pots and orthostatic intolerance, are they the same?

kat0465

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i Don't know if im posting this in the right category. But was wondering what the difference is between the two?
and does anyone know where i can find all they symptoms of both. my heart bothers me so, and it sounds kinda like Pots.

Im due for another cardio workup, but all the ever find is irregular thing here & there & never do anything about it.and i feel like im gonna keel over from my heart.

if i said anything about Pots, they would probably look at me like i was nuts!
also how to they diagnose it? i know it's probably been brought up on here before, but my brain wont let me wade thru all the posts today:worried:

Kat
 

Sushi

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The usual diagnostic test is a tilt table test--it isn't fun! But in the hands of a good clinician, can tell you a lot. As I understand it (I have OI but not POTS), the main difference is that in POTS, when you stand up, the body tries to deal with a drop in your blood pressure by raising the pulse--hence tachychardia. With OI, the BP drops, but the pulse doesn't go up.

There are not a lot of cardio's who recognize and test for POTS, so before you go to one, it might be good to check with him or his nurse to see if he believes in it. You can find out a lot at http://www.dinet.org/--including a list (limited) of docs who treat it, and a forum. While it is good to know what's going on, the treatments available are not that great, involve drugs that often cause reactions and only treat the symptoms. I took the drugs for a couple of years to get through the worst of the symptoms, then began researching what lay at the bottom of the problem--i.e. CFS and all its frills.

Sushi
 

ahimsa

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Orthostatic intolerance (OI) is an umbrella term, different types of OI

It's possible that doctors use these terms in different ways but the way it was explained to me is that Orthostatic Intolerance (OI) is a larger category and there are different types of OI. POTS is one type, NMH is another.

Here's an extract from http://www.cfids.org/about-cfids/orthostatic-intolerance.asp :

Diagnosis: Orthostatic Intolerance (OI)
Orthostatic intolerance (OI) is the development of a set of characteristic symptoms while standing or sitting upright. It has been associated with chronic fatigue syndrome (CFS) in both adults and children.

The connection between OI and CFS was first introduced in 1995 by Rowe and associates at Johns Hopkins University, who identified a type of OI called neurally mediated hypotension (NMH) in CFS patients. Since 1995, scientists have learned much more about the broader problem of OI in CFS. It is now thought that many CFS patients (up to 97% in some studies) have some form of OI and it seems to be a particular problem in young people and at least with CFS.

Types of OI
There are many types of OI, at least two forms have been linked with CFS in research studies: NMH and postural orthostatic tachycardia syndrome (POTS).

NMH is a precipitous drop (at least 20-25 mm Hg) in systolic blood pressure when standing. The blood pressure drop is accompanied or preceded by an increase in symptoms.

POTS is a rapid increase in heart rate (pulse) of more than 30 beats per minute (bpm) from baseline, or to more than 120 bpm total, during the first 10 minutes of standing. It is also known as chronic orthostatic intolerance, or COI.
Here's another description from http://www.nymc.edu/fhp/centers/syncope/orthostatic_intolerance.htm :

Orthostasis = standing upright. Orthostatic intolerance can then be defined as "the development of symptoms during upright standing relieved by recumbency". Often, illnesses producing orthostatic intolerance include disorders of blood flow, heart rate and blood pressure regulation that, while most easily demonstrable during orthostatic stress, are present in all positions. The term "dysautonomia", signifying autonomic dysfunction, has been frequently applied to this list of disorders, but recent data suggest that autonomic function may be normal in many variants of these conditions but have to cope with unusual circulatory demands. A simple and common example of this is the finding of postural hypotension and postural tachycardia when dehydrated. Therefore it is probably best to denote the type of symptomatic illness by the more vague term "orthostatic intolerance" rather than the more specific term"dysautonomia" which may not be correct. Acute orthostatic intolerance usually manifests as syncope (fainting). Many syncopal patients have no intercurrent illness; between faints they are well.
One last link to the National Dysautonomia Research Foundation web site - http://www.ndrf.org/orthostat.htm
 

glenp

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It is a good idea to buy your own bp cuff monitor. Take your reading before getting up and after getting up, also check it after standing for a length of time, while sitting and after getting up, keep a diary of your bp and heart rate and take it into the doctor next time you go. If you get an echocardiogram make sure that you get a bubble injection with it. Check out "dysautonomia", its a broader form of this. There is lots of information here on the forums

http://www.forums.aboutmecfs.org/showthread.php?4147-Dysautonomia&p=100824#post100824
 

kat0465

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thanks everybody, i figured they were related. i was reading a Story about a 12yr old girl that got really Ill. turned out she had pots, but it took them a long time to diagnose her.

Not Only did she have all the heart stuff going on, but she would have severe vomiting, dizzy, Migraines. a few years ago i had about a month of solid nausea vomiting, the heart stuff, Tachycardia. i lost about 40lbs over a few Months. i went from er to er and they would just send me home with a heart rate that would jump from the 90's to 130's said it was gastritis!!!!
thanks for the Dr list sushi, thats my main worry is finding a dr that knows what it is and how to treat it.

Glenp, whats a bubble Injection?

Kat

Im wondering now if i've had pots on top of the cfs/fibro this whole time.
 

glenp

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Some echoecardiograms include a bubble injection. They just use a solution with air bubbles injected in your arm, then you cough, and it can show abnormalities at the time that you cough
 

Tony

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Dr David Bell has written some great info on OI. http://aboutmecfs.org/Trt/TrtOIBellTest.aspx

"Indications of orthostatic intolerance

* Orthostatic systolic hypotension (low blood pressure): fall in systolic blood pressure of 20 mmHg or more
* Orthostatic diastolic hypotension (low blood pressure): fall in diastolic BP of 10 mm Hg or more.
* Orthostatic diastolic hypertension (high blood pressure): rise in diastolic BP to 98 mm Hg or higher
* Orthostatic narrowing of pulse pressure: reduction in pulse pressure to 18 mm Hg or lower.
* Orthostatic postural tachycardia (increased heart rate): increase in heart rate of 28 bpm or to greater than 110 b/min."

And this one http://www.mefmaction.net/MECFSFM/Articles/Symptoms/OIBell2/tabid/232/Default.a
 

taniaaust1

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There are many kinds of Orthostatic intollerance, POTS is just one kind.

POTS is extremely common in CFS peoples (canadian consensus defination CFS). I personally think anyone with CFS should check to make sure they dont have POTS too as if you do.. treathing to POTS will help your symptoms some. (you can check that yourself by heartrate.. not all POTS people show BP issues)

http://www.dinet.org/symptoms.htm Has a good list of POTS symptoms
...............

Heart doctors dont usualy know much at all about POTS and most cant even diagnose it.. POTS isnt a heart issue but rather an issue with the autonomic nervous system.