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

[Tired of being sick]

@Gingergrrl

See post #6

 

[Tired of being sick]

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.

All this means is your blood pressure does not drop.

POTS is extreme tachycardia
blood pressure is used only to diagnose the type/form of POTS you have..
see post #6

POTS can cause every CFS/ME symptom as well

 

[Valentijn]

POTS can cause every CFS/ME symptom as well

It doesn't cause PEM. It can cause a different type of exercise intolerance which most ME patients (those with OI) also experience in addition to PEM.

 

[Tired of being sick]

It doesn't cause PEM. It can cause a different type of exercise intolerance which most ME patients (those with OI) also experience in addition to PEM.

Low blood volume is the cause of every symptom including cluster of symptoms in POTS itself.

So low blood volume is the key to everything including (NMH I think).

If your limbs organs tissue a are only receiving monophasic blood circulation flow,you are not going to be able to strengthen muscles/cognitive issues period,therefore exercise can not even be tried for the fact just activity as simple as cooking something to eat or take a shower or even stay out of bed in an upright seated position for any length of time is extreme exercise for those with POTS hence any activity causes PEM..

Blood = life

one third of blood = being one third alive..

 

[Hip]

If your heart rate/pulse increases 30 beats per minute over your recorded supine heart rate/pulse ... you have POTS.

Note that for the the home DIY version of tilt table test (aka: poor man's tilt table test), Dr Satish Raj mentions in one of his papers that if you get an increase in heart rate of 27 bpm, this is equivalent to an increase of 30 bpm using a professional tilt table test. (This is because you need to engage your muscles when standing yourself, which changes the blood flow dynamics compared to using a tilt table, which when raised vertical, does not require any muscular effort from you).

So if you are doing this at home, for accuracy you may want to diagnose yourself with POTS if your heart rate goes up by 27 bpm or more, rather than using the threshold of 30 bpm or more.

 

[Hip]

It doesn't cause PEM. It can cause a different type of exercise intolerance which most ME patients (those with OI) also experience in addition to PEM.

Plus POTS responds well to doing lots of exercise, because this conditions your cardiovascular system. Whereas ME/CFS patients often do very badly if they exercise.

 

[Hip]

For those people voting for the "No but I suspect it" option:

Note that it only takes 10 minutes lying down on a sofa at home to diagnose yourself as either having or not having POTS. It's very easy to do.

So those who voted "No but I suspect it" might want to perform this simple home POTS test, and then change their vote (you know that you can now easily change your vote if you want to in these poles).

 

[Hell...Hath...No...Fury..]

Plus POTS responds well to doing lots of exercise, because this conditions you cardiovascular system. Whereas ME/CFS patients often do very badly if they exercise.

Total bummer when you have both.

 

[Hip]

The other thing about POTS testing is that it should ideally be done in the morning. This is because POTS symptoms are more exaggerated in the morning:

In a cohort of 17 patients with POTS, the orthostatic tachycardia was greater in the morning than in the evening (38±4 bpm vs. 27±3 bpm; P<0.001), while there was no diurnal difference in the orthostatic change in blood pressure. These data suggest that to optimize diagnostic sensitivity, postural vital signs should be performed in the morning.

Source: here.

 

[Valentijn]

The other thing about POTS testing is that it should ideally be done in the morning. This is because POTS symptoms are more exaggerated in the morning:

Another difference from NMH then, probably. Mine's definitely worst in the evening ... basically the longer I'm upright throughout the day, the worse it gets.

 

[Hell...Hath...No...Fury..]

For me the POTS is totally random, not great in mornings till i get enough fluids but apart from that, its not so much time of day, and more which parts of the day i've been sitting upright or standing longer. Which can totally vary each day.

 

[Tired of being sick]

I take it that you guys who are claiming that POTS sufferers respond well to doing lots of exercise do not have POTS or even met someone who has it............
And if you try to say they did and were cured.Well then I'll say, they never had "true" POTS in the 1st place..

I live through this horror everyday which makes me an expert on what will and will not help it.

Listen,if your heart rate rises anywhere form 120 bpm to 170 bpm(like my own) you're gonna feel the same as an athlete who just ran a 26 mile marathon.My SOB ness is at the same level as COPD or emphysema, not because my lungs are not healthy but because this is how one would breath after running 26 miles or
a heart rate reaching not only 154 bpm as max of an athlete but 170 bpm as I taking a shower...
My mother had emphysema and most likely what I have on top of it,God bless her soul
Now back to the topic.
From my understanding, an athlete's heart rate should NEVER go over 154 bpm
unless a qualified physician authorizes it through a thorough physical examination.

In fact I already challenged normal healthy friends to try to get their heart rate to rise near mine..
Not one came close because they ran out of energy causing complete exhaustion..
This is why my heart is super strong for the fact it gets a workout multiple times per day above
and beyond professional athletes.
Why?
The heart can only function properly if the blood volume is at adequate levels otherwise it is
always in crisis mode...

I should be "conditioned" to perform my everyday "activities" but I'm not for the fact my heart rate goes through the roof no matter how many times I do my activities/extreme exercise causing a breakdown of total exhaustion as described in post #24..........

It takes me at least three times the energy of any normal healthy person to do anything including think or read.

For the fact my brain uses a minimum of 3 regions instead of one just to half azz function..
This is what a brain does when it is supplied a third of total energy from only 33% of the blood&oxygen
supply total to work with,putting it in constant crisis mode as well.
which in turn causes a chain reaction of crisis mode system operations all through the body.

Did any of you CFS//ME POTS sufferers ever wonder where your stress and anxiety comes from?
Look no further..

Again, what is the key to all of this?

significant absence of blood volume&oxygen .........

Wanna go deeper?

Vagus nerve dysfunction that also influences the kidney which is responsible for regulating blood volume is absolutely FUBAR.

There is no "known" exercise on EARTH that can send the right messages to the Vagus nerve & kidneys
that I know of,how bout you?..

Vagus nerve stimulation can actually be more damaging to POTS sufferers..
From what I understand,if you're lucky, you will just shit your pants under Vagus stimuli......


2 liters of Saline IV's every 48 hours(indefinitely) or Fludrocortisone with at least a gallon of caffeine free liquids along with 3 salt sticks along with Fentanyl,cremes and Oxycontin in order to manage
the severe chronic pain from broken back, multiple neck injuries, a ton of arthritis in uncommon places
and tender spots on every square inch of my body (indefinitely)..

And yes you guessed it,poor blood&oxygen supply is to blame for the relentless chronic pain as well.
especially the wide spread tender spots near the surface of the skin since the skin is last in line on the body's
blood&oxygen supply list..

And I accept this..

For now at least.........





Monophasic=33%=a third=three times the use of energy=1/3 of blood volume=disabled


This was and always will be my opinion my own opinion for at least the time being.

 

[Tired of being sick]

The other thing about POTS testing is that it should ideally be done in the morning. This is because POTS symptoms are more exaggerated in the morning:

Another difference from NMH then, probably. Mine's definitely worst in the evening ... basically the longer I'm upright throughout the day, the worse it gets.

Simply incorrect.
The POTS I have is at its best behavior in the morning as far as heart rate and BP goes.
It gradually gets worse through the day.
The more activity I try to do, the worse it gets..........

 

[Tired of being sick]

It took me a total of 5 hours to complete those 2 posts above..

 

[Hip]

I take it that you guys who are claiming that POTS sufferers respond well to doing lots of exercise do not have POTS or even met someone who has it............
And if you try to say they did and were cured.Well then I'll say, they never had "true" POTS in the 1st place..

But you have ME/CFS with POTS, so obviously exercise is likely going to make you worse because of the exercise intolerance of ME/CFS.

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).

Simply incorrect.
The POTS I have is at its best behavior in the morning as far as heart rate and BP goes.

Dr Satish Raj's study of 17 POTS suffers found that they were worse in the morning. Are you sure your measured you POTS properly?

 

[Tired of being sick]

But you have ME/CFS with POTS, so obviously exercise is likely going to make you worse because of the exercise intolerance of ME/CFS.

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).



Dr Satish Raj's study of 17 POTS suffers found that they were worse in the morning. Are you sure your measured you POTS properly?

Did you know that I was diagnosed by a cardiologist with all 3 types of POTS?
Don't forget, I have the Neurally mediated type of POTS as well.

And the fact that I'm the rarest of the rare with all three types of POTS..
As explained many many times..

There are no comparisons as I did not find any,and I'm very quick to find what I'm looking for on the information
super highway of Google keywords web search that has more intelligence on it than any single or group of doctors could ever dream of..

Remember, I live with this shit everyday as I'm insulted that you want to try to play shrink with me by questioning
my ability to read simple numbers off a blood pressure/pulse machine..

 

[Hip]

I live with this shit everyday as I'm insulted that you want to try to play shrink with me by questioning my ability to read simple numbers off a blood pressure/pulse machine.

I am not sure how asking whether a measurement was taken properly can be construed as playing psychiatrist.

Did you know that I was diagnosed by a cardiologist with all 3 types of POTS?

How can you be diagnosed with multiple subtypes of POTS. The three subtypes of POTS are based on peripheral blood flow levels: low flow POTS, normal flow POTS, and high flow POTS.

Can you explain how you can simultaneously have both low blood flow, normal blood flow, and high blood flow. These subtypes would appear to be mutually exclusive.

 

[Tired of being sick]

I am not sure how asking whether a measurement was taken properly can be construed as playing psychiatrist.




How can you be diagnosed with multiple subtypes of POTS. The three subtypes of POTS are based on peripheral blood flow levels: low flow POTS, normal flow POTS, and high flow POTS.

Can you explain how you can simultaneously have both low blood flow, normal blood flow, and high blood flow. These subtypes would appear to be mutually exclusive.

You are either suggesting I have dyslexia or an inability to read simple numbers correctly.
So which is it?

First of all it is not "low blood flow, normal blood flow and high blood flow"

It is low blood pressure(neurally mediated form of POTS), unaffected blood pressure form of POTS and high blood pressure (hyperadrenergic form of POTS)

Which is simply wild extreme fluctuations of blood pressure which are caused by LOW BLOOD VOLUME..

If you read my posts thoroughly all through this thread instead of cherry picking as I explained sooo many times
that I might just be a parrot as well..

 

[Hip]

First of all it is not "low blood flow, normal blood flow and high blood flow"

Yes it is. These are standard terms used to describe POTS subtypes:

POTS researchers have classified POTS in various ways, such as:

"Primary" and "Secondary" POTS;

"high flow" and "low flow" POTS;

and also by the primary symptoms, to wit:
hypovolemic POTS (POTS associated with low blood volume),
partial dysautonomic POTS ("PD" POTS is associated with a partial autonomic neuropathy and is sometimes referred to as neuropathic POTS) and
hyperandrenergic POTS ("hyper" POTS is associated with elevated levels of norepinephrine).

Source: here.

I did read your earlier post here, but cannot see how you can be diagnosed with more than one subtype of POTS, since your blood pressure either: goes down on standing (corresponding to your type 1 POTS), goes up on standing (corresponding to your type 2 POTS), or does not change on standing (corresponding to your type 3 POTS).

But your blood pressure cannot simultaneously do 1, 2, and 3 together. You cannot have both low and high blood pressure simultaneously. So I cannot see how you can be diagnosed with more that one subtype of POTS, in the way you have described these subtypes.

 

[Tired of being sick]

Keep reading my POSTS it will come to you someday.

I'm through with wasting my precious energy..