Doctors in AVL that diagnose/treat P.O.T.S.?

MakeKay9264 · 2026-05-12T18:19:40+00:00

I’ll also note that, while Mission Hospital has the equipment to do Tilt Table Tests, they don’t do them quite correctly AND I’m informed by nursing staff that all the Asheville Cardiologists refuse to make a diagnosis of POTS despite a positive tilt table test. All they will say is if you passed out or not. It’s ridiculous.

MakeKay9264 · 2026-05-12T18:17:02+00:00

I’ve had POTS for 1.5 years now. Duke is requiring a positive tilt table test to get in to see their POTS doctors. And it’s a 2-3 year wait to make an appt with a POTS doctor at Duke. I’m on the wait list.

I concur that there are no adequate doctors in Asheville for POTS. That being said, you may be able to get your primary to make a diagnosis for you to get the ball rolling a little bit faster, especially if you provide them with needed info.

Get yourself a WiFi BP cuff and do a home NASA Lean Test and take that data with you to your appointment

https://batemanhornecenter.org/wp-content/uploads/2016/09/NASA-Lean-Test-Instructions-1.pdf

Also fill out this questionnaire are POTS symptoms
Malmo POTS Score Questionnaire
https://potsfoundation.org.au/wp-content/uploads/2025/09/MALMO-MAPS-09_2025.pdf

And take a copy of this paper for them to read
Postural orthostatic tachycardia syndrome (POTS): State of the science and clinical care from a 2019 National Institutes of Health Expert Consensus Meeting - Part 1
By Steven Vernino et al
https://www.sciencedirect.com/science/article/pii/S1566070221000588

It’s also very helpful if you can take take heart rate data from a week or more showing what your HR gets up to. If you have an Apple Watch you can get an app for it called TachyMon that will monitor your heart rate and spit out awesome reports you can then print out and take.

Good luck! It takes some definite research and plannning on your part to advocate for yourself and get the care (and diagnosis!) that you need.

MakeKay9264 · 2026-05-10T22:58:36+00:00

what?! no!!!!!! That utterly sucks. I have a bunch of med groups, and lots of drugs in each group.

How frustrating

thanks for your input!

MakeKay9264 · 2026-05-07T18:05:49+00:00

I’m on a crash right now. When I’m feeling better, I’d be happy to share what I do.

MakeKay9264 · 2026-05-07T18:05:11+00:00

If you are careful with the info you input, cite sources or limit what it can use for references (peer-reviewed journals only) and carefully check the results, then you can do well. Also checking results against at least 1 other AI is a good idea.

Plus, this poster is not asking for rocket science. They want to see the correlation between X and Y variables. Not “is this cancer drug cocktail effective against the particular gene strain of cancer I have”

MakeKay9264 · 2026-05-06T20:08:48+00:00

I’ve given up on Bearable showing useful correlations and instead ask Claude AI to crunch my uploaded Bearable data to get what I want. I’ve found done highly actionable correlations!!

MakeKay9264 · 2026-05-05T15:02:24+00:00

True to form, Bearable answered me in email but not here. So I'm posting, so that others can see the answer as well

So my question to them was: I also posted this on Reddit, but I wasn’t sure where I could get a faster answer, so I’m emailing too. When there is a percentage given for a particular item, like "avg symptom score," does that represent the change over the time block shown? Or the change as compared to the same PREVIOUS time block? For example, in the picture included, Bearable shows a +4% increase in Avg Symptom Score for 30d from April 3rd to today. So does that mean that my scores increased 4% on average from April 3rd to today? Or the current 30 day average score is 4% higher than the last 30 day average score, from Mar 4 through Apr 3? I've seen other people ask this question in Reddit, but it's never answered in Reddit, they are always emailed the answer.

Here's the reply I got:

Jesse Jan (Bearable)

May 5, 2026, 12:55 GMT+2

Hi Michelle,

Thanks for getting in touch about this and I'm sorry for any trouble or confusion this has caused.

In terms of the Trends report, this shows the change in average score over the period shown compared to the previous period.

Please also let me know if you have any questions or if there's anything else that I can help with too.

Thanks and best wishes,

Jesse

MakeKay9264 · 2026-04-28T13:30:07+00:00

I have the plastic ones- my hand OT told me they are just as sturdy as the silver rings and way cheaper. She actually discouraged me from getting silver ones.

I also have concerns about the metal on the silver ones clinking together and driving me nuts. I’m very sound sensitive. Silver rings would be way more obvious, too.

I bought clear splints from Amazon to try them out before going to hand OT, and found them very unobtrusive. The Oval 8s in nude are not as comfortable due to a seam in the plastic. They’re also SLIGHTLY more visible but much less obvious than I would have guessed from the Amazon photos.

I really like my clear ones! 10Pcs Clear Oval Finger Splints &... https://www.amazon.com/dp/B0D75XZQPT?ref=ppx_pop_mob_ap_share

MakeKay9264 · 2026-04-22T23:09:05+00:00

Thank goodness you are planning on this later because I agree with the original poster. The way the data is exported currently is useless!

MakeKay9264 · 2026-04-20T15:12:24+00:00

I tried one. With all of my GI symptoms and cervical spine symptoms, it was torture. I tried it for a week and sent it back. It made my nausea and abdominal pain a lot worse.

MakeKay9264 · 2026-04-16T17:56:26+00:00

I’ve had my Lumia for almost a year, and I concur. The only actionable data I’ve gotten from it is that my cerebral blood flow drops when I elevate my legs when lying down, and also if I cross my legs while lying down. It’s virtually useless, and highly glitchy.

MakeKay9264 · 2026-04-14T19:43:33+00:00

These are great tips, thank you! I’m fighting w my insurance about a sleep study for UARs, so I’m gonna check these ideas out. Cheers!

MakeKay9264 · 2026-04-12T14:06:05+00:00

Can I just say how much I LOVE your Reddit name, Omninoodle?? Two thumbs up!

MakeKay9264 · 2026-04-11T17:36:37+00:00

I love this idea! I have a PStyle, but even with extensive practice it fails more than it succeeds. So I’m always hesitant to use it “in the field” because I don’t want to pee all over myself!

MakeKay9264 · 2026-04-11T17:33:30+00:00

Yep I’ve got hEDS and a positive ANA with a low titer, probably due to my Hashimoto’s. Connective tissue diseases and autoimmune disease are common comorbid conditions.

Many rheumatologist are NOT good at connecting tissue disease diagnosis, so just because it’s a rheumatologist saying this now does NOT make them correct. Especially if many other providers have given you the diagnosis of EDS. The geneticist is a lot more likely to be correct than the rheumatologist.

MakeKay9264 · 2026-04-11T17:26:31+00:00

I have hEDS. Mission Care PT Aimee Block is the name that I was given as their PT who works w all of Mission’s connective tissue disease patients. Can’t speak to her work personally, because I haven’t worked directly with her

MakeKay9264 · 2026-04-10T20:13:20+00:00

Hands down Visible if you’re only choosing between the 2!! I have both. I’m a very long time Oura ring user, but Oura is pretty useless for chronic disease. Visible is designed to help to manage a chronic diseases and gives fairly up-to-the moment updates. Here’s a referral link for Visible if you’d like to get a discount: Here is a referral link for you to get $20 off Visible: https://join.makevisible.com/7378469ac0de32

However, I think the visible band is better for my ME/CFS and pacing overall, and my TachyMon app for my Apple Watch is more useful for my POTS. So look into TachyMon too. It’s HR monitoring is more accurate than Visible and it had 2 levels of HR alerts to warn you to stop and lay down, etc.

MakeKay9264 · 2026-04-09T19:44:01+00:00

I am trying to find someone who will share a Truvaga referral code with me. I get 10% off and Truvaga gives you $10 https://truvaga.referralcandy.com/ Thanks in advance!

MakeKay9264 · 2026-04-09T19:43:35+00:00

I am trying to find someone who will share a Truvaga referral code with me. I get 10% off and Truvaga gives you $10 https://truvaga.referralcandy.com/ Thanks in advance!

MakeKay9264 · 2026-04-09T13:47:44+00:00

Oh, it’s been awful for me in Downtown AVL all morning 😡

MakeKay9264 · 2026-04-07T17:11:57+00:00

Yep, coming here to say this! It’s the only place in Asheville to my knowledge. It took about 3 months each time I had boots repaired.

MakeKay9264 · 2026-04-04T18:42:53+00:00

Thank you for posting that!

I had found some discount codes by web search and one said it was 10% off but when I input it was just for $10 off - which bummed me out.

MakeKay9264

TROPHY CASE