Couple More Pots Questions :)

[Paul1234]

I'm still in the diagnosis phase so apols for asking more questions.

- When you did a tilt table test, how did the heart rate difference compare to a lying down vs standing home test ? more, less or the same ?

- Do you associate bad days with high heart rate difference days ? (it seems to be correlated for me)

- How much variability do you get between different days ? My recent numbers each day are 34, 29, 25, 20, 20, 20, 22, 30, 21, 30, 25, 34.

- What other diagnostic tests do they do apart from tilt test ?

I would hate to go for a tilt test only to find I was on a good day

[statesof]

Hey Paul, I'll give you my personal experience, as far as the tilt table test I found that I had more of a heart rate increase than I would if I tried to replicate a "poor mans tilt table" at home by laying down and then standing up. I think part of this is because they lay you down for a while where the only time I'd lay down flat throughout a day would be getting out of bed in the morning, and because your hooked up to an ekg they can see the increase as it happens while when you try and do this at home you might miss the highest increase just taking a pulse manually.

- Do you associate bad days with high heart rate difference days? Not really for me, if I have a specific event throught a day where I'm having a lot of increases, lets say I sit down and stand up a lot of times in a row, or just more so on certain days it can take more of a toll, but then again I've had really bad days where I've spend most of the day in bed and still felt terrible.

- How much variability do you get between different days ? It depends, when I was tracking it for my doctors it could be anywhere from 25-35 typically

- What other diagnostic tests do they do apart from tilt test ? I think this depends on a case by case basis, but for me mri, eeg, blood tests, 24 hour urine analysis, 30 day holter monitor test, week long blood sugar tests, and treadmill test

[Paul1234]

thanks for that. I'm seeing a doc next week so I just want to be ready if they challenge my home recorded numbers really. And of course its good to understand whats what with how other people vary from day to day and what associations typically exist, etc !

I've actually been ignoring the maximum value and taking the upper heart rate when its stabilised. I have a heart rate monitor for sports so I can see the numbers continuously. Today its stabilising at around 35 points again and I'm very dizzed and brain fried ! oh well. Feeling relieved though to have finally found out what I "probably" have !

:)

[Sunshinegirl]

Initially for me I had similar variances as you do right now. Years later the variance can be a difference of 80 bpm depending on the day. The day I went in for my tilt test, I had been off all medications for a week and did not salt or water load. I pretended that this was not an issue for a few days. After the tests were done I slept for 22 hours straight.

My poor mans tilt test shows a jump of 68 bmp when on medication and salty water loaded.

For some people like me, I have seen progression of the condition over the years. This year my HR decided to jump to the 230's on occasion. Last year in was only in the 180's. 5 years ago it was only as high as 155. So...with this in mind I had other kinds of tests done. I found that I have MTHFR mutations, mast cell, Small nerve damage, likely ED's...on top of that a whole family history of things that are similar to what I am experiencing.

What I am saying is.. .keep pursing all the associate conditions and tests because I feel like for me ...I may have more permanent issues because I did not know better 5 years ago or 15 years ago.

I kept written records from nearly 10 years ago about HR differences. They were not significant enough for anyone to listen to me...but they show the pattern of the condition and lend me credibility now. Now a top Dr. has asked my permission to use aspects of my situation for medical teaching purposes.

For me, I would get a good machine and do it every day. Mark if it is a good day or not. Try avoiding salt or processed food for a day and then see what happens? But don't put yourself in danger doing so.

[Paul1234]

Well today was the most remarkable day ever. And I have no idea why.

When I woke up I felt rubbish, close to throwing up vertigo, tested the difference at 10am, 35 points.

Suddenly this evening I feel completely great.. went to test again, 16 points.

Not felt this well for two months.

This is weird !!!!

[Sunshinegirl]

Get used to "weird"

Your body puts out different chemicals at different times of the day. these can impact how you feel on a day by day basis but if things get worse, these don't really seem to make a huge difference.

Hope you stay well

[Katybug]

Hi Paul,

My 1st tilt was 72 supine to 145 for the whole time I was tilt up starting at the 3 minute mark. My 2nd ttt was 65 supine to 130-136 while tilted up. I also had to sudden severe drops in my bp during the 2nd but the drops in bp only lasted about 5 seconds each.

My bad days do not always correlate with my heart rate but I have other issues going on to so that all plays into it.

Some days I don't have dramatic changes in my HR or bp and others it's a wild ride. It can also vary during the course of one day. I'll wake up feeling ok and then will suddenly feel like someone took the wind out of my sails at some point in the afternoon. Or the morning will be terrible but then I'll suddenly feel perfectly fine in the evening and clean the whole house. There is very little rhyme or reason to it.

Good luck at the doctor.

[Paul1234]

Thanks again

Clearly my difference is a lot smaller than that but the 30 point boundary seems quite arbitrary really. If you have the symptoms and a crap life as a result then you need help whether you are above 30 or below.

I feel that I've had pots (or whatever I really do have) all my life, but just that I'm having a bad episode right now. So I'm not overly concerned about it getting worse, I just think its a blip and now I've found some resources that help me understand whats going on I can start to address it.

I think the advice about underlying issues is very good advice and very important. If your nervous system is going nuts its much better to try to find a reason for it than to just throw drugs at it. Well I like that idea anyway but I suspect in practice I'll just have to go with the flow

[BeforeTheMorning]

- I don't actually know how high my heart rate went during my prolonged Stand Test (I didn't have a TTT) because the monitor was behind me so I couldn't actually see. But normally when I get up in the morning my heart rate about doubles from 60-70 to 120-140, but it varies from day to day. And in my 10 min Active Stand Test it went from about 100 to about 130-150 I think. So it was slightly different to at home.

- Sometimes bad days are associated with higher heart rates, but I also have really bad days where my heartrate isn't that high at all.

- I'm not sure about variability on different days although I know that on some days I get about a 60 bpm rise in the morning and some day about a 30 bpm rise. I don't know why, it's just random!

- What diagnostic tests they will do completely depends on what hospital you're going to I think. The day that I had my Stand Test (which is like having a TTT but you lie flat and then stand instead of being tilted) I had to do different breathing patterns while they measured bp and hr and also Valsalva manoeuvre and a test where you grip something really hard for several minutes, I can't remember what it's called though. As well as those I've been sent for echos, ekgs, blood tests, prolonged glucose tolerance test, holter monitors, mri, active stand test, pulmonary function tests, cardiopulmonary exercise test, stress echo, etc. But I guess the amount of tests depends on what your symptoms are and what your doctor thinks.

I know what you mean about being afraid you'll go for your TTT and find your having a good day and it won't show your problems. I know some people have had TTT's where they haven't met the diagnostic criteria for POTS, but then they've gone and had another TTT a different time and got their diagnosis. So even if you happen to be having a good day, that doesn't necessarily mean that you won't get more tests and a diagnosis.

Best Wishes with getting this all sorted out.

Lyla

[Paul1234]

I was wondering, are the following typically or generally found with pots?

- top of head headache, sometimes getting worse with exercise

- headache just above the back of the neck, and in that whole area out to the ears, sometimes getting better after exercise

thanks