POTS or what, based on these heart rate figures?

[Sasha]

In an attempt to get a specialist referral for what I thought was POTS, I did a 30-minutes poor man's tilt test (i.e. lay down for 20 mins, took my HR and then stood up).

My laying-down HR was 73 bpm. By 10 mins, it was 92. It kept going up and was 106 at 30 minutes.

According to the POTS criteria, your HR has to go up 30bpm above baseline within 10 minutes and mine didn't. On the other hand, is it normal for it just to keep going up and up? It was 35 bpm above baseline after 30 minutes.

I don't feel dizzy on standing but I do find sitting and standing difficult and have to lie down for 15 minutes in every hour because I get exhausted, even if I'm just sitting with my feet up. I find standing more tiring than walking, a classic OI symptom.

POTS? And if not, is that heart rate pattern remotely normal?

 

[Sushi]

In an attempt to get a specialist referral for what I thought was POTS, I did a 30-minutes poor man's tilt test (i.e. lay down for 20 mins, took my HR and then stood up).

My laying-down HR was 73 bpm. By 10 mins, it was 92. It kept going up and was 106 at 30 minutes.

According to the POTS criteria, your HR has to go up 30bpm above baseline within 10 minutes and mine didn't. On the other hand, is it normal for it just to keep going up and up? It was 35 bpm above baseline after 30 minutes.

I don't feel dizzy on standing but I do find sitting and standing difficult and have to lie down for 15 minutes in every hour because I get exhausted, even if I'm just sitting with my feet up. I find standing more tiring than walking, a classic OI symptom.

POTS? And if not, is that heart rate pattern remotely normal?

Hi Sasha,

That was really a project!

No, your heart rate response isn't "normal" but you would get even more insights by checking your BP along with your heart rate. Can you get hold of a BP meter that measures pulse and has a memory? Then you could show the results to a doctor. The memory is "time-stamped" so it would show a clear pattern.

Sushi

 

[Sasha]

Hi Sushi - I did an HR/BP poor man's tilt test about three years ago, taking measurements at 5-minute intervals and as a result my GP sent me to a cardiologist who hooked me up for resting measurements, then had me stand for 10 minutes, then dismissed the idea that anything was wrong and sent me away. My GP has just sent these latest HR figures to another cardiologist and again, they've been dismissed as 'normal' and they're not accepting the referral.

I'm trying to find those old results now, but I still have the home HR/BP monitor and could have another go tonight. But I think the old results on HR, at least, were similar to these.

I'm not sure what we're looking for, though. POTS has been ruled out twice and two cardiologists are calling this HR pattern 'normal'. It doesn't look normal to me but I don't know what normal would look like. I don't know how to take this forward and neither does my GP.

 

[Sallysblooms]

Doesn't sound like POTS. My heart rate goes up quickly. I am on several forums for POTS and Dysautonomia. There is usually 30 beats or much higher within a couple of minutes. Also, it is very hard to stand at all, but everyone is a bit different. I was unable to even sit at first, now I stand much better, but need to keep moving to keep the blood going to my head.

The best thing to do is have a heart rate monitor with a chest strap and watch. Then you can really keep track easily.

You might have OI. Usually POTSies get very dizzy, chest pain, rapid heart rate, nausea, and many, many symptoms.

 

[Sushi]

Hi Sushi - I did an HR/BP poor man's tilt test about three years ago, taking measurements at 5-minute intervals and as a result my GP sent me to a cardiologist who hooked me up for resting measurements, then had me stand for 10 minutes, then dismissed the idea that anything was wrong and sent me away. My GP has just sent these latest HR figures to another cardiologist and again, they've been dismissed as 'normal' and they're not accepting the referral.

I'm trying to find those old results now, but I still have the home HR/BP monitor and could have another go tonight. But I think the old results on HR, at least, were similar to these.

I'm not sure what we're looking for, though. POTS has been ruled out twice and two cardiologists are calling this HR pattern 'normal'. It doesn't look normal to me but I don't know what normal would look like. I don't know how to take this forward and neither does my GP.

Hi,

You are in a "catch 22" because only more sophisticated testing will reveal the patterns that are likely abnormal. Cardiologists are often not interested in or knowledgeable about autonomic issues.

When you do the "poor man's tilt" it is good to take your measurements every minute--with your arm supported at chest level.
Unfortunately, some important symptoms only show up after 20 or more minutes and that is too hard to do at home. Also, you really need other measurements going on at the same time (like electrocardiogram) to see what the autonomic nervous system is actually doing.

But your heart rate readings are definitely not normal. Normal, is when your heart rate goes up about 10 beats when you stand and then quickly returns to baseline. What does your BP do when you are standing?

There are many types of autonomic dysfunction.

Best,
Sushi

 

[Sasha]

You are in a "catch 22" because only more sophisticated testing will reveal the patterns that are likely abnormal. Cardiologists are often not interested in or knowledgeable about autonomic issues.

This one specialises in OI so I'd hoped to get a referral. Argh...

But your heart rate readings are definitely not normal. Normal, is when your heart rate goes up about 10 beats when you stand and then quickly returns to baseline. What does your BP do when you are standing?

Useful to know they're not normal - I'm surprised the specialist doesn't recognise that. Is there some textbook graph somewhere of what a normal HR pattern on standing is?

I don't know what my BP does. I will try to find out.

Don't know where to go with the data now, though!

 

[Sasha]

Just found my letter to my GP from three years ago telling him my HR rose by more than 30bpm in ten minutes, which we later replicated in his surgery, before the first cardiologist dismissed it as POTS. So even fitting the criterion, I wasn't diagnosed. She said at the time that it wasn't that simple - maybe she expected more symptoms.

I wonder what would have happened if we'd kept that HR test last week going beyond 30 minutes. We plotted HR against time and it was basically a straight line with no hint of a plateau - my HR was still going up when we stopped.

 

[Sushi]

Just found my letter to my GP from three years ago telling him my HR rose by more than 30bpm in ten minutes, which we later replicated in his surgery, before the first cardiologist dismissed it as POTS. So even fitting the criterion, I wasn't diagnosed. She said at the time that it wasn't that simple - maybe she expected more symptoms.

I wonder what would have happened if we'd kept that HR test last week going beyond 30 minutes. We plotted HR against time and it was basically a straight line with no hint of a plateau - my HR was still going up when we stopped.

Maybe,

it wasn't that simple

is code for, "I have no idea what is going on!"

Sushi

 

[Sasha]

Maybe, 'it wasn't that simple' is code for, "I have no idea what is going on!"
Sushi

Good point! That seems to be happening all over again.

 

[Sallysblooms]

I have heard over and over how hard it is to get help there. Just keep pushing.

 

[Sasha]

I have heard over and over how hard it is to get help there. Just keep pushing.

Not quite sure how or where to push. I think my GP is stumped and he doesn't think that HR pattern is normal either.

 

[Sallysblooms]

You can't find other doctors?

 

[Sushi]

Not quite sure how or where to push. I think my GP is stumped and he doesn't think that HR pattern is normal either.

Are you hoping for a diagnosis or treatment...or both? I ask because, even with a diagnosis, it may be hard to find a doc who knows what to do about it and whose recommendations you would be happy with.

Would you like to get a "proper" TTT? They are really tough on the body and also need to be designed with the autonomic nervous system in mind rather than just the heart.

Best,
Sushi

 

[Sasha]

Hi Sally - in the UK, we can't self-refer to specialists. We have to see our NHS GPs and ask for a referral. So my poor GP has now referred me to a cardiologist three years ago, who didn't find anything wrong, and at my request approached a POTS specialist who asked him to have me do this standing test, which the specialist says shows a normal pattern and so won't accept me for referral.

My GP doesn't know what to do next and I don't know who to ask him to refer me to next, if all that's going to happen is that I'm going to be told this pattern is normal. I don't know what kind of specialist would recognise it as a problem, let alone whether that specialist is likely to be trusted around ME/CFS.

 

[Sasha]

Are you hoping for a diagnosis or treatment...or both? I ask because, even with a diagnosis, it may be hard to find a doc who knows what to do about it and whose recommendations you would be happy with.

Would you like to get a "proper" TTT? They are really tough on the body and also need to be designed with the autonomic nervous system in mind rather than just the heart.

Best,
Sushi

Good questions about what I want! I want diagnosis so that I can then see what's on offer in terms of treatment. That said, I've got serious concerns about the OI drug treatments that I'm aware of (I've already exhausted the lifestyle measures such as salt and compression stockings) but I know some people have had good results and wanted at least the option of trying them. Even if I got a diagnosis, though, I could end up declining treatment if I wasn't satisfied about its safety and it not suppressing my immune system.

I'd like a proper TTT and that's what I was hoping to get through this referral which has been refused.

 

[SOC]

Sasha
Check out this article. http://phoenixrising.me/treating-cf...hostatic-intolerance-chronic-fatigue-syndrome

Near the end of the article is a list of different types of OI which you can tentatively self-diagnose if you have HR and BP data from Dr Bell's Simple Test for OI.

My data looks a little like yours -- my HR just keeps increasing, as do both measures of BP. My symptoms are similar to yours as well. I have low blood volume and feel a lot better if I fluid load (~2L) in the morning with electrolyte water. As I understand it, low blood volume is pretty common in ME/CFS, so it might be worth considering.

 

[Sasha]

Sasha
Check out this article. http://phoenixrising.me/treating-cf...hostatic-intolerance-chronic-fatigue-syndrome

Near the end of the article is a list of different types of OI which you can tentatively self-diagnose if you have HR and BP data from Dr Bell's Simple Test for OI.

My data looks a little like yours -- my HR just keeps increasing, as do both measures of BP. My symptoms are similar to yours as well. I have low blood volume and feel a lot better if I fluid load (~2L) in the morning with electrolyte water. As I understand it, low blood volume is pretty common in ME/CFS, so it might be worth considering.

Thanks, SOC - I take electrolytes first thing now though not a big load of water with it but it hasn't made much difference. When I tried salt and water loading before I just peed it straight back out again. I'd like to be measured for blood volume but again, I keep bouncing off these specialists who are the ones who do that testing.

 

[SOC]

Thanks, SOC - I take electrolytes first thing now though not a big load of water with it but it hasn't made much difference. When I tried salt and water loading before I just peed it straight back out again. I'd like to be measured for blood volume but again, I keep bouncing off these specialists who are the ones who do that testing.

Have you considered diabetes insipidus (not the sugar-related diabetes mellitus, an entirely different illness)? The fact that you peed your electrolyte water straight out suggests that diabetes insipidus might be something to consider.

It's really difficult to get any type of dysautonomia diagnosed, in my experience. GPs just don't want to hear about it. I imagine the situation is even worse in the UK.

 

[xchocoholic]

Hi,

For starters I have to lay down for an hour prior to doing the pmttt because it takes my body that long to
recover from hypoperfusion. If I try it sooner, my hr jumps right back up to my pots rate.

67 is my resting hr after an hour. Not much different from yours but if you tried laying down longer yours
might go lower. Mine goes from 73 to 67 in the last 15 minutes. Laying down gives my heart, brain, etc a
chance to recover.

Fwiw, I'm not sure why you want a doctor's opinion on this since your pmttt "appears" normal. I have abnormal pmttts but the fact that my doctors knew this never helped me. My instructions were still to salt load
and lay down flat for relief. My numbers never indicated meds would be helpful.

I've found that I need to allow 500 mg of salt to dissolve on my tongue sometimes to get a boost from it. Otherwise
I just eat salty foods.

Not having oi is a good thing imo. Tc ... X

Ps. Allergy meds are helping my oi. I had my first negative diy pmttt today. Kow. I'm waiting to see how it impacts my hypoperfusion.

 

[Sasha]

Have you considered diabetes insipidus (not the sugar-related diabetes mellitus, an entirely different illness)? The fact that you peed your electrolyte water straight out suggests that diabetes insipidus might be something to consider.

It's really difficult to get any type of dysautonomia diagnosed, in my experience. GPs just don't want to hear about it. I imagine the situation is even worse in the UK.

When I went to the first specialist I was concerned about diabetes insipidus because of that experience and she dismissed that as well (and told me to stop looking at the internet).

Once I stopped drinking larger amounts I stopped peeing larger amounts and I don't have thirst or highly diluted urine (I think) so maybe I'm not a good candidate for that either.