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Brain & Nervous System Disorders Message Board

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I have been having what I think are episodes of Cardioinhibitory Neurocardiogenic Syncope for the past 3 weeks. I am male and 54. I am in good physical shape and have always worked out about 4 times per week. I now weight about 160, down from about 170 pounds 3 weeks ago before this started.

I also have a minor umbilical hernia that I developed 2 years ago during a rare time when I got sick and had a very bad cough. I would have severe bouts of coughing, about 15 minutes long. During that time, my umbilical hernia developed just above my navel on my left side.

I have not had the umbilical hernia repaired yet because it is pretty minor and the doctor recommended watchful waiting.

3 weeks ago we were at the gym walking around the track and I had to stop. I had a couple of "pulses" or "flutters" of feeling light-headed (not dizzy) like I was about to pass out. I have never passed out in my life. My legs also took on a kind of heaviness - like they actually weighed more and were harder to move as I was walking off the track. I also had a kind of pulling or tugging directly along the line of both jaws and an identical pulling-down or tugging sensation across my chest.

On the way out to the car I was having a kind of tunnel vision I guess you would call it. My peripheral vision narrowed and it took everything I had to make it to the car. When these episodes occur I have a very loud ringing / tinnitus in my ears. I also sometimes have muscle cramping, usually starting in my calves or feet, but then spreads and ends up feeling like my whole body is going to wrench over in a fetal position and seizure.

My head becomes very foggy or cloudy with these symptoms and then clears up after a few hours. Bowel movements, or the sensations leading up to a bowel movement, often cause the symptoms to be at their worst; particularly if the bowel movement is in the evening. Morning bowel movements aren't as bad it seems. Twice, both times in the evenings, I have had to crawl on my hands and knees from the couch to the toilet to use the restroom.

During this first episode we got out of the gym and rushed home close by. On the way home, for the first time in my life I was afraid I could actually be having a heart attack. I actually said, "I think I'm having a heart attack!"

Amazingly, we didn't go straight to the hospital, which is right by our house on the way home because, with our lame healthcare system, I just did not want to rack up tens of thousands of dollars in medical expenses if it was at all avoidable. I had no idea I would feel this way in a time of need, but I sure did. I had just never thought about it that much before.

We got home and my instinct was to get on the sofa as quickly as I could and get my feet up into the back of the couch. In the garage, I got out of the car hunched over rushed straight into the house. Standing up straight made the symptoms of light-headedness worse.

When this happens my seated pulse will drop to about 45 beats per minute and my blood pressure drops significantly as well. I ordered a simple blood oxygen sensor I clip on my finger when this happens so I can see my oxygen level and pulse easily. Having a measurement is a little reassuring amidst the terror and panic.

This has been slowly day by day getting better, but each day in the late afternoon to early evening, about 5PM or 6PM, even if the symptoms have been stable all day, they definitely get worse for a period as evening approaches. These episodes are truly terrifying. Even after 3 weeks, when they happen, they are very upsetting. Then I wake up in the morning and I am better - not perfect but better.

I have researched this out the wazoo. I have seen so many people writing describing their terrible experiences with these symptoms, but no one I have yet found has found a solution; despite numerous trips and ambulance rides to the hospital and repeated tests, scans, medicines and treatments; sometimes after years and years of struggling with this. How is this possible that we don't have this nailed yet?

Has anyone experienced the same issues and found a solution; or has anyone had these symptoms and gotten over them? If so, how long did it take and what did you do that seemed to work? What did you avoid?

All the best and thank you for your time and responses.

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