Mayo: Tilt Table Ep Study Verses Autonomic Reflex Screen

[rmlyonsfamily]

Hi

I haven't posted here in a LONG time! Some of you might remember that my daughter Kayleigh has POTS - she was at Duke Medical Center most of the summer almost 3 years ago. She's doing well now on her meds and lives in Colorado now. :/

Since then, my husband got sick. 8/1/12 he had brain surgery after a Chiari Malformation and syrinx. He did well until July of 2013 when he got sick again. His cardiologist feels like he has an autonomic dysfunction like Kayleigh does. His echo is good, EKG indicates some electrical conduction issues. The neurologist did an autonomic reflex screen about 6 weeks ago (that was a tilt table) but it was negative so he moved on. Yesterday was our first cardiologist visit - she manually checked his pulse during sit to stand - he went from 50 sitting to 130+ standing within about 10 seconds! Then, about 20 seconds later, his pulse crashed to less than 40. We explained to her that this is typical - he can't do much activity without passing out AFTER the activity. She said to her, that was classic autonomic dysfunction and even started him on the Midodrine yesterday. (He's been on Metoprolol for a year after being told he was tachycardic). She scheduled him for another tilt table test - but this time not the "screen". His Mayo itinerary calls it a "Tilt Table EP study".

What's the difference between the tilt table he had for the Autonomic Reflex Screen and this one, the Tilt Table EP study? They look basically the same on paper.

Also - anyone an adult male with this disorder? I was always under the impression it was young women who dealt with it. I'm so confused!

Thanks!

Michelle

[Katybug]

Hi Michelle,

I remember you! I'm so glad to hear Kayleigh is doing well! And, I'm so sorry to hear your husband is not. I don't know the difference in the two tests. But, we have had quite a few adult men join in the last 6-9 months. I do know that autonomic dysfunction is definitely not limited to females. I hope you are able to get to the bottom of this for him.

Katie

[Chaos]

Hi Michelle,

I remember you and Kayleigh too. So glad to hear that your daughter is doing so well now. She had a rough time of it back then.

Sorry to hear your husband isn't doing so well. I am not sure what the difference is but I'm guessing that a TTT- EP study might be the cardiac version of a TTT rather than the TTT that they do in the neuro department with the autonomic reflex screen. When I've had the cardiac version of TTTs they ran 45 minutes long rather than the 10 minute ones they did in neuro along with the ARS testing.

I think young women are most prone to getting this but it can strike anyone.

Good luck getting your husband's situation under control. Sending you gentle hugs. You've certainly been through a lot!

[JuneFlower]

I looked up both tests and they are different. But aI can't really explain the difference b/c I don't know what the results would mean or why they have two kinds. But one seems to be ordered by a neurologist the (reflex screen) and the other by cardiologists. Now I'm wondering which one my daughter is going to have. Ugh.

June

[Gemma]

I think the one that neurologist does is part of the autonomic function test, where you lay on the table first, then do breathing Valsalva maneuver, and then they raise the bad at like 70 degrees for 10 minutes and look at changes in your BP and HR.

The one cardiologist does is just laying on a table for like a minute and then they raise the table and watch you until you faint or vitals become really bad, then they lower you.

I am not sure if what I am saying is correct, but that is what I had done, unless the cardiologist has different versions of tilt table testing.

[JuneFlower]

yes a cardiologist told me there are different tilt table tests even within their field. Some are more involved with carbon dioxide measure and other stuff.

June

[rmlyonsfamily]

Thanks! The cardiologist actually called today to check on him and decided NOT to do the study. Said she talked with colleagues and saw enough in her office with her own testing to diagnose him with Autonomic Dysfunction. We see her again in a month and may adjust meds at that point.

Kayleigh is doing great! She's in college for nursing and happy. She did have a bit of a spell back in November, but she was in clinicals, college, and working full time. Her doctor is certain it happened because her body was so fatigued!