Brassmuse

Thank you so much for the help truly appreciated!!

Thanks Songcanary for sharing! And so quickly I appreciate the recommendation on being prepared and concise with answers - thank you!! Seeing a doctor who understands this stuff is going to be a dream come true...I cannot wait for my appointment.

@Songcanary: I have my first appointment with Dr. Fouad in October. I live in Iowa but making the trip to see her... hoping to have some serious diagnostics completed, and get some real answers. Have you seen Dr. Fouad prior? If so would you mind sharing your experiences had with Dr. Fouad? Sincerely grateful for anything you can share. Thank you! Kelly

So sorry that is happening to you. I have experienced the same thing. Hope you feel better soon. Kelly

Greetings - I have an October appointment with Dr. Fouad at the Cleveland Clinic. My objective is to get to the bottom of what is really causing my symptoms (in brief they have gotten bad/gotten better/now are bad again), and to validate/refute some of my diagnosis(s) that have been handed to me over the years. Have you had any experiences with Dr. Fouad that you can share please? I located her name on the DINET website list of doctors and am hoping to hear good things from those of you who have been seen by Dr. Fouad. Thank you, Kelly

I know this is very late response to your post and hope still outstanding offer. I too am just outside of Des Moines. Was hoping you could recommend Dr(s) who take you seriously, actually do something other than diagnose, prescribe beta blocker, give me a printed definition of my diagnosis, then basically "dismiss" me. I had significant issues with syncope and pre-syncope, very low BP/very low HR, bad memory issues and debilitating fatigue, extreme dizziness, and bad palps last fall - was diagnosed by CardioEP with NMH/NCS, along with yet another round of holter and echo tests confirming the MVP (no surprise there). My GP only referred me to CardioEP after I insisted something was not right with the low BP/low HR, and fainting. In my opinion my GP was surprised that I got a "physical" diagnosis. Also she had me see psych Dr who diagnosed me with anxiety and he told me to quit my stressful job. I was on short term disability from work for 10 weeks while trying to get meds right. Went back to work somewhat better but was still having issues.... tried to cope and it has been rough and very bumpy road. So many sick days taken since January. Recent bout of strep for 7 weeks (very hard to recover from that), now having syncope issues again. I am beyond concerned about my job of 21 years being at risk. I essentially have been just "dealing" with this and pretending like I don't have an illness. I work from home, but travel for business, so for most part I can get away with hiding the fact that I am supine during conference calls, and am able to go to the restroom frequently due to the fluid loading. Sorry rambling. ******Any Dr. recommendation(s) would be greatly appreciated. And of course if you want to connect I am VERY interested in that as well.***** Thank you, Kelly

I had not seen this - but will use it!! Thank you for sharing.

Yep get into the car with my husband - turn to him and ask, "remind me where are we going?" What did I watch on TV last night...sorry could not tell you without reaaaaallllly concentrating and then maybe success. At least you made a connection that you the animals being fed were in the water

My doctor connects the two.

Mine has ran in the 97s for years sometimes lower - cold frequently. Always chalked it up to hypothyroid but my thyroid is in check due to synthorid...still cold and low temp. It does swing however. So I suspect it is the ANS. Taking warm bath helps but then have to be very careful to not get too warm...geez.

I've noticed that when I experience an increase in palps and irregular heart beat that I get extremely dizzy, lightheaded...which for me brings on nausea/sweating/pre-syncope. It gets quite bad actually and I have squat or go supine more frequently than usual. I have less NCS symptoms when my heart is not doing the MVP flipflop what do you mean under "It wreaks havoc on my NCS"?

Been on RX for Vit D3 6000IU daily for 2 yrs. I wonder about the connection between Vit D3 defi and dysautonomia???

Yep - I have MVP; diagnosed at age 25 after echo and holter. It wreaks havoc on my NCS. Cheers Kelly