Couple Of Pots Questions

[Paul1234]

I would like to tap into your knowledge and experience if I may.

During BP tests last week I recorded the following standing HRs after sitting. I did this every couple hours over 3 days

Sitting Standing
57 80
62 84
99 113
76 101
67 89
69 86
65 85
74 84
66 88
59 80
65 90
63 92
75 95

Mostly the standing figures are averages of two or three readings taken over 5 to 10 minutes.

Obviously sitting does not equal lying down so the gaps listed would be bigger.

My rest HR when I've been lying in bed for 30 mins is normally about 45-55 (to get a 45 I have to lie there like a jellyfish on the beach ) Sometimes its higher, up to 60..

So I'm wondering if people with this kind of gap, 25-40 points, at the lower end of the diagnosis borderline, would they be only mild sufferers ? or are there people with a 30 point difference who suffer badly from pots ?

And how do doctors deal with it if someone has symptoms but their difference only measures up at 28 points or so ? Sorry mate, no pots, go home, we can't help you ??!!

Finally I'd like to ask how long one has to have the 30 point gap before its considered chronic ? I am kind of hoping that despite having had POTS symptoms all my life there have been times when I've not had much problem at all, and therefore I should be able to get back to that with lifestyle adjustments.

thanks

Paul

[Katybug]

Mt pots neuro told me at the very beginning that there was a study done that showed no direct correlation between the severity of the numbers and the severity of the symptoms. I have days that I don't have a 30 bpm change when I stand but I am very symptomatic.

[Katybug]

Oh, and I don't know about your second question, but, one of the diagnostic criteria for POTS is that the issue has been going on for 6 or more months.

[Paul1234]

Thanks Katie :thumbup:

6 months before I can get some help is a depressing thought ! Still, they can't stop me helping myself in the meantime. I can see why tho.

[Sunshinegirl]

Paul, Im sorry you are feeling so terrible.

Unfortunately I could not get anyone to help me until I became "clinical" and by that I mean a HR over 100 just when sitting and skyrocketed higher upon standing. You can help yourself. Much of what I had been doing by the time things got bad were what I was told to do when someone finally believed me. What can be just as telling is your BP. What is that like in different positions?

Before you start eating salt like your a horse on a lick, you might want to get other things checked out first to make sure that you are not going to make things worse for yourself....Like make sure your cardiovascular system is in great shape to start.

[Paul1234]

Thanks Sunshinegirl,

My BP is about 120/70 lying down, when sitting its more like 130/75, when standing I seem to get two systolics, a weak pulse might come in about 130 and a stronger pulse around 100. My BP meter can pick up either of those so I try to record both as I feel it thumping during the test. Diastolic figure is 75 to 90 so thats an indication that I don't actually get lowered BP as you'd see in some POTS patients. Apparently thats quite common.

Re salt I'm just trying to make sure I get enough. I don't want to be eating more than that. I did try an experiment some years ago (I didn;t know about pots it was just intuition really) where I tried high salt and I just felt rotten.

I just did a half decent POTS test. It was quite funny really, put on my cycling HR monitor and started the garmin to record it. Went to bed read a book for 10 mins, and then thought hmm my HR is still quite high, so I relaxed a bit, ... and fell asleep !! s'posed to be working !!

Then I woke up 45 mins later and stood up for 7 minutes.

Sleeping HR was 61 min, 70 max, 65 average, (thats high for me, but I did do a bike ride at lunch time)

Standing HR was 85 min, 107 max, average 99.

Min difference = 24, max difference = 37, av difference = 34

I think I'll get a bigger gap between the numbers on a day when I didn't do a bike ride, so I'll repeat the test in a couple of days time

[Nymph]

Hi Paul,

I have a similar gap - right around 30 bpm difference lying to standing, although my hr runs a bit higher, bp lower. My symptoms are also not directly related to my numbers at any given time, however I consider my POTS on the mild side over all.

You mentioned that you have had symptoms for a long time, but sometimes are symptom-free. I have the same situation. What are your symptoms?

Best,

Nicole

[Paul1234]

Thanks Nicole,

Symptoms are: undue tiredness, fatigue, random episodic muscle pain, dizziness, falling asleep, tinnitus, light headedness, episodes of poor concentration and highly variable performance in work and study, presyncope, all those ever since age 14, but also with intermittent periods of good performance in work and study. 6 years ago lots of vertigo and dx'd Menieres. Also more recently I had a strange brain attack and following that vertigo, strange headaches, occasional fever, scalp numbness, fuzzy back of head...

(edit: also heart thumping - how could I forget the one thing thats always there!)

Apart from that .. nothing

[Paul1234]

BTW its great to hear about the gap and symptoms people have and how it all varies day to day and over different time periods. Its all helping to build a mental picture of the whole thing

[Nymph]

Thanks for clarifying. Have you already had an echo and ekg to rule out heart problems? If so, and there's no answer, looking for a doc who's familiar with POTS may be helpful.

[Paul1234]

thanks again...

ECG was done a couple of years ago, all ok.

My short term roadmap for now is to understand more about POTS and self treat. If I can manage it and lead a normal life without medication thats better than with medication.

I've asked for access to my medical notes so I can scan through for old bloods and any neurological popups and doctors interpretations of that. A few years ago they recommended amitriptyline without a diagnosis, so I can uncover what the thinking was behind that. And I might just spot other things in there, so worth a look.

Medium term I'll get a diagnosis from a neurologist as I think there probably is underlying cause (mainly I think that because not all my symptoms line up with pots, pots has symptoms I don't get, and pots seems to particularly affect (not exclusively) people with small heart stroke volumes and thats unlikely to be me since I'm reasonably ok at endurance bike racing). So I kindof feel like I want to learn more about related conditions and gather some decent data before that meeting really.