POTS vs NMH in people with ME/CFS

[ahimsa]

I have seen lots of folks posting about their problems with POTS (postural orthostatic tachycardia syndrome). I rarely see folks posting about NMH (neurally mediated hypotension). I'm starting to get curious - is this just a coincidence or is there some reason behind it?

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).

So, why do more PWCs talk about POTS on these forums? Is POTS a lot more common than NMH in people with ME/CFS? Or are people just using POTS as a "catch all" phrase for any symptom caused by orthostatic intolerance?

Or maybe POTS is an easier diagnosis to get? I believe that POTS can be diagnosed after having the patient stand still for 5-10 minutes and measuring the increase in heart rate. Whereas a diagnosis of NMH pretty much requires a tilt table test because the drop in blood pressure is delayed. It may take 35-40 minutes before the BP drop happens (although symptoms may start within 4-5 minutes of standing). I've had two tilt table tests and the severe, sudden BP drop happened after about 20 minutes on the first test and after about 30 minutes on the second test (no isoproteronol or other drug was used to induce the BP drop, just standing still on the tilt table was enough).

Anyway, I'm just wondering why there are more discussions about POTS than NMH. I do remember at least one person who has posted about NMH but not a whole lot of folks have mentioned it on these forums.

Anyone out there want to hazard a guess?

 

[glenp]

dysautonomia

There is a thread here on dysautonomia which includes many variences of OI

 

[ahimsa]

There is a thread here on dysautonomia which includes many variences of OI

I understand that Orthostatic Intolerance is a form of dysautonomia and that this topic has been discussed on these forums.

What I wonder is why so many people mention POTS specifically? Is the POTS diagnosis more common than NMH? Or is this just a coincidence?

 

[Sushi]

I have seen lots of folks posting about their problems with POTS (postural orthostatic tachycardia syndrome). I rarely see folks posting about NMH (neurally mediated hypotension). I'm starting to get curious - is this just a coincidence or is there some reason behind it?

Or maybe POTS is an easier diagnosis to get? ...a diagnosis of NMH pretty much requires a tilt table test because the drop in blood pressure is delayed. It may take 35-40 minutes before the BP drop happens (although symptoms may start within 4-5 minutes of standing). I've had two tilt table tests and the severe, sudden BP drop happened after about 20 minutes on the first test and after about 30 minutes on the second test (no isoproteronol or other drug was used to induce the BP drop, just standing still on the tilt table was enough).

Hi Ahimsa,

I also have NMH and not POTS. Possibly patients don't realize so easily what is wrong as the spike in HR that POTS brings is more easily noticed. The tachycardia may get their and their doctors' attention more readily. But falling on the floor (without your HR rising!) also is an attention getter.

I was diagnosed with a "non-drugged" tilt as well. My super BP plunge only happened after about 25 minutes, though my vitals oscillated a lot before that.

Just a guess
Sushi

 

[glenp]

Agree with Sushi

Hi Ahimsa,

I also have NMH and not POTS. Possibly patients don't realize so easily what is wrong as the spike in HR that POTS brings is more easily noticed. The tachycardia may get their and their doctors' attention more readily. But falling on the floor (without your HR rising!) also is an attention getter.

I was diagnosed with a "non-drugged" tilt as well. My super BP plunge only happened after about 25 minutes, though my vitals oscillated a lot before that.

Just a guess
Sushi

POTS is much easier to diagnose by a patient. I think many are misdiagnosed as I was in having panic attacks. So many think they are having panic attacks when in fact it is POTS

 

[Valentijn]

I think I've had NMH for most of my life, albeit usually milder. But in the past month I've had POTS to the extent that the NMH was getting very overshadowed

 

[glenp]

I think that most people do not monitor their bp and hr in various positions and time intervals, so unless they did that, they wouldn't know. Most physicians will not take the time to do it although some suggest it to their patients.

 

[taniaaust1]

I only talk about POTS as I dont have NMH and just have POTS.

I dont know the rate of NMH in ME/CFS but the rate of POTS in us is extremely high. One of the big societies once said they found that over 90% (it may of been 95%) of us have POTS. So you could say that almost all of us have POTS.

Or are people just using POTS as a "catch all" phrase for any symptom caused by orthostatic intolerance?

Im not aware of it being used as a catch all phase here and do think most at this site know that POTS is to actually do with heart rate and that orthostatic intolerance isnt necessarily POTS (thou most of time with us it is thou of cause for many too BP is playing a part).

 

[TinyT]

I think you are right that POTS is easier to diagnosed than NMH. As the HR changes (>30bpm or over 120bpm) must occur within 10mins of standing or head up tilt for POTS diagnosis. You are right that NMH needs a tilt table test of 30-45mins. My crappy local tilt test was only drug free for 20mins and then they gave me nitro.

So I fit the criteria for POTS, but I think I need a longer test to check for NMH.

I'll be seeing an autonomic specialist in the next city and getting ANS tests done next month anyhow.

I think in the general population (not ME/CFS) POTS is more common than NMH.

 

[ahimsa]

Thanks for all the replies, folks!

As several folks have commented, POTS is easier to diagnose than NMH (no tilt table required), so that's one reason why more folks have that diagnosis. POTS might also be more common than NMH but unless more folks get tested (using the right protocol and interpreted by competent doctors!) I guess we'll never know.

Sushi wrote:

The tachycardia may get their and their doctors' attention more readily. But falling on the floor (without your HR rising!) also is an attention getter.

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?

From what I've remember about OI in PWCs, I thought that the reason most doctors don't look for NMH in ME/CFS patients (or didn't back in the 1990s) is because most patients don't faint. I thought that was one reason the Johns Hopkins research in 1995 was so ground breaking - testing PWCs, who generally don't faint, for a problem (NMH) that makes most folks faint. And that's why they started using the phrase Neurally Mediated Hypotension instead of previous names like NeuroCardiogenic Syncope or Vasodepressor Syncope. Syncope means faint and these folks didn't faint, just had a severe drop in blood pressure along with the associated presyncopal (before fainting) symptoms. But maybe I'm wrong about that?

I can't speak for others but I have never fainted other than on the tilt table test.

My story of how I got a tilt table test (I'll try to keep it short) is that I had an old friend from high school who had ME/CFS. She got into one of the original Hopkins research studies about NMH. She called me and urged me to apply for the study. Unfortunately, the study was full by the time I applied. But 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 a tilt table test. I found a cardiologist who was open minded enough to order a tilt table test (this was before the Hopkins study was even published) and the rest is history.

But during my first 5-6 years of illness (1990-1995), despite all the doctors I visited, none of them ever thought to check me for dropping blood pressure. I don't blame them since there was no research showing a connection between ME/CFS and orthostatic intolerance. However, I do blame the doctors now, 16 years later who ignore symptoms of orthostatic intolerance in PWCs. There's no excuse.

There is so much evidence showing that a large percentage of folks with ME/CFS have some type of Orthostatic Intolerance (POTS or NMH), and yet many patients still can't get their doctors to even consider this as a possible diagnosis. Patients can't get testing (whether for diagnosis or for disability insurance), can't even try different drug treatments for OI to see whether it might help them, and I find this very sad. Something is very wrong with this picture.

okay, end of rant!!!!

 

[TinyT]

Thanks for all the replies, folks!

As several folks have commented, POTS is easier to diagnose than NMH (no tilt table required), so that's one reason why more folks have that diagnosis. POTS might also be more common than NMH but unless more folks get tested (using the right protocol and interpreted by competent doctors!) I guess we'll never know.

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?

From what I've remember about OI in PWCs, I thought that the reason most doctors don't look for NMH in ME/CFS patients (or didn't back in the 1990s) is because most patients don't faint. I thought that was one reason the Johns Hopkins research in 1995 was so ground breaking - testing PWCs, who generally don't faint, for a problem (NMH) that makes most folks faint. And that's why they started using the phrase Neurally Mediated Hypotension instead of previous names like NeuroCardiogenic Syncope or Vasodepressor Syncope. Syncope means faint and these folks didn't faint, just had a severe drop in blood pressure along with the associated presyncopal (before fainting) symptoms. But maybe I'm wrong about that?

I can't speak for others but I have never fainted other than on the tilt table test.

My story of how I got a tilt table test (I'll try to keep it short) is that I had an old friend from high school who had ME/CFS. She got into one of the original Hopkins research studies about NMH. She called me and urged me to apply for the study. Unfortunately, the study was full by the time I applied. But 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 a tilt table test. I found a cardiologist who was open minded enough to order a tilt table test (this was before the Hopkins study was even published) and the rest is history.

But during my first 5-6 years of illness (1990-1995), despite all the doctors I visited, none of them ever thought to check me for dropping blood pressure. I don't blame them since there was no research showing a connection between ME/CFS and orthostatic intolerance. However, I do blame the doctors now, 16 years later who ignore symptoms of orthostatic intolerance in PWCs. There's no excuse.

There is so much evidence showing that a large percentage of folks with ME/CFS have some type of Orthostatic Intolerance (POTS or NMH), and yet many patients still can't get their doctors to even consider this as a possible diagnosis. Patients can't get testing (whether for diagnosis or for disability insurance), can't even try different drug treatments for OI to see whether it might help them, and I find this very sad. Something is very wrong with this picture.

okay, end of rant!!!!

Thats really interesting info ahimsa re NMH.

I've never really fainted (not since I was a teenager and I'm mid 20s now), but I have had some wicked bad pre-syncope episodes (pre-fainting). I get a lot of symptoms, nausea, dizzy/lightheaded, grey vision, dull hearing, hot/cold & sweaty etc so I can usually get in a lying or sitting position with my head between my knees quickly enough. Its still pretty unpleasant though. Sometimes when I'm having a bad day, all it takes is 5mins of standing

Its taken me almost a year now, since having POTS symptoms, to get access to proper autonomic testing and a specialist in POTS/OI.

 

[Sushi]

Thanks for all the replies, folks!

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?

Hi Ahimsa,

Sorry, I should clarify--I don't faint either, I go into pre-syncope. What I should have said was drop to the floor as in very quickly sit down on the floor or lie down when I feel my BP falling. I have fainted a couple of times in my life, but not for many years. However, when your vision goes black you need to hit the floor fast before you fall over!

Best wishes,
Sushi

 

[ahimsa]

Sorry, I should clarify--I don't faint either, I go into pre-syncope. What I should have said was drop to the floor as in very quickly sit down on the floor or lie down when I feel my BP falling.

Thanks for the clarification - that makes sense! I remember all those times that I got the familiar "I have to sit down NOW!" feeling when there was no chair or bench in sight. At that point, as you said, the only option is to quickly drop to the floor, the sidewalk, or wherever so that you can sit down. People did give me a lot of rather strange looks as I recall. But, looking on the bright side, a little embarrassment is better than fainting.

After my diagnosis I bought a lightweight, portable seat (folds into a cane). I keep this with me whenever I go out so that I can sit down when needed. Beats sitting on the floor!

 

[sandgroper]

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.

 

[Questus]

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

 

[ramakentesh]

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.

 

[alex3619]

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.

On passing out I have done so hundreds of times. No, it doesn't get more attention. Doctors ignore that too. Fortunately the worst damage I have ever taken is a few bruises, though a few times my head came close to the edges of furniture as I was falling (passing out on the way down). Stairs are the biggest issue. I pass out going up the stairs. Because of this I collapse into the rise of the stairwell, which is actually a shorter fall than passing out on flat ground. If I ever fall backwards from one of these I could fall down the entire flight of stairs.

In my tilt table test (drug assisted) my bp crashed to zero. I was technically dead for a minute or so with no heart beat.

Bye, Alex

 

[Questus]

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.

This makes sense. My resting BP is low, but rises after standing. Attenol caused my resting BP to go dangerously low. (Know I read about this happening to others, before I realized it was happening to me.)

Attenol can also cause an increase in CFS symptoms according to http://www.fightdysautonomia.org/Default.aspx?tabid=61

I feel certain that Dr. Klimas was correct in her diagnosis of POTS. (I tape record all my sessions with her, so later I can understand precisely what she said, and not depend on notes.)

In researching dysautotonomia Ive found there are far more syndromes that are caused by a dysfunctioning autonomic nervous system than I had imagined, and they occur for many different reasons. Some are heritable, some caused by pregnancy, some have specific ethnic origins, and some have a viral precursor.

Am also learning there can be an overlap, and people can have more than one syndrome or disorder.

I have numbness in my feet. The more I push myself walking...The worse it gets. Havent read about this with POTS, but feel certain its an autonomic issue. Does anyone else have this issue with their feet?

In researching I found a BB where many people have a form of dysautonomia called IST....Involves both the heart and the sinus. http://heartdisease.about.com/cs/arrhythmias/a/IST.htm

One woman mentioned a cardiologist near me who treats her IST, and I made an appt. to see him in June. Am hoping hell understand other neurally mediated heart issues as well, such as POTS. Its a shot in the dark, but most doctors are with CFS and related issues. Fingers crossed.

Also, for those with POTS, this is a must read. Dr. Levine wants to rename POTS grinch syndrome, and states Please note that patients with POTS do NOT have autonomic failure. The POTS Controversy, Continued - Dr. Levine Responds.

http://heartdisease.about.com/b/2012/03/08/the-pots-controversy-continued-dr-levine-responds.htm

 

[Sallysblooms]

Questus, the feet numbness sound like Peripheral Neuropathy. Are you taking Alpha Lipoic Acid, Benfotiamine and other antioxidents? My feet are almost well now. POTS is often caused by autonomic Neuropathy. You need to find the cause. I have cut my sugar and carbs down and even though my blood glucose tests are always good, my doctor and I think this is a problem. Spikes of blood sugar are bad and everyone gets them after eating, especially rice, etc. So testing after eating and getting those supplements can help. Sure helped me. I am improving quickly.

Getting the nerves themselves to heal takes care of the heart/chest pain, and the heart rate goes down because the blood vessels adn muscles work to pump the blood when the nerves heal.

This is something you can try if your doctor understands how to heal the nerves with supplements/foods.

Dr. Levine is not a doctor that most of us POTSies enjoy hearing about. That Grinch sydrome nonsense has been hurtful.

 

[Questus]

Sally, am so happy for you that you're doing better! God Speed.

I discovered something after posting this morning called Neuropathic POTS. Here's a Medscape description. Very disturbing to me. http://www.medscape.com/viewarticle/705183_6

Has an autoimmune relationship, (of which I have several), as well as increased mast cell activation. (Which has been an ongoing issue for me for decades and which both Cheney and Klimas addressed in prescribing treatment for me). Don't get me started about mast cells and CFS. Lots of research in this area, and it will be a big topic in the years to come. (Not my opinion...what I've been told.)

Sally, I REALLY LIKE hearing how well you're doing!. Makes me feel hopeful. Am very happy for you! Keep doing what you're doing. (I've read about your supplementation, and may PM you about some of it.)

Right now I just feel lousy after reading about Neuropathic POTS.

Pretty much explains everything I've been trying to understand...The extreme heaviness and pain in my thighs, numbness in my feet...(Compression socks help with calve pain if I remember to put them on as soon as I wake up.)

My plan is to speak with Dr. Klimas asap, and move onward and hopefully upward.

Thank's Sally for your encouragement. I know nerves can regrow and that's a good thing.

Think I was the first to bring up "Grinch" commentary on the POTS PR bb many months ago, as I was very insulted by it. Levine though is not the only doctor using that term. I think what's important is Levine's trials using POTS patients and exercise therapy. He's a significant player ( and dedicated to his agenda), and what he says is of concern. Particularly that 'POTS is NOT a dysfunction of the autonomic nervous system.' Just realized there are a lot of youtube videos from some people that have participated in his studies. No intention of watching, but whatever.

Has anyone had a diagnosis of Neuropathic POTS or know of anyone who has?