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. As an adult 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 syncope, although I am not sure if someone's heart stopping is part of vasovagal syncope. None of that is fun and I worry about what that may be doing to my brain and body for it to shut down so often but the real problem is my fatigue and nausea.
I am almost always tired or exhausted and nauseous. I have also started having more difficulty swallowing food and breathing. I learned from an echocardiogram recently that there is fluid building around my heart 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'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 have just finished seeing a rheumatologist who told me that I do not have a rheumatological problem. I have terrible GERD, which I am told may be why I am having trouble swallowing and breathing and have a regularly occurring cough. 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.
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 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 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 is having 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. They put a heart holter on me for 24 hours recently and the results said that I had tachycardia for about 45% of the time. I am not exactly sure what all to include. Most of my lab work normally comes back normal. I have been tested and found negative for lupus and diabetes. If anyone has any thoughts on this I would really love to hear them. I have researched as much as I can think to research. I have gone to many different doctors with the answer of yes, something is wrong but I don't know what it is. I just want to know what's happening so I can do what I can to help myself lead a healthy and, hopefully, long life.