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Diagnosing "pots Sub-type"


jem15
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I keep reading about the importance of knowing your POTS subtype and what's specifically "off" in you, in order to guide treatment better. It seems Mayo or Cleveland Clinic do this, but what if you can't get/afford there? My insurance wouldn't cover it, and I can't image how costly a week of testing at Mayo would be. Ha, is it only rich people that can get help for POTS or are there any other facilities that can do this or tests you can ask your doctors to order? I'm particularly looking for resources in the NY/NJ area. I thought being close to NYC would help and something would have to be there, but so far I havent found anything. I got tilt/autonomic function test at Columbia, but that's all they did. I know Dr. Kauffman is in NY, but he doesnt take insurance, and not sure if he has the specialized testing anyway.

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I can't help with your search for a doctor, but I went to Mayo and they never told me what subtype of POTs I had. My insurance also covered most of the doctors, but not all of the tests and it was expensive to cover the rest $3,000 :o . I couldn't imagine having to pay everything out of pocket.

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There's a big overlap and no real agreement between facilities on "sub-types." There are rough sub-types of orthostatically hypertensive or hypotensive. There are possible sub-types as to cause: post-viral, EDS, Mast Cell Activation Disorder, etc., but that won't really dictate a better treatment. The treatment plan depends more on your response to medication than your "type." I had my testing at Vanderbilt's clinic in Nashville. You could see Dr. Blitshteyn in New York. I was told that I had hyper-adrenergic responses to my ANS tests (orthostatic HYPERtension, tremor, flushing, and severe vasoconstriction.) Because I react with vasoconstriction, that type of drug, or one that increase norepinephrine levels would not be good for me. I respond very well (fortunately) to beta-blockers and meds that reduce BP, but even those have to be used with caution since I will go both bradycardic and hypotensive once I lie down.

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thanks, interesting to know... I guess it just depends more on if you have a doctor who's willing to try different things and put forth some effort. After 15yrs, it was a neurophysiologist who's an "expert" in sleep medicine, that happened to diagnose me. But other than trying Mestinon, doesnt seem to have any other ideas for treatment, and kept saying "go to Mayo".. Not everyone can do that, so it's frustrating. Though after reading some of the responses, I wonder if it would make much of a difference anyway.... argh! why does it have to be so difficult to find a doctor willing to help? I feel like I know more about treatment just from googling, than any of them. Scary...

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As was said, there is no real consensus on subtypes of POTS and it doesn't really guide treatment all that much. However, I do think it's worthwhile to try to find out what's causing POTS. It's not common but for people with some disorders, treating the underlying cause can greatly ameliorate or even reverse POTS. For instance, autoimmune causes can be treated with medications like IVIG and steroids, mechanical causes like Chiari can be surgically corrected, etc.

I know I was very happy to be diagnosed with EDS, because before I was I would have awful attacks of pain and my doctors kept saying, well POTS wouldn't make your hip hurt...POTS wouldn't cause your hands to hurt... and so on. I was always being accused of drug-seeking and/or addiction. Even though EDS has no treatment, it was necessary to get diagnosed in order to have the rest of my symptoms treated. But as far as my POTS symptoms, treatment didn't change.

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Good to know, my symptoms started after a flu-like virus when I was 16, now 31. My symptoms have gotten progressively worse over the years. I'm not sure if that's typical for POTS to have that progression, or as you said, maybe due to the underlying cause, if there is one? Does it list anywhere what possible autoimmune causes it can be? I've been screened for some of the basic ones, lupus, etc... but autoimmune stuff runs in my family, my dad has spondylitis, cousin has Chron's, and I got Hodgkin's lymphoma, which isnt autoimmune, but considered an immune disease... when I got the Hodgkins 13 yrs after initially getting sick, some drs said, maybe you have some rare autoimmune disease that caused this... i always wondered because Hodgkin's is technically considered a rare disorder, and I was sick for so long before getting it, wondering if it's really I just have bad luck;-) or if there's some sort of immune dysfunction going on... ha, will probably never know...

doctors have really been so useless, i've seen soooo many, and none of them put forth much effort, and it took 15yrs just to get the POTS diagnosis, and now they just want to sit back and not do much more than have me take Mestinon for treatment, I'm fine with experimenting with that, but there's no other push for things to do/try.. it's always me that has to ask, what about this? what about that? how much salt should i get? is my exercise routine ok? they just have no idea....most of what happens with my care is from my own research. ha, just sick of being my own doctor.

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but autoimmune stuff runs in my family,

at the risk of sounding like a broken record, :blink: , you may want to look at celiac disease or gluten intolerance .. the glutenfile is a great place for info on this ...

FWIW though, I'm a celiac who's been on the GF diet for 5 years now and I still have orthostatic intolerance. I've found that adding 1/4 tsp of salt to an Emergenc 3 times a day, taking 2 Solgar essential aminos every few hours but especially in am before getting out of bed and taking DHEA have helped me some with my symptoms .. My doc is currently looking at my hormones, esp my adrenals.

IMHO, Integrative doctors appear to be our best resource when trying to figure this out.

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A lot of different autoimmune diseases can lead to POTS. I think the most likely suspects are Diabetes (type I) Guillian-Barre, Coeliac, Multiple Sclerosis and Lupus.

It's difficult to know whether progression of symptoms indicates an distinct underlying cause. Since treatment for POTS is haphazard at best, it might just mean that an ideal medication or mix of medications hasn't been found yet.

A prevailing theory is that POTS kicked off by a virus is autoimmune in nature, so if you haven't been checked for the AChR (acetylecholine receptor) auto-antibody, I would start there, especially since you've been getting worse.

I know what you mean about being your own doctor. I've been faced with profound disinterest all around. Doctors want something to treat, and they want that something to respond to their treatment. It's so frustrating to deal with a doctor who just isn't 'into it.'

Should you end up going to Cleveland, I'd recommend Dr. Chelimsky. On the first visit, he runs a panel of tests to look for common (and uncommon!) causes of POTS, right down to things like mitochondrial disease. He looks for the cause of POTS symptoms as a matter of course, which is the way I feel it should be.

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Yea, I'm still hoping to find that magical doctor that will actually try hard and fight for me or with me. We'll see..

And funny, when you mentioned AChr, it sounded familiar, a few years ago I was tested when they thought I had myasthenia gravis, but didnt. But yea, so much to try and figure out. I know doctors cant create miracles, but at least give it a good try.

And I've tried the whole alternative/integrative route over the years, but never had much luck. I was really hopeful for it, I really believed that would be my answer, but no luck. I dont have Celiac, and did all kinds of elimination diets, gluten , dairy, yeast, processed foods, sugar, etc. and never felt better, and sometimes felt worse. I know initially you can til your body adjusts, but i'd never get better, just continue to worsen, so I stopped with that stuff. I tried naturopaths, energy therapists, tons on herbs /supplements... more recently tried "integrative medicine" docs who are actually "real" internists, but also know about integrative/alternative stuff... still no luck... usually just a lot of wasted money. the one i've seen this year, is kinda out of ideas and she seems very knowledgeable, she's a "real " internist and runs the hospitals integrative med program. Listens, etc.. but havent gotten anywhere with her either. the last thing she was gonna try was the adrenal testing. i have the kit, but am waiting on insurance clarification.. but I wonder sometimes if i'm just wasting more money, since "real" doctors dont consider adrenal fatigue a real conditon anyway... who knows.. ha, "real" doctors have sucked a lot too. i dont know who to believe at this point, but I'll go with whoever honestly puts forth effort and whoever can get me to feel even a little bit better. Hasnt happened yet from anyone, but hoping it will one day. the new vision/vestibular therapy is something new I'm trying, hoping that might help.

Dizzysillyak, that's awesome you've had some luck with it though. Whatever works! Glad you found something that makes a difference:-)

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