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

[Tired of being sick]

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.

I addressed this misunderstanding in POST#51..
which was::
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........

PS You have low blood volume the Achilles-heel of CFS/ME...........

Which is positive on helping my theory and reasoning of why I created this thread..

Low blood volume is grossly over looked and is a silent slow death killer..

 

[Tired of being sick]

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.

I do have the doctor who diagnosed me but he will not give me the only type of treatment I need and will work which is
2 liters of saline IV every 48 hours(indefinitely)to give me somewhat normal
blood volume..

Instead he prescribed me Fludrocortisone claiming it will work as good as the IV..

Well I'm on it and now and quit because it did basically nothing for my blood volume but raise my BP
and gave me 24/7 migraines...

 

[ahimsa]

@Tired of being sick - Do you have a link to a research study or web page that defines the diagnostic criteria that you are using for "Neurally Mediated POTS"?

I can't find any diagnostic criteria for that phrase when I do a search. In fact, I can't find many pages using that phrase at all. Is it a term from a very recent research study? Or a term that your doctor used?

Thanks.

 

[Tired of being sick]

Or a term that your doctor used?

Yes me and my cardiologist/physiologist discussed this in great length..

He is a graduate from Harvard and is an assistant professor at a prestigious school of medicine on the east coast.

He is young which is great because he has not developed a narcissistic behavior pattern yet..

In simpler words he is open minded and treats his patients with great respect, especially his elders..

 

[Tired of being sick]

POTS has been around forever

However it is newly discovered so there are a lot of jump to conclusions out there..

So the info on it should be taken with a grain of salt..

The experts on this condition are the patients who can find a doctor who will listen..

Like I said many times before,you can only be an expert on something if you have experienced it
while crossing the T's and dotting the I's yourself then finding a doctor who will listen to your cries..

 

[Sushi]

The experts on this condition are the patients who can find a doctor who will listen..

One of the best doctors I have seen was an autonomic specialist who himself had POTS.

Sushi

 

[ahimsa]

POTS has been around forever

Yes, I first learned about POTS in very general terms back in 1995 when I had my first tilt table test. I knew a patient who was in the 1995 Johns Hopkins research study showing that patients with ME/CFS often had either POTS or NMH. So I know that the diagnostic lablel of POTS has been around for a while. But I didn't learn much about the different types of POTS (esp. since my tests showed NMH without POTS at the time).

I asked about "Neurally Mediated POTS" because that phrase was new to me and I couldn't find any search results for that phrase.

However, I think I've seen the term Neuropathic POTS somewhere?

After a quick search I found http://www.medscape.com/viewarticle/705183_6 (describes three types of POTS, also found on NIH web site here - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3904426/ ) and http://europace.oxfordjournals.org/content/11/1/18 (describes several types of POTS which I think may overlap? I have not read the whole thing yet)

So, is "Neuropathic POTS" the same thing as "Neurally Mediated POTS"?

Darn it, why do doctors have to use these obscure terms with multiple synonyms? Just kidding. I know that any specialty occupation uses jargon that's hard for the lay person to understand.

 

[Tired of being sick]

POTS has been around forever

However it is newly discovered so there are a lot of jump to conclusions out there..

I hate to say this but POTS research/treatment is not profitable enough for the fact it is uncommon/rare, meaning there are not enough people who have it. So for that reason solely, there is little or no interests for doctors to strive for a profitless money pit.....

It is only profitable if only a handful of doctors spread across the US become "POTS specialists"..

Which is exactly the reality of what we are witnessing in this present day.

 

[Sushi]

@Tired of being sick

I guess you've gone through the autonomic research at Vanderbilt? They have done some interesting work with POTS.

Sushi

 

[Denise]

@Tired of being sick

I guess you've gone through the autonomic research at Vanderbilt? They have done some interesting work with POTS.

Sushi

@Sushi - You are quite right. They have done interesting work. And it looks as thought they (and others) will be able to continue doing interesting research
http://news.vanderbilt.edu/2014/11/autonomic-diseases-consortium-lands-renewed-federal-funding/

 

[Tired of being sick]

I guess you've gone through the autonomic research at Vanderbilt?

This is exactly my point of

It is only profitable for only a handful of doctors spread across the US to become "POTS specialists"..

Which is exactly the reality of what we are witnessing in this present day.

 

[Hip]

@Tired of being sick
I have been unable to find any medical literature that says you can diagnose the subtypes of POTS using blood pressure measurements, as you described in your earlier post here.

Can I ask where did you see this diagnostic method?

 

[Tired of being sick]

There were no specific or one site that I have read this info......

BUT me and my cardiologist/physiologist discussed this in great length..

And he confirmed my understanding of POTS and forms..

He is a graduate from Harvard and is an assistant professor at a prestigious school of medicine on the east coast.

He is young which is great because he has not developed a narcissistic behavior pattern yet..

In simpler words he is open minded and treats his patients with great respect, especially his elders..


The fact that I had all three fluctuations of BP during my tilt table test which were below 90/60=neurally mediated form of POTS,above 140/90= Hyperadrenergic form of POTS
and in between both extremes=unaffected BP form of POTS..
THIS
Means that the only method on EARTH that can be used to treat my POTS is Saline IV drip every 48 hours(indefinitely)

All medications used to treat POTS affect BP and effecting my BP will make the condition much much worse.......

 

[Tired of being sick]

IV saline is dripped directly into my veins which then mixes with my LOW VOLUME of BLOOD,making the blood a somewhat normal functional volume which makes all POTS/CFS/ME/Fibromyalgia symptoms disappear including any tachycardia above 100 bpm


LOW BLOOD VOLUME is the cause of all CFS/ME/POTS/Fibromyalgia symptoms..........

 

[Denise]

I believe I have read that many people with POTS do not have a positive tilt table test.
I personally know a number of POTS patients who did not have a positive tilt table test but their supine/seated/standing tests have shown unequivocally that they have POTS.

I am not sure if it plays into what @Tired of being sick is trying to say, but some of these patients have a high resting heart rate (so high that they are automatically termed to have POTS) , usually normal BP but have had episodes of even higher heart rates and plummeting BP.
And IV saline has done little if anything for them.

Satish Raj has said that he believes more forms of POTS will be elucidated and that having more than one form is not atypical.

 

[Research 1st]

Reading people talking about Saline, I can see the treatment for POTS in the USA is superior to the UK.

Not only do you guys have the chance to find what subset of POTS you have, but you can also get something more advanced than Betablockers.

It's interesting, but tantalizing to learn of the huge gap in knowledge the UK has, due to political interference. The USA doesn't have, because you don't have a socialized medical system.

All of my knowledge on POTS has been learnt from forums such as this one, which perhaps is a little scary.

I hope the American researchers can hurry up the 'Autoimmune POTS' findings disclosed a while ago. I would imagine, the usual hurdle, is funding:

http://www.dysautonomiainternational.org/blog/wordpress/new-evidence-of-autoimmunity-in-pots/

 

[Hip]

There were no specific or one site that I have read this info......

BUT me and my cardiologist/physiologist discussed this in great length..

And he confirmed my understanding of POTS and forms..

So basically it seems you just made up the POTS subtypes diagnostic method yourself, and posted at the beginning of this thread in the post here.

Don't you think that this is very irresponsible: to post a diagnostic method that you made up yourself, but presenting it as if it were an established medical technique.

People may come to this thread and read your made up diagnostic method, and mistakenly think that it is the standard way in medicine to determine the POTS subtypes.

People may use your diagnostic method to diagnose themselves with one of the POTS subtypes, and then may even take medication for it, not knowing that your diagnostic method was just one of your own invention.

This is deceptive, and possibly quite dangerous.

 

[Tired of being sick]

Wow.
What part of my Doctor confirmed and diagnosed me with all 3 types did you not understand?
I didn't know you could buy Florenef,beta blockers,ETC over the counter LOl........

The truth is medications will do very little or squat for POTS for the fact they alter BP/pulse which is very aggravating to POTS
Treating the underlying cause is the ONLY way to successfully stop POTS in its tracks..
LOW BLOOD VOLUME
For the one thousandth time,saline IV..........................!!

When you are on medications that target slowing heart rate when you have low blood volume..

This will make one's POTS symptoms and lack of blood to tissue/organs damage progress even faster.

The common sense theory:
The heart rate begins to beat rapidly because it is in crisis mode trying to get blood to limbs and brain.
So if one slows the heart rate down without addressing the real reason why the heart rate is racing
which is lack of blood volume this will prolong the time of getting the blood back to the critical areas
thus making everything worse..
And I have an MRI impression of my brain to prove it that read "CHRONIC ISCHEMIC CHANGE in deep white matter
comparable to a 65 to 70 year old man" and I'm only 48..

Keep trusting doctors bogus research such as best time to diagnose POTS by tilt table test is in the morning..
That is absolutely ludicrous.........
More like, Dr's like to schedule the tests in the morning so they can get a round of golf in by mid afternoon. Now that is much more believable,Lol....

I'm living proof since MY POTS can only be relieved by laying down(my BP and Pulse is textbook perfect after laying down for an hour or so), add eight hours to this and my circulatory system is as normal as its gonna get..

POTS gradually gets worse throughout the day, so the best time to test is as close to the end of the day you can get..The more activity the worse the POTS will get and the worse it gets the longer it will take to get it back under control....................................................

If you like sitting around waiting for doctors to give you answers. Good luck with that!

I'm done arguing. If you don't believe me stay out of the thread...

Not hard to do especially since you think me and my doctor are full of it..

 

[Denise]

@ Tired of being sick - it is good that you have found things that help your POTS symptoms. That's encouraging.

As several people have pointed out, what is helping you (IV saline), has not been of help to them and others.

PR is a public forum, and this is a public thread. Telling people to stay out of the thread if they don't believe or agree seems harsh and discourages open discussion. Each of us needs to learn and openly discussing different views can be a good way to do so.

 

[Hip]

@Tired of being sick
I am not talking about whether the treatments you use help your POTS. By all means, if these treatments helped you, that's great. And I wish you every continued success in this area.


What I am talking about is that you appear to have incorrectly said in this post: that measuring the heart rate rise or fall while standing can be used to work out which POTS subtype you have. This is wrong.

Specifically what you said in your post is this:

If your blood pressure continues to drop below 90/60 during the test you have the Neurally Mediated type of POTS

If your blood pressure continues to rise above 140/90 during the test you have the Hyperadrenergic type of POTS

But the above seems to be medical misinformation. You cannot use blood pressure rises or falls to determine which POTS subtype you have. I had a good search online, and there was no medical literature whatsoever indicating you can work out the POTS subtypes in this way. And you yourself don't appear to know where your idea that you can do comes from.

People will read what you have written in this thread, and may then incorrectly think they can work out which POTS subtypes they have by looking at their blood pressure rises or falls.

That's why what you have written is very misleading.


I would suggest you change what you have written in your posts and remove your misleading statements that I quoted above.


Be assured that this is not a personal tirade against you, nor a criticism of your efforts to improve your health. My concern is just for other people reading your statements regarding working out the POTS subtypes using blood pressure rises or falls. These statements appear to be wrong, and could mislead people reading this thread.