Can you have POTS without the heart rate going up a lot?

[Insomniac]

I thought that in order to have POTS, you purse rate needs to go up a specific required number of beats when you stand up.

Can you still have have POTS if that does not happen?

 

[xks201]

There are so many terms revolving around orthostatic intolerance that I gave up a long time ago trying to remember all of their precise definitions. Instead I focused on causes of autonomic neuropathy (exception being noradrenaline transporter deficiency) or electrolyte imbalance which ultimately are behind just about every type of orthostatic intolerance.

I think by compartmentalizing all of these conditions we can sometimes lead ourselves out of the possibility that any of the above could be causing each individual type of orthostatic intolerance.

 

[Sushi]

I thought that in order to have POTS, you purse rate needs to go up a specific required number of beats when you stand up.

Can you still have have POTS if that does not happen?

POTS is the specific type of dysautonomia that does manifest in a high HR -- particularly when standing or being active. But as @xks201 said, there are lots of types of dysautonomia and OI. The only reason to differentiate is that they are often treated somewhat differently and may require different types of lifestyle modification.

Sushi

 

[xchocoholic]

Mine goes from resting hr of 65 to 110 in 10 minutes max and then I really need to lay down. I have a petite mal and sob. Typically, kow, standing is possible but I feel like crap.

The last time I researched this, Pots is dx by a 30 pt increase in hr via the ttt. Orthostatic hypotension is dx via a 30 pt drop in bp after standing for 3 minutes. I'm not up on the other forms of OI.
I have oh and pots.

Tc .. x

 

[Insomniac]

I saw Prof Rosner, I only mention his name b/c he wrote a few papers here:
http://www.ncbi.nlm.nih.gov/pubmed?...med_pubmed&IdsFromResult=12589011&retmode=ref

He told me that I should get a tilt test. He said that you can have POTS without the BP raising 30 points on standing.

I just wanted to know if that was right.
He said only "proper testing" i. e the tilt table test can really find all POTS cases. ...Now I see that he meant OH cases.
I had no one else to ask so just thought I'ed get it confirmed here. Thanks for answering everyone.

(p.s He was useless on treatment - midodrine and exercise, so the papers did not help in that.)

 

[xks201]

That is probably why I am a little bitter to things like the tilt test. I've never actually seen a tilt test lead to any sort of accurate treatment. The only treatment for orthostatic intolerance I've seen even work is fludrocortisone, thyroid hormone, and or possibly desmopressin - and none of those treatments have a diagnostic that would say oh you need a tilt table test.

 

[Sushi]

I had a TTT with an autonomic specialist. It revealed specific problems with the ANS and pointed to certain medications to deal with them. I think it is unusual though to have such a good TTT. He included a lot of sub-tests that were diagnostic for different problems in the ANS.

From what I hear, most TTTs are just a pass/fail situation, so not very helpful and very hard on the body.

Sushi

 

[Legendrew]

I think that dysautonomia (of which pots falls under) can present without heart rate abnormalities but it's such a misunderstood and newly emerging area that a diagnosis is unlikely to lead to treatment.

 

[SOC]

That is probably why I am a little bitter to things like the tilt test. I've never actually seen a tilt test lead to any sort of accurate treatment. The only treatment for orthostatic intolerance I've seen even work is fludrocortisone, thyroid hormone, and or possibly desmopressin - and none of those treatments have a diagnostic that would say oh you need a tilt table test.

My daughter had a TTT, which showed clear abnormalities. She got treatment -- fludrocortisone and midodrine -- which are definitely helping. As for the need for the TTT, the cardio would not prescribe those meds without a failed TTT.

I concede that all too often the results of a TTT are misinterpreted and/or doctors are too conservative in treatment. However, that's no reason give up on testing and treatment entirely. If you give up, you never make progress.

 

[SOC]

I think that dysautonomia (of which pots falls under) can present without heart rate abnormalities but it's such a misunderstood and newly emerging area that a diagnosis is unlikely to lead to treatment.

That may be true in the UK, but I'm not seeing it here. I have a daughter and a couple of students diagnosed with dysautonomia and receiving treatment.

 

[xks201]

I had a TTT with an autonomic specialist. It revealed specific problems with the ANS and pointed to certain medications to deal with them. I think it is unusual though to have such a good TTT. He included a lot of sub-tests that were diagnostic for different problems in the ANS.

From what I hear, most TTTs are just a pass/fail situation, so not very helpful and very hard on the body.

Sushi

Care to elaborate on the medications recommended?

 

[Sushi]

Care to elaborate on the medications recommended?

There a many medications that can be tried but they need to be tied to the source of the problems or they could make things worse. Like, for me, a norepinephrine reuptake inhibitor was magic (strattera) but it could make others worse.

Generally meds that are vasoconstrictors are helpful to many but it would be sort of Russian roulette to try to pinpoint what might work for others without testing. It is definitely not a one-size fits all, sadly.

Sushi

 

[alex3619]

Generally meds that are vasoconstrictors are helpful to many but it would be sort of Russian roulette to try to pinpoint what might work for others without testing. It is definitely not a one-size fits all, sadly.Sushi

The Lemon Rule indeed.

Its sad the state if knowledge is such that for most of us, most of the time, the only way to find out if a treatment is a lemon is to suck it and see. It will be good when that changes.

 

[xks201]

There a many medications that can be tried but they need to be tied to the source of the problems or they could make things worse. Like, for me, a norepinephrine reuptake inhibitor was magic (strattera) but it could make others worse.

Generally meds that are vasoconstrictors are helpful to many but it would be sort of Russian roulette to try to pinpoint what might work for others without testing. It is definitely not a one-size fits all, sadly.

Sushi

Did you ever try wellbutrin and if so did it work like straterra for your OI?

 

[Sushi]

Did you ever try wellbutrin and if so did it work like straterra for your OI?

I tried a low dose of Wellbutrin (my autonomic doc preferred low dosing of several meds taken together). I could barely detect any effect from Wellbutrin.

Sushi

 

[ukxmrv]

I think that dysautonomia (of which pots falls under) can present without heart rate abnormalities but it's such a misunderstood and newly emerging area that a diagnosis is unlikely to lead to treatment.

Maybe they would get treatment under the team of Prof Mathias at St Marys in London?

There's a lot in this presentation on testing and treatment.

http://www.stars.org.uk/files/file/...nt - STARS Patients - 1030 - Prof Mathias.pdf

 

[Legendrew]

One thing that is interesting is that POTS and dysautonomia in general, unlike ME/CFS, is well documented to respond well to controlled exercise in the long run and also several types of POTS has a tendency to improve over time, I've certainly noticed that as my health has slowly improved so too has my activity level which has then further helped my general health; that being said I'm currently experiencing some definite dysautonomia type symptoms (headaches, adrenaline rushes, stomach upset and the like) likely as a result of the increased stressors in the form of hayfever and the warmer weather.

 

[kevinj]

Holy

Mine goes from resting hr of 65 to 110 in 10 minutes max and then I really need to lay down. I have a petite mal and sob. Typically, kow, standing is possible but I feel like crap.

The last time I researched this, Pots is dx by a 30 pt increase in hr via the ttt. Orthostatic hypotension is dx via a 30 pt drop in bp after standing for 3 minutes. I'm not up on the other forms of OI.
I have oh and pots.

Tc .. x

Holy crap. I just measured mine and it is 68 when I lie down and when I Stand-up goes up to 110. ! I'm gonna get this test.

 

[xchocoholic]

Holy

Holy crap. I just measured mine and it is 68 when I lie down and when I Stand-up goes up to 110. ! I'm gonna get this test.

Hi @kevinj . How long after STANDING IN PLACE did you wait before taking your hr ? The poor man's tilt table tests specifies taking bp and heart rates at 3 minutes and then again at 10.

Also, is 68 your actual resting point ? My hr is/was around 75 for the first 45 minutes after becoming supine but drops to the mid 60's after that. This has all changed for me recently tho as I'm now getting skipped beats and bradychardia.

Also, these readings can change so it's best to look for a pattern. I could barely stand up for 10 minutes when I tried the pmttt at one point. Other times I've been ok up to 13 minutes.

One big clue, for me anyways, was how much better I feel after being supine for an hour. And how crappy I feel after being upright. Movement, esp walking, seems to help because it forces blood flow.

Good luck. X

 

[kevinj]

Hi @kevinj . How long after STANDING IN PLACE did you wait before taking your hr ? The poor man's tilt table tests specifies taking bp and heart rates at 3 minutes and then again at 10.

Also, is 68 your actual resting point ? My hr is/was around 75 for the first 45 minutes after becoming supine but drops to the mid 60's after that. This has all changed for me recently tho as I'm now getting skipped beats and bradychardia.

Also, these readings can change so it's best to look for a pattern. I could barely stand up for 10 minutes when I tried the pmttt at one point. Other times I've been ok up to 13 minutes.

One big clue, for me anyways, was how much better I feel after being supine for an hour. And how crappy I feel after being upright. Movement, esp walking, seems to help because it forces blood flow.

Good luck. X

I will have to lie down and measure it and time it then. This time I just did it once. I will write it all down. Standing up for 10 minutes now don't think I would like that either. I will see how I go with a stopwatch. Yeah most the time I have to lie down and I feel like shit when I stand up for too long too