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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
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..
 

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
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.
 

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
If a patients tilt table test results are:
blood pressure drops continuously to below 90/60 during testing without recovery
until the test is finished or terminated, while the heart rate climbs continuously to or above 30 bpm or a heart rate total
at or above 120 bpm..

This is the Neurally mediated form of POTS....................................................................
 

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
However if a patient's tilt table test includes blood pressure acting as a yo yo between and above both Blood pressure extremes while meeting the standard diagnosis criteria for POTS which is 30 or more bpm or above 120 bpm.

this is a combination of all 3 three forms of POTS........
 
Messages
1,082
Location
UK
All this discussion has got me thinking about what i am now. Ive just been diagnosed with POTS by Julia Newton from the tilt test i did a few months ago. I have no idea what my blood pressure was doing during the test, though i always have low or borderline low blood pressure generally, i have no idea the readings upon standing. Will check that out myself at home just out of curiosity.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I know someone with pure POTS, without ME/CFS, and they improved their POTS (as measured by reductions in their poor man's tilt table heart rate jump) from regular running (10 miles a week).

Standard medical dogma holds that POTS and other OI is improved by exercise, particularly of the leg muscles, due to increased muscle tone putting pressure on the leg vasculature. They consider OI to be treatable by exercise. This is not necessarily the case with ME. I do wonder though if very slow leg strength exercising might help, avoiding the aerobic component of exercise. I got into this debate, briefly, with a physio at the hospital who wanted me to do more and more exercise - I am sure she was using a deconditioning model.
 

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
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..........
 
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Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
I was pretty confused of what Neurally Mediated Hypotension was and was cross defining it with Neurally Mediated POTS..

Neurally Mediated Hypotension "by itself" has nothing to do with Neurally Mediated POTS
for the fact the illness lacks Tachycardia........
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
POTS(secondary) can never be cured since it was brought on by an underlying illness...

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

Yes, it is. However they then argue that increased conditioning helps treat but not cure POTS or OI in general. I almost wound up having an argument with the physio over this, but did not want to raise certain issues while I was an inpatient.

One of the big problems in medicine is that combinations of issues are not covered in research. This includes drug A plus drug B issues, as well as disease X plus disease Y issues. Research is done on isolated conditions, where every variable is removed that can be removed. Unfortunately this blows up quite a lot in the real world as people are not POTS, or ME, or a beta blocker taker, they are more complex than that. The real world is messy, and reductionist science does less well with messy.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Neurally Mediated Hypotension has nothing to do with Neurally Mediated POTS
for the fact the illness lacks Tachycardia........
As I stated early, I have OI with bradycardia not tachycardia. Both are OI, but the response is different. I am not clear if these are different conditions, or different responses to the same condition, or some mix of the two involving subtypes. OI is so common in ME its part of the definitions, but the type and variations of OI do vary a bit.

This makes sense if ME involves dysfunction in the brain stem (lower brain) involving autonomic regulation. The problems may be variable based on slightly different brain issues, or different physiological complications including genes. Nobody knows yet, its a huge hole in the science. Of course to make things complicated issues like EDS might compromise peripheral vascular regulation via soft tissue problems. Then there are gut issues, pathogens, etc.

Messy, messy, messy.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Of course to make things complicated issues like EDS might compromise peripheral vascular regulation via soft tissue problems. Then there are gut issues, pathogens, etc.

Messy, messy, messy.

Yes, messy, messy messy! And for me, the level of OI changes day to day. Sometimes almost none, others a big problem. I just returned from a trip to see my doctor. The clinic is in an area with clean, clear air--no noticeable OI.

But, the hotel had a casino under it and there was a lot of cigarette smoke and masking chemicals in the air. Walking through that part of the hotel to get to "food," OI was really noticeable.

Sushi
 

Hip

Senior Member
Messages
17,824
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.......

Not according to this study:

Exercise training versus propranolol in the treatment of the postural orthostatic tachycardia syndrome


By the way, the blood pressure method of determining which POTS subtype you have, that you described in you post here, would you have any references for that? Is this a method generally used by POTS specialists?

The reason I am interested is that I would like to include this method of subtype testing in the Chronic Fatigue Syndrome Testing and Treatment Roadmap. Currently the Roadmap says the following regarding testing for POTS:

Postural orthostatic tachycardia syndrome
There is a high prevalence postural orthostatic tachycardia syndrome (POTS) in ME/CFS.1 The symptoms of POTS include: postural tachycardia (increased heart rate on standing), headache, abdominal discomfort, dizziness, feeling faint, nausea, fatigue, lightheadedness, sweating, tremor, anxiety, palpitations, exercise intolerance.

Note that as well as being a common condition in ME/CFS patients, POTS can also occur on its own without ME/CFS, and in these cases, POTS can sometimes be misdiagnosed as ME/CFS, since POTS symptoms are similar to those of ME/CFS. Prof Julia Newton believes that a third of all ME/CFS diagnoses could be wrong, because the patient may in fact only have POTS rather than ME/CFS.1 POTS is a treatable condition, so everyone with ME/CFS should investigate whether they have POTS.

POTS is medically diagnosed using the tilt table test. However, you can yourself easily check if you have POTS using a simple home method sometimes called the "poor man's tilt table test," which involves measuring the increase in your heart rate that occurs when you stand up from a lying down position. To perform this "poor man's tilt table test," you simply lie down horizontally and relax for 10 minutes, and at the end of this 10 minute period, measure your heart rate. Then stand up, and after two minutes standing, measure you heart rate again. After 5 minutes standing, measure your heart rate a third time, and after 10 minutes standing, measure it a fourth and final time. If any of your heart rate measurements taken on standing are faster by 27 beats per minute or more than your heart rate while lying down, then you have POTS.

Note that when using a professional tilt table, the threshold for diagnosis of POTS is an increase in heart rate of 30 beats per minute or more; but Dr Satish Raj says that for the "poor man's tilt table test," the threshold for diagnosis should be set to 27 or more. Dr Raj also suggests that for maximum sensitivity, testing for POTS should be performed in the morning, because POTS symptoms are worse in the morning.1 Note that those aged 12 to 19 years old must have an increase of at least 40 beats per minute in order to be diagnosed with POTS.

Further info on POTS:
Orthostatic Intolerance in CFS II
dinet.org – POTS symptoms
dinet.org — POTS Diagnosis
www.potsuk.org
www.potsuk.org — Diagnosis
POTSgrrl

What I would like to do is add a description of how to determine POTS subtypes.
 
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Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
Not according to this study:
The only study that matters is the study I am conducting on myself..

This is not rocket science,it is simply self awareness..

Something that was taken from us at birth through "education, religion,and politics"..

Once you are able to think for yourself everything is no longer a mystery..

The best thing that comes with self awareness is you no longer have to depend on anyone
for answers..
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
@Tired of being sick - I had trouble answering your poll since my diagnosis (two different Tilt Table Tests, aka, Head Up Tilt tests) has been called Neurally Mediated Syncope, Neurally Mediated Hypotension, Vasodepressor Syncope, Neurocardiogenic Syncope, and probably other names, too. But I don't recall seeing the term Neurally Mediated Orthostatic Intolerance.

The words themselves are not all that big of deal to me. The one exception is that I don't like to use syncope for my diagnostic label because I have never fainted "in real life" -- only on the tilt table. So, for example, I don't have any concern about driving and then suddenly passing out (as some people do).

At any rate, I did not want to answer your poll incorrectly so I didn't check any item.

Currently the Roadmap says the following regarding testing for POTS: <details snipped>

What I would like to do is add a description of how to determine POTS subtypes.

Adding more information (e.g., POTS subtypes) seems reasonable to me as long as there are caveats, some text that explains that doctors/researchers often differ over terminology and diagnostic criteria when it comes to defining different types of autonomic dysfunction. As Alex and Sushi mentioned above, Orthostatic Intolerance can be a pretty complicated ("messy") area just in terms of definitions/diagnoses, let alone treatment.

I would also like to add a different piece of data to that roadmap. I think its important to mention that a patient with NMH (the delayed drop in blood pressure) often does not show any blood pressure drop at all when using the "poor man's tilt table test" (e.g., simple standing test done at home). A patient can have symptoms while standing and still not show any dramatic BP drop unless the tilt table test is used. In my two tilt table tests it took either 20 or 30 minutes before there was a dramatic drop in blood pressure (down to something unmeasurable) and I passed out.

I don't know all the medical reasons behind why a standing test (whether done at home or in the doctor's office) does not show the BP drop that often shows up on the Head-Up Tilt. I think the slight tilt is more stressful for the autonomic system than normal standing (90 degrees) but I don't know exactly why. Perhaps it is a combination of using leg muscles (keeps the blood circulation going a bit) and/or not actually standing completely still (any shifting around will keep the BP from dropping).

Regarding terminology, I really like the term Chronic Orthostatic Intolerance as used in this article on emedicine.com:
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 believe this is meant to 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.

That list of symptoms above (extract from the article) is a very close fit for me.
 

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
had trouble answering your poll since my diagnosis (two different Tilt Table Tests, aka, Head Up Tilt tests) has been called Neurally Mediated Syncope, Neurally Mediated Hypotension, Vasodepressor Syncope, Neurocardiogenic Syncope, and probably other names, too. But I don't recall seeing the term Neurally Mediated Orthostatic Intolerance.

If you had tachycardia of 30 bpm or greater or a total heart rate rise at or above 120 bpm
during both of those tests..

You have the Neurally Mediated form of POTS

Most Doctors are in the stone age when it comes to POTS,
I had many doctors ignoring my POTS after I was officially diagnosed..
In fact..
A team of cardiologist at the ER tried to call my POTS sinus Tachycardia..

and my PCP said and I quote "POTS is just a fancy name for Orthostaic Intolerance"

And blamed it on myself saying "medications and snuff are the the only reasons you have
Orthostaic Intolerance and if you quit, these issues will cease to exist..

She openly admitted that POTS does not exist and she will NEVER treat it.....
 
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ahimsa

ahimsa_pdx on twitter
Messages
1,921
If you had tachycardia of 30 bpm or greater or a total heart rate rise at or above 120 bpm during both of those tests..

You have the Neurally Mediated form of POTS

But I did not have an increase of 30 bpm on the tilt table tests. I don't remember the exact number but it was a small heart rate increase. It was not enough to qualify for a POTS diagnosis.

However, my plummet in blood pressure (way more than a 20 point drop, it went down to something unmeasurable) after 20 or 30 minutes, and my subsequent fainting, was definitely a significant finding. My readings on the tilt table test led to a diagnosis of Neurally Mediated Hypotension (NMH).

This diagnosis of NMH was also what I used when I filled out the forms for long term disability for social security. My social security disability was granted on my first try, no denial. And SSA uses the term Neurally Mediated Hypotension on one of the documents about how to evaluate CFS claims - see http://www.ssa.gov/OP_Home/rulings/di/01/SSR2014-01-di-01.html .

I hope I don't sound too argumentative here. You seem to prefer the phrase "the Neurally Mediated form of POTS" to "Neurally Mediated Hypotension" but that phrase is hard for me to understand and interpret. It seems to require an increase in heart rate that did not show up in either of my tilt table tests.

Do you have any references to research studies or web sites that use that phrase? Maybe that would help me understand where you are coming from.

As it happens, after being sick for so many years (I got sick in 1990) I now seem to have both POTS and NMH. My understanding is that they are different problems but a patient can have either one or the other or both. My cardiologist and I have discussed this a few times based on my heart rate measurements taken while standing, first thing in the morning, before I take any of my medications.

I'm currently seeing a cardiologist who prescribes midodrine, fludrocortisone, time-released potassium, salt tablets, extra water. It's not cure but these drugs, along with avoiding anything (standing, heat, etc.) that triggers my NMH symptoms, have helped me.

and my PCP said and I quote "POTS is just a fancy name for Orthostatic Intolerance"

And blamed it on myself saying "medications and snuff are the the only reasons you have
Orthostaic Intolerance and if you quit, these issues will cease to exist..

She openly admitted that POTS does not exist and she will NEVER treat it....

I'm sorry that you are having trouble finding a doctor who will help you with treatment. I hope you find another doctor who will help you.
 
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Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
By the way, the blood pressure method of determining which POTS subtype you have, that you described in you post here, would you have any references for that? Is this a method generally used by POTS specialists?
The fact that POTS is diagnosed by postural tachycardia
blood pressure's only role is the type of BP
problems you might or might not have along with POTS..

Some positive for POTS patient's BP is not affected enough to be low or high
staying between 90/60 and 140/90
This is POTS with unaffected BP.

Some positive for POTS patient's BP steadily lowers to or below 90/60..
This is POTS with Neurally Mediated Hypotension.

Some positive for POTS patient's BP steadily rises to or above 140/90
along with excessive increase of plasma norepinephrine.
This is POTS with a Hyperadrenergic response causing hypertension..
I call this my fight or fight adrenal action.
This gives me incredible strength for a short short period of time
with instant fall hard and crash afterwards..