Dysautonomia (Autonomic Dysfunction) Community
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Avatar universal

Arrhythmias, vasovagal syncope, GERD, fatigue...

I am new to this so I am not sure I chose the proper topic because my symptoms span beyond the syncope. I posted in another forum and based on my post someone suggested I post here. I have many things going on and am feeling very frustrated that I have no clear diagnosis so I do not know what to do about it. I am 26 years old. I am a full-time student and work part-time. Here is my previous post:

I am not really sure where to turn anymore. Sorry, this will probably be a long one. I just want to know what is happening to me. I have been seeing doctors on and off for four years. I have been passing out since I was 2 or 3 years old. I estimate that I have passed out over 200 times in my life. When I was a child I had low blood sugar so it was attributed to that. In 2006 I passed out in public and was hospitalized. I passed out while on the monitors and learned that my heart stops when I pass out. They saw up to an 8-second pause. It starts back up on its own. I have been told that it looks like I'm having a seizure when I pass out but a doctor told me that it's actually not a seizure, it's my nervous system shutting down. I was diagnosed with vasovagal (neurocardiogenic) syncope, although I am not sure if someone's heart stopping is part of vasovagal syncope. I wonder about what may be happening to my brain and body for it to shut down so often. My main daily issues are fatigue/exhaustion and nausea.

I am almost always tired or exhausted and nauseous. I have also started having more difficulty swallowing food and getting a good enough breath without making an effort. I learned from an echocardiogram recently that there is fluid building around my heart (pericardial effusion) but I don't know what it is or why it's happening. I was also told I have a decreased systolic function. Two and a half years ago it was at 65% and now it is at 50%. I am told that is at the lower end of normal but not appropriate for someone my age. I'll be seeing the heart rhythm specialist soon.

I have seen two endocrinologists but moved and did not get to continue seeing the second one. One thought I have PCOS, one did not. I have very high DHEA. I am not sure if those things are relevant. I was referred to a rheumatologist and found out that I do not have a rheumatoid disorder. I have terrible GERD, which I am told may be why I am having trouble swallowing and breathing and have a regularly occurring cough and nausea. I also found out from a barium swallow that when I swallow any texture of food or water that it does not continue down my esophagus to my stomach. Some of it lags behind and stays in my esophagus. They said that is probably why I feel full almost right after I begin eating.

I have begun having problems with my circulation. I can't stand in one position for long without getting queasy. I have to keep moving or sit. I have a manual car. Often during or after driving now my toes start getting tingly and going numb, I think from pushing on the clutch with my foot. That never used to happen. I'm also getting tingly and numb feet and lower legs (up through my calf) sometimes, dependent on the way that I sit.

I've also been having difficulty with my balance. If I look up or to the side too quickly I begin to fall over, not always but I am noticing it on a regular basis. I sometimes have difficulty with my vision, things are more blurry and out of focus, usually coinciding with slowed response time. It's hard for me to think of words sometimes or remember what I was just saying or react. When I feel like this I don't drive, just to be safe.

My mom has had her gal bladder removed and has chronic pancreatitis or something like it right now. Heart problems run in her side of the family but I have been told that the structure of my heart is normal. I have the fluid around my heart, the decreased systolic function, and sinus arrhythmias, sometimes bradycardia, sometimes tachycardia, sometimes off-beat. They put a heart holter on me for 24 hours recently and the results said that I had tachycardia for about 45% of the 22-hour period. I am not exactly sure what all information to include here. Most of my lab work comes back normal. I have been tested and found negative for lupus, diabetes, hepatitis, HIV, and pregnancy. If anyone has any thoughts on this I would really love to hear them. I have researched everything I can think of to research. I have gone to many different doctors with the answer of yes, something is wrong but without any definitive help. I just want to know what's happening so I can do what's possible to help myself lead a healthy and, hopefully, long life.

Thank you for taking the time to read my post.
31 Responses
Avatar universal
Hi just bumping this up for you
492869 tn?1285022533
Thank you for bumping this up Eve!  I hadn't seen this message, the community was busy this weekend!

So sorry you haven't received a response yet MelboSun.  Are you currently being treated for your Vasovagal Syncope?  If I may ask, where are you being seen?  There are doctors that specialize in Dysautonomia.

Dysautonomia Specialists:

Additionally, if you haven't been seen by a team of specialists at an academic teaching hospital, that maybe an avenue worth pursuing.  Have you ever had a Cranial CT, or MRI?
612876 tn?1355518095
I am not sure about the fluid around your heart and the decreased systolic function, but I would like to address your neurologic symptoms.

The swallowing issues (and other digestive problems), tingling, numbness, balance problems ... all of that may be indicative of neuropathy, be it autonomic, sensory, and/or motor.  This information may be of help:


Have you been tested for neuropathy?  What treatment are you on for your neurocardiogenic syncope (NCS) and nausea?  Have you had a gastric emptying study?  
881165 tn?1265988188
Well, Heiferly beat me to the neuropathy links :) so I'll ask what all was done to rule out autoimmune?  A lot of your symptoms are similar to mine.  My heart does occassionally decided to stop, so yes, that can be part of dysautonomia.  I had Sjogren's for 13.5 years before it was diagnosed, and during that time, my immune system was attacking my peripheral nerves.  There are a couple different autoimmune diseases that don't always show up positive in bloodwork.  Have you had ANY indications of autoimmune (elevated Sed rate, elevated CRP - both inflammation markers, positive ANA)?  There are a lot of causes of neuropathy, so check out the links listed above.  Most, maybe all, your symptoms could be from neuropathy.
Avatar universal
Thank you all so much for your responses and thank you, Evo, for bumping my post. I am new to forums. I will most definitely be checking out the links you all offered. I am not being treated for the vasovagal syncope. I was given some techniques, like squeezing my fists, to help keep me from passing out. I was put on a Beta Blocker, Atenolol, early this year but it caused me to lose my balance much more and I felt cold all the time so I stopped taking it. Otherwise, I've just been told to add extra salt to my diet. Until reading this forum I did not realize how many other things could be associated with vasovagal syncope. I just thought it was the reason for my passing out.

I was in the military so I am being seen at the VA hospital. I feel like the doctors are only dealing with me because I am insisting on it but I do not have medical insurance so that is where I go. I am not sure what all bloodwork was done but I know I had negative ANA. My new primary care doctor just offered me anti-anxiety medication upon my first visit with her but I would much rather see a dysautonomia doctor (would that be a neurologist?) before considering anything like that, especially since I do not feel I have any problems with anxiety.

I believe I have had a cranial CT but, if so, it was a few years ago and must have come back normal because I never heard anything new about it. I have had an upper endoscopy because of the GERD symptoms but not a gastric emptying. I am very interested in finding out about seeing specialists in an academic hospital but know nothing about how to take advantage of that opportunity. You all have brought up many things for me to research now. Thank you again, so much.
612876 tn?1355518095
Well, they could certainly be doing more for you in terms of treatment than telling you to salt load and use countermaneuvers if you're still having syncope--and I don't mean just offering you anxiety meds!  You may want to browse through our treatments page (keeping in mind that you're looking for ones that apply to syncope and your other specific symptoms, as these treatments cover the gamut of dysautonomia).  Most commonly patients with vasovagal syncope are tried on the medications Midodrine and/or Florinef (aka fludrocortisone) first, though there are other things that can be tried if those aren't helpful or well tolerated due to side effects.  (Pardon our dust; this page is a work in progress.)


If you need help figuring out where the best hospital is close to you and you don't mind disclosing your general whereabouts, you can either post that here or send a private message to me by clicking on my username and I can look up the teaching hospitals in your area and also double-check if there are any autonomic specialists that happen to be in your area (that tends to be hit-or-miss).  

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