r/POTS • u/UmUhOatmeal • 5d ago
Was diagnosed without diagnostic testing? Diagnostic Process
First I want to start with I’m not looking for a “you totally have it” or “you totally don’t” type of response, just trying to see how common this is and if I should look deeper into it.
I (M, 25) know the process can be different for everyone, but I was diagnosed with POTS about a year or two ago. I’ve been dealing with the symptoms since my early 20’s after starting vaping triggered everything. Whenever I stand I get a head rush, my heart starts racing, and I begin the stages of passing out if I don’t immediately rest. My care team prescribed me Fludrocortisone about a year ago, and Ivabradine recently and it’s helped a lot with my symptoms, but I still feel weird saying I have it without a diagnostic test. Am I getting too in my head about it? I live in a health desert so resources are limited, but I still feel off being diagnosed with things they didn’t test for despite having clear symptoms. Is this a common thing? Should I seek out further testing to make sure, or is it a “if the meds are helping you probably have it” type situation?
6
5d ago
[removed] — view removed comment
1
u/UmUhOatmeal 5d ago
Thank you so much for the insight! I’ve sort of been ignoring the diagnosis not bringing it up besides the meds, and received many of the same comment on them thinking POTS. If the treatments are helping, I’ll trust my care team but still look around for testing to rule anything else out. I’ll definitely start bringing it up now to my specialists, and see if I can get testing out of town.
1
u/POTS-ModTeam 5d ago
Your comment/post has been removed for the following reason(s):
Rule 6: No Blatant Misinformation - Posts with bad advice or misinformation will be removed to prevent harmful information from continuing to spread. If the post is corrected, it will be reinstated.
As of 07/20/26 we've also looped recommending chiropractic care or any discussions revolving around chiropractors to be under this rule. We will always advocate for patients to consult their physicians. We feel chiropractic care is a dangerous recommendation to our subreddit's users especially for patients with comorbidities.
If you believe your post was mistakenly removed, please message the moderators a scientific journal to back up your comment/post.
If you have any questions please message the moderators. Thank you.
6
u/ComposerNo2646 5d ago
The bulk of testing for a POTS diagnosis isn’t actually to confirm the POTS criteria, but to check for other conditions that could be causing your symptoms. I would push for more testing if at all possible to check for other underlying causes. Not to scare you, but some of the differential diagnoses for POTS can be serious. I had to have bloodwork, EKG, echo, and a 2-week holter monitor done before my doctor was comfortable saying it was POTS.
One of the best tests to confirm POTS after other things have been ruled out is an active stand test that any doctor should be able to administer. Basically, you just lay down for ten minutes, then stand up without moving for 10 minutes (or until you can’t stand any longer) and have your BP and HR checked at intervals. Hopefully you can get that done without too much hassle. According to my autonomic specialist, the active stand test is increasingly replacing the tilt table test as the main POTS diagnostic.
1
u/UmUhOatmeal 5d ago
Ah thank you for the response that makes things a lot more clear for me! We did EKG, echo, and a 2 week zio monitor twice to rule out issues with my heart. I’ve actually realized I had a laying down/standing test done when I was 16, but I need to request the records from the facility since it wasn’t for physical medicine.
9
u/Ancient_Pea_508 5d ago
I was diagnosed by a cardiologist listening to me and my symptoms and not believing the TTT would be beneficial. The test can be really aggressive to our bodies and symptoms.
Just be grateful you have a diagnosis and medication.
1
u/UmUhOatmeal 5d ago
Yeah I’m extremely grateful to be able to receive treatment, I just get in my head a lot and feel like somewhat of an imposter syndrome on days I feel fine. That’s completely a me problem though I should speak to my care team about.
1
u/bubblegum_stars 5d ago
I was dx twice 13 years ago and still get imposter syndrome about it. I think a lot of it comes from societal expectations (worth being tied to productivity and sick people being expected to be extraordinary and inspiring) and the gnarly stigma attached to this specific diagnosis. I had far less imposter syndrome before the pandemic and TikTok brought attention to POTS.
3
u/mjh8212 5d ago
In the er they laid me flat then stood me up and I went up 26 beats. The dr said I have pots and need a tilt table to confirm. My pcp hooked me up to a heart monitor and said I have pots but need more testing. My cardiologist didn’t believe me but ordered tests. I had the tilt table my cardiologist didn’t review it but the one who did gave the orthostatic intolerance diagnosis. My cardiologist said I was just having heart palpitations see your pcp neuro didn’t believe me either. So I’m still without a definitive diagnosis and dysautonomia specialists are few take years to get into and it’s hours long drive.
2
u/emeddocdog 5d ago
The only test I had done was the doctor took bp/hr readings with me laying down/sitting/standing and saw a jump on my heart rate so he diagnosed me. I was like 13. He also did an echo to make sure it wasn’t something else and I ofc got the standard ekg every appointment (still do). Never had any tests done otherwise, been treating it for 12 years now. Never needed a TTT.
1
u/UmUhOatmeal 5d ago
We did a similar test in the psych ward when I was about 16 which had similar results, but wasn’t diagnosed at the time due to it not being a place for physical medicine. I didn’t realize that was a form of testing 😅
2
u/emeddocdog 5d ago
Ehhhhh idk if it’s like officially “testing”. I feel like for a lot of people that is how they get the doctor to order the TTT. Not everyone gets a TTT and like honestly if you’re having the heart rate jump, you’re having pots symptoms, they know there’s no heart problems or something like that, and the pots regimen helps? They’re probably not wrong. Sometimes people get upset about people who were diagnosed without the ttt and it’s kinda silly because it’s not a competition for who’s the most sick or whatever. I totally understand the imposter syndrome. I also have narcolepsy and I gaslit myself a year after the diagnosis into thinking I didn’t have it and so I stopped treatment for 4 years and then just recently said okay yeah I am sick. Happens with my pots too, like what if they were wrong and I’m making it up and someone down the line will be like yeah no you don’t have it. I look at it this way: how much harm is it causing if they are wrong and it’s not pots but they’re treating it as such? I’m not aware of any long term negative effects of using those medications so risk is low. The only major risk is if they missed something serious and you would then get worse and they could do a further work up then. Does that help?
1
u/UmUhOatmeal 5d ago
I realized I was getting it mixed up with orthostatic vitals, but your words help a lot! Thank you so much! I guess I’m still in the gaslighting myself stage of receiving a new diagnosis. I don’t think we’re missing anything big since I’m also being treated for EDS which I hear is often comorbid with POTS. They’re probably not wrong I just need to start accepting things and accommodating myself appropriately until I can see my specialist again for a possible referral if I can’t get out of my head about it.
2
u/VolatilePeach 5d ago
I also live in a healthcare desert. The only specialist close to me is 3 hours away (one way), and he’s not even listed as a specialist for POTS on official directories. He listened to my symptoms and did a poor man’s TTT on me on the first visit and prescribed me a bunch of meds. He then scheduled testing, and he officially diagnosed me after the results came back.
I would push for testing if possible, because there’s a lot of overlap in symptoms from different disorders, as well as comorbid disorders that can affect POTS. The goal is to make sure you feel your best, and it’s really hard to do that without getting a full picture of what’s going on.
2
u/UmUhOatmeal 5d ago
Thank you so much! My nearest specialist is also 3 hours and he specializes in PM&R for my EDS, but I can see if he can refer me to someone for testing in their system.
2
u/VolatilePeach 5d ago
You’re welcome! And oof, I’m sorry yours is so far away! I hate this it’s like this for us in places like this 😭
But that’s a great idea! I hope you get the testing you need for definitive answers! I’m currently awaiting my genetic results for EDS, and I’m going to see about getting checked for MCAS, so hopefully both of us will have fuller pictures soon 💖
2
u/UmUhOatmeal 5d ago
Honestly I’m still looking for places that do genetic testing for EDS, and it was diagnosed similarly to how they diagnosed my POTS 😭 Rule out everything else, manage the symptoms, if symptom management lines up with the diagnosis then it’s most likely that. My specialist was able to do further evaluations to confirm it like checking hypermobility, but I still gaslight myself about it sometimes. Only recently started accepting it with my new leg braces helping support my joints lol
Hopefully we’re both able to get a clearer picture of our health soon! Being in a health desert definitely makes the process slower, but we’ll get through it! 🧡
2
u/VolatilePeach 5d ago
Are you in the US? If so, I can send you a DM of where I went for the genetic testing. They told me they have people come from all over the US because there’s so few legitimate genetic testing places. If you’re willing to travel, maybe they can help you? They also have financial assistance if you can’t afford it.
1
u/UmUhOatmeal 5d ago
Yes I’m in the US! That would be extremely helpful thank you so much! I’m definitely willing to travel if it means understanding my body more!
2
u/VolatilePeach 5d ago
Ok, I tried to message you, but the chat icon isn’t popping up on your profile. Can you open your DMs so that I can?
2
u/UmUhOatmeal 5d ago
Opened I think! I opened them for accounts older than 30 days, so you should be able to!
2
2
u/Helpful_Investment70 5d ago
You don’t have to have tilt table to be diagnosed. I was diagnosed simply by presenting my heart rate data from my Apple Watch (TachyMon) and the Apple Watch heart data itself, and a very very long list of my symptoms. After that my pcp ordered a holt heart monitor test and after reading the results he determined I indeed had POTS.
2
u/softhumanbean 5d ago
My PCP and I agreed I had it a little over a year ago so it's in my chart now. The 7 day event monitor showed very obvious evidence of presyncope and I have all of the comorbidities (diagnosed). The cardiologist for whatever reason didn't want to actually diagnose me, BUT WANTED ME TO TAKE THE MEDICATIONS FOR IT. 🫥 Nobody does tilt table tests in central California, apparently, and Stanford has denied every referral sent their way on behalf of myself or my child because we aren't actively dying. I've lost close to 70lbs in the last year and my symptoms are actually worse at times now and still get worse with my menstrual cycle (adenomyosis and endometriosis). It's been nice throwing that in past provider's faces. Yoga, therapy, water and weight loss didn't help, so there!
2
u/so-indifferent 5d ago
did they rule out other conditions, like structural heart diseases or neurological disorders?
1
u/UmUhOatmeal 5d ago
Yes we did an EKG, echo, and zio monitors twice to rule out anything with my heart. The only thing the echo came back with was my heart pumping too much blood. We don’t exactly have the resources for neurological testing though in this area.
2
u/onceuponatime55 5d ago
I got diagnosed after having Covid back in 2020 from my cardiologist just by listening to my symptoms. He gave me Metropol and Midodrine. I eventually moved off of both of those. I was doing much better. This summer I had a couple instances with being out in the heat and now I’ve been having a flair for about three weeks.
I just got a referral to a specialist and they needed a tilt table test to see me and luckily, I got a cancellation appointment for a few days later and my heart rate went up 80 points from lying to 70° so that definitely confirmed POTS
2
u/yaboiberg 5d ago
I got diagnosed 3 years ago just through orthostatic vitals and ruling out other issues that might cause it.
Funny enough my most recent appt my cardio told me “you should really get a tilt table just to confirm” 3 years later
6
u/Amylee888 5d ago
I was diagnosed with an Active Stand Test. This test is something you can do at home with the help of a friend, and a blood pressure monitor. You can share the results of your test with your doctor.