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POTS symptoms / diagnosis

W

whimbrel

Messages
1
Hi all,

Just wondering if anyone has info about POTS diagnosis (or similar conditions)?

I saw a cardiologist about a year ago and had an ECG, 24 hour monitor and stress test - all were normal. I have had extreme dizziness / imbalance / feeling like I will faint when walking / standing / upright, this varies in severity from slightly annoying to almost impossible to deal with. Also had extremely bad headaches and tinnitus.

When I measured my blood pressure and pulse lying down, then at 2, 5 and 10 minutes, my blood pressure only changed slightly but pulse went from
75 (lying down)
115 (on standing)
110 (2 minutes)
100 (5 minutes)
100 (10 minutes)

Am I correct in thinking that for a 'formal' diagnosis of POTS, the pulse rate has to stay more than 30 above resting rate for at least 10 minutes? Or does it just need to increase by 30 at some point within the 10 minutes?

Secondly, does anyone know how to encourage a GP (in the UK) to send me for a tilt table test? I have had so many tests and this is a symptom that has probably the biggest effect on my daily life, and i don't know how to resolve it!

Thanks for any info / suggestions.
 
halcyon

halcyon

Senior Member
Messages
2,482
whimbrel said:
Or does it just need to increase by 30 at some point within the 10 minutes?
Click to expand...
This I believe.

The problem with the 'formal' diagnostic criteria is that it excludes one from a diagnosis of POTS if you've had a lot of bed rest (as most of us with this disease have.) In practice I'm not sure how often this exclusion is actually used though.
 
adreno

adreno

PR activist
Messages
4,841
My pulse rate goes up and down depending on symptom severity. There are probably days when I would pass a formal POTS diagnosis, and days when I wouldn't.
 
bspg

bspg

Plant Queen
Messages
547
Location
USA
adreno said:
My pulse rate goes up and down depending on symptom severity. There are probably days when I would pass a formal POTS diagnosis, and days when I wouldn't.
Click to expand...

I am having this exact problem right now and I'm not sure what to do. I seem to go through relapse and remission of strong POTS symptoms. My heart rate is fine for long periods of time and then BAM, crazy racing & jumping heart for days out of nowhere.

I was evaluated by a cardiologist for this but when I asked for a tilt table test, he said "I can make anyone pass out on a tilt table, so I really don't think they're that useful in diagnosis." He had me wear a heart monitor for 14 days but of course, by the time I'd had the appt and gotten the monitor, I wasn't having symptoms anymore. Ugh.

Today the POTS-type symptoms are back so I did a little test. I don't have a blood pressure monitor but I tried doing the NASA lean test today, only checking my pulse. I had already been laying down for quite awhile (30 mins) so I took my pulse. It was 80 bpm. I got up, leaned against the wall with only my shoulder blades touching, and started timing.

I immediately felt like someone was sitting on my chest and I couldn't get enough air. I got really hot, my knees felt like they were going to buckle and I became nauseated all within the first 30 seconds. I only lasted 3 minutes total (because I was feeling like I was going to pass out) but by minutes 2 and 3 my heart rate was 130 bpm.

I know that a 50 bpm jump like this could mean POTS but I'm not sure what to do about it since it's intermittent and the cardio didn't give me a TTT.

Has anyone else been evaluated for intermittent POTS? Were you able to get a diagnosis and treatment?
 
Last edited:
Seven7

Seven7

Seven
Messages
3,444
Location
USA
bspg said:
Has anyone else been evaluated for intermittent POTS? Were you able to get a diagnosis and treatment?
Click to expand...
Yes our POTs is a bit bizarre in CFS. It took for me a trip to Cleveland clinic + 3 days of testing to get the diagnostic, I was pushed autonomically to the point where last day I was shaking and trembling uncontrollably.
the 30+ BPM is POTs period. You might want to call around for an ELectrophisiologyst that treats POTs, just move on from your cardio. I am No doctor , just my humble opinion.
 
halcyon

halcyon

Senior Member
Messages
2,482
bspg said:
I was evaluated by a cardiologist for this but when I asked for a tilt table test, he said "I can make anyone pass out on a tilt table, so I really don't think they're that useful in diagnosis."
Click to expand...
That's not really the point of the test. You'll probably want to see someone that specializes in autonomic disorders and have the full battery of autonomic tests not just the tilt table. Somewhere like Mayo, Stanford, etc.
 
V

Valentijn

Senior Member
Messages
15,786
bspg said:
I was evaluated by a cardiologist for this but when I asked for a tilt table test, he said "I can make anyone pass out on a tilt table, so I really don't think they're that useful in diagnosis."
Click to expand...
That doctor is either lying or has no idea what he's talking about.
 
bspg

bspg

Plant Queen
Messages
547
Location
USA
halcyon said:
That's not really the point of the test. You'll probably want to see someone that specializes in autonomic disorders and have the full battery of autonomic tests not just the tilt table. Somewhere like Mayo, Stanford, etc.
Click to expand...

I would love to do that but unfortunately I cannot afford it.
 
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