Midori

“30 bpm within the first 10 minutes“ criteria for Pots: question about this!

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So, many sites say that upon standing upright, from lying down, you should go up more than 30 bpm above your lying down pulse.  What I don’t understand is ‘some’ level of sliding back down still within the criteria of pots?  Or are you supposed to be maintaining that exact initial standing pulse the whole time?

 

For example for me, if I lie down I’m around 70. I stand up and i shoot up to 120-130 for a few minutes. Then slide down to 105-ish and stay there for the foreseeable future.  Sometimes I may wobble into the 90s. But always that initial stand up is 120 or 130 for a minute or two.  Is this characteristic of POTS?

 

Was just curious how POTS behaves in the real world with patients and arming myself with knowledge before my appointment with a cardiologist next week.

 

Thanks so much!

 

 

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My understanding is that the increase of 30 or more bpm should take place within those ten minutes, but they do not have to be sustained for the whole ten.

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Great question! The first neurologist I saw who is the “pots specialist” in my area said I don’t meet the requirements for Pots because my heart relsolved itself on minute 7 or something like that. Even tho I went from 80 to 156. However every other doctor I have seen and my current neurologist says I have pots so I guess it’s a matter of opinion. 

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@Jessica_ - this drives me crazy - they just get so stuck on numbers yet it's up to interpretation? What about the person and their symptoms? --- I have encountered too many physicians that get stuck on the tachycardia. It is ONE symptom of POTS - yet they keep making that the one that makes-or-breaks a diagnosis? --- When I got diagnosed it was after 2 years of terrible disabling POTS symptoms, several holters showing sustained HR's over 150, syncopal episodes all over the place, 2 TTT's ( one NCS, one "interpreted" as normal but actually positive for POTS ) and 4 cardiologists that all got fired by me because they ignored the symptoms. When I finally saw my specialist he listened to my story and said I have POTS. He showed me a list of symptoms and said: "which ones do you have?" I said " all of them" and he said " That's what they all say". Then - just to make it official  - he ordered NE levels which turned out to be very elevated, hence confirming hyperadrenergic POTS.   That's the difference between a doctor who look at numbers or protocols and a physician who treats a person with a condition. Sometimes I think that the docs who interpret tests by numbers do so because they really do not understand this condition and the fact that it affects the WHOLE person and the WHOLE body/mind/spirit of that person. 

@Midori - It is my understanding that currently the HR has to be above 30 BPM for 10 minutes of standing. My "interpretation" of that is that if you go from 60 to 120 and it goes down to 90 within 10 minutes AND YOU HAVE SYMPTOMS then that is POTS because 90 is still 30 BPM above 60. ( Now - if you drop to 89 you may not have it, depending on the "interpreting" physician ). 

There - I got it off my chest - thanks for listen to my venting. God help us all!

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A healthy person might start at 70 jump up to 120 for a couple of minutes and settle back down into the 90s. That generally does not  indicate POTS.  You’d need a sustained increase of 30+ bpm. So in other words 10 mins or an hour after standing your HR should still be 30+ from where you started. It’s a bit more complicated and individualized but that is the general rule.

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Thank you everyone for your replies!

This is really interesting. I agree with you guys. It’s pronsbky much more nuanced. 

when I took my husband’s pulse the other day he doesn’t even budge when stands up. Exactly the same sitting and standing!! Lol

today I am sustaining quite high all day when I stand around 100-115. Which is enough so make me feel bad. 

 

Thanks again

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I wanted to add as well, when they say that 30 bpm, that’s from lying down to standing correct? Sitting to standing will give an increase of 20-50 BPM but from lying it’s much more. lying down can go from 60 BPM up. 

 

Thanks!

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I saw my cardiologist today and I told him about this number discussion. He says that there are many physicians that are uncomfortable with dysautonomia because they have nothing BUT the tachycardia to go by ( which means they would have to go by symptoms as perceived by the patient without any proof ). That's why they get so hung up on it. He also said that whenever there is a conference for cardiologists and the subject of POTS comes up everyone stops listening or leaves because no one wants to deal with these issues. Also that there are quite a lot of patients that have normal or minimal symptoms but are convinced that they have POTS so the docs need to have a way to differentiate these patients.  

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8 hours ago, Pistol said:

I saw my cardiologist today and I told him about this number discussion. He says that there are many physicians that are uncomfortable with dysautonomia because they have nothing BUT the tachycardia to go by ( which means they would have to go by symptoms as perceived by the patient without any proof ). That's why they get so hung up on it. He also said that whenever there is a conference for cardiologists and the subject of POTS comes up everyone stops listening or leaves because no one wants to deal with these issues. Also that there are quite a lot of patients that have normal or minimal symptoms but are convinced that they have POTS so the docs need to have a way to differentiate these patients.  

Good to know! Thanks for asking him. 

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19 hours ago, Pistol said:

@Jessica_ - this drives me crazy - they just get so stuck on numbers yet it's up to interpretation? What about the person and their symptoms? --- I have encountered too many physicians that get stuck on the tachycardia. It is ONE symptom of POTS - yet they keep making that the one that makes-or-breaks a diagnosis? --- When I got diagnosed it was after 2 years of terrible disabling POTS symptoms, several holters showing sustained HR's over 150, syncopal episodes all over the place, 2 TTT's ( one NCS, one "interpreted" as normal but actually positive for POTS ) and 4 cardiologists that all got fired by me because they ignored the symptoms. When I finally saw my specialist he listened to my story and said I have POTS. He showed me a list of symptoms and said: "which ones do you have?" I said " all of them" and he said " That's what they all say". Then - just to make it official  - he ordered NE levels which turned out to be very elevated, hence confirming hyperadrenergic POTS.   That's the difference between a doctor who look at numbers or protocols and a physician who treats a person with a condition. Sometimes I think that the docs who interpret tests by numbers do so because they really do not understand this condition and the fact that it affects the WHOLE person and the WHOLE body/mind/spirit of that person. 

@Midori - It is my understanding that currently the HR has to be above 30 BPM for 10 minutes of standing. My "interpretation" of that is that if you go from 60 to 120 and it goes down to 90 within 10 minutes AND YOU HAVE SYMPTOMS then that is POTS because 90 is still 30 BPM above 60. ( Now - if you drop to 89 you may not have it, depending on the "interpreting" physician ). 

There - I got it off my chest - thanks for listen to my venting. God help us all!

🙌🏻 I am right there with you! You are completely right that tachycardia is just ONE of the symptoms, and honestly not my worst one! I’m sorry to hear it took you 2 whole years of misery before you finally got the help you desperately needed. This is a complicated illness but we shouldn’t get punished for that. 

 I still have a bad taste in my mouth from that neurologist. Who in my mind was going to be the one doctor that would understand what I am going thru and instead she treated me as if I didn’t matter. Because I didn’t meet her criteria. She wouldn’t even speak to me. She just did the TTT and then told her assistant to send me back to my EP.  It was devastating. Since battling this illness I have lost my faith in our medical system. Granted, there are great doctors out there who will treat you like a human being and have compassion. But there seems to be more insensitive doctors who are after money and don’t have time to DO THEIR JOB and get to the bottom of things. Seems they have forgotten who they work for.  Sure I might be steering off topic here but I’m frustrated and venting too! Lol thank god we have this forum, we are not alone! 

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21 hours ago, Jessica_ said:

🙌🏻 I am right there with you! You are completely right that tachycardia is just ONE of the symptoms, and honestly not my worst one! I’m sorry to hear it took you 2 whole years of misery before you finally got the help you desperately needed. This is a complicated illness but we shouldn’t get punished for that. 

 I still have a bad taste in my mouth from that neurologist. Who in my mind was going to be the one doctor that would understand what I am going thru and instead she treated me as if I didn’t matter. Because I didn’t meet her criteria. She wouldn’t even speak to me. She just did the TTT and then told her assistant to send me back to my EP.  It was devastating. Since battling this illness I have lost my faith in our medical system. Granted, there are great doctors out there who will treat you like a human being and have compassion. But there seems to be more insensitive doctors who are after money and don’t have time to DO THEIR JOB and get to the bottom of things. Seems they have forgotten who they work for.  Sure I might be steering off topic here but I’m frustrated and venting too! Lol thank god we have this forum, we are not alone! 

I TOTALLY understand what you mean. I have had 15 years of “mystery illnesses”. Doctor after doctor and so many doctors dismissing me only for two or three doctors down the road to figure out the issue. It took 3 doctors just to figure out my peripheral neuropathy as it was only temperature dependent. it’s been a long road. Next week I go in to hopefully get this diagnosis of POTS but I get sort of  weary just thinking about explaining to this doctor, showing her all the evidence etc. it’s so exhausting. 

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@Midori - you are doing well, advocating for ourselves is the best thing we can do. My PCP and cardiologist are not experts but are both willing to learn along with me. I do have an autonomic specialist but he is 8 hours away and I can't just go there whenever I am unstable. The more YOU know the better you will be able to judge the abilities of your doc. --- Have you read the book "the dysautonomia project"? It is an excellent source of information for you, your doc and your family. I bought two from amazon - one for me and one for my PCP. You can get it at the website of the same name or off Amazon. -- Be well, take care of yourself!

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3 hours ago, Pistol said:

@Midori - you are doing well, advocating for ourselves is the best thing we can do. My PCP and cardiologist are not experts but are both willing to learn along with me. I do have an autonomic specialist but he is 8 hours away and I can't just go there whenever I am unstable. The more YOU know the better you will be able to judge the abilities of your doc. --- Have you read the book "the dysautonomia project"? It is an excellent source of information for you, your doc and your family. I bought two from amazon - one for me and one for my PCP. You can get it at the website of the same name or off Amazon. -- Be well, take care of yourself!

Yes, we have to be our greatest advocates. After 15 years of this I feel like so tired and much like I’m suiting up for another battle but I’m also feel great relief that I finally have found the core of so much of my issues (neuropathy, IBS, incredible stress type feeling that only went away with lying down or worsened with pms that I know know is my heart racing). Thank you so much for that book recommendation! I was hoping to find a book on POTS. I will definitely check this out. Thanks  so much! 

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