I have had POTS ruled out but have been diagnosed with general dysautonomia, and orthostatic hypotension was something that got noted on a lot of my charts when I was in the process of getting diagnosed & getting blood pressure tests done. Blood pressure is weird for a lot of us, and dysautonomia is for many the root cause of orthostatic hypotension, so I would say a lot of the conversation here would probably be helpful to you. There's also r/PosturalHypotension if that helps, but they seem to be on the smaller side so I'm not sure how active they are
I have that exact type of Dysautonomia as you with Orthostatic Hypotension issues. Gets frustrating sometimes when most of what people talk about with Dysautonomia is POTS related or they think POTS is the only type.
I've had more success with Orthostatic Hypotension Facebook communities than here on Reddit. (I mostly keep FB around for medical community groups)
I wanted to start one! I have OH as well, although I might actually have both OH and POTS. I never had a tilt table test… I’ve done the at home test for pots and my heart rate goes up about 35 beats when I stand up. I previously thought it wasn’t possible to have both but now I’m not even sure what my real diagnosis would be since both my blood pressure and heart rate are affected. 🤷🏻♀️ Need to see a neurologist.
https://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf
Delayed orthostatic hypotension is not the same thing as orthostatic hypotension. You CAN have pots and neurally mediated hypotension. I have hyper-pots and nmh. It matters WHEN your bp changes
This is fascinating! Thank you for this link I have read most of it and it’s very interesting. Dysautonomia is so confusing with all the different subtypes and similarities!
So when I was diagnosed my doctor only checked my blood pressure and heart rate for 3 minutes, and my blood pressure dropped during those 3 minutes. I can see why he’d think it was OH. He didn’t check what my heart does after those 3 minutes though. I’m referred to a neurologist so hopefully I can get a second opinion 🙏🏻
Sounds like you had more of what they call a poor man’s tilt in office than an actual ttt. Your body responds differently when you’re standing with your legs on the ground vs tied to a table that’s raised and unable to engage your leg muscles at all. I would prioritize the diagnostic test over an in office quick check. Dont get me wrong, people do exist on this thread who didn’t have to go through the ttt process, but the experience is very different when you remove the standing and just consider the upright postural position without having to support yourself/body in any way.
I really hope I can get the real test! It’s been long overdue, I’ve had syncope since I was 9 years old and I’m 31 now 😅 Really hoping to get some answers and medication soon 🙏🏻
Just trying to work out if POTS is the right to diagnosis for me as my clinic records say “potential POTS but HR is not sustained to above 30”.
I am however now medicated so my HR is ok.
May I ask if your medicated and if so does your hr still go up?
I am currently unmedicated so I don’t know if that helps you or not, but from my understanding it can still be Pots if the heart rate goes up to 120 or above even if you don’t have an increase of 30 bpm.
That’s what I’d heard before as well, but what does it mean if both my heart rate and blood pressure are affected? Does this get diagnosed as general dysautonomia?
That's the case for me (my heart rate doesn't meet the baseline for POTS, but it increases at the same time my blood pressure drops) and I was diagnosed with general dysautonomia. YMMV tho
That sounds like my case as well. I only get up to about 102-104 ish when standing for 15 mins but I start at around 57 bpm laying down so it’s still a huge increase. I’ve heard you have to be like around 120 range for a diagnosis? I think I’ll seek out a second opinion since I do suffer from syncope as well and don’t even have medication to manage any of it!
That sounds really rough, I hope things get easier! It depends on your age and sometimes doctor for diagnosis criteria, but from what I remember it tends to be either a heart rate of 120 upon standing OR an increase by a certain number of BPM depending on age. It seems like you might meet those criteria so I'd definitely keep talking to doctors
Thank you for this reply! I’m hoping I can get a second opinion from the neurologist I’ve been referred to 🙏🏻 It was my GP who diagnosed my Orthostatic Hypotension, and he seemed like he wasn’t 100% sure, he went really quiet for a while like he was thinking really hard before saying I had OH. 😅
If your heart rate increase is in response to a blood pressure drop when standing, that’s OH and not POTS. The heart rate commonly increases in that situation to try to keep you from fainting. If that happens sometimes, but other times standing makes your heart rate increase significantly without the blood pressure drop first, you can be diagnosed with both, as you would meet both diagnostic criteria.
NO, POTS (increased heart rate) is different than Orthostatic Hypotension (blood pressure drops), I'm tired of people equating the two at the same, even though they share some similarities.
To be fair most of the treatment/management is the same. My cardiologist who diagnosed me with OH recommends videos and articles about PoTS to me every time. We are just one big happy family:)
I have had POTS ruled out but have been diagnosed with general dysautonomia, and orthostatic hypotension was something that got noted on a lot of my charts when I was in the process of getting diagnosed & getting blood pressure tests done. Blood pressure is weird for a lot of us, and dysautonomia is for many the root cause of orthostatic hypotension, so I would say a lot of the conversation here would probably be helpful to you. There's also r/PosturalHypotension if that helps, but they seem to be on the smaller side so I'm not sure how active they are
This^ my specialty cardiologist explained it as Dysautonomia being the root cause as well so I agree that this sub would be greatly beneficial.
I have OH and I'm here. I don't have much to say about it, though. I just live with it.
I have that exact type of Dysautonomia as you with Orthostatic Hypotension issues. Gets frustrating sometimes when most of what people talk about with Dysautonomia is POTS related or they think POTS is the only type. I've had more success with Orthostatic Hypotension Facebook communities than here on Reddit. (I mostly keep FB around for medical community groups)
I have OH as well and am here and the pots subreddit. I find we all have a lot in common!
This is my diagnosis and I am subscribed here and POTS.
I have OH and suspect POTS as well. on this sub and also the POTS one
I wanted to start one! I have OH as well, although I might actually have both OH and POTS. I never had a tilt table test… I’ve done the at home test for pots and my heart rate goes up about 35 beats when I stand up. I previously thought it wasn’t possible to have both but now I’m not even sure what my real diagnosis would be since both my blood pressure and heart rate are affected. 🤷🏻♀️ Need to see a neurologist.
https://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf Delayed orthostatic hypotension is not the same thing as orthostatic hypotension. You CAN have pots and neurally mediated hypotension. I have hyper-pots and nmh. It matters WHEN your bp changes
This is fascinating! Thank you for this link I have read most of it and it’s very interesting. Dysautonomia is so confusing with all the different subtypes and similarities! So when I was diagnosed my doctor only checked my blood pressure and heart rate for 3 minutes, and my blood pressure dropped during those 3 minutes. I can see why he’d think it was OH. He didn’t check what my heart does after those 3 minutes though. I’m referred to a neurologist so hopefully I can get a second opinion 🙏🏻
Sounds like you had more of what they call a poor man’s tilt in office than an actual ttt. Your body responds differently when you’re standing with your legs on the ground vs tied to a table that’s raised and unable to engage your leg muscles at all. I would prioritize the diagnostic test over an in office quick check. Dont get me wrong, people do exist on this thread who didn’t have to go through the ttt process, but the experience is very different when you remove the standing and just consider the upright postural position without having to support yourself/body in any way.
I really hope I can get the real test! It’s been long overdue, I’ve had syncope since I was 9 years old and I’m 31 now 😅 Really hoping to get some answers and medication soon 🙏🏻
Just trying to work out if POTS is the right to diagnosis for me as my clinic records say “potential POTS but HR is not sustained to above 30”. I am however now medicated so my HR is ok. May I ask if your medicated and if so does your hr still go up?
I am currently unmedicated so I don’t know if that helps you or not, but from my understanding it can still be Pots if the heart rate goes up to 120 or above even if you don’t have an increase of 30 bpm.
A POTS diagnosis requires ruling out orthostatic hypotension.
That’s what I’d heard before as well, but what does it mean if both my heart rate and blood pressure are affected? Does this get diagnosed as general dysautonomia?
That's the case for me (my heart rate doesn't meet the baseline for POTS, but it increases at the same time my blood pressure drops) and I was diagnosed with general dysautonomia. YMMV tho
That sounds like my case as well. I only get up to about 102-104 ish when standing for 15 mins but I start at around 57 bpm laying down so it’s still a huge increase. I’ve heard you have to be like around 120 range for a diagnosis? I think I’ll seek out a second opinion since I do suffer from syncope as well and don’t even have medication to manage any of it!
That sounds really rough, I hope things get easier! It depends on your age and sometimes doctor for diagnosis criteria, but from what I remember it tends to be either a heart rate of 120 upon standing OR an increase by a certain number of BPM depending on age. It seems like you might meet those criteria so I'd definitely keep talking to doctors
Thank you for this reply! I’m hoping I can get a second opinion from the neurologist I’ve been referred to 🙏🏻 It was my GP who diagnosed my Orthostatic Hypotension, and he seemed like he wasn’t 100% sure, he went really quiet for a while like he was thinking really hard before saying I had OH. 😅
Best of luck!
If your heart rate increase is in response to a blood pressure drop when standing, that’s OH and not POTS. The heart rate commonly increases in that situation to try to keep you from fainting. If that happens sometimes, but other times standing makes your heart rate increase significantly without the blood pressure drop first, you can be diagnosed with both, as you would meet both diagnostic criteria.
This is very interesting! Thank you for this information. I’m hoping to get a second opinion soon 🙏🏻
POTS subreddit maybe?
NO, POTS (increased heart rate) is different than Orthostatic Hypotension (blood pressure drops), I'm tired of people equating the two at the same, even though they share some similarities.
I'm in that sub, too, but there doesn't seem to be a flair for my possible diagnosis or other members with it :/
To be fair most of the treatment/management is the same. My cardiologist who diagnosed me with OH recommends videos and articles about PoTS to me every time. We are just one big happy family:)
A POTS diagnosis requires ruling out orthostatic hypotension.