I Always Knew It...

[Goschi]

After I came back home from hospital, I started with a small "research study", which I already wanted to do since a long time.

I invited altogether 16 friends (no blood relatives!) to visit me, which they did on different days within the last 6 days.

Before that I asked them if they would agree to do a Poor Man's Tilt Test at my home. All agreed before their visit.

I did the test by myself. Everyone had to lay down for 30 minutes, I took BP and HR at the 10, 20 and 30 minute mark. After they stood up, I took BP and HR every minute for 15 minutes.

And I knew it, I knew it - sometimes you have a feeling in your stomach: Out of those 16 people, not less than 9 (!!!) would meet the criteria for POTS by reaching a HR of 30 (or very close to 30) within 15 minutes of standing!!

Needless to say, noone of them ever felt any symptoms, they only heard about the existence of POTS from me.

Still don't really know what to do with the results of my "experiment". Up to now, I just wanted to know, whether the feeling in my stomach is right that a reasonable number of people would meet the criteria for POTS, if only they got tested.

However, they don't get any of the symptoms we discuss so intensively on this forum...

[Katybug]

I think the question is whether their HR stabilized quickly after the spike. It is normal for all people to have a HR spike when going from supine to standing. Most recover to a normal rate within a minute of the spike.

[Goschi]

If somebody is interested in the statistics of my sample:

16 people, 11 female

Age range from 21 to 63 years old. (Majority below 45).

The 9 "Potsies":

6 female, 3 male

Youngest 27 (male), oldest 48 (female)

Lowest HR rise I qualified as POTS was 27 in 15 minutes, highest 36.

If you want more details, feel free to ask - I only promised my probands to stay anonymous as far as their names, but also facts like profession, marital status, etc. goes.

[Goschi]

I think the question is whether their HR stabilized quickly after the spike. It is normal for all people to have a HR spike when going from supine to standing. Most recover to a normal rate within a minute of the spike.

Katybug, that's exactely what was waiting and curious for! The "Pots-group" didn't have a short spike after standing up and then stabilizing - just the contrary, they all went up slowly but steadily while standing! Their highest rate was always in the last 1-2 minutes of the measurement.

I would have liked to take longer measurements (f.e. 20 or 30 minutes) - but didn't want to overstress their patience. As there was a common attitude among all probands (also the non-Pots-group) that simply standing and not doing anything is very boring...

[AllAboutPeace]

Goschi,

Interesting to do your own study. It sounds like they were good sports about it.

The heartrate fluctuation in itself is not considered Pots because part of the criteria is that the patient experiences symptoms along with it for a minimum of three months (or six months depending on the source of reference). As you said, those symptoms we talk about on here; the 'syndrome' side of things. I suspect they added that criteria to account for some natural hr fluctuations in the general public. Also, I don't know if this affects your findings, but the current diagnostic criteria is a hr increase of 30 or over 120 bpm within the first 10 mins. {http://www.dysautonomiainternational.org/page.php?ID=30. }

Its interesting though, that HR is a central focus because I consider the sinus tachy one of the least of my problems, really. That part of the illness is not what prevents me from being able to participate in life. For me it's more like an 'indicator' of autonomic dysfunction rather than the main problem. If I were to start eliminating symptoms (and wouldn't that be the best thing ever??... ), there would be others that would go first. It's unfortunate actually that Pots is named the way it is because postural tachycardia doesn't even come close to describing what we experience - as of course you know.

Maybe you could use your information as evidence that we need a better name in order to help people to understand the reality of this illness. I think it's great that you have this opportunity to educate your friends, that helps all of us. I do think it would be important, though, for them to not walk away from this thinking they meet the criteria for Pots, it's too devastating an illness to be reduced to just that fluctuation. I don't think it's that unusual for people from time to time to experience some of the symptoms we do, like brain fog, nausea, dizziness when getting up, etc. I look at HR the same way. It's not a problem until it's a problem...and don't we know it when it is!!

I hope one day we will all be able to put it behind us.

[edriscoll]

Hi Goschi,

Good for you that you found a way to open up a discussion with friends about one of the many, many symptoms that POTS patients go through. But I also caution any one to walk away thinking that HR fluctuation determines a POTS diagnosis. For instance, I have a niece that spends a lot of time laying down reading. She recently asked me if it meant that she has POTS because she frequently feels dizzy and faint when she gets up from the couch. Of course I straightened her out on the facts of the illness and also gave her a strong suggestion that she get up off the sofa and get active - but I leave that for another conversation.

Dysautonomia illnesses have such devastating symptoms and affects that as AllAboutPeace wrote "postural tachycardia doesn't even come close to describing what we experience" In my case for instance, the fluctuations in my HR are not the dramatic fluctuations that many people get. In fact, this caused me to be misdiagnosed for 3 years! I won't go into the reasons why I present a bit differently but the point is many people with these illnesses DO present differently. For that reason, I think focusing on the "postural tachycardia" part of the illness as a sole diagnostic tool is dangerous.

I can appreciate the feelings of confusion regarding the "rarity" of this illness. I was told that this is a very rare illness when I was first diagnosed. However, the more I read and hear about it, the more I realize that it is far more common than first thought. I recently read an article in my local paper in NH about a woman with POTS. The article described her as being the only patient in Southern NH and possibly the state with this illness - yet here I am! And my doctor, also located in NH, has a number of patients with this illness. My point is that even patients don't realize that there are so many others right in their midst. So I can understand the feeling Goschi that it MUST be more common than people realize.

This topic is more proof of why this site is SO important! It is vital that we have these discussions and keep the channels of communication open. And it is also vital that we do whatever we have to to get the word out that we are here and we are doing our best to live with these illnesses in the most productive ways possible.

Thanks to all for contributing to this conversation. Have a great weekend guys!

[blueskies]

My BP machine instructions say not to take bp readings one after another. That a gap longer than 2 minutes between readings need to be observed to get correct readings. Also instructions on home machine are to sit still, feet down, not move at all in order to get correct measurements. I think home bp machines are good for many of us to track our bp but they are not the expensive equipment that my docs and hospital have.

Often I get the hrs increase and I'm feeling quite well. Sometimes I feel like **** and my heart rate can be fine or high. Also, in regard to symptoms, some symptoms come and go and some have become always present, in lesser or greater degrees, in my case.

In my case my pots specialist has not ever placed much importance on pr readings (want to mention here that I don't get some of the extremely high or low measurements that some pots people get). It's all the other symptoms that make life so difficult that all add up to pots, that he pinpointed. For example, the first time I saw him he asked me did I sweat much. I remember my astonishment at the question. I told him that I hadn't sweated in 4 years. But what was astonishing to me was that I'd come to accept not sweating as being normal, not worth mentioning to anyone and was astonished by the 'bingo' sort of moment I experienced when he asked the question. I said to him that no doc had ever asked me that.

Just this moment, as writing this, I went from reclining to sitting position too fast and not only did I feel a bit dizzy, i felt like I was going to vomit. The vomiting bit isn't normal, as far as I know.

Blue

[blueskies]

Just wanted to say that in the 8 years that I have been diagnosed I have experienced pots going form 'rare' (and most docs not having even having heard of it) to much more known (every new gp I've seen in the past few years because my gp was unavailable, away etc., has heard of it -although not a lot really know exactly what it is -yet.

Blue

[badhbt]

I find your study pretty interesting. I am a Nurse and I work in a outpatient setting. We do diagnostic testing on people that have symptoms, usually GI, but some have other things going on. When i have my patients on the monitor and they sit up and their heart rate spikes....I always think....I bet they have POTS. I have wanted to do exactly what you did to your friends....but I think it would be crossing the line in my field. Very interesting though.

When I was in Nursing school and we were studying the heart I would listen to mine. I would walk around and I noticed that mine would increase while standing by a lot. I never was really worried about it because I felt fine. So I know I had POTS before I was diagnosed with POTS and my symptoms hit.

I also remember taking care of a patient in nursing school who was on a telemetry unit. Every time she would get out of bed her heart rate would send the alarms ringing and the nurses would run into the room. She would get agitated because she said she needed to go to the bathroom and she felt fine. I am sure she had POTS too.

[yogini]

Goschi

Not sure your "study" is scientifically meaningful for a number of reasons. But most of all I agree with Katy's question. Unless their HR went up 30 bpm very quickly and stayed there (or continued to increase), I don't think they have POTS. I am pretty sure most healthy people wouldn't have this increase. My friends have standing HRs in the 70s/80s (def less than 100), so they clearly don't have the 30 bpm increase. With POTS, mine is in the 120s/130s if I'm lucky.

[Goschi]

Thanks for the detailed feedback to everyone!!

Just to prevent a basic misunderstanding: I am absolutely sure that none of my tested friends has Dysautonomia! They simply lack every typical symptoms that goes along with this illness.

I only talked about the question of POTS - which may (who knows?) be a rather widespread phenomenon even among people without dysautonomia(?).

Just for 2 things, that were mentioned:

- The pattern, that I found among the 9 "Potsies", i.e. slow and steady rise of HR after standing up is pretty much the same that I personally have. However, I have dysautonomia - my friends definitely don't...

- My BP machine is the exactely the same that my POTS Neuro doc used, when he first dxd me with Pots with a Poor Man's Tilt Test 1 year ago. I bought this BP device in order to have comparable results. During my following hospital stays I could see that also many Hospitals use exactely this device, my POTS was confirmed numerous times with this device (and in addition with 3 TTTs).

[yogini]

POTS is a form of dysautonomia, the most common form.

[Goschi]

Yes, I know - so the 9 cases I caught having the POTS-typical HR-rise may have "silent dysautonomia", or whatever(?).

The idea of doing this "study" came to my mind, when a cardio told me a couple of months ago: "Well, now you have started having lots of dysautonomia-symptoms and we also caught your POTS. But who knows for how many years you may have already had POTS without knowing it?"

[AllAboutPeace]

Goschi,

I thought you might be interested in this 2013 study: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3478101/

Excerpt:

Using only the current 30 bpm criterion, 80% of control subjects would have been diagnosed with orthostatic tachycardia (false positive rate) using a 30 minute tilt table test, compared to only 47% with a 30 minute stand. The false positive rate for a 10 minute tilt was 60%, compared to 33% during a 10 minute stand.

_______________

The numbers of false positives is crazy! I think it's worth noting that during the 10 min stand (which was shown to have less false positives), the subjects were allowed to move their legs.

[Goschi]

AllAboutPeace,

thanks a lot for the link!! I have read the study some time ago, but forgot about the details mentioned.

However - the stand test seems to be more reliable and what I did with my friends was of course a stand test (as I don't have a TTT-Equipment at my home! ;-)).

Anyway, I should have tested all of them longer, 15 minutes of standing might not be enough...

I am just wondering about myself now. Every of my oh so many stand tests lasted at maximum 15 minutes, all my 3 TTTs lasted for 20 minutes only. At any occasion clear POTS was the result.

Should the tests have lasted longer? I always felt like dying after 5 minutes...