POTS vs NMH in people with ME/CFS

[Sharon Lang]

Umm, I think there may be some confusion

I never meant to imply you were second guessing

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?

I think we are saying the same thing here. I was just saying that I had not responded to the original question, but there was no research on it that I could find.

I came to my cardiologist with an abstract and a history of fainting. He really did not want to run the ttt, as I described earlier, but did in 1995. He ran a second with me on florninef and I still fainted in a short period of time.

So, back to our question, my guess is that a lot of doctor do not order the ttt.

 

[Sharon Lang]

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?


Totally agree.

 

[SickOfSickness]

I agree, I see lots of POTS discussion and not much for NMH or other OI.

I also agree about diagnosis. I saw an autonomic specialist and had a TTT and even then, I don't know if I was properly considered. I cannot remember but I believe I was kept standing for 30 minutes, and above it was said the symptoms can be delayed 45 mins in NMH. I was not given any drugs before, during, or after, which seems to be common practice. I didn't faint. He said I have do abnormalities but he didn't label it other than OI which I knew already.

I don't know if I have NMH or something else. I do that thing where sometimes I feel like I need to bend my legs so I get more blood to my head, and get down by the floor so I don't have far to fall if I fall, similar to what some of you described above with NMH. I wish I had a better diagnosis like NMH, but as someone said above, specialists have disagreements about the types too. If money was no problem, I would probably get another TTT and get farther with diagnosis, but I don't know if it would help much, it would just be nicer to know.

 

[SickOfSickness]

I think in other conditions, my TTT may have led to a specific diagnosis. I don't know the reasons why but sometimes I am a lot less capable of standing than other times. If only a test were done during one of those hours or days.

Also, doctors don't consider it important when they see OI or OH in my list of diagnoses. I think they would consider it important if they saw NMH or POTS or if they saw regular fainting was a problem. (Someone above said the doctors didn't even care about fainting! so I could be wrong about that but it seems like if they see lightheadedness or OH they ask me if I faint and dismiss it all if I say no.)

IMO, a lot of docs would dismiss POTS or NMH because it wasn't taught to them, unless they are young doctors. They would see the words hypotension, orthostatic, tachycardia and think it is just a symptom that they can't help with.

 

[Sharon Lang]

I think we are saying the same thing here. I was just saying that I had not responded to the original question, because I could find no research.


So, back to our question, my guess is that a lot of doctor do not order the ttt.

I did nOt mean to offend you, and I was not implying you we're ignoring research. I was just ex,aiming why I had not taken a guess.


You can not get an nmh diagnosis without ttt. If the doctor does not order it, the patient does not push for it, then there is probably a population on here taut has it, but does not know.

This is what led me to this conclusion... Pots patients go in to develop nmh in some cases...

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.

 

[ahimsa]

I did not mean to offend you, and I was not implying you we're ignoring research. I was just examining why I had not taken a guess.

That's okay, I was not offended! What you said was fine. I was just being a bit flippant and silly when I joked about research vs guessing.

I think one source of the confusion (e.g., you posted detailed info describing NMH and POTS but that was not what I was asking for) was that I entered a confusing title. Anyone seeing a thread titled "POTS vs NMH" might naturally think that I was asking someone to explain the differences to me. But I was not.

My questions are more complex (and probably can't be answered with current research) than a simple "what is POTS" or "what is NMH". Here's a second attempt to list some of my questions. I hope it is more clear:

1) Do people on PR talk more about POTS than NMH? It seems that way but I have not done any formal survey or counting posts.

2) Do people sometimes use the term POTS as an umbrella term instead of the term OI? ( I think one researcher does this but can't remember which one. I know that Dr. Stewart uses the term COI - Chronic Orthostatic Intolerance - http://emedicine.medscape.com/article/902155-overview )

3) Is POTS more common in ME/CFS or just easier to diagnose? (my guess is the latter)

4) Is NMH diagnosis missed a lot because it is harder to diagnose? (my guess is yes)

The point is that my questions are not as simple as "what is POTS" and "what is NMH." I hope that makes more sense!

So, I should have used a different thread title. Anyway, I think we're on the same page now.

I'd love to see any links to new research you might find! So far, I think I've seen all the information that you posted (e.g., the Dr. Rowe webinar, the slides that go with it, and the Johns Hopkins patient handout in the PDF).

I hope you won't mind me just making a quick comment. I have a little trouble reading your messages and following your quotes. Are you able to edit your messages? If so, do you see the tags for quotes?

The text for a quote should go in between the "open quote" and "close quote" tags. They open and close tags should look like this [ quote ] and [ / quote ] -- but without any spaces between the brackets, slash and words. Does that make sense?

Again, thanks so much for sharing all the information you have posted! And no worries, no offense taken! Even though I was asking different questions, unrelated to the answers you were posting, I really appreciate you taking the time to post all that information and trying to help.

HUGS!

 

[ahimsa]

You can not get an NMH diagnosis without TTT. If the doctor does not order it, the patient does not push for it, then there is probably a population on here that has it, but does not know.

Yes, I agree that it's difficult to diagnose NMH without a TTT. That's why I put this in my first message:

II 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).

One could get a good guess that it's NMH if the symptoms matched up very closely (mine did) but it would be best to confirm it with a TTT. So it's definitely harder to diagnose.

By the way, I completely understand those who don't want to bother with a TTT. I would not push anyone to get a TTT (they're not fun) but if the patient needs documentation for disability benefits then this test can be very helpful.

 

[ahimsa]

I don't know the reasons why but sometimes I am a lot less capable of standing than other times. If only a test were done during one of those hours or days.

My ability to stand is also variable. It depends on the temperature (colder is better), whether I've eaten (empty stomach is better), etc. But even so both of my tilt table tests were exactly the same.

I think the TTT can catch various types of autonomic problems in most patients IF the test is done correctly AND it is interpreted by someone who knows what to look for. My case was easy to diagnose because I blacked out in phase one (after either 20 or 30 minutes) on both tests, no drugs administered at all. No ambiguity.

However, my understanding is that cardiac electrophysiologists who know what they are doing can read the results of patients who do not pass out and diagnose them with various problems. I don't know all the details but I've read in many different places that passing out is not a requirement for an abnormal tilt table test result. That much my poor brain can remember, at least!

Also, doctors don't consider it important when they see OI or OH in my list of diagnoses.
...
They would see the words hypotension, orthostatic, tachycardia and think it is just a symptom that they can't help with.

I find that many doctors don't even know what OI is. Two different specialists asked me, "What's that?" when I told them my diagnosis. I handed them a copy of the Johns Hopkins patient handout. They handed it back to me without reading it, just glanced at it. I've pretty much give up on trying to educate doctors on a one-on-one basis. If they won't read information from Johns Hopkins, based on research that was first published in 1995, and reconfirmed since then many times, then I give up.

And as you said, OH (Orthostatic Hypotension) is really just a symptom. So, most doctors look at that the way they look at the word fatigue. It does not describe at all what is causing the problem or how serious it might be.

I wish you could find some more answers. This is all so very complex and difficult to treat.

 

[ahimsa]

I also agree about diagnosis. I saw an autonomic specialist and had a TTT and even then, I don't know if I was properly considered. I cannot remember but I believe I was kept standing for 30 minutes, and above it was said the symptoms can be delayed 45 mins in NMH. I was not given any drugs before, during, or after, which seems to be common practice. I didn't faint. He said I have do abnormalities but he didn't label it other than OI which I knew already.

I missed this message -- responded to your second message first.

You didn't have multiple phases in the TTT? I know that clinics have different protocols for angle of tilt and length of time in phase one. But I thought all people who did the TTT had at least one more phase where they inject the patient with some form of adrenaline (e.g., isoproteronol). That's interesting that they cut phase one short at 30 minutes AND also did not have a second phase.

If money was no problem, I would probably get another TTT and get farther with diagnosis, but I don't know if it would help much, it would just be nicer to know.

If you don't need it as part of proof for disability benefits then another TTT might not help much unless the doctor doing it knows which subsets of patients are likely to respond to various treatments for OI. So they could match patients to treatments that might have a better success rate instead of just the "shotgun" approach of trying all different OI treatments.

Otherwise the best thing, I think, is to try to find a doctor who will work with you and try different treatments (not just RX drugs but everything - lifestyle changes, supplements like salt and potassium, etc.) until you find some things that help you reduce your symptomes. Even some patients with very clear cut results on the TTT don't get much help from Rx treatments -- either side effects get in the way or they just don't work. And then other patients who have never had a TTT have been helped by looking at their symptoms and then treating them with different OI treatments.

I hope you find something that helps.

 

[Sushi]

ahimsa

My doc, an autonomic specialist who himself has POTS, told me to stop the test before I passed out. He did not want us to pass out cause of the trauma of it (which he knew personally). He said he could get plenty of data from pre-syncope.

I tested NMS.

Sushi

 

[ahimsa]

My doc, an autonomic specialist who himself has POTS, told me to stop the test before I passed out. He did not want us to pass out cause of the trauma of it (which he knew personally). He said he could get plenty of data from pre-syncope.

I tested NMS.

What a smart doctor. You were very lucky! I wish all patients had such doctors.

Thanks for confirming that a doctor who knows what he/she is doing can get all the data that they need without the patient passing out. I was pretty sure about that but it's sometimes hard to find a reference quickly.

My first TTT was horrible. It took me a week to recover. I still can't believe that I drove myself home afterwards. They gave me a liter of IV saline after the test, which helped. And I rested in the waiting room for about an hour after the test. But I did drive myself home. No one told me how bad it was going to be.

My second TTT was by the same cardiologist (not an autonomic specialist). Since he had seen me on the first test, and knew what was coming, he said that he tried to stop the test as soon as the response happened and before I passed out. But it happened so fast that I still blacked out a bit before they got me flat. My recovery from that second TTT was shorter.

 

[Sushi]

What a smart doctor. You were very lucky! I wish all patients had such doctors.

Thanks for confirming that a doctor who knows what he/she is doing can get all the data that they need without the patient passing out. I was pretty sure about that but it's sometimes hard to find a reference quickly.

My first TTT was horrible. It took me a week to recover. I still can't believe that I drove myself home afterwards. They gave me a liter of IV saline after the test, which helped. And I rested in the waiting room for about an hour after the test. But I did drive myself home. No one told me how bad it was going to be.

My second TTT was by the same cardiologist (not an autonomic specialist). Since he had seen me on the first test, and knew what was coming, he said that he tried to stop the test as soon as the response happened and before I passed out. But it happened so fast that I still blacked out a bit before they got me flat. My recovery from that second TTT was shorter.

Yes, smart doctor who also lived in our skin!

He actually said that as soon as you start feeling really bad, stop the test. If you are feeling that way, the data will be there. He also did not use drugs for the test. His report on the results was about 5 pages! Correlated the electrocardiogram with the BP etc, second by second and continued monitoring for about 10 minutes after a stopped the test, while I was lying there recovering.

Sushi

 

[ahimsa]

He actually said that as soon as you start feeling really bad, stop the test. If you are feeling that way, the data will be there. He also did not use drugs for the test. His report on the results was about 5 pages! Correlated the electrocardiogram with the BP etc, second by second and continued monitoring for about 10 minutes after a stopped the test, while I was lying there recovering.

Can I ask what year this was? And what hospital/clinic?

Thanks!

 

[Sharon Lang]

ahimsa

My doc, an autonomic specialist who himself has POTS, told me to stop the test before I passed out. He did not want us to pass out cause of the trauma of it (which he knew personally). He said he could get plenty of data from pre-syncope.

I tested NMS.

Sushi

Wow...fabulous.

 

[Sushi]

Let's see, about 2006?

It was West Florida Hospital in Pensacola, but they didn't set up the test, the Dr. did. He is listed on the POTS place site: www.POTSplace.com .

Dr. Charles Randy Thompson
6706 N.9th Ave. Suite A-3
Pensacola, FL 32504
850-476-8200
http://autonomicdisorderscenter.com

Mainly treats OI, POTS & NCS, although he does see patients with other autonomic conditions. Will treat adolescent children and older.

As a sufferer of OI/POTS, Dr. Thompson is a board certified specialist who had to give up Internal Medicine because of this condition. He returned to the University of Alabama School of Medicine to study under Dr. Cecil Coghlan. He has been back in practice on a limited basis for several years, treating only those with autonomic problems.

 

[Sharon Lang]

That's okay, I was not offended! What you said was fine. I was just being a bit flippant and silly when I joked about research vs guessing.

I think one source of the confusion (e.g., you posted detailed info describing NMH and POTS but that was not what I was asking for) was that I entered a confusing title. Anyone seeing a thread titled "POTS vs NMH" might naturally think that I was asking someone to explain the differences to me. But I was not.

My questions are more complex (and probably can't be answered with current research) than a simple "what is POTS" or "what is NMH". Here's a second attempt to list some of my questions. I hope it is more clear:

1) Do people on PR talk more about POTS than NMH? It seems that way but I have not done any formal survey or counting posts.

2) Do people sometimes use the term POTS as an umbrella term instead of the term OI? ( I think one researcher does this but can't remember which one. I know that Dr. Stewart uses the term COI - Chronic Orthostatic Intolerance - http://emedicine.medscape.com/article/902155-overview )

3) Is POTS more common in ME/CFS or just easier to diagnose? (my guess is the latter)

4) Is NMH diagnosis missed a lot because it is harder to diagnose? (my guess is yes)

The point is that my questions are not as simple as "what is POTS" and "what is NMH." I hope that makes more sense!

So, I should have used a different thread title. Anyway, I think we're on the same page now.

I'd love to see any links to new research you might find! So far, I think I've seen all the information that you posted (e.g., the Dr. Rowe webinar, the slides that go with it, and the Johns Hopkins patient handout in the PDF).

I hope you won't mind me just making a quick comment. I have a little trouble reading your messages and following your quotes. Are you able to edit your messages? If so, do you see the tags for quotes?

The text for a quote should go in between the "open quote" and "close quote" tags. They open and close tags should look like this [ quote ] and [ / quote ] -- but without any spaces between the brackets, slash and words. Does that make sense?

Again, thanks so much for sharing all the information you have posted! And no worries, no offense taken! Even though I was asking different questions, unrelated to the answers you were posting, I really appreciate you taking the time to post all that information and trying to help.

HUGS!

This is extremely condescending. I am highly educated and highly intelligent, just extremely ill.

 

[SickOfSickness]

I think my specialist was like that too, smart enough to not want the patients to pass out. Mine had 2 stages, the first lying down, the second, almost standing. But I think the second stage should have gone 15 more minutes. At the time I was uncomfortable and it felt like much too long.

IIRC, I read some people have 2 or 3 TTTs because the doctor didn't get enough significant data to diagnose. Normally if the doctor is looking for the fainting and it doesn't happen, they try again another day. I think some doctors know that the symptoms vary from day to day, or time of day and they must catch them. They can't assume the patient has no POTS because of one TTT without the fainting. Given that the patient is having all the symptoms of POTS in their life.

 

[Sea]

This is extremely condescending. I am highly educated and highly intelligent, just extremely ill.

I don't know how you find Ahimsa's post offensive Sharon. I thought he/she did a great job of clarifying what they were hoping to get from this thread and acknowledging that perhaps it wasn't as clear as it could have been at the outset.

The request to properly display quotes along with an explanation of how to do it is not an insult to your intelligence.

The cognitive disabilities that are part of this illness affect both our ability to explain and our ability to comprehend. It would be good if you could read what others write with that in mind

 

[Sharon Lang]

I don't know how you find Ahimsa's post offensive Sharon. I thought he/she did a great job of clarifying what they were hoping to get from this thread and acknowledging that perhaps it wasn't as clear as it could have been at the outset.

The request to properly display quotes along with an explanation of how to do it is not an insult to your intelligence.

The cognitive disabilities that are part of this illness affect both our ability to explain and our ability to comprehend. It would be good if you could read what others write with that in mind

It is not what was said but the way it was said. I do not care to be talked to like I did not finish elementary school.


The text for a quote should go in between the "open quote" and "close quote" tags. They open and close tags should look like this [ quote ] and [ / quote ] -- but without any spaces between the brackets, slash and words. Does that make sense?

 

[Sharon Lang]

This is extremely condescending. I am highly educated and highly intelligent, just extremely ill.

No one is answering your question because there is not any data on it.