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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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POTS Associated with Significant Symptoms & Impairment -- BMJ article & pop press response

ukxmrv

ukxmrv

Senior Member
Messages
4,413
Location
London
http://forums.phoenixrising.me/inde...t-table-test-pmttt-for-oi-pots-and-nmh.12291/

It was a poor mans TTT that finally got someone to take it seriously and order the full TTT for me

If you can get them to take your BP and HR resting. Ideally lying flat on an examining table, then stand you up and take the same every 3 minutes for 15-30 minutes (if you can last that long). The nurse should be able to do it at your GP's clinic.
 
G

golden

Senior Member
Messages
1,831
ukxmrv said:
http://forums.phoenixrising.me/inde...t-table-test-pmttt-for-oi-pots-and-nmh.12291/

It was a poor mans TTT that finally got someone to take it seriously and order the full TTT for me

If you can get them to take your BP and HR resting. Ideally lying flat on an examining table, then stand you up and take the same every 3 minutes for 15-30 minutes (if you can last that long). The nurse should be able to do it at your GP's clinic.
Click to expand...


I am glad you finally got it diagnosed and acknowledged.

Thankyou for the swift reply, much appreciated. I am trying the Pharmacist who I have been told will do it - :)
 
ahimsa

ahimsa

ahimsa_pdx on twitter
Messages
1,921
Gingergrrl43 said:
Wow, I can't believe it took four years to get referred to a cardiologist!
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Sadly, I think this situation (waiting years without any answers) is common. I first got sick in Jan 1990. I got referred to a cardiologist for my first TTT (tilt table test) in 1995.

My primary problem at that time was NMH (Neurally Mediated Hypotension, sudden drop in blood pressure) not POTS. But now, after 20+ years, I seem to have both POTS and NMH.

On my first tilt table test there was some increase in my heart rate but not enough to be classified as POTS. However my sudden and severe drop in BP was obvious. I suddenly passed out at about the 20 minute mark. For what it's worth, I've never fainted in "real life." So just because the patient does not normally faint does not mean it won't happen on the TTT.

As Sushi and others have pointed out, a good doctor can read a TTT and get enough information before the patient faints. No need to put the patient through all that stress of fainting.

Thank goodness I did not have one of those borderline TTTs where only a specialist in autonomic issues could figure it out. My cardiologist is fine but this is not his area of expertise.

Okay, enough of this. I think this went a little off topic -- sorry!
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
Allyson said:
yes anyone who faints should be checked for POTS _ but 90 percent or more of doctors have never heard of POTS
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This is so infuriating to me. Is POTS not taught in American medical schools? I have never fainted in my life but there are times when I stand up and my HR can jump almost 100 points and I have some version of POTS even if not the most typical presentation. It seems like this should be a standard thing that is taught (even if it is completely separate from ME/CFS.)
 
A

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Gingergrrl43 said:
This is so infuriating to me. Is POTS not taught in American medical schools? I have never fainted in my life but there are times when I stand up and my HR can jump almost 100 points and I have some version of POTS even if not the most typical presentation. It seems like this should be a standard thing that is taught (even if it is completely separate from ME/CFS.)
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yes agree - but they have not known about that long and it takes time for teaching to catch on

that is why I advocate so much to patients Gigergirrl- we need to spread the word ourselves
and now with the internet we have a golden opportunity to do so
there re about 20 000 people on POTS groups on facebook already - many with pseudonyms

My posts are being moderated so we may not get to have this discussion in real me alas as I would love to chat!
Ally
 
A

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Gingergrrl43 said:
This is so infuriating to me. Is POTS not taught in American medical schools? I have never fainted in my life but there are times when I stand up and my HR can jump almost 100 points and I have some version of POTS even if not the most typical presentation. It seems like this should be a standard thing that is taught (even if it is completely separate from ME/CFS.)
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and NO POTSs still not taught in med schools - and even many cardiologists do not know the first thing a bout it

Ally
 
alex3619

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
ahimsa said:
As Sushi and others have pointed out, a good doctor can read a TTT and get enough information before the patient faints. No need to put the patient through all that stress of fainting.
Click to expand...

In my case it was a more extreme reaction. I also went from nothing wrong to unconscious and needing resuscitation in under ten seconds. It can be fast.
 
A

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
alex3619 said:
In my case it was a more extreme reaction. I also went from nothing wrong to unconscious and needing resuscitation in under ten seconds. It can be fast.
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wow that is terrible Alex - did thy give yu IV fluids afterwards to revive you?
does your pulse rise by 30 bpm when you stand up anyway?

Ally
 
alex3619

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Allyson said:
wow that is terrible Alex - did thy give yu IV fluids afterwards to revive you?
does your pulse rise by 30 bpm when you stand up anyway?

Ally
Click to expand...

I don't have POTS. If anything I get POBS (which I made up, but it fits): Postural Orthostatic Bradycardia Syndrome. That is why its so fast. As soon as my bp falls, so does my heart rate, and this is a positive feedback loop.

I do not know if POTS is that important, depending on cause. OI is the more important thing, whether tachycardic, bradycardic, or normocardic (but I am not sure normocardic is a word). Tachycardia is the reaction to the underlying problem, and probably separate from what is driving the OI.
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
alex3619 said:
I don't have POTS. If anything I get POBS (which I made up, but it fits): Postural Orthostatic Bradycardia Syndrome. That is why its so fast. As soon as my bp falls, so does my heart rate, and this is a positive feedback loop.

I do not know if POTS is that important, depending on cause. OI is the more important thing, whether tachycardic, bradycardic, or normocardic (but I am not sure normocardic is a word). Tachycardia is the reaction to the underlying problem, and probably separate from what is driving the OI.
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@alex3619 I love all your new acronyms POBS and normocardic LOL. In my case it is always tachycardia as if my HR is trying to catch up with the demands of my body when I stand up but it can't quite do it.
 
A

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
alex3619 said:
I don't have POTS. If anything I get POBS (which I made up, but it fits): Postural Orthostatic Bradycardia Syndrome. That is why its so fast. As soon as my bp falls, so does my heart rate, and this is a positive feedback loop.

I do not know if POTS is that important, depending on cause. OI is the more important thing, whether tachycardic, bradycardic, or normocardic (but I am not sure normocardic is a word). Tachycardia is the reaction to the underlying problem, and probably separate from what is driving the OI.
Click to expand...

Yes my doc says the OI is the problem too Alex - and that POTS is a by -product of the OI

I guess POTS is easier to say than OI and so gets more airtime ?

CHeers,

Ally
 
ahimsa

ahimsa

ahimsa_pdx on twitter
Messages
1,921
Allyson said:
Yes my doc says the OI is the problem too Alex - and that POTS is a by -product of the OI

I guess POTS is easier to say than OI and so gets more airtime?
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Yes, there are different names/categories depending on which doctor you ask. The phrase that makes sense to me is Chronic Orthostatic Intolerance as described in a Medscape article by Dr. Julian Stewart:

http://emedicine.medscape.com/article/902155-overview#aw2aab6b3

Here's an extract from that article:
In chronic orthostatic intolerance, patients are ill on a day-to-day basis. Chronic orthostatic intolerance may be confused with syncope because chronic illness is sometimes punctuated by acute syncopal episodes. However, this is unusual during real life (albeit common during artificial testing environments), and the author's work suggests no increase in the incidence of syncope above that in the general population. The physician should rely on the patient's history to determine whether chronic illness is present. Thus, chronic orthostatic intolerance is defined by a history of symptoms of orthostatic intolerance present on a day-to-day basis. Defining symptoms of chronic orthostatic intolerance include dizziness in all patients, with high incidence of the following conditions:
  • Altered vision (blurred, "white outs", "black outs")
  • Fatigue
  • Exercise intolerance (frequently post-exercise malaise)
  • Nausea
  • Neurocognitive deficits
  • Sleep problems
  • Heat [ Note: I think this should be "Heat intolerance" ]
  • Palpitations
A large proportion of patients also experience the following symptoms:
  • Headache
  • Tremulousness
  • Difficulty breathing or swallowing
  • Sweating
  • Pallor
  • Other vasomotor symptoms
These symptoms are divisible into symptoms of sympathetic activation and symptoms of reduced cerebral blood flow.
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Gingergrrl

Gingergrrl

Senior Member
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