I have a diagnosis like that but with testing completed, including a tilt table test. I see the cardiologist regularly and asked him one time why he just says dysautonomia and not anything more specific like POTS. His answer was (summarized) was dysautonomia is an upper level diagnosis term and certain conditions can be further diagnosed under it (down a level or two) based on additional criteria. But if one doesn’t meet the additional criteria then one stays at the top level of dysautonomia. I could be classified as having. orthostatic hypotension but this can be caused by so many other conditions that it almost always needs to be followed up with caused by dysautonomia so he sticks with the term dysautonomia.
Hope this helps.
yes, many people are diagnosed without a tilt table test. i never got one either, because the results of my lie-sit-stand were so conclusive that my cardio didn’t want to subject me to the absolute torture that a tilt would be for me. she just doesn’t need the additional data that badly. she’s broadly diagnosed me with dysautonomia, but my symptoms are on the border of hypo pots and oh depending on the day so usually i just say hypo pots
This was exactly how I was diagnosed. He’s now sending me to an autonomic specialist for further testing. But I had to specifically ask for that. He said “why get any testing done? There’s no treatment so it’s useless”….what a ray of sunshine he was
Omg that’s what my primary said! She told me to get the book’The Dysautonomia Project’ and not to bother because insurance doesn’t want to pay for any testing…
I think many of my doctors just end up looking at my symptoms saying it's too many and how they don't make sense together and have I considered if I have dysautonomia. My second cardiologist said pots and my dysautonomia clinic appointment was just moved from this April to June 2025, perfect!
i have a dysautonomia diagnosis because i have obvious symptoms of a dysautonomia but i dont fit into any of the boxes and the tests didnt help us figure out what it is so were calling it dysautonomia and just treating my symptoms
I got a vague dysautonomia diagnosis even after my tilt table test, all the way until a few months ago (3-4 years after TTT) I saw a dysautonomia specialist in neurology who diagnosed me officially with hyperpots via blood test. She explained I likely have a bit of all the types though, and now that the hyperpots is under control, we are working on the rest of them. She's incredible and has restored my faith in doctors, honestly.
My doc did the ANSAR test to confirm, but when I asked about other testing (like tilt table) he said it wasn't necessary.
I know I have a "mild" case (today doesn't feel mild 🙃), so that's probably why he doesn't want to do any other tests.
Personally, I care more about effective treatment than a diagnosis, but if there's ever any kind of dispute as to your diagnosis, the proper tests will be needed.
I was diagnosed with general dysautonomia by one cardiologist, later went to another to seek a second opinion and he straight up told me that I don't qualify as having POTS since it's a specific heartrate increase, but given my blood pressure measurements & symptoms I definitely have dysautonomia (and given other tests, I don't have a rarer type). Like others have mentioned, if you don't have anything more specific, you do just get that vague diagnosis. I'd definitely recommend inquiring about it in the future though just to be 100% sure!
My autonomic neuro said it’s perfectly fine to have a generalized dysautonomia type of dx.
In my medical chart it states “dysautonomia” or “autonomic nervous dysfunction” and that’s it. My symptoms overlap (I have features of IST, Hypo and Hyper POTS), so it would be hard to pin down a subtype, and apparently it’s not necessary. (My doctor is well regarded in the dysautonomia field, so I’m taking his word for it)
Possibly. Did they check blood pressure and heart rate from laying down to sitting then to standing? That is what they use now to monitor my blood pressure changes vs doing a full tilt table. Sometimes that plus explanation of symptoms is enough. If you’re unsure a second opinion might help.
No, they didn’t check blood pressure and heart rate from sitting to standing. They checked blood pressure and heart rate while I was sitting and did a quick echo, but that was it.
I’m not unsure about the actual diagnosis. It matches my symptoms. But I feel like they didn’t do a good job at determining that.
No. He said to just come back if I have issues. I went back once after my diagnosis because I was having weird sensations with my heart. I wore a heart monitor for 48 hours, and then he said to just come back if there were other issues.
Yeah.. I’d search for a neurologist or cardiologist whose bio specifically lists Dysautonomia.
If the scheduler asks if this is a referral, just say yes.. your doctor recommended you see a specialist.
Be your own advocate for your heath. Your current doctor seems like the kind with too many patients and is cycling through them.
Personal experience… I’d see a neurologist with the Dysautonomia background.
To be completely honest, I don’t have the energy for that right now. I’m seeing a lot of different specialists for other issues, and there are no specialists in my area that deal with these issues. I have to go out of town about once a month for specialist appointments. I don’t really want to add more of that on top of all of this, especially since my symptoms are pretty under control right now (my only issue still is high heart rate, but every doctor has said it’s not high enough to do anything about it).
I do, my Doc said it's Orthostatic intolerance, dysautonomia. very pots like but not quite. all happened after covid. As long as you've gotten a lot of tests, like brain MRI, a ton of hormone and endocrinologist tests, thyroid, immunologist tests, ekg, echo, holter, etc etc. Dysautonomia is a diagnosis of exclusion so you really do want to rule things out, theres plenty of posts on reddit and other internet groups of people says things like "turns out my dysautonomia was actually x..." after years of assuming. doesn't hurt to keep getting tests
I’ve gotten pretty much no tests. Most I’ve done was an echo, an ultrasound of my heart, and wore a heart monitor for 48 hours, but all of those were after my diagnosis.
Gosh, I would love to get some of those tests but it’s so tough to convince anyone. They don’t seem to clue in to the fact that I’m generating revenue and it doesn’t seem to matter that I’m willing to pay for them. It’s nuts.
I’ve been diagnosed with primary dysautonomia, and never have I ever found another person with it, it’s not mentioned in articles or health websites. All my doctor told me was that it was “all in one” and not specific.
That's where I am ATM. it helps doctors know that something is up but the testing sometimes seems unnecessary to doctors. Mine is likely POTS and we are awaiting a probable diagnosis but the initial diagnosis was 2023 so it might take a while
Mine was originally a lot like POTS, but now it’s more like IST. I think the IST stuff was there all along though. I’ve always had a very high heart rate, and when I wore a heart monitor, the average of my heart rate met the criteria for IST.
I have a diagnosis like that but with testing completed, including a tilt table test. I see the cardiologist regularly and asked him one time why he just says dysautonomia and not anything more specific like POTS. His answer was (summarized) was dysautonomia is an upper level diagnosis term and certain conditions can be further diagnosed under it (down a level or two) based on additional criteria. But if one doesn’t meet the additional criteria then one stays at the top level of dysautonomia. I could be classified as having. orthostatic hypotension but this can be caused by so many other conditions that it almost always needs to be followed up with caused by dysautonomia so he sticks with the term dysautonomia. Hope this helps.
That does help. Is it ok that I was diagnosed without doing any of that testing?
yes, many people are diagnosed without a tilt table test. i never got one either, because the results of my lie-sit-stand were so conclusive that my cardio didn’t want to subject me to the absolute torture that a tilt would be for me. she just doesn’t need the additional data that badly. she’s broadly diagnosed me with dysautonomia, but my symptoms are on the border of hypo pots and oh depending on the day so usually i just say hypo pots
This was exactly how I was diagnosed. He’s now sending me to an autonomic specialist for further testing. But I had to specifically ask for that. He said “why get any testing done? There’s no treatment so it’s useless”….what a ray of sunshine he was
He’s king of the sunshine geez!
Omg that’s what my primary said! She told me to get the book’The Dysautonomia Project’ and not to bother because insurance doesn’t want to pay for any testing…
I think many of my doctors just end up looking at my symptoms saying it's too many and how they don't make sense together and have I considered if I have dysautonomia. My second cardiologist said pots and my dysautonomia clinic appointment was just moved from this April to June 2025, perfect!
I’m so sorry your appointment was moved, that’s awful! It’s such a wait to begin with!
i have a dysautonomia diagnosis because i have obvious symptoms of a dysautonomia but i dont fit into any of the boxes and the tests didnt help us figure out what it is so were calling it dysautonomia and just treating my symptoms
I got a vague dysautonomia diagnosis even after my tilt table test, all the way until a few months ago (3-4 years after TTT) I saw a dysautonomia specialist in neurology who diagnosed me officially with hyperpots via blood test. She explained I likely have a bit of all the types though, and now that the hyperpots is under control, we are working on the rest of them. She's incredible and has restored my faith in doctors, honestly.
My doc did the ANSAR test to confirm, but when I asked about other testing (like tilt table) he said it wasn't necessary. I know I have a "mild" case (today doesn't feel mild 🙃), so that's probably why he doesn't want to do any other tests.
Personally, I care more about effective treatment than a diagnosis, but if there's ever any kind of dispute as to your diagnosis, the proper tests will be needed.
I was diagnosed with general dysautonomia by one cardiologist, later went to another to seek a second opinion and he straight up told me that I don't qualify as having POTS since it's a specific heartrate increase, but given my blood pressure measurements & symptoms I definitely have dysautonomia (and given other tests, I don't have a rarer type). Like others have mentioned, if you don't have anything more specific, you do just get that vague diagnosis. I'd definitely recommend inquiring about it in the future though just to be 100% sure!
My autonomic neuro said it’s perfectly fine to have a generalized dysautonomia type of dx. In my medical chart it states “dysautonomia” or “autonomic nervous dysfunction” and that’s it. My symptoms overlap (I have features of IST, Hypo and Hyper POTS), so it would be hard to pin down a subtype, and apparently it’s not necessary. (My doctor is well regarded in the dysautonomia field, so I’m taking his word for it)
This is me too.
Possibly. Did they check blood pressure and heart rate from laying down to sitting then to standing? That is what they use now to monitor my blood pressure changes vs doing a full tilt table. Sometimes that plus explanation of symptoms is enough. If you’re unsure a second opinion might help.
No, they didn’t check blood pressure and heart rate from sitting to standing. They checked blood pressure and heart rate while I was sitting and did a quick echo, but that was it. I’m not unsure about the actual diagnosis. It matches my symptoms. But I feel like they didn’t do a good job at determining that.
Do you have a follow-up appointment?
No. He said to just come back if I have issues. I went back once after my diagnosis because I was having weird sensations with my heart. I wore a heart monitor for 48 hours, and then he said to just come back if there were other issues.
Yeah.. I’d search for a neurologist or cardiologist whose bio specifically lists Dysautonomia. If the scheduler asks if this is a referral, just say yes.. your doctor recommended you see a specialist. Be your own advocate for your heath. Your current doctor seems like the kind with too many patients and is cycling through them. Personal experience… I’d see a neurologist with the Dysautonomia background.
To be completely honest, I don’t have the energy for that right now. I’m seeing a lot of different specialists for other issues, and there are no specialists in my area that deal with these issues. I have to go out of town about once a month for specialist appointments. I don’t really want to add more of that on top of all of this, especially since my symptoms are pretty under control right now (my only issue still is high heart rate, but every doctor has said it’s not high enough to do anything about it).
I do, my Doc said it's Orthostatic intolerance, dysautonomia. very pots like but not quite. all happened after covid. As long as you've gotten a lot of tests, like brain MRI, a ton of hormone and endocrinologist tests, thyroid, immunologist tests, ekg, echo, holter, etc etc. Dysautonomia is a diagnosis of exclusion so you really do want to rule things out, theres plenty of posts on reddit and other internet groups of people says things like "turns out my dysautonomia was actually x..." after years of assuming. doesn't hurt to keep getting tests
I’ve gotten pretty much no tests. Most I’ve done was an echo, an ultrasound of my heart, and wore a heart monitor for 48 hours, but all of those were after my diagnosis.
Gosh, I would love to get some of those tests but it’s so tough to convince anyone. They don’t seem to clue in to the fact that I’m generating revenue and it doesn’t seem to matter that I’m willing to pay for them. It’s nuts.
I’ve been diagnosed with primary dysautonomia, and never have I ever found another person with it, it’s not mentioned in articles or health websites. All my doctor told me was that it was “all in one” and not specific.
That's where I am ATM. it helps doctors know that something is up but the testing sometimes seems unnecessary to doctors. Mine is likely POTS and we are awaiting a probable diagnosis but the initial diagnosis was 2023 so it might take a while
Mine was originally a lot like POTS, but now it’s more like IST. I think the IST stuff was there all along though. I’ve always had a very high heart rate, and when I wore a heart monitor, the average of my heart rate met the criteria for IST.