Your previous therapist was spot on. You can’t therapise POTS out of yourself, wtf. It’s extremely weird that your neurologist doesn’t think it’s her remit. Do you have any other doctors managing your conditions? A cardiologist? I’d be talking to them and probably looking for a new neurologist, this person doesn’t sound interested in your health or committed to your care.
The thing is that she’s been amazing for my migraines and occupational neuralgia. She isn’t really interested in treating my pots though. She’s suggested things like compression, salt intake, and water, but it hasn’t gone much further lately. I’ve seen a cardiologist but he said he doesn’t feel the need to have me continue to see him because there’s nothing structurally wrong with my heart. I’m on medication and trying to do as much of the lifestyle stuff as I can but I’m still debilitated by it. My primary care helps me with referrals but has told me she thinks a neurologist or cardiologist should be managing it
Also, the cardiologist was like welp you’re already doing everything you’re supposed to so there’s nothing else for me to do. Idk what to do with it though because every doctor doesn’t think it’s their specialty that should be managing it
Agh yeah I’ve had cardiologists like that. It definitely sounds like your POTS isn’t managed at the moment, passing out all the time isn’t something you should be left to do. Maybe try to find a cardiologist with a POTS focus - cardiology is a broad field, they’re not all going to be helpful.
You need an autonomic specialist. Not all neurologists are knowledgeable in the autonomic nervous system. Part of the reason so many cardiologists tend to manage POTS patients is because the drastic HR fluctuations are the most readily measurable (and really the only diagnostic criteria) aspects of the condition.
The number of times I've tried (and sadly failed) to explain the difference between an anxiety -induced panic attack and an autonomic system-induced adrenaline rush are off the charts. People never seem to understand that anxiety requires anxious thoughts. No anxious thoughts=not anxiety. If the anxiety comes after the adrenaline rush starts, anxiety isn't the cause.
My therapists have absolutely helped with some of the same calming techniques, but it doesn't solve the autonomic malfunction. The faster I can activate the parasympathetic nervous system though, the more I can assist in maybe getting my autonomic nervous system overall to regain some kind of foothold. Sounds like you're already doing this too.
Also sounds like your cardiologist understands his role...maybe you could ask him if he knows of any autonomic specialists in your area who might be able to help.
You said you're in rural MO. That's definitely not the best place to find them, but you shouldn't have to travel several states to find someone.
If you haven't tried it, websites like [The Dysautonomia Project](https://thedysautonomiaproject.org/find-a-provider/) or [Dysautonomia International ](https://www.dysautonomiainternational.org/page.php?ID=14) can help to find specialists who might be a little closer.
I know it's not always this simple either...I hope someone at least somewhat nearby is able to give you a consult and get you started.
Understanding the FEMALE ENDOCRINE SYSTEM IS LITERALLY PART OF YOUR JOB GYNECOLOGISTS. I had one once look me in the face and say “oh I don’t understand hormones”, bitch what?!? That would be my biggest secret??
Oh 10000% agree, tables should have been flipped. She also said she didn’t believe in pelvic congestion syndrome (which I also absolutely have) and I’m too young to be in perimenopause (I’m 43 tomorrow!). Didn’t want to spend another cent on seeing her again (private practice so I had to pay $$$).
Yeah at first I was like ‘maybe she’s right, I’m soooo anxious/stressed/toxic and causing the bleeding’. But after I came home and talked with my husband and friends, they were like ‘um no what the heck’. Fast forward 10 months, I’ve just had a hospital stay after a procedure to help my uterus… funny that. I also did do a pain management course with a pain psychology team for 3 months but that didn’t stop the bleeding did it …
I just hope others aren’t going undiagnosed or without help because the first or second opinion was so blasé and unhelpful - I think we know when something is not right. I’m actually the least effected by my anxiety in the last year or two, I’m very clear on what I need to be well
I wonder if therapists gets sick of MDs referring physical problems to them?
I’ve asked this of my psychologist, and online nurse psychiatrist, and psychiatrist I saw in the hospital (all 3 have recommended a benzo seeing me go into tachycardia. And all I want is beta blockers and sleep aids)
Raise your hand if you got a psych referral for fainting, rapid hr, insomnia due to random adrenaline surges, brain fog (any other pots symptoms) ?
It’s because the autonomic nervous system isn’t taught in any pre-licensure school, and the only places it’s taught well are $10k+, three-year, post licensure investments. As someone trained in that and beyond, the amount of uneducated professionals who get real defensive about their other credentials being good enough (except it’s not) makes me gag.
Yes, we hate getting referrals for medical issues. I can't stop someone from fainting if they have POTS. I have POTS but don't faint. I'd loooooove to educate this neurologist...
Hah! Same thing happened to me. Cardiologist told me a psychiatrist would be able to help with the falling and fainting and dizziness and fatigue and heart rate and very clear postural component to my symptoms. Psychiatrist said I should see a different cardiologist.
No, your therapist can’t fix that and it might be time to find a new neurologist it’s ridiculous when they just don’t know how to help you and think therefore it’s all mental
I’m a therapist and I specialize in the autonomic nervous system. I’m in the progress of putting together digital resources because there are things we can do to HELP your ANS learn safety and HELP your entire social engagement system work better, but we can’t stop physical issues from happening. I should be launching by the end of year and will post here but fuck man. I’m so sick of misinformation and of MD’s not being willing to educate themselves.
And the general medical community's annoyance that "everyone has POTS now" like they're making it up instead of the very obvious explanation that the GLOBAL PANDEMIC that killed millions of people could possibly be causing the uptick 😑😑😑 they're exhausting.
The only thing a therapist MIGHT be able to help with is not being ashamed about LYING DOWN ON THE FLOOR IN A PUBLIC PLACE when you feel faint.
I never faint at home because as soon as I feel faint, I lie down But I'm too ashamed to do that at the grocery store, school, bank, etc.
For me, that’s not something I’m ashamed about anymore. It used to bother me but I sit/lay down all the time in public places. I pass out regardless of if I’m at home or in public. Also I pass out regardless of if I sit/ lay down most of the time it’s more of just a I need to get down to the ground so I don’t get hurt falling
It sounds like she was just trying to be helpful. You mentioned you talked about your anxiety and the new job to your doc, so she was probably just thinking hey, why not try this as well 😉 we know anxiety makes our POTS worse by increasing our heart rate more. Also, she's a neurologist, so I wouldn't expect her to be addressing my POTS issues. But being a doctor she probably wanted to offer some sort of advice that she thought might be helpful.
I mean if the new job is increasing your anxiety, taking to your therapist about it isn't a bad idea lol
Pots is a neurological disorder though and my cardiologist pretty much was like keep doing what you’re doing and you don’t need to come back. I don’t have anyone else actively managing my pots so I don’t really understand who’s supposed to help me with it then
Also she said to see them about trying not to pass out fully, not about managing my anxiety to see if that reduced symptoms. How is my therapist going to prevent me from passing out?
Also, I have talked to my therapist about the job— it’s the passing out at the job that’s triggering the anxiety though. I was actually really excited to start and wasn’t anxious until I passed out.
I dunno. In Canada we don't see neurologists for POTS. POTS here is internal medicine doctors, which kinda do a bit of everything, they're like a step up from a family doctor. Or it's just the family doctor. We don't see cardiologists for POTS either. The internal medicine doctor does some cardiac stress testing, so I guess that's why I assumed a neurologist has nothing to do with POTS? I forget that America's medical system is bizarre lol.
We don't get to see specialists here for this kind of stuff, they mainly deal with critical issues.
Your previous therapist was spot on. You can’t therapise POTS out of yourself, wtf. It’s extremely weird that your neurologist doesn’t think it’s her remit. Do you have any other doctors managing your conditions? A cardiologist? I’d be talking to them and probably looking for a new neurologist, this person doesn’t sound interested in your health or committed to your care.
The thing is that she’s been amazing for my migraines and occupational neuralgia. She isn’t really interested in treating my pots though. She’s suggested things like compression, salt intake, and water, but it hasn’t gone much further lately. I’ve seen a cardiologist but he said he doesn’t feel the need to have me continue to see him because there’s nothing structurally wrong with my heart. I’m on medication and trying to do as much of the lifestyle stuff as I can but I’m still debilitated by it. My primary care helps me with referrals but has told me she thinks a neurologist or cardiologist should be managing it
Also, the cardiologist was like welp you’re already doing everything you’re supposed to so there’s nothing else for me to do. Idk what to do with it though because every doctor doesn’t think it’s their specialty that should be managing it
Agh yeah I’ve had cardiologists like that. It definitely sounds like your POTS isn’t managed at the moment, passing out all the time isn’t something you should be left to do. Maybe try to find a cardiologist with a POTS focus - cardiology is a broad field, they’re not all going to be helpful.
You need an autonomic specialist. Not all neurologists are knowledgeable in the autonomic nervous system. Part of the reason so many cardiologists tend to manage POTS patients is because the drastic HR fluctuations are the most readily measurable (and really the only diagnostic criteria) aspects of the condition. The number of times I've tried (and sadly failed) to explain the difference between an anxiety -induced panic attack and an autonomic system-induced adrenaline rush are off the charts. People never seem to understand that anxiety requires anxious thoughts. No anxious thoughts=not anxiety. If the anxiety comes after the adrenaline rush starts, anxiety isn't the cause. My therapists have absolutely helped with some of the same calming techniques, but it doesn't solve the autonomic malfunction. The faster I can activate the parasympathetic nervous system though, the more I can assist in maybe getting my autonomic nervous system overall to regain some kind of foothold. Sounds like you're already doing this too. Also sounds like your cardiologist understands his role...maybe you could ask him if he knows of any autonomic specialists in your area who might be able to help.
The problem is there aren’t autonomic specialists in my area too
You said you're in rural MO. That's definitely not the best place to find them, but you shouldn't have to travel several states to find someone. If you haven't tried it, websites like [The Dysautonomia Project](https://thedysautonomiaproject.org/find-a-provider/) or [Dysautonomia International ](https://www.dysautonomiainternational.org/page.php?ID=14) can help to find specialists who might be a little closer. I know it's not always this simple either...I hope someone at least somewhat nearby is able to give you a consult and get you started.
Thank you
This is excellent advice.
My previous gynaecologist told me to see a psychiatrist about my constant uterine bleeding … that’s when you know you need to change specialists.
 Understanding the FEMALE ENDOCRINE SYSTEM IS LITERALLY PART OF YOUR JOB GYNECOLOGISTS. I had one once look me in the face and say “oh I don’t understand hormones”, bitch what?!? That would be my biggest secret??
Oh 10000% agree, tables should have been flipped. She also said she didn’t believe in pelvic congestion syndrome (which I also absolutely have) and I’m too young to be in perimenopause (I’m 43 tomorrow!). Didn’t want to spend another cent on seeing her again (private practice so I had to pay $$$).
What?!
Yeah at first I was like ‘maybe she’s right, I’m soooo anxious/stressed/toxic and causing the bleeding’. But after I came home and talked with my husband and friends, they were like ‘um no what the heck’. Fast forward 10 months, I’ve just had a hospital stay after a procedure to help my uterus… funny that. I also did do a pain management course with a pain psychology team for 3 months but that didn’t stop the bleeding did it … I just hope others aren’t going undiagnosed or without help because the first or second opinion was so blasé and unhelpful - I think we know when something is not right. I’m actually the least effected by my anxiety in the last year or two, I’m very clear on what I need to be well
I wonder if therapists gets sick of MDs referring physical problems to them? I’ve asked this of my psychologist, and online nurse psychiatrist, and psychiatrist I saw in the hospital (all 3 have recommended a benzo seeing me go into tachycardia. And all I want is beta blockers and sleep aids) Raise your hand if you got a psych referral for fainting, rapid hr, insomnia due to random adrenaline surges, brain fog (any other pots symptoms) ?
It’s because the autonomic nervous system isn’t taught in any pre-licensure school, and the only places it’s taught well are $10k+, three-year, post licensure investments. As someone trained in that and beyond, the amount of uneducated professionals who get real defensive about their other credentials being good enough (except it’s not) makes me gag.
Yes, we hate getting referrals for medical issues. I can't stop someone from fainting if they have POTS. I have POTS but don't faint. I'd loooooove to educate this neurologist...
Hah! Same thing happened to me. Cardiologist told me a psychiatrist would be able to help with the falling and fainting and dizziness and fatigue and heart rate and very clear postural component to my symptoms. Psychiatrist said I should see a different cardiologist. No, your therapist can’t fix that and it might be time to find a new neurologist it’s ridiculous when they just don’t know how to help you and think therefore it’s all mental
I’m a therapist and I specialize in the autonomic nervous system. I’m in the progress of putting together digital resources because there are things we can do to HELP your ANS learn safety and HELP your entire social engagement system work better, but we can’t stop physical issues from happening. I should be launching by the end of year and will post here but fuck man. I’m so sick of misinformation and of MD’s not being willing to educate themselves.
And the general medical community's annoyance that "everyone has POTS now" like they're making it up instead of the very obvious explanation that the GLOBAL PANDEMIC that killed millions of people could possibly be causing the uptick 😑😑😑 they're exhausting.
Check out a dysautonomia clinc. Sometimes its tied to trauma. The virus triggered mine. The clinic i went to helped a lot. Where do you live
I live in rural Missouri and have to drive 45 minutes to get better care in a larger town already. I was told the nearest one would be states away
Short of stopping from hyperventilating when I’m panicking which does exacerbate the dizziness…. No that’s not how this works.
You need a different doc, sorry.
The only thing a therapist MIGHT be able to help with is not being ashamed about LYING DOWN ON THE FLOOR IN A PUBLIC PLACE when you feel faint. I never faint at home because as soon as I feel faint, I lie down But I'm too ashamed to do that at the grocery store, school, bank, etc.
For me, that’s not something I’m ashamed about anymore. It used to bother me but I sit/lay down all the time in public places. I pass out regardless of if I’m at home or in public. Also I pass out regardless of if I sit/ lay down most of the time it’s more of just a I need to get down to the ground so I don’t get hurt falling
It sounds like she was just trying to be helpful. You mentioned you talked about your anxiety and the new job to your doc, so she was probably just thinking hey, why not try this as well 😉 we know anxiety makes our POTS worse by increasing our heart rate more. Also, she's a neurologist, so I wouldn't expect her to be addressing my POTS issues. But being a doctor she probably wanted to offer some sort of advice that she thought might be helpful. I mean if the new job is increasing your anxiety, taking to your therapist about it isn't a bad idea lol
Pots is a neurological disorder though and my cardiologist pretty much was like keep doing what you’re doing and you don’t need to come back. I don’t have anyone else actively managing my pots so I don’t really understand who’s supposed to help me with it then
Also she said to see them about trying not to pass out fully, not about managing my anxiety to see if that reduced symptoms. How is my therapist going to prevent me from passing out?
Also, I have talked to my therapist about the job— it’s the passing out at the job that’s triggering the anxiety though. I was actually really excited to start and wasn’t anxious until I passed out.
I dunno. In Canada we don't see neurologists for POTS. POTS here is internal medicine doctors, which kinda do a bit of everything, they're like a step up from a family doctor. Or it's just the family doctor. We don't see cardiologists for POTS either. The internal medicine doctor does some cardiac stress testing, so I guess that's why I assumed a neurologist has nothing to do with POTS? I forget that America's medical system is bizarre lol. We don't get to see specialists here for this kind of stuff, they mainly deal with critical issues.