News:

New to the boards? Start with "Welcome! What you need to know as a member of this community"

Main Menu

Neurocardiogenic Syncope Anyone?

Started by SjoDry, July 19, 2022, 05:23:02 AM

Previous topic - Next topic

SjoDry

Hi SjoggieMates..

It has been a good while since I have been here. I just had a very crazy experience on Friday(which I thought was either heat exhaustion or heat stroke) that landed me in the hospital. After a cardio work up and chemical stress test which ruled out cardio disease, I remembered my autonomic dysfunction. After researching it appears that what I experienced is called Neurocardiogenic Syncope. I almost lost consciousness (had several symptoms) and was hospitalized for Tachycardia and high bp. I have sent a message to my Rheumy (Dr. Birnbaum). For any of you who might be familiar with this. What does it mean for day-to-day functioning? For instance, will I need to be careful and avoid sun? If I am wearing a sun hat or umbrella..can I still have this response due to heat? I have been having vertigo for the past year or so (typically upon rising or laying down..but randomly). It appears that this Dysautonomia is progressing.

Thanks in advance.
Take care.
SjoDry
Female 63y/o; SJS/Mixed Connective Tissue Disease; CVID; Dysautonomia Chronic Digestive/G.I. issues; Leukopenia;Tachycardia; Bronchiectasis; High Blood Chronic Pain; Possible Scleroderma;Sub~Q IVIG infusions~Hizentra; Plaquenil; R

meirish

You have a good doctor so I would think you will hear something from his nurse. If not I would call and check about getting an appointment as this syncope could very well be related to the Sjogrens. Also, Sjogrens can affect the nerves and can affect the heart also. There have been people on here over the years that ended up having pacemakers or something similar to straighten out their heart rhythm.

I would not be surprised if you would need a cardiologist that is familiar with Sjogrens and other autoimmune diseases. Good luck. meirish

SjoDry

Thanks Irish.

I have only seen Birnbaum once in 2021 since he arrived in Pittsburgh.

Unfortunately, when I had my episode and landed in the hospital last week, I emailed him asking for an appointment. The email I received from him blew my mind. I think he is one of the few docs in the country who has the distinction of being an internist, a Rheumatologist and a Neurologist.

The email from him said...all of my patients know that I don't know how to manage Dysautonomia or blood pressures! Wow..really?! I get that he prefers the mystery & very systemically involved patients..but I was not requesting an appointment to discuss blood pressures. I needed to understand the sudden changes and apparent progression of my Dysautonomia. I wrote a professional letter to Dr. B in response to his email. One of my friends who used to be in the Sjogren's group I ran for five years, told me that Dr. B made her friend cry and was incredibly rude. There may be a reason he left Hopkins?

Now..I have reached out to establish a new Rheumy (who is unavailable until Feb.), I found an expert in Dysautonomia (two year waiting list)..the kidney specialist who my pcp is sending me to (available next December). Not to mention that with this immunodeficiency, most of the blood tests that I ever have are seronegative.

I may go back to my PCP who thinks I have Scleroderma and see if he can order some tests until I can see anyone. I guess it's back to waiting and wondering.

Thanks for your kind words! 🌻
Take care.
Sandy
Female 63y/o; SJS/Mixed Connective Tissue Disease; CVID; Dysautonomia Chronic Digestive/G.I. issues; Leukopenia;Tachycardia; Bronchiectasis; High Blood Chronic Pain; Possible Scleroderma;Sub~Q IVIG infusions~Hizentra; Plaquenil; R

meirish

I can understand Birnbaum not doing dysautonomia as it probably is more related to cardiology etc. Yes, at one time he was the only one in the country with all those specialties. Most specialists usually have to be internists first in order to get their specialty training.

You might want to try a cardiologist as I can't imagine any rheumatologist getting very deep into the dysautonomia. If you can find an immunologist to see for your immundeficiency you may be surprised at the info you find out. Make sure they don't just allergies. I had an immunologist who just retired and was such a blessing for me. I had been with diagnosed with an autoimmune skin disease and with Sjogrens when I was referred to him. He diagnosed my Myasthenia Gravis, Hashimotos and my severe t- cell deficiency.I would not have done well at all if he had not found that t-cell issue. Immunologists who specialize in immune disorders often I very knowledgeable of autoimmune disease as our systems really are intertwined. Good luck. meirish.