and Neurally Mediated Hypotension? Do you know?

I've heard of NMH in regard to Lyme.

It's the same thing; except syncope means fainting, so it applies when you actually faint, or perhaps when you almost faint.
 
Posted by Rumigirl (Member # 15091) on :
 
Oops, answered before reading the rest of the thread.

Summer, did you not have a good response to Florinef? That is usually the most important med for this. It DOES NOT suppress your immune system, esp when you need it. So don't stay away from it for that reason. LLMD's rx it all the time when it is needed.
 
Posted by Summer3 (Member # 35286) on :
 
I did try Florinef at 0.1. I instantly got strep and hadn't caught anything for years. I went off for a while then went back on and again after 2 days I had a 104-105 degree fever.

My EP wants me on up to 0.5 of Florinef. I can't even handle 0.1. Plus I'm not on antibiotics. Do LLMD's typically use Florinef with patients that are only on herbs? That's my main concern.
 
Posted by Lymetoo (Member # 743) on :
 
Thanks for info on the NMH .. I was wondering.

I sure hope you can find something that helps.
 


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