Has anyone been checked for Dysautonomia (POTS syndrome)

maebae

New Member

Joined : Jan 2009

Posts : 18

Posted 4/21/2009 8:13 PM (GMT -7)

Have any of you been checked for this condition?

Have the doctors ever checked your B/P while standing ?

Or heart rate while standing?

This condition is linked with CFS and it has been a long battle for me searching for my possible illness. And many many symptoms, I went a whole year of being told I had depression, all in my head, and given waste-basket DX's . I have had almost every test possible and have spent thousands of dollars in insurance luckily...and not once did one doctor do these basic vital checks when standing.

If you have a heart rate over 100 when standing it is not normal (without exertion)

I suggest you all have your trusting doctor do this simple heart rate check and do the orthostatic blood pressure check to assure you just have CFS.

Thanks Mae

glenp

New Member

Joined : May 2009

Posts : 9

Posted 5/9/2009 10:55 PM (GMT -7)

Yes many with CFS have dysautonomia, either pots or orthostatic hypotension, there being many variations it is a time consuming process to check yourself. Most doctors only do a quick check in the office. You should buy your own monitor and also check after various times of standing. Some variations show up maybe 1/2 hour after standing. I believe that many pots patients mistakenly believe that they are having panic attacks. Compression socks help the condition somewhat. Some drugs such as dextroamphetamine also help the vascular sysrem so that the blood flows easier. Here are a couple of links:

http://www.chronic-illness.org/info_pages/pots.html

http://www.ninds.nih.gov/disorders/dysautonomia/dysautonomia.htm

love glen

emily837

New Member

Joined : May 2009

Posts : 10

Posted 5/15/2009 3:06 PM (GMT -7)

i do, or did, it turned out after years of being told that i had CFIDS that i was diagnosed with Neurocardio-genic Syncopy because i had really low blood pressure and it went wonky when i'd stand up. It was only by a wierd conversation with my old pediatrition that i was pointed in the direction of the cardiologist who diagnosed me with tilt-table test. an inexpensive beta-blocker changed my life.

I still struggle with getting sick easily and feeling tired and dizzy---but nowhere near the level as i did before i started the medication. (Pindolol and then Inderol when a few years later i started getting migranes, so they switched it becuase the inderol can help both problems....

What is so interesting is that years and years ealier i had a pediatricion tell me i had disautonomia besed on my purple hands, arms and feet----they have a weird mottled look. I've discovered in the last while a link with all of these different things and tthat they lead to a diagnoses of CFS sometimes----Still wondering if i've got it all straightned out or if there is more to do to try to control the problem when i feel worn down and wiped without reason.......

Chronic Fatigue Immune Dysfunction Syndrome, Neuro-Cardiogenic Syncopy, Endometriosis and Abdominal Scarring/ Adhesions causing severe chronic pain. Recent Neurostimulation Therapy Implant Surgery.

Long Term Depression and Anxiety---but on the awesome side-- Mommy to three, married 13.5 years and Still twitterpated!!

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