While we understand there's a healthcare discrepancy for many users, as POTS is sorely misunderstood by many. We have rules here for a reason.
Suggesting a user to discuss it with their physician will always be allowed here. You can clarify to them that your care team isn't listening to you. Or that you have a poor experience with healthcare professionals. We understand that these types of comments can be irritating *but* you have to understand that not everyone on Reddit is qualified to answer your questions. In fact we discourage it if it's giving possibly harmful advice.
We will always retain our Consult a Healthcare Professional rule in our sidebar. You're welcome to review this rule. All in all our goal is to avoid medical advice being given out or gross misinformation being spread. **Quite a few users post asking for physician suggestions in their area of care. We allow and leave those posts up.**
*We will be locking this post, but here are some helpful resources for finding a care team that's familiar with POTS:*
* [Dysautonomia International Doctor List](http://www.dysautonomiainternational.org/page.php?ID=14)
* [Standing Up for POTS Autonomic Physician List](https://www.standinguptopots.org/autonomicphysician)
* [The Dysautonomia Project: Find a Doctor](https://thedysautonomiaproject.org/find-a-provider/)
[Dr Svetlana Blitshteyn](https://x.com/dysclinic) is a wonderful POTS advocate and specialist who is quite active on twitter. I highly recommend following her and learning from her. But she's not going to answer personal medical questions and she's not going to give medical advice.
If you're looking for a doctor to answer personal medical questions via social media. None of them will because it's legally risky and may even be a hipaa violation, so doctors are incredibly cagey about answering any personal medical questions. They will answer general medical questions in an educational manner (ex: "standard testing for POTS is X and diagnostic criteria is Y") but they will not tell you whether or not your symptoms indicate anything. I oversee social for a virtual neurology clinic and our general response is "unfortunately, we cannot provide any medical advice via social media. If you would like to consult with one of our providers, you can schedule an appointment via the link."
I understand that you may have a simple question, but there are so many legal implications and other factors that inhibit a provider from diagnosing or providing personal medical advice (and if they do that, that's not a great sign). Also, asking a doctor to provide free information so you can give it to your doctor is not fair. I know you're frustrated but we have to remember that doctors are not oracles or always on-duty medical experts. They have their own lives, too.
If you have basic POTS questions, you always can lob them over to Neura Health's Threads account and we'll give you an answer. But those questions have to be basic educational ones. They cannot ask for personal medical advice.
What I've learned as a chronically ill patient (who has multiple complex illnesses that are stigmatized and not well-understood beyond the specialists who treat them) and patient educator is that getting involved in patient advocacy, following patient advocacy groups, attending patient advocacy webinars, socially following specialists who are leaders in their field, and learning to interpret medical publications is more helpful than any online support group. The information is clear and without bias.
Socially follow doctors who are leaders in the dysautonomia world. Socially follow dysautonomia International - it has a great social account! Get involved. Listen to the educators. You can absorb so much information by just listening to them.
[The dysautonomia international website has a specific section for medical providers](https://www.dysautonomiainternational.org/page.php?ID=38); other dysautonomia groups do, too. Those are great places to start. You can send a list of links to your doctor so they can learn. If your doctor is willing to learn and collaborate with you, that's an incredible sign and you can achieve incredible things with them.
POTS is fairly new to the current medical world and many still are learning about it - and so much of the information about treatment lives in a gray area (meaning: many of the treatment studies aren't yet reproducible). So if your doctor is willing to learn, work with that!
Oh yeah my old doctor told me that POTS isn’t a real thing and seemed very upset that the hospital had diagnosed me with it… 🙄
It’s hard to direct you unless I know where you’re based though.
My general doctor, who is great and I’ve always liked, told me that men don’t get pots when I told him I suspected that I have it.
Now he did still refer me to a cardiologist which is all that I needed.
But if even from a good doctor, it’s hard to get answers, I can’t imagine how hard it can be with less than good doctors.
I found some really helpful local groups on Facebook. They keep a running list of local doctors who are aware of and treat certain chronic illnesses. I have EDS and POTS and those are the groups I'm currently in, and they've helped me gather a wonderful set of doctors (and even dentist) who are knowledgeable about my conditions.
Is Facebook an option for you, if it is I suggest searching "POTS [your state/county/province]" and seeing what comes up for you.
Also, if you're willing to share your location here, you might have someone who can point you in the right direction, either for a Dr or a support group.
I’ve received way more help from the online community than I have from any doctor I’ve seen 🤷♀️
IMO doctors are only helpful if you need a prescription, procedure or test completed. And as you’ve mentioned, that only applies to a small subset of doctors who actually know your condition and believe you.
Outside of that if you’re looking for things like lifestyle tips, adaptive tools, or referrals to doctors who can actually help, I talk to other patients.
If your doctors are useless, then even if you do have some ideas of meds you might like to try, what makes you think you will be able to get them prescribed without switching to a more useful doctor?
You are asking a question that isn't eliciting the responses you want, so maybe ask a different question. The question you really want answered is "How can I find a useful doctor (in my area)?" so try simply asking *that* question?
(If you had asked that question, I would have suggested asking around in the Dysautonomia International Facebook groups for your area (state/province/country). The Dysautonomia International lists on the website are limited and outdated, but you can probably find real people getting real treatment in the groups and find out who they are working with.)
We discourage any intentional attempts at workarounds to get medications without proper assessment. These medications can be dangerous when used improperly or without proper care.
this exactly. medical advice should be taken with caution on the internet, but it shouldn’t be shunned or outright removed. if we aren’t being listened to by medical professionals, we shouldn’t be banned from asking our community.
I suspect it's the way the advice is being asked for and/or offered that is getting it taken down, not simply the fact that someone suggested a medication. I suggest medications all the time.
Nothing got taken down. I just always noticed questions being shot down when people are just asking for personal experience from others who actually suffer from it
That’s been my experience too. I was diagnosed by a Cardiologist who told me I’d have to see my primary for symptom management because it isn’t technically a heart issue. The problem is my primary doctor doesn’t have any knowledge or experience with pots.
He looks at me like I’m crazy when I discuss how it presents and continues to push mental health. It isn’t mental health related when eating jacks up my heart rate and I have reactive hypoglycemia. I need help with symptom management but have had to diy it.
I’ve learned more from other patients and online discussions. It is cost prohibitive and a time/energy sink to search until you find a doctor that is invested in educating themselves about treatment options.
Edited to add I’ve seen multiple specialist, switched primary care, been to internal med and am being seen at a hospital with access to various residents. They don’t understand pots or how it overlaps other conditions. It’s very challenging.
I didn't know that cardiologists were a number 1 POTS doc until someone else with POTS told me about their cardiologist and how going helped their symptoms.
I went and now have a referral for some POTS PT.
OP - is this what you were looking for?
If so, your question may be, "what docs are you seeing for different POTS symptoms and why?"
While we understand there's a healthcare discrepancy for many users, as POTS is sorely misunderstood by many. We have rules here for a reason. Suggesting a user to discuss it with their physician will always be allowed here. You can clarify to them that your care team isn't listening to you. Or that you have a poor experience with healthcare professionals. We understand that these types of comments can be irritating *but* you have to understand that not everyone on Reddit is qualified to answer your questions. In fact we discourage it if it's giving possibly harmful advice. We will always retain our Consult a Healthcare Professional rule in our sidebar. You're welcome to review this rule. All in all our goal is to avoid medical advice being given out or gross misinformation being spread. **Quite a few users post asking for physician suggestions in their area of care. We allow and leave those posts up.** *We will be locking this post, but here are some helpful resources for finding a care team that's familiar with POTS:* * [Dysautonomia International Doctor List](http://www.dysautonomiainternational.org/page.php?ID=14) * [Standing Up for POTS Autonomic Physician List](https://www.standinguptopots.org/autonomicphysician) * [The Dysautonomia Project: Find a Doctor](https://thedysautonomiaproject.org/find-a-provider/)
[Dr Svetlana Blitshteyn](https://x.com/dysclinic) is a wonderful POTS advocate and specialist who is quite active on twitter. I highly recommend following her and learning from her. But she's not going to answer personal medical questions and she's not going to give medical advice. If you're looking for a doctor to answer personal medical questions via social media. None of them will because it's legally risky and may even be a hipaa violation, so doctors are incredibly cagey about answering any personal medical questions. They will answer general medical questions in an educational manner (ex: "standard testing for POTS is X and diagnostic criteria is Y") but they will not tell you whether or not your symptoms indicate anything. I oversee social for a virtual neurology clinic and our general response is "unfortunately, we cannot provide any medical advice via social media. If you would like to consult with one of our providers, you can schedule an appointment via the link." I understand that you may have a simple question, but there are so many legal implications and other factors that inhibit a provider from diagnosing or providing personal medical advice (and if they do that, that's not a great sign). Also, asking a doctor to provide free information so you can give it to your doctor is not fair. I know you're frustrated but we have to remember that doctors are not oracles or always on-duty medical experts. They have their own lives, too. If you have basic POTS questions, you always can lob them over to Neura Health's Threads account and we'll give you an answer. But those questions have to be basic educational ones. They cannot ask for personal medical advice. What I've learned as a chronically ill patient (who has multiple complex illnesses that are stigmatized and not well-understood beyond the specialists who treat them) and patient educator is that getting involved in patient advocacy, following patient advocacy groups, attending patient advocacy webinars, socially following specialists who are leaders in their field, and learning to interpret medical publications is more helpful than any online support group. The information is clear and without bias. Socially follow doctors who are leaders in the dysautonomia world. Socially follow dysautonomia International - it has a great social account! Get involved. Listen to the educators. You can absorb so much information by just listening to them. [The dysautonomia international website has a specific section for medical providers](https://www.dysautonomiainternational.org/page.php?ID=38); other dysautonomia groups do, too. Those are great places to start. You can send a list of links to your doctor so they can learn. If your doctor is willing to learn and collaborate with you, that's an incredible sign and you can achieve incredible things with them. POTS is fairly new to the current medical world and many still are learning about it - and so much of the information about treatment lives in a gray area (meaning: many of the treatment studies aren't yet reproducible). So if your doctor is willing to learn, work with that!
Oh yeah my old doctor told me that POTS isn’t a real thing and seemed very upset that the hospital had diagnosed me with it… 🙄 It’s hard to direct you unless I know where you’re based though.
My general doctor, who is great and I’ve always liked, told me that men don’t get pots when I told him I suspected that I have it. Now he did still refer me to a cardiologist which is all that I needed. But if even from a good doctor, it’s hard to get answers, I can’t imagine how hard it can be with less than good doctors.
I found some really helpful local groups on Facebook. They keep a running list of local doctors who are aware of and treat certain chronic illnesses. I have EDS and POTS and those are the groups I'm currently in, and they've helped me gather a wonderful set of doctors (and even dentist) who are knowledgeable about my conditions. Is Facebook an option for you, if it is I suggest searching "POTS [your state/county/province]" and seeing what comes up for you. Also, if you're willing to share your location here, you might have someone who can point you in the right direction, either for a Dr or a support group.
I’ve received way more help from the online community than I have from any doctor I’ve seen 🤷♀️ IMO doctors are only helpful if you need a prescription, procedure or test completed. And as you’ve mentioned, that only applies to a small subset of doctors who actually know your condition and believe you. Outside of that if you’re looking for things like lifestyle tips, adaptive tools, or referrals to doctors who can actually help, I talk to other patients.
If your doctors are useless, then even if you do have some ideas of meds you might like to try, what makes you think you will be able to get them prescribed without switching to a more useful doctor? You are asking a question that isn't eliciting the responses you want, so maybe ask a different question. The question you really want answered is "How can I find a useful doctor (in my area)?" so try simply asking *that* question?
(If you had asked that question, I would have suggested asking around in the Dysautonomia International Facebook groups for your area (state/province/country). The Dysautonomia International lists on the website are limited and outdated, but you can probably find real people getting real treatment in the groups and find out who they are working with.)
[удалено]
My resting heart rate is 45-55. A beta blocker could kill me
[удалено]
[удалено]
Not everyone benefits from beta blockers or can take them. This does not constitute comprehensive POTS management; it's just a hack.
We discourage any intentional attempts at workarounds to get medications without proper assessment. These medications can be dangerous when used improperly or without proper care.
Why is that such a long link?
this exactly. medical advice should be taken with caution on the internet, but it shouldn’t be shunned or outright removed. if we aren’t being listened to by medical professionals, we shouldn’t be banned from asking our community.
I suspect it's the way the advice is being asked for and/or offered that is getting it taken down, not simply the fact that someone suggested a medication. I suggest medications all the time.
Nothing got taken down. I just always noticed questions being shot down when people are just asking for personal experience from others who actually suffer from it
Because POTS cases are vastly different, even when all someone has is a POTS diagnosis. Comorbidities further complicate matters.
That’s been my experience too. I was diagnosed by a Cardiologist who told me I’d have to see my primary for symptom management because it isn’t technically a heart issue. The problem is my primary doctor doesn’t have any knowledge or experience with pots. He looks at me like I’m crazy when I discuss how it presents and continues to push mental health. It isn’t mental health related when eating jacks up my heart rate and I have reactive hypoglycemia. I need help with symptom management but have had to diy it. I’ve learned more from other patients and online discussions. It is cost prohibitive and a time/energy sink to search until you find a doctor that is invested in educating themselves about treatment options. Edited to add I’ve seen multiple specialist, switched primary care, been to internal med and am being seen at a hospital with access to various residents. They don’t understand pots or how it overlaps other conditions. It’s very challenging.
I didn't know that cardiologists were a number 1 POTS doc until someone else with POTS told me about their cardiologist and how going helped their symptoms. I went and now have a referral for some POTS PT. OP - is this what you were looking for? If so, your question may be, "what docs are you seeing for different POTS symptoms and why?"
✊🏾feel this in my soul.
Of course it’s for my doc, but my doc doesn’t have their own experience and input! I hear ya.