Finally Got A Diagnosis!!

[jonathanireland]

Hey guys!

I have not been on here in a long time, hope everyone is well.

So I got my diagnosis of Neurocardiogenic Syncope.

My BP drops but my pulse doesnt slow down.

They said I do not have POTS but they cant seem too explain the tachycardia on standing which in my opinion is a diagnosis of pots. my pulse goes from 70-80's to 130's with a small rise in bp.

So to be honest I want a second opinion.

I was told to go on Fludrocortisone and join the gym. Im only 11 stone.

I dont understand.

[lieze]

yeah when I was discharged from Cleveland Clinic from cardiology they told me to go home and eat and exercise....I know what you mean-if I was able to eat and exercise I wouldn't have been there in the first place....I was feeling really lousy and they just acted like I was okay.

I didn't feel okay at all.

[juliegee]

Jonathon-

If your supine HR is 70-80 and it jumps to 130 w/i 10 mins- you DO have POTS. Chances are, that the doc who interpreted the TTT isn't familiar with all of the terminology and definitions etc. Clearly, the doc wasn't knowledgeable about dysautonomia with the advice that you got. Many of us get a DX at one place and then end up seeking ongoing treatment somewhere else.

NCS is the same thing as neurally mediated hypotension NMH. That's what my son and I have also. It means that our BP can drop out (syncope) if we stand still too long. I also have traditional POTS and my son has a delayed form. His HR doesn't rise until he's about to faint. Technicalities and semantics- it's basically the same thing. POTS, NMH, NCS all encompass OI and various forms of dysautonomia. Many of the treatments & even symptoms are the same.

Sorry you've got the DX. but glad you're offical It helps to have a name for your illness.

Julie