About 10 months ago I started having weird "episodes" which I believed at the time to just be caused by stress. Chest discomfort, racing heart, palpitations, dizziness, near black outs, neck & back pain, headaches, extreme fatigue and weakness.
I went to my regular doctor for this these stress issues. He did an EKG and even though nothing showed up he sent me to a cardiologist believing this was heart related.
The 1st cardiologist ordered many tests. 6 months later and medical bills piling up I still did not have an answer for why I was having these "episodes". I was told was I had low blood pressure and a PFO which would not cause these symptoms. I was told to increase my salt intake - that’s it.
8 months later - I had another episode the worst episode yet which I almost didn't recover from.
I was just sitting, not doing anything physical and I started feeling "funny". From what I was told, within a matter of seconds I lost consciousness and stopped breathing. My heart had stopped. I turned a purple white color and was given CPR for about 4 minutes. When I came to, I was confused and could not remember certain things. EMS finally showed up and brought me to the hospital. I was told by the ER doctor, it was a good thing I was not alone and was with someone who knew CPR. All tests at the hospital came back negative, but I knew something obviously was being missed.
I returned to my 1st cardiologist, after being released from the hospital very upset. After expressing my concerns, he sent me to another specialist. Meanwhile, I was terrified to be alone if another episode were to happen who would give me CPR.
The 2nd Cardiologist listened to my story then sent me for more testing and put me on a 28 day monitor. Again nothing showed up on the tests. The heart monitor showed my heart was skipping beats but that was about it.
I was then sent for a tilt table test. My Cardiologist was pretty sure I would fail the test and pass out, but she did not realize the extreme nature of what was happening to me until I failed the test. I didn't just pass out, my heart completely stopped beating and I had to be resuscitated. When I woke up, the nurses, and my doctor were beside themselves. In my doctors own words she said “I was horrified".
I was told my vasovagal nerve is causing these episodes and I have an extreme case. There was no "cure" for this diagnosis. I can only make lifestyle changes and always be prepared for another episode. I am about to undergo surgery to get a permanent pace maker. This is supposed to keep my heart beating during episodes.
It is frustrating there is not much literature on vasovagal episodes. I have searched the web daily, but only general information is available. I was diagnosed about a month ago now, and my symptoms are only getting worse. On top of all the other symptoms, I now suffer from night sweats, swelling, and get "dizzy" consistently through the day. I am still having memory problems. I am terrified another episode will happen while I'm out in public.
Does anyone know where I can find more literature on this condition (besides general web searching)?
Does anyone have a condition like mine or know someone who does?
Thanks for listening.
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