POTS vs NMH in people with ME/CFS

[Sallysblooms]

That is pretty much what a lot of POTS is, for me it is. Just do not get upset and learn all you can about healing the nerves. I did that. I am determined to win. Most of the info on the web and with normal docs is just "duh," clueless. But I have learned a TON. Just do all you can to heal those nerves. Find an integrative doctor if you can also.

 

[HTree]

Hi All:
I am pretty sure i have NMH-- definitely takes a while, so not POTS. I am now considering AVs/immunomodulators for the virus portion of the illness (mostly EBV and a little HHV6). I'm wondering: anyone with NMH-- do you take a drug for this, as well as AVs etc? Partly i'm wondering if immune system is a big part of the problem, trying AVs etc first might take care of this "secondary" autonomic nervous system issue/NMH, so that taking Florinef or another NMH drug would be redundant. Any thoughts? Thanks all, Best of luck with your research...

 

[xrayspex]

interesting thread, i have nmh per tilt table in 96, after they administered the med bottom no. dropped way down and syncope
i saw a regular cardio last year when shortness of breath was flaring and he dismissed that dx and test
depressing, why are all the issues and labs related to cfs discounted by mainstream
and interesting, my pcp referred to it as POTs even tho I was dx back then with nmh and like this thread points out there is a dif, he is supposed to be more aware of cfs stuff than other mainstream docs here but I do not get sudden severe drops in bp i dont think usually, its gradual as day goes on to point of needing to lie down for awhile eventually like pressure builds up and feeling of no o2

 

[Sushi]

Hi All:
I am pretty sure i have NMH-- definitely takes a while, so not POTS. I am now considering AVs/immunomodulators for the virus portion of the illness (mostly EBV and a little HHV6). I'm wondering: anyone with NMH-- do you take a drug for this, as well as AVs etc? Partly i'm wondering if immune system is a big part of the problem, trying AVs etc first might take care of this "secondary" autonomic nervous system issue/NMH, so that taking Florinef or another NMH drug would be redundant. Any thoughts? Thanks all, Best of luck with your research...

I tried a lot of drugs to help with NMH--including Florinef. The only ones that worked for me were norepinephrine reuptake inhibitors (strattera mainly). While this worked, it obviously was not curing anything and I did not want to take it long term. Methylation therapy helped and now I take GcMAF and Nexavir, and things are slowly getting better.

But, of course, each of us responds differently!

Best,
Sushi

 

[taniaaust1]

I have NMH and not POTS, but I regard my high blood pressure as compensatory for the NMH.

Many have either NMH or POTS. I suspect the 95% figure mentioned by Tania was probably a miscommunication from the Society and referred to OI. Tania, do you have a link? I do think most of us have OI, after all neurological signs are mandatory for a diagnosis of ME or CCC ME/CFS..

Bye, Alex

Alex.. I'll try to look for it (another day when Im feeling more up to searching for something), it is quite possible I did confuse OI with POTs.. I clearly remember the figure was in the 90s and that it was something said by one of the American societies.

 

[taniaaust1]

Conventional understandings would suggest that POTS patients dont get decreases in postural BP, only increases in HR. If HR goes up while BP goes down then its NMH or NCS.

If the heart rate goes up 30 beats per minute, while the BP goes down.. the going down for the BP doesnt take away from the fact the heart went up that degree. This then would mean that the person then has both NMH as well as a POTS diagnoses, not that they only just have NMH
Autonomic dysfunctions commonly do occur together...

 

[Sharon Lang]

I have nmh per tilt table test... Ehow has this information on nmh. Symptoms


I also have rapid heart rate ...does that mean I have both pots and nmh?


Note it is mislabeled as hypertension.....lol
The primary symptoms of neurally mediated hypotension are a quickening of the heart rate and a lowering of the blood pressure. The effects come on suddenly, often causing dizziness, sweating, weakness of the limbs and a light-headed feeling. Fainting, passing out and blacking out are also common symptoms.

Treatment
There is no known cure for neurally mediated hypotension, but several treatments have proven effective. Not all treatments work for all patients, and each patient needs to find out which treatment suits him best. The most common treatments involve medications that prevent the slowing of the heart and that increase blood pressure. Increased sodium intake is also commonly used. Many treatment plans now use fludrocortisone (florinef), a drug that aids in sodium retension.

Sponsored Links



Read more: What Is Neurally Mediated Hypertension? | eHow.com http://www.ehow.com/about_5185949_neurally-mediated-hypertension_.html#ixzz2S67SEWXP

 

[Sharon Lang]

This is an interesting conversation. I'm reading with a great deal of interest.

Dr. Klimas diagnosed me with POTS in the last year.

I faint.

I have tachycardia. (Up to 165 standing.)

I'm beginning to wonder though if I have another significant autonomic issue. Am having trouble understanding all the different autonomic illnesses...(probably brain fog.)

Am unable to take the Atenolol Dr. K prescribed because my BP drops to 80-something over 40-something.

I'm most concerned and frankly scared by the the extreme pain I'm having in my thighs and difficulty walking short distances. Have had debilitating CFS since '85-'86...But this is VERY different.

Has anyone else with POTS or another autonomic diagnosis experienced extreme thigh pain?

My legs feel like lead. Am a small person, without extra weight to carry.

Am trying to understand what's happening, and though the POTS diagnosis is true, can't help but wonder if another autonomic issue is at play.

Am very interested in hearing about other autonomic issues with people with CFS!

Best, Questus

Did you have a tilt table? Pots does not cause fainting. I faint.

 

[Sharon Lang]

I had Alan h1 n1 shot years ago, when it was restricted and hard to get. I passed out and they could not find my Bp....anyone else have a reaction like tis to meds?

 

[Sharon Lang]

POTS

[

Sushi wrote:

Re: falling on the floor, I thought most folks with ME/CFS who have NMH don't generally "fall on the floor" (faint) or else they would get more attention from their doctors. Is this not true? Maybe lots of folks with ME/CFS do faint and I have missed it?



Actually I do fall on the floor!! I also have fits and tremors.

Its funny coz I am just reading this now. I had been ro my 3rd cardiologist on the day of the first post of this thread.
After it I had severe relapse.

I was first dx with OI as part of being CFS in 2003 but had had symptoms even before CFS. I had HR increase and BP fluctutions but I was
able to stand for 20 minutes.

Since then i developed severe symptoms which I now believe coincided with menopause and instead of feeling
like I need to sit down, I suddenly felt I had to lay down. But if I had to stay upright I just either collapsed
or had seizure like episodes.

My holter monitor results were deemed normal despite high heart rates from just being upright...they just
were never high enough.

I had a TTT and ECG and I developed severe symptoms. My HR was not correctly monitored....on the ECG
my BP actually went up.

It seems that I sometimes have a narrowing of the pulse pressure and an increase of HR . If it is done
correctly it shows 30 bpm increase but when it gets to about 110 I get symptoms. Many have very high
heart rate and BP drop which I believe is postural hypotension and drs are expecting that pattern, not my
pattern, so they think its anxiety.

It has been hard to get a dr to take this seriously but it has increased my level of disablity
enormously as I now spend most of the day completely flat.

Just recently I have managed to get some movement and hope to recondition, as that is
always a good cop out for drs (explaining the prob as decodtioning).

I feel that if I could at treat the OI I could have a much iproved quality of life.

They say,soy nmh persons have learned when they get symptomatic md lie down, sit or eat something with salt. They adapt. Some do fait, especially if you have no option of sitting I.e. standing in long lines etc.

 

[ahimsa]

They say NMH persons have learned when they get symptomatic and lie down, sit or eat something with salt. They adapt. Some do faint, especially if you have no option of sitting, i.e. standing in long lines, etc.

I know what you mean about learning to adapt, Sharon.

I learned to adapt in so many subconscious ways - fidgeting, walking around, bending over the grocery cart - long before I realized what I was doing. And as for "no option of sitting" (no bench or chair) there were quite a few times, such as waiting for an elevator, when that did not stop me. I just sat down on the floor -- so I guess there's always a sitting option, LOL!

Actually, I did not know at the time that I was preventing myself from fainting. I just got this horrible "I have to sit down RIGHT NOW!" feeling. Now I've learned to recognize that feeling as pre-syncope (before fainting).

I had my first tilt table test in Jan. 1995. I had a friend who was in the Johns Hopkins study in late 1994 and she sent me the information. I tried to get in the study but it was full by that time. But one of the doctors involved in the study, Dr. Bou-Holaigah, actually called me at home. I was so impressed that a doctor would care enough to do this! He said that my symptoms looked a lot like NMH and I should try to find a doctor nearby who would do the test. I found a cardiologist who was open minded enough to order a tilt table test (before the study was even published) and that's how I found out that I have this problem.

 

[Sea]

Did you have a tilt table? Pots does not cause fainting. I faint.

Actually POTS can cause fainting. When the heart races it ends up not pumping effectively, oxygen to the brain is reduced and a faint can ensue even without a bp drop

 

[Sea]

This is an interesting conversation. I'm reading with a great deal of interest.

Dr. Klimas diagnosed me with POTS in the last year.

I faint.

I have tachycardia. (Up to 165 standing.)

I'm beginning to wonder though if I have another significant autonomic issue. Am having trouble understanding all the different autonomic illnesses...(probably brain fog.)

Am unable to take the Atenolol Dr. K prescribed because my BP drops to 80-something over 40-something.

I'm most concerned and frankly scared by the the extreme pain I'm having in my thighs and difficulty walking short distances. Have had debilitating CFS since '85-'86...But this is VERY different.

Has anyone else with POTS or another autonomic diagnosis experienced extreme thigh pain?

My legs feel like lead. Am a small person, without extra weight to carry.

Am trying to understand what's happening, and though the POTS diagnosis is true, can't help but wonder if another autonomic issue is at play.

Am very interested in hearing about other autonomic issues with people with CFS!

Best, Questus

Did you ever find out what was going on with your thigh pain Questus ? I too have POTS with a heart rate that can climb to 160 on standing and I have only recently developed thigh pain that continues to get worse with walking. The doctor has put it down to the osteoarthritis/spinal stenosis that I have but I'm not sure that's the answer

 

[Sharon Lang]

I know what you mean about learning to adapt, Sharon.

I learned to adapt in so many subconscious ways - fidgeting, walking around, bending over the grocery cart - long before I realized what I was doing. And as for "no option of sitting" (no bench or chair) there were quite a few times, such as waiting for an elevator, when that did not stop me. I just sat down on the floor -- so I guess there's always a sitting option, LOL!

Actually, I did not know at the time that I was preventing myself from fainting. I just got this horrible "I have to sit down RIGHT NOW!" feeling. Now I've learned to recognize that feeling as pre-syncope (before fainting).

I had my first tilt table test in Jan. 1995. I had a friend who was in the Johns Hopkins study in late 1994 and she sent me the information. I tried to get in the study but it was full by that time. But one of the doctors involved in the study, Dr. Bou-Holaigah, actually called me at home. I was so impressed that a doctor would care enough to do this! He said that my symptoms looked a lot like NMH and I should try to find a doctor nearby who would do the test. I found a cardiologist who was open minded enough to order a tilt table test (before the study was even published) and that's how I found out that I have this problem.

I had my first tat in 1995 as well.


This is what I understand the difference to be. You can have both nmh and pots...

POTS is often accompanied by vasovagal syncope, also called "neurally mediated hypotension" (NMH) or "neurocardiogenic syncope" (NCS). Vasovagal syncope is a fainting reflex due to a profound drop in blood pressure. Autonomic dysfunction that occurs with these disorders causes blood to inappropriately pool in the limbs away from the heart, lungs, and brain. The combination of misdirected bloodflow and hypotension will invoke syncope. Tachycardia associated with POTS may be a cardiac response to restore cerebral perfusion. However, a characteristic of POTS is normotension or even hypertension when presyncope or syncope is experienced, suggesting cerebral vasospasm or autoregulatory failure may account for syncope.

 

[Sharon Lang]

What are NMH and POTS?
Neurally mediated hypotension refers to a drop in blood pressure that occurs after being upright. We define NMH by a drop in systolic BP of 25 mm Hg (compared to the BP measured when the person is lying flat) during standing or upright tilt table testing. Although NMH may be slightly more common in people with a low resting blood pressure, most people who develop NMH during standing have a normal resting blood pressure. NMH is an abnormality in the regulation of blood pressure during upright posture. It occurs if too little blood circulates back to the heart when people are upright, a situation that can trigger an abnormal reflex interaction between the heart and the brain that results in a lowering of blood pressure. NMH is sometimes known by the following names: the fainting reflex, delayed orthostatic hypotension, neurocardiogenic syncope, vasodepressor syncope, vaso-vagal syncope. Syncope is the medical term for fainting.
Postural tachycardia syndrome refers to an exaggerated increase in heart rate with standing. A healthy individual usually has a slight increase in heart rate—by about 10-15 beats per minute—within the first 10 minutes of standing. POTS is considered present if the heart rate increases by 30 beats per minute, or if it reaches 120 beats per minute or higher over the first 10 minutes of standing, accompanied by orthostatic symptoms. POTS is an abnormality in the regulation of heart rate; the heart itself is usually normal. Some patients with POTS in the first 10 minutes of upright standing or tilt testing will go on to develop NMH if the test is continued; the two conditions often are found together, and they are not mutually exclusive diagnoses.


Nmh is dis regulation of Bp and pots dis regulation of heart rate.

 

[Sharon Lang]

[quote="Sharon Lang, post: 351944, member: . NMH is an abnormality in the regulation of blood pressure during upright posture.

POTS is an abnormality in the regulation of heart rate; the heart itself is usually normal.


Nmh is dis regulation of Bp and pots dis regulation of heart rate.[/quote]
Source. http://www.cfids.org/webinar/cfsinfo2010.pdf

 

[ahimsa]

You can have both nmh and pots...

Yes, I mentioned that in my first post:

My understanding is that POTS and NMH are two different forms of Orthostatic Intolerance (see http://www.cfids.org/about-cfids/orthostatic-intolerance.asp ) and that a patient can have either one, or the other, or both. Also, I believe that within the POTS category there are different forms (but I have not read as much about that).

My reason for starting this thread was to ask why more patients on this forum talk about POTS than NMH (aka, NCS = Neurocardiogenic Syncope, Vasovagal Syncope and other names). I had a couple of guesses about why:

1) Maybe POTS is more common in people with ME/CFS?
(either alone or with the huge drop in blood pressure)

2) Maybe POTS is easier to diagnose?

Perhaps both of those guesses are wrong and there's some other reason. But it is interesting that more people on this forum seem to talk about POTS, or use just the umbrella term OI. I don't see very many people talking about NMH or NCS.

On the other hand, I have not done a formal count or anything. So it's also possible that my impression is wrong about more people talking about POTS. Maybe I'm just not reading the threads where folks have talked about NMH .

NMH is dis regulation of BP and POTS is dis regulation of heart rate.

I do understand that patients can have either an extreme drop in blood pressure, or an increase in heart rate, or both. But I'm not sure I agree with a simple statement that each affects only one part of the autonomic system. I think there's more interconnection between these two symptoms.

However, since I'm not an expert (cardiologist or cardiac electrophysiologist) then I start to get lost when trying to understand some of the more technical details. So I guess that very simple statement is good enough for now.

 

[Sharon Lang]

Yes, I mentioned that in my first post:

My reason for starting this thread was to ask why more patients on this forum talk about POTS than NMH (aka, NCS = Neurocardiogenic Syncope, Vasovagal Syncope and other names). I had a couple of guesses about why:

1) Maybe POTS is more common in people with ME/CFS?
(either alone or with the huge drop in blood pressure)

2) Maybe POTS is easier to diagnose?

Perhaps both of those guesses are wrong and there's some other reason. But it is interesting that more people on this forum seem to talk about POTS, or use just the umbrella term OI. I don't see very many people talking about NMH or NCS.

On the other hand, I have not done a formal count or anything. So it's also possible that my impression is wrong about more people talking about POTS. Maybe I'm just not reading the threads where folks have talked about NMH .


I do understand that patients can have either an extreme drop in blood pressure, or an increase in heart rate, or both. But I'm not sure I agree with a simple statement that each affects only one part of the autonomic system. I think there's more interconnection between these two symptoms.

Well, I typically do not like to guess, that is why I cut and paste what the research says. If I had to guess, I would say that doctors see the POTS and make a decision for one reason or another not to run a ttt.

It seems to me the difference in the two is the source of the problem. So, perhaps, and again just guessing here, the doctors feel that it is all OI , so the treatment plan would be similar, and feel there is no need to run a test when the increase in heart rate is enough to confirm POTS. Also, I had a horrible relapse after my ttt. Perhaps, they do not want to put people through that.


I know that now they try to counter the effects so the relapse is not as bad .

What I am saying is that my guess is many of the POTS patients probably have NMH, but have not been tested for one reason or another.

 

[Sharon Lang]

I do understand that patients can have either an extreme drop in blood pressure, or an increase in heart rate, or both. But I'm not sure I agree with a simple statement that each affects only one part of the autonomic system. I think there's more interconnection between these two symptoms.


I,don't think dr Rowe is saying it affects one part, but is the source. Nmh's source is the brain. Pots' source is the heart. That's how I read it.


I did post the URL above, but is is hard to read. Cfids webinar.

However, since I'm not an expert (cardiologist or cardiac electrophysiologist) then I start to get lost when trying to understand some of the more technical details. So I guess that very simple statement is good enough for now. [/quote]

 

[ahimsa]

Well, I typically do not like to guess, that is why I cut and paste what the research says.

Umm, I think there may be some confusion here? I'm not trying to second guess the research!

You see, there has not been any formal research about how many people on the Phoenix Rising forum have posted about POTS vs. other types of OI. So, without that research, I don't think there is any option other than guessing why people post about POTS more often.

Okay, enough joking. On a serious note, I started this thread just to have a conversation. I'm sorry if it seemed like I was "guessing" instead of just sticking to the research.

It seems to me that there is still a lot of research to be done, right? And even experts on Orthostatic Intolerance don't always agree. (See http://www.research1st.com/2011/06/19/the-outs-and-ins-of-oi/ -- "When you round up experts who study the autonomic nervous system ... they have trouble agreeing on the names and definitions for the various types of OI.") This is a very complex area.

Sharing anecdotes is one way that I connect with others on the forum. It's meant as an additional form of information, something to consider in addition to the existing research. I hope that makes more sense!

If I had to guess, I would say that doctors see the POTS and make a decision for one reason or another not to run a TTT.

That sounds like a reasonable possibility.

So, perhaps, and again just guessing here, the doctors feel that it is all OI , so the treatment plan would be similar, and feel there is no need to run a test when the increase in heart rate is enough to confirm POTS. ...
What I am saying is that my guess is many of the POTS patients probably have NMH, but have not been tested for one reason or another.

Again, that seems like a reasonable assumption.

But what about patients like me who do have NMH but do not faint AND do not have any POTS? How would doctors find these OI patients if they only measure heart rate?

In my own case, I have never fainted except during a TTT (first one in 1995, second one in 2003). And I did not present with POTS at all when I was first ill. My heart rate went up a little, but not enough to have POTS, either at the cardiologist appointment before the TTT (where he took my BP while lying down, sitting, standing) or during the TTT.

As an aside, after 20+ years of this illness I think I now have both NMH and POTS. My cardiologist mentioned it at my last appointment. And I took some blood pressure readings a while back (1-2 years ago). I wanted to see what my BP does in the morning before taking my drugs. So, I took readings while standing, first thing in the morning, for about 2 weeks in a row. I was shocked to see my heart rate gets as high as 150 bpm just by standing long enough to take my BP. That takes the BP monitor maybe 2 minutes. As I said, I wasn't measuring to find out my heart rate. But, of course, the BP monitor shows both HR and BP. It was an accident that I found out about this.

At any rate, if doctors are relying on POTS, or fainting spells, to identify patients who have some kind of Orthostatic Intolerance then they are missing patients like me. I have no idea how many patients that might be. Maybe it's a very small number, who knows?