You can't make them understand if they're not willing to listen.
Having said that, some doctors do not like patients suggesting diagnoses to them. This is why you should always lead with your symptoms rather than your thoughts surrounding what it might be.
When I had a PMTT, it was with a BP cuff, so not constant, but it might be different elsewhere. During my tilt it is constantly monitored, but at each specific time it is noted what it was (e.g. 1 minute, 2 minutes, etc.).
I agree about leading with symptoms. I told my doctor I’d have episodes of near fainting with tunnel vision and that I’d have to sit down. I said I tried to figure out what was different at those times and the only thing I found was my heart rate was fast. She immediately said “Sounds like POTS!” Then I played dumb and pretended I didn’t know what that was. 😊
Yeah 🙁 It's so hard here because I kind of have to get it right with the first doctor I see..
Also I don't know what to do if they decide to do the PMTT because my hr increases almost immediately when I stand up and then it starts to go down after like 15 seconds so not enough to be caught by the blood pressure cuff possibly 🙁
This is so difficult!
My GP started taking me seriously when I showed her a video. I had my friend take a video of me doing the poor man’s tilt table test at home - the video showed my Apple Watch and pulse oximeter when standing up (after lying down for 20 minutes). It visibly and rapidly elevated over 45 beats per minute (only 30 beats per minute increase needed as an adult). The video continued, showing me lying down. Instantly my heart rate decreased back down to my baseline resting heart rate.
My advice, make a video. Before discussing your symptoms, show the video to the doctor. Then once you’ve (hopefully) got the doctor listening go over your other symptoms.
Best of luck!
I had a hard time with getting my POTs officially diagnosed until I saw a doctor recommended by the EDS society.
I had been keeping track of my resting heart rate before getting up in the morning and then what it did after standing up. I would have at least a 30 beat per minute increase in heart rate, and on a bad day, it could be more like 50 beats per minute increase just standing there.
I had an Apple Watch and I started checking my heart rate whenever I wasn’t feeling good and turns out, my heart rate would be 115 just standing there making breakfast.
I had no luck at my cardiologist office getting it diagnosed as they didn’t have a tilt table and their technicians didn’t know how to do the poor man’s test. Neither did my primary doctor. I had a referral to an autonomic clinic which fell through because the cardiologist’s office was in mayhem because it was bought out by the local hospital.
Finally I got an appointment with a doctor out of network and paid out of pocket for someone recommended by the EDS society. She was fantastic. I got my hEDS diagnosis as well as POTs and several other diagnoses.
I personally only go to planned docters visits from a docter who i knòw takes my diagnosis (or suspected diagnosis) seriously. It is such a relief. They take me seriously because they take it (wether that is POTS, hEDS or endometriosis) seriously. It's very hard to convince someone you have something if they don't take that thing seriously.
If you have the budget for some gear - I got a Polar chest strap heart rate monitor plus the iPhone app TachyMon. (I don’t have an Apple Watch, but if you already do, all you’d need is the app). This combination takes continuous heart rate data, and you can also log symptoms.
This might give you some visible data. It helped me fully convince myself, which helped me better advocate for myself with my doctors. I’m still early in my diagnosis process for both EDS and PoTS, but my primary care doc did give me a preliminary POTS diagnosis.
For me, it was seeing not only the HR spikes, but the massive drops when I would bend over. Doing “head, shoulders, knees and toes” made the graph look like a yo-yo rollercoaster. (I have toddlers)
I’d like the name of your doctor! I *do not* have POTS; just extremely low blood pressure and I’m really tired of being tested for POTS! And I’m really tired of a new fucking dx every time I go in 😡 I’m beginning to think my doctors are making shit up to get *my* attention 🙄
Regardless of the doctor’s opinion, you have the right to request thorough consideration and testing for POTS, or a referral to a specialist who is qualified to conduct such tests.
Be Prepared: Clearly outline your symptoms and their impact on your daily life, providing specific examples if possible.
- Initiate the Conversation: Begin by saying, *”I feel that my previous concerns have not been fully addressed. I would like to explore the possibility of testing for POTS, as I believe it could explain my symptoms.”*
- Ask Direct Questions: For instance, *”What are the criteria for testing for POTS? Could we review them together to determine if I meet the qualifications?”*
- Request Specific Action: *”I am requesting further testing or a referral to a specialist who can assess me for POTS.”*
They should not deny your request.
If they do, firmly request a written explanation for their refusal to test or refer you. This may lead them to reconsider their decision, or they will provide you with the necessary written justification.
*“Since you are unable to authorize testing or a referral, I need a written statement detailing the reasons for this decision.”*
Should you receive such a letter, temporarily set it aside and consult another doctor, informing them that your concerns have been overlooked and stressing your need for serious consideration regarding this matter.
I know this process can be difficult, but it will become more manageable over time. *You must* continue to advocate for yourself, and you will gradually begin to understand the dynamics between doctor and patient.
You hold the power.
No one cared about my complaints until i started experiencing syncopes aka almost fainting. I ended up with a dysautonomia diagnosis because I was 140-150bpm for my entire tilt table test including while I was laying down, with little change between positions. Didn’t happen to me until my mid 20s and by then my resting heart rate was around 100 bpm. I’d suggest focusing on the symptoms instead of the actual pots diagnosis because they can also be signs of other things like thyroid disorders and other forms of dysautonomia. I’m currently chasing a CCI specialist because I’ve now gone down every avenue and there isn’t another explanation that hasn’t been explored. It’s known to cause tachycardia and I’m also experiencing every other symptom. I’ve been turned away by multiple neurologists who can’t see what is wrong on MRIs and now have to find one who specializes because I am disabled by my neck alone. One thing that’s new knowledge to me is MRIs and other less accurate imaging doesn’t always show our injuries and joint instability and they end up being used to dismiss us.
You can't make them understand if they're not willing to listen. Having said that, some doctors do not like patients suggesting diagnoses to them. This is why you should always lead with your symptoms rather than your thoughts surrounding what it might be. When I had a PMTT, it was with a BP cuff, so not constant, but it might be different elsewhere. During my tilt it is constantly monitored, but at each specific time it is noted what it was (e.g. 1 minute, 2 minutes, etc.).
I agree about leading with symptoms. I told my doctor I’d have episodes of near fainting with tunnel vision and that I’d have to sit down. I said I tried to figure out what was different at those times and the only thing I found was my heart rate was fast. She immediately said “Sounds like POTS!” Then I played dumb and pretended I didn’t know what that was. 😊
Yeah 🙁 It's so hard here because I kind of have to get it right with the first doctor I see.. Also I don't know what to do if they decide to do the PMTT because my hr increases almost immediately when I stand up and then it starts to go down after like 15 seconds so not enough to be caught by the blood pressure cuff possibly 🙁
You could ask if you could wear a pulse ox on your finger while you do it. They most likely would have that equipment on hand.
It doesn't go down to the original bpm but it stays up only about 20
This is so difficult! My GP started taking me seriously when I showed her a video. I had my friend take a video of me doing the poor man’s tilt table test at home - the video showed my Apple Watch and pulse oximeter when standing up (after lying down for 20 minutes). It visibly and rapidly elevated over 45 beats per minute (only 30 beats per minute increase needed as an adult). The video continued, showing me lying down. Instantly my heart rate decreased back down to my baseline resting heart rate. My advice, make a video. Before discussing your symptoms, show the video to the doctor. Then once you’ve (hopefully) got the doctor listening go over your other symptoms. Best of luck!
I had a hard time with getting my POTs officially diagnosed until I saw a doctor recommended by the EDS society. I had been keeping track of my resting heart rate before getting up in the morning and then what it did after standing up. I would have at least a 30 beat per minute increase in heart rate, and on a bad day, it could be more like 50 beats per minute increase just standing there. I had an Apple Watch and I started checking my heart rate whenever I wasn’t feeling good and turns out, my heart rate would be 115 just standing there making breakfast. I had no luck at my cardiologist office getting it diagnosed as they didn’t have a tilt table and their technicians didn’t know how to do the poor man’s test. Neither did my primary doctor. I had a referral to an autonomic clinic which fell through because the cardiologist’s office was in mayhem because it was bought out by the local hospital. Finally I got an appointment with a doctor out of network and paid out of pocket for someone recommended by the EDS society. She was fantastic. I got my hEDS diagnosis as well as POTs and several other diagnoses.
I personally only go to planned docters visits from a docter who i knòw takes my diagnosis (or suspected diagnosis) seriously. It is such a relief. They take me seriously because they take it (wether that is POTS, hEDS or endometriosis) seriously. It's very hard to convince someone you have something if they don't take that thing seriously.
If you have the budget for some gear - I got a Polar chest strap heart rate monitor plus the iPhone app TachyMon. (I don’t have an Apple Watch, but if you already do, all you’d need is the app). This combination takes continuous heart rate data, and you can also log symptoms. This might give you some visible data. It helped me fully convince myself, which helped me better advocate for myself with my doctors. I’m still early in my diagnosis process for both EDS and PoTS, but my primary care doc did give me a preliminary POTS diagnosis. For me, it was seeing not only the HR spikes, but the massive drops when I would bend over. Doing “head, shoulders, knees and toes” made the graph look like a yo-yo rollercoaster. (I have toddlers)
I’d like the name of your doctor! I *do not* have POTS; just extremely low blood pressure and I’m really tired of being tested for POTS! And I’m really tired of a new fucking dx every time I go in 😡 I’m beginning to think my doctors are making shit up to get *my* attention 🙄
Regardless of the doctor’s opinion, you have the right to request thorough consideration and testing for POTS, or a referral to a specialist who is qualified to conduct such tests. Be Prepared: Clearly outline your symptoms and their impact on your daily life, providing specific examples if possible. - Initiate the Conversation: Begin by saying, *”I feel that my previous concerns have not been fully addressed. I would like to explore the possibility of testing for POTS, as I believe it could explain my symptoms.”* - Ask Direct Questions: For instance, *”What are the criteria for testing for POTS? Could we review them together to determine if I meet the qualifications?”* - Request Specific Action: *”I am requesting further testing or a referral to a specialist who can assess me for POTS.”* They should not deny your request. If they do, firmly request a written explanation for their refusal to test or refer you. This may lead them to reconsider their decision, or they will provide you with the necessary written justification. *“Since you are unable to authorize testing or a referral, I need a written statement detailing the reasons for this decision.”* Should you receive such a letter, temporarily set it aside and consult another doctor, informing them that your concerns have been overlooked and stressing your need for serious consideration regarding this matter. I know this process can be difficult, but it will become more manageable over time. *You must* continue to advocate for yourself, and you will gradually begin to understand the dynamics between doctor and patient. You hold the power.
Thank you so much!!! This helps a lot!!!! ❤️👍🏻
This is why we get POTs with EDS. One of the best explanations for it. https://youtu.be/Cm16Hryi6eE?feature=shared
No one cared about my complaints until i started experiencing syncopes aka almost fainting. I ended up with a dysautonomia diagnosis because I was 140-150bpm for my entire tilt table test including while I was laying down, with little change between positions. Didn’t happen to me until my mid 20s and by then my resting heart rate was around 100 bpm. I’d suggest focusing on the symptoms instead of the actual pots diagnosis because they can also be signs of other things like thyroid disorders and other forms of dysautonomia. I’m currently chasing a CCI specialist because I’ve now gone down every avenue and there isn’t another explanation that hasn’t been explored. It’s known to cause tachycardia and I’m also experiencing every other symptom. I’ve been turned away by multiple neurologists who can’t see what is wrong on MRIs and now have to find one who specializes because I am disabled by my neck alone. One thing that’s new knowledge to me is MRIs and other less accurate imaging doesn’t always show our injuries and joint instability and they end up being used to dismiss us.