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POTS questions

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Hi, new here. I have been diagnosed with hypermobile EDS (well when I was diagnosed it was EDS-HT) for a few years and I still fit the new 2017 criteria. For quite some time now I've been having heart issues (among other things), but I keep getting fobbed off by doctors (although hopefully that'll change soon due to a dodgy ECG). Essentially, I think I have POTS (as well as this issue that the ECG picked up on).

When I do the Poor Man's TTT on myself my heart rate goes from usually around 60-75 laying down to above 130 - this happens every single time, and sometimes I even pass out. Like today, it went from 77 to 168 at the max during the duration of the Poor Man's TTT (stayed above 140 for the whole time basically).  Having said that, I noticed that after laying down when I completed the ten minutes it my heart rate went down to 55 and stayed there, is that normal? Pretty much any time I try this my heart rate decreases to below what it was before I tried the test out. It's like my body is over compensating for the exertion?

Also, my symptoms seem to get worse after I've eaten something. Is that common?

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Hi floating

The definition of POTS is a change in hr of 30 bpm or more from prone to standing.  So if your hr is going from 60-75 to over 130 just standing up I think that indicates you need further investigation with a specialist.  Some people w POTS do experience bradycardia.

https://www.dinet.org/content/information-resources/pots/how-is-pots-detected-r99/

Yes some people have worsened symptoms after eating.  That happened and happens to me.  I think the theory is that if your blood volume is already low and then you eat, blood pools around the stomach after eating and essentially you have even lower blood volume in the rest of your body.  I found that eating smaller meals (more frequently) helped.  Also more fluids helped me.

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2 hours ago, MomtoGiuliana said:

Hi floating

The definition of POTS is a change in hr of 30 bpm or more from prone to standing.  So if your hr is going from 60-75 to over 130 just standing up I think that indicates you need further investigation with a specialist.  Some people w POTS do experience bradycardia.

https://www.dinet.org/content/information-resources/pots/how-is-pots-detected-r99/

Yes some people have worsened symptoms after eating.  That happened and happens to me.  I think the theory is that if your blood volume is already low and then you eat, blood pools around the stomach after eating and essentially you have even lower blood volume in the rest of your body.  I found that eating smaller meals (more frequently) helped.  Also more fluids helped me.

 

That's what I thought too, seems to be tough to get people to do these kinds of referrals here in the UK! Hopefully this referral to cardiology will be beneficial though and they'll be able to investigate what I think may be POTS. 

I have got hypovolemia, had no idea that could be affecting the POTS too. I do tend to eat smaller meals, but am unable to do so frequently - it makes me feel sick and sometimes makes me vomit. That's actually another thing that I need to look into the causes of.  I also struggle with fluid intake too, but have been working on this. 

Thanks for your reply! :)

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So, did a PM's TTT and made a note of my HR at different intervals. Got the following results:

Supine for 10 minutes at rest:  80BPM (little high for me).

HR immediately on standing: 151BPM.

2 minutes of standing: 146BPM.

5 minutes of standing: 163BPM.

10 minutes of standing: 162BPM. 

The peak of my HR during the 10 minutes of standing was 174BPM.

 

Would it be worth keeping a recording of this to show the cardiologist when I see them? How regularly should I keep a record? I felt extremely symptomatic and almost passed out many times during the test. 

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I'm not a doctor, but with those very high rates and EDS I think there is a very good chance you have POTS.  I would not risk passing out and I don't think you even need to spend much time keeping a record.  I think you need to just find the right specialist - there is a doctors list on the main website. 

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When I was diagnosed with POTS in the emergency room, my resting heart rate (laying down) was 55 bpm! Hard to believe considering it was about 130 on standing. I was fainting before it could get any higher, so who knows what a true tilt table test would have shown for max heart rate, but nonetheless, it's not important how high a person's heart rate goes...as long as it is over 30 bpm over resting or above 120 bpm. I personally think a poor man's tilt table test is just as reliable an indicator as using a true tilt table. There is nothing much different about the two, that I can tell. Does any one know differently?

I just bought a FitBit a few weeks ago to keep an easy eye on my heart rate. My heart rate has been (fortunately) boringly normal (woot woot!)....up until this morning. Glad to have the fit bit. Was an easy way to keep on eye on what my heart was doing without having to hold my fingers to my neck to feel a pulse as I stood still, or moved, around the house. This isn't to say I would endorse buying one...I feel it is perhaps a bit limited in what it can do. Whenever I felt a palpitation, it seemed to lose track of my heart rate for about 10 seconds.

However...for the first time in a year, (have kept pretty stable on florinef, with the odd tachycardia here and there), I woke up this morning feeling "off". I instinctively sort of knew it was because my heart rate was probably fast, and sure enough, I was about 90 bpm while just sitting still watching tv. Upon standing (still), I was at a steady 120-125 bpm for at least 5 minutes straight.  That's about 60 bpm over my typical resting (laying down) rate, so that's quite a change.

It really caught me off guard though...after a year of being so much better than the way I was a year ago when I was fainting every time I stood (aka- before florinef), I had thought those days may have been behind me . Lasted for an hour or two and then I got busy and stopped paying attention. Odd, but there we go -- I guess POTS can come and go, no matter how much time between episodes.

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On 11/18/2017 at 10:40 PM, yogini said:

I'm not a doctor, but with those very high rates and EDS I think there is a very good chance you have POTS.  I would not risk passing out and I don't think you even need to spend much time keeping a record.  I think you need to just find the right specialist - there is a doctors list on the main website. 

 

I guess I'm just worried about being fobbed off again. But thank you for your support! I'll take a look at the doctors list too. Do you know if there's doctors on there that practice in the UK?

 

12 hours ago, Nathalie said:

When I was diagnosed with POTS in the emergency room, my resting heart rate (laying down) was 55 bpm! Hard to believe considering it was about 130 on standing. I was fainting before it could get any higher, so who knows what a true tilt table test would have shown for max heart rate, but nonetheless, it's not important how high a person's heart rate goes...as long as it is over 30 bpm over resting or above 120 bpm. I personally think a poor man's tilt table test is just as reliable an indicator as using a true tilt table. There is nothing much different about the two, that I can tell. Does any one know differently?

I just bought a FitBit a few weeks ago to keep an easy eye on my heart rate. My heart rate has been (fortunately) boringly normal (woot woot!)....up until this morning. Glad to have the fit bit. Was an easy way to keep on eye on what my heart was doing without having to hold my fingers to my neck to feel a pulse as I stood still, or moved, around the house. This isn't to say I would endorse buying one...I feel it is perhaps a bit limited in what it can do. Whenever I felt a palpitation, it seemed to lose track of my heart rate for about 10 seconds.

However...for the first time in a year, (have kept pretty stable on florinef, with the odd tachycardia here and there), I woke up this morning feeling "off". I instinctively sort of knew it was because my heart rate was probably fast, and sure enough, I was about 90 bpm while just sitting still watching tv. Upon standing (still), I was at a steady 120-125 bpm for at least 5 minutes straight.  That's about 60 bpm over my typical resting (laying down) rate, so that's quite a change.

It really caught me off guard though...after a year of being so much better than the way I was a year ago when I was fainting every time I stood (aka- before florinef), I had thought those days may have been behind me . Lasted for an hour or two and then I got busy and stopped paying attention. Odd, but there we go -- I guess POTS can come and go, no matter how much time between episodes.

 

Wow, haha, yeah, mine often goes down really low but when it's just during the day and I'm on my laptop or whatever it's usually around 60-70 which I use as my resting for TTTs (as that's usually what it is when checking it), I always feel awful the lower it is though because my blood pressure is usually pretty low too. Do you have low BP? And I'm not sure regarding your question about the TTT compared to the poor man's, the true one kind of scares me. haha.

I also have a FitBit, I've had one for a few years now. They're useful bits of kit, but I also have a pulse oximeter as when my HR is too high my FitBit can't keep up.  So they're not perfect, but still good (I used to have a Charge HR and now I have the Blaze). 

Sorry to hear you're feeling rough again. Hopefully it's just a blip and things get better again!

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Yes UK doctors are listed.  You could also post a topic asking for recommendations for doctors in the UK from forum members.

https://www.dinet.org/physicians/

BTW I also had very high hr like you describe on standing.  My TTT my hr went as high as 168.  Hope you can be seen and start trying appropriate treatments w a specialist soon.

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You can of course keep good records, it won't hurt.  I just meant don't stress out or make yourself sick doing it.  We get a lot of posts in this forum from people asking about POTS.  Usually I think maybe the person could have POTS, but what you describe seems pretty spot on.   I think even an electrophysiologt would be concerned about an HR of 160 walking around - if you can't find a POTS specialist near you, that's who I would try to see.  If you have a doctor who diagnosed you with EDS, that could be another person to ask, since many people have both POTS and EDS.

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On 11/20/2017 at 5:07 PM, MomtoGiuliana said:


Yes UK doctors are listed.  You could also post a topic asking for recommendations for doctors in the UK from forum members.

https://www.dinet.org/physicians/

BTW I also had very high hr like you describe on standing.  My TTT my hr went as high as 168.  Hope you can be seen and start trying appropriate treatments w a specialist soon.

Thank you! And I hope things are getting better for you now. What kind of thing helps you the most?

1 hour ago, yogini said:

You can of course keep good records, it won't hurt.  I just meant don't stress out or make yourself sick doing it.  We get a lot of posts in this forum from people asking about POTS.  Usually I think maybe the person could have POTS, but what you describe seems pretty spot on.   I think even an electrophysiologt would be concerned about an HR of 160 walking around - if you can't find a POTS specialist near you, that's who I would try to see.  If you have a doctor who diagnosed you with EDS, that could be another person to ask, since many people have both POTS and EDS.

Thank you.  I have no idea what my HR is walking around. Can't really walk a whole lot anymore and am looking into getting a wheelchair because of it. Struggle even walking around the house and can't go downstairs very easily (the walking issue is a POTS and EDS thing though so hoping if I get POTS under some kind of control then I can work on my EDS).  Kind of embarrassing as a 23 year old. Will look into getting an electrophysiologist referral. They specialise in the autonomic system right? I did find a list of POTS specialists in the UK on a UK based POTS site.  If the cardiologist that I get referred to first isn't helpful then I'll ask my GP to refer me to one of the POTS specialists listed here or on the other site.  The person who diagnosed me no longer works within the NHS, and my mum wants to try and not go down the private route for POTS testing due to how expensive it will be. Having said that, the private place I have a referral to for my EDS does have an attached autonomic unit (Hospital of St. John and St. Elizabeth) so if the NHS route fails I know I have the autonomic unit to fall back on. Just don't currently have the money to go private for everything at the moment and would much rather not be so much of a burden on my parents.

Thanks again!

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