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[Guest guest]

Dear ,

This is in response to you and your daughter having a high heart rate, feeling

dizzy, etc. The heart monitor you described is called a Holter Monitor. It is

worn outside the body (hanging around your neck, in a pouch), and attached to

patches/wires on your chest. It is non-invasive (which is good), but often

doesn't catch the episodes you are having. Lots of people with elevated heart

rate, bp drops, etc. can go for days, even weeks or more, without it happening.

Has a Tilt Table Test ever been suggested to you? That is the procedure used to

diagnose POTS, Neurocardiogenic Syncope, etc. The protocols were developed by

Dr. Blair Grubb at the MCO in Toledo, and are still used across the country (and

world, for that matter). It is a more involved procedure than wearing a Holter

or 24 hr. BP monitor, as it usually involves an IV, and is done in a hospital

setting by a cardiac electrophysiologist on an outpatient basis. However, a TTT

yields more information. It pinpoints the exact changes in BP and heart

rate/rhythums, whether a person actually faints or not. A " normal " person will

have a negative Tilt Table Test, meaning that they will not have abnormal

fluctuations in BP or heart rates, and will not faint under " normal "

circumstances. Many, though certainly not all, EDSer's do turn out to have some

form of Dysautonomia (also referred to as autonomic nervous system dysfunction).

Not exactly a " true " POTS, NCS, etc., but actually secondary to our veins, etc.

being too " stretchy " to dilate and constrict efficiently enough to pump the

blood back to and from our hearts/brains in a timely manner. Dr. Grubb says

that IBS, Interstitial Cystitis, Narcolepsy, and a host of other autonomic

nervous system problems are all a part of this " big picture " for many

EDSers.......as is the case with me and my two teenage sons (each of us to

varying degrees and severity, and with slightly different manifestations).

Please do see what Dr. Byers says about this. I am curious to know, and I know

others here are too. You are the one with the appt with him, aren't you? How

lucky you are! I have only emailed with him and his assistant, , on one

occasion (to request that they recheck my skin biopsy, which they did---was

still negative for VEDS, though they'd gathered more genetic information since I

first had my biopsy done--I just wanted to be certain, as I do manifest vascular

components).

Hope I've been somewhat helpful.

Love,

~LoneStarRose~

(~~)