Kathie,

The basic tests for automatic issues are, tilt table treat, qsart, skin biopsy,valsa valva test and ruling out cardiac underlying issues. An excellent website with a fantastic forum is dinet.org. It gives detailed definitions of various auto issues like pots,orthostatic intolerance, neurocardiogenic syncope, and mitral valve prolapse. These are all forms under the umbrella term dysautonomia. My symptoms were wide ranges of tachycardia up to 200 with little to no exertion, to Bradycardia, down to 38 sitting up. Digestion issues of all sorts, fainting, low bp all the timewith narrow pulse pressure, pupillary instability, headaches, angina like pain,pvcs, afib,vtach, gerd, cognitive fog, heat intolerance, tremors, medication intolerance, etc etc...lol

Its a diagnosis of exclusion most of time but they are getting closer to autoimmune connection in some potsies.

Treatment over the last 30 years hadn't changed much. Amitryptiline,or ssri meds are used alot to reset the nervous system. Didn't work for me. Florinef is one that helped alot as a child but as an adult made me sticker. Beta blockers usually are a first line approach with midodrine. Betas help the heart and midodrine helps raise the bp and counteract the side effects of the bb. This is counterdictedin asthmatic s and some other diseases so i was never able to do it. Salt tablets, gatorade and compression stockings are a mainstay for most potsies to help blood pooling and raise bp.

As bny mentioned,ivig is a treatment that sadly must doctors don't approve of yet for dysautonomia. I think it will be soon though as it does appear to be beneficial in some. I think it really depends on the epidemiology of the syndrome.

You can what's known as a poor mans tilt and check your results:
U measure your bp and heart rate lying down after 10 minutes, then check it usually upon standing then again in 10 minutes of standing and then again upon sitting. i believe anything witha heart rate increase greater than 30 bpm is considered pots suspicious and further testing is needed. U would need to reframe from caffiene foran accurate result.

Geesh sorry so long there...i got rambling on....lol

I have the digestion issues as well, no fun! My pupils were + on the testing as well.. I do have this issue... where I will focus on something I'm doing up close to my face and then it's like my eyes won't accomodate back when I try to look at something at a different distance.. it takes a few minutes.. it's really strange... I think my sweat test was normal, and maybe that's why I wasn't officially diagnosed? Who knows. Interesting about the bradycardia- i get that as well sometimes.. I feel a little lightheaded with it, and my head feels really weird.. I always know that's when I'm having it.. then it jumps back to tachycardia quickly after those episodes.. not a lot of fun.. I feel like every single system is invovled with all of this!

Bny,
I feel for you =( it is truly no fun. I failed all my tests..But sometimes i feel like it depends what day yr tested.some days I'm less symptomatic than others. Digestion issues sux. I wish my diseases would leave food out of it. Don't mess with my food!!! I am such a foodie...lol

The eye thing sounds just like me. My pupils bounce instead of constricting and dialating properlycausing horrible light and tracking issues. I think I'm having mg eye issues too so no fun at all. =( i defiantly agree it feels like a full body assault from within. Yuck

yes... I used to LOVE food, but now I just see it as more of a chore most of the time, as it can make me sick.. I have been strictly gluten free x over 2 years since this all started in case that was the cause (i have family members with celiac).. I do love it when I find food I like and it doesn't cause issues!

haha, yup, right now I'm late for my IVIG and everytime I catch a glimpse of myself in the mirror i'm a little horrified each time - my face looks all droopy and lopsided.. and I realize the thing I am seeing in my right eye visual field is in fact my droopy eyelid! At least I have more than a snarl of a smile again though