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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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I'd appreciate if all members who have CFS/ME participate in this POLL on POTS&NMH

Have you been diagnosed with POTS

  • Yes

    Votes: 37 39.4%
  • No but I suspect it

    Votes: 20 21.3%
  • I know for sure I do not have POTS

    Votes: 20 21.3%
  • I do not really understand POTS enough to suspect it

    Votes: 7 7.4%
  • I know what POTS is but it is on the back burner because I already have too much to deal with

    Votes: 3 3.2%
  • I have Neurally Mediated Ortostatic intolerence

    Votes: 15 16.0%

  • Total voters
    94

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
Tuesday 11/4/14 at 2:57 PM
I am very interested to learn how many of you have POTS with CFS/ME.
The claim is that 25% to 50% of CFS/ME sufferers have POTS.
This POLL is also to get an idea on actual awareness as well

Tuesday 11/4/14 at 3:34 PM

POTS is pretty simple to diagnose in my opinion.

In fact, I diagnosed myself(as I did with all of my official diagnoses) before I was officially diagnosed with POTS by a cardiologist.
However,as always,(in at least all of my experiences with doctors) when you "know too much" about your condition,it seems to rub doctors the wrong way
and they will quickly dismiss you out of narcissistic behavior.
In simpler words, they will not treat you and will ignore all facts you place in front of them.

Now,
Back to the topic.
All you need is a blood pressure/pulse home model machine. Omron is the most accurate, IMO.


1. lay in the supine position on your bed for around 10 minutes relaxing then take your blood pressure/pulse
and record it.keep the sleeve/cuff attached.

2.immediately stand up right after step 1 and take your blood pressure/pulse as many times as the machine will keep up during the 10 minute required time for the diagnosis of POTS AKA "poor man's tilt table test.
*Note if you are a fainter have someone there who can catch you from falling if you pass out*
If your heart rate/pulse increases 30 beats per minute over your recorded supine heart rate/pulse or goes over 120 beats per minute
You have POTS.It is simple as that..

What does the blood pressure reading mean during this test?
The only role your Blood pressure plays in this test is to determine what type of POTS

1.If your blood pressure continues to drop below 90/60 during the test you have the Neurally Mediated type of POTS or hypotension
AKA low blood pressure.
*This is the form that you will pass out on if you pass out*

2.If your blood pressure continues to rise above 140/90 during the test you have the Hyperadrenergic type of POTS
AKA high blood pressure.

3. if your blood pressure does not change enough to be considered high or low by world standards during the test,which are below 90/60 for low blood pressure or over 140/90 for high blood pressure.
This means you have the unaffected blood pressure type of POTS.

4. if you have the 1,2 and 3 type of POTS and Neurally Mediated Hypotension as I do,you are pretty much screwed as to getting pharmaceutical help! This is the rarest form of POTS and OI and by my calculations, since I'm a man, we make up only 15%
of all known types of cases combined ..As I have this rarest type of POTS, there are only around 15k to 25k cases including myself in the US..Saline IV is the only way to treat this type
I have not yet to find any information on this type to even give it proper name!!

I am by no means a doctor.
I'm just a concerned man who had to do my own research in order to find the proper help or in simpler words,
I am basically my own primary care physician.

Friday 11/7/14 at 3:27 PM
Since this poll is going exactly the way I suspected,this tells me a great deal.

POTS and neurally mediated hypotension most likely plays a larger role in CFS/ME than what is being and originally suggested/suspected.
What does POTS and neurally mediated hypotension have in common?
Low blood volume/flow problems.

1.since 46% of the participating CFS/ME members have POTS
2.And 13% of the participating CFS/ME members have Neurally Mediated Hypotension
3.18% of the participating CFS/ME members suspect POTS which is pretty much a shoe in since the majority CFS/ME sufferers have to diagnose themselves before becoming official.(as I was one)
4. And finally there are 10% of the remaining participating CFS/ME members who have not educated themselves enough on the subject yet(as I was one), who more likely than not have POTS or Neurally Mediated Hypotension..

It is possible that 80% of CFS/ME sufferers could have POTS,Neurally Mediated Hypotension
or at least Low blood volume/flow problems of other orthostatic control issues.

This needs to be heavily investigated..

Friday 11/7/14 at 3:40 PM
So after I have exhausted all of these vascular tests(below) I will be a great deal more educated on this issue
and hopefully will be able to help all of you all out........


I am basically "my own PCP" so I get just about every lab test/MRI/CT scan/sonar/xray ETC that I suspect,
eventually, out of sheer persistence..
Right now I am working on getting every vascular screening test known to man TO GET TO THE BOTTOM OF EVERY BLOOD FLOW/VOLUME PROBLEMS I HAVE ASSOCIATED WITH POTS.
Such as:
Vascular Disease Screening and Prevention - New York ...
Carotid Duplex:
This ultrasound procedure can detect carotid artery disease – blood clots, plaque build up, and other blood flow problems in the carotid arteries – early, before it causes any symptoms. When the disease is detected early vascular specialists can perform procedures that are effective in preventing stroke.

Aorta Ultrasound Scan: An aorta ultrasound exam can diagnose aneurysms that develop in the abdominal aorta, and is used to follow patients who have undergone procedures including aortic endograft and aortic open repair aneurysm.

Arterial Duplex Imaging: Using this high-frequency ultrasound test vascular specialists can visualize the arteries in the legs and the velocity and direction of blood flow in those arteries.

Treadmill Exercise Testing for Claudication: Doctors use treadmill testing to detect peripheral artery disease in patients who have pain in their lower limbs (claudication). During a treadmill test they can evaluate how exercise affects ankle-level blood pressure and analyze the relationship between claudication and vascular function.

Digital Photoplethysmography (PPG) with Thermal Measurement: Digital photoplethysmography (PPG) is an imaging test used to detect changes in blood flow at the microvascular level in the fingers and toes in people with Raynauds disease.

Ankle Brachial Index (ABI) with Pulse Volume Recordings (PVR): Doctors use these tests to measure blood flow and detect arterial blockages in the arms and legs. Together the tests help determine the presence, severity, and location of peripheral arterial occlusive disease.

Renal Artery Duplex Scanning: This imaging test evaluates blood-flow velocity and patterns in the aorta and renal arteries to help diagnose and locate blockages in the vessels and damage to the kidneys from chronically poor blood flow.

Dialysis Access Evaluation: This ultrasound exam helps vascular specialists map veins and determine which can be used for hemodialysis access.

Thoracic Outlet Obstruction Evaluation: Doctors use a combination of imaging studies including chest x rays, CT scans (in some cases with 3-dimensional reconstruction to show compression of the structures at the thoracic outlet), angiography and venography, MRI, ultrasonography, electromyography (EMG), and nerve conduction studies to diagnose thoracic outlets obstructions and determine the most effective treatment.

Vein Mapping for Arterial Bypass: Before performing surgery to perform a bypass, surgeons use preoperative ultrasound imaging to determine which vein segments might be used for bypass grafts.

Venous Ultrasound Scan of the Upper and Lower Extremities: This ultrasound exam shows blood flowing through blood vessels and can be used to detect deep vein thrombosis (DVT) and superficial vein thrombosis (SVT).

Diagnostic Tools and Technology
Diagnostic Angiography:
Angiography is a type of imaging test that allows doctors to view blood vessels throughout the body and diagnose blockages, enlargements, clots, and malformations. An angiogram to study the arteries is called an arteriogram; one to study the veins is called a venogram.

CT Scans: A computed tomography (CT or CAT) scan is a noninvasive imaging test in which computers combine special x-ray images to produce cross-sectional images of internal organs, bone, soft tissue and blood vessels, allowing radiologists to diagnose vascular problems.

TeraRecon/Aquarius: This new technology allows vascular specialists who are planning an endovascular stent graft repair of an aortic aneurysm to create and analyze a three-dimensional reconstruction of a computed tomography angiogram. These images help ensure proper sizing and placement of the graft.

MRI: Magnetic resonance imaging (MRI) uses a powerful magnetic field, radio frequency pulses, and a computer to produce detailed pictures of organs, soft tissues, bone and virtually all other internal body structures. Detailed MR images allow physicians to better evaluate various parts of the body and certain diseases that may not be assessed adequately with other imaging methods such as x-ray, ultrasound or computed tomography (also called CT or CAT scanning).

Zeego: Specialists at NewYork-Presbyterian now use a new vascular imaging system (Zeego) that employs X-ray technology to image blood vessels. This angiography system allows doctors to move a C-shaped arm to almost any position around the patient, and to visualize internal organs from all sides.

Dyna CT: This new system allows vascular specialists to create CT-like images of soft tissue, and enables them to differentiate between normal and abnormal tissue to visualize, for example, brain tissue and intracranial hemorrhages.

Saturday 11/8/14 at 8:03 PM

I made a huge mistake by not selecting the "Display votes publicly" option when creating this poll..

Sunday 11/9/14 at 1:01 PM
IMO
The only way POTS(primary) can be treated or cured through exercise is if POTS was brought on by deconditioning or prolonged bed rest..

This is common sense.......

POTS(secondary) can never be cured since it was brought on by an underlying illness...

This is common sense as well..........

Sunday 11/9/14 at 1:15 PM

I was pretty confused of what Neurally Mediated Hypotension was and was cross defining it with Neurally Mediated POTS..

Neurally Mediated Hypotension has nothing to do with Neurally Mediated POTS
for the fact the illness lacks Tachycardia........
 
Last edited:

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
I had a lot of trouble early on, but as my health improved w/ diet change, detox and methylation protocol, no longer a problem. My BP tends to be rather low.

PS...You and my brother, who was there at the time, are the only ones I know who still reference Mario Savio. (what a great name). great quote. :thumbsup::balloons:
 
Messages
15,786
I am very interested to learn how many of you have POTS with CFS/ME.
The claim is that 25% to 50% of CFS/ME sufferers have POTS.
This POLL is also to get an idea on actual awareness as well
It's actually a smaller percentage who have POTS, according to research. Most have NMH instead of POTS.

You might want to re-write the poll, since you seem to be conflating POTS with OI, though POTS is just one type of OI.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I said no because I know that I have OI in the form of neurally mediated hypotension instead of POTS. Would you like to add more choices to the poll?

Does this estimate include other forms of OI than POTS?
The claim is that 25% to 50% of CFS/ME sufferers have POTS.

Sushi

Edit: cross posting with Valentijn!
 

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
POTS is pretty simple to diagnose in my opinion.

In fact, I diagnosed myself(as I did with all of my official diagnoses) before I was officially diagnosed with POTS by a cardiologist.
However,as always,(in at least all of my experiences with doctors) when you "know too much" about your condition,it seems to rub doctors the wrong way
and they will quickly dismiss you out of narcissistic behavior.
In simpler words, they will not treat you and will ignore all facts you place in front of them.

Now,
Back to the topic.
All you need is a blood pressure/pulse home model machine. Omron is the most accurate, IMO.


1. lay in the supine position on your bed for around 10 minutes relaxing then take your blood pressure/pulse
and record it.keep the sleeve/cuff attached.

2.immediately stand up right after step 1 and take your blood pressure/pulse as many times as the machine will keep up during the 10 minute required time for the diagnosis of POTS AKA "poor man's tilt table test.
*Note if you are a fainter have someone there who can catch you from falling if you pass out*
If your heart rate/pulse increases 30 beats per minute over your recorded supine heart rate/pulse or goes over 120 beats per minute
You have POTS.It is simple as that..

What does the blood pressure reading mean during this test?
The only role your Blood pressure plays in this test is to determine what type of POTS

1.If your blood pressure continues to drop below 90/60 during the test you have the Neurally Mediated type of POTS or hypotension
AKA low blood pressure.
*This is the form that you will pass out on if you pass out*

2.If your blood pressure continues to rise above 140/90 during the test you have the Hyperadrenergic type of POTS
AKA high blood pressure.

3. if your blood pressure does not change enough to be considered high or low by world standards during the test,which are below 90/60 for low blood pressure or over 140/90 for high blood pressure.
This means you have the unaffected blood pressure type of POTS.

4. if you have the 1,2 and 3 type of POTS and Neurally Mediated Hypotension as I do,you are pretty much screwed as to getting pharmaceutical help! This is the rarest form of POTS and OI and by my calculations, since I'm a man, we make up only 15%
of all known types of cases combined ..As I have this rarest type of POTS, there are only around 15k to 25k cases including myself in the US..Saline IV is the only way to treat this type
I have not yet to find any information on this type to even give it proper name!!

I am by no means a doctor.
I'm just a concerned man who had to do my own research in order to find the proper help or in simpler words,
I am basically my own primary care physician.
 
Last edited:

Gingergrrl

Senior Member
Messages
16,171
I voted yes in your poll but my POTS symptoms can really vary greatly. Initially I was diagnosed with inappropriate sinus tachycardia (IST) and then the diagnosis changed to POTS. With a low dose of Atenolol, my tachycardia is completely under control, but every time I try to stop the Atenolol, it comes back. When it is back, my HR can go into the 160's or 170's just because I stood up but I can also go for several days in a row with no episodes. So I have some version of POTS but it is not consistent. I wanted to explain this so my answer did not mess up your poll.
 
Messages
15,786
The wikipedia is referencing an article which is incorrectly summarizing research. The first article cited by it is referring to blood pressure, not heart rate. THe 2nd study mostly found tachycardia + hypotension, which could just as well be increased heart rate triggered by low blood pressure - they certainly don't mention POTS in the abstract, but rather refer to the findings as orthostatic intolerance. The CFS patients who were chosen to participate in the 3rd study were chosen because they were already known to have tachycardia. The 4th study involved a useless cohort (labeled with CFS based on mass-mailed questionnaire to the general public), and rather bizarrely concluded that healthy controls have greater incidence of OI than CFS patients.

There's better research involving OI in ME patients, and it shows that almost all of us have OI, but that NMH is by far the more common version.
 

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
@Valentijn
Thank you for taking the time and energy to prove those % numbers are off..

I'm not lazy,but extensive reading destroys my energy..

Since I had the word "claim" in those %ages there is no need to edit the OP..
 

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
I voted yes in your poll but my POTS symptoms can really vary greatly. Initially I was diagnosed with inappropriate sinus tachycardia (IST) and then the diagnosis changed to POTS. With a low dose of Atenolol, my tachycardia is completely under control, but every time I try to stop the Atenolol, it comes back. When it is back, my HR can go into the 160's or 170's just because I stood up but I can also go for several days in a row with no episodes. So I have some version of POTS but it is not consistent. I wanted to explain this so my answer did not mess up your poll.
When you are on medications that target slowing heart rate when you have low blood volume..

I believe this will make one's symptoms and lack of blood damage to progress even faster.

My common sense theory:
The heart rate begins to beat rapidly because it is in crisis mode trying to get blood to limbs and brain.
So if one slows the heart rate down without addressing the real reason why the heart rate is racing
which is lack of blood volume this will prolong the time of getting the blood back to the critical areas
thus making everything worse..

IMO of course
 

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
It's actually a smaller percentage who have POTS, according to research. Most have NMH instead of POTS.

You might want to re-write the poll, since you seem to be conflating POTS with OI, though POTS is just one type of OI.
What is the difference between Neurally Mediated type of POTS?
and
Neurally Mediated Orthostaic Intolerence ?
 

Gingergrrl

Senior Member
Messages
16,171
When you are on medications that target slowing heart rate when you have low blood volume..

I believe this will make one's symptoms and lack of blood damage to progress even faster.

My common sense theory:
The heart rate begins to beat rapidly because it is in crisis mode trying to get blood to limbs and brain.
So if one slows the heart rate down without addressing the real reason why the heart rate is racing
which is lack of blood volume this will prolong the time of getting the blood back to the critical areas
thus making everything worse..

IMO of course

@Tired of being sick Thank you and I am happy to hear all theories on this and am still learning myself. In my case, even though the episodes of tachycardia were sporadic, at 160 to 170 bpm they were dangerous and debilitating. I've seen a total of three cardiologists since 2012, including my current cardio who is an autonomic specialist, and all felt that I needed to be on a low dose of a beta blocker (first metoprolol and then switched to Atenolol.) I take 1/2 of the lowest dose 1x per day and it is life changing.

I am also addressing BP and blood volume issues with Midodrine, IV saline, and drinking lots of electrolyte drinks like Pedialyte, coconut water, etc, as well as salt stick capsules. All I can do is trust that this is the best treatment plan for me at this moment (but I know that each of us are very different.)
 

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
@Sushi and @Valentijn

I edited title and added Neurally Mediated hypotension

Thanks to this thread I am quickly learning as I'm not afraid of being corrected, in
fact I encourage it..


I have
1.Unaffected blood pressure form of POTS
2 Hyperadrenergic type of POTS
3.Neurally Mediatedtype of POTS

PS I also edited the POTS poor man's tilt table test as well

Is low blood volume found in all of these conditions 100% of the time?
 
Last edited:

Misfit Toy

Senior Member
Messages
4,178
Location
USA
I answered this, but I don't think I have Pots. I'm fine when standing. Sometimes I get dizzy, but that's in the AM.
 
Messages
15,786
What is the difference between Neurally Mediated type of POTS?
and
Neurally Mediated Orthostaic Intolerence ?
There is no "Neurally Mediated Orthostatic Intolerance". It's called "Neurally Mediated Hypotension". The biggest difference is that POTS hits immediately when standing up, whereas NMH may be delayed by an hour or more. NMH will also feature reduced blood pressure and/or pulse pressure, whereas POTS is basically just tachycardia when standing up.

I get tachycardia sometimes, but it's secondary to the NMH. My heart rate usually doesn't rise immediately when standing, but after some minutes (or hours when it was less severe), my pulse pressure drops and my heart rate rises.

Unfortunately people have come to use "POTS" when they mean "Orthostatic Intolerance", so there's quite a bit of misunderstanding in the area.
 
Last edited:

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
NMH do not have substantive elevated pulse rate (tachycardia) when the blood pressure is down. In my case I get bradycardia. My heart rate slows. This is bad because as the heart rate slows the blood pressure drops further. Its why I pass out walking up stairs sometimes, or even just standing up too quickly. It can be fatal if the bradycardia gets too severe, though POTS can be fatal if the tachycardia gets too severe.
 

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
There is no "Neurally Mediated Orthostatic Intolerance". It's called "Neurally Mediated Hypotension". The biggest difference is that POTS hits immediately when standing up, whereas NMH may be delayed by an hour or more. NMH will also feature reduced blood pressure and/or pulse pressure, whereas POTS is basically just tachycardia when standing up.

I get tachycardia sometimes, but it's secondary to the NMH. My heart rate usually doesn't rise immediately when standing, but after some minutes (or hours when it was less severe), my pulse pressure drops and my heart rate rises.

Unfortunately people have come to use "POTS" when they mean "Orthostatic Intolerance", so there's quite a bit of misunderstanding in the area.

POTS is a lot more than just tachycardia when standing up.

It is what disables me.
It causes every CFS/ME symptom and then some for the fact everything is starving for blood
but not receiving, causing.progressive aging.-

I have Tachycardia the entire time I'm on my feet regardless of what my blood pressure reads.

So if I have hypotension with instant tachycardia what is this called?
 
Last edited:

Gingergrrl

Senior Member
Messages
16,171
My understanding from old definitions of POTS was that when a person stood up their HR rose by 30 bpm or to over 120 bpm and their BP dropped. But with newer definitions, it seems that they have removed the BP part and that people can have the rise in HR with or without the drop in BP and still be POTS. But someone please correct me if I am wrong?!!