First of all, thanks for all response (both positive and negative) to yesterday’s post. A bunch of questions arose from the post so I will try to answer them.

Some of you told me that you did check in on me… and yes, that’s true, I had some people text me while I still was at the hospital. I probably should have worded it differently but I wrote that no one had checked on me these two days, meaning Wednesday and Thursday. You see, I live alone with my two dogs. It has happened that I have passed out in my house and woke up from Twix kissing my face and trying to get me up. But what if he doesn’t succeed?
There are a lot of thoughts that goes through your mind after an incident like this. You may think that it’s something I just shook off and walk on with my life. No. I don’t. I probably over analyze everything.But I want to know why this happens. I want to know how to stop this, how to prevent it. Every time I pass out, I analyze what I was doing, where I was, how the day/days before had been going, trying to put the pieces of the puzzle together. Trying to remember what I felt. What did people said.

You see… the only diagnosis I have gotten is “Syncope Syndrome” which is basically that I pass out of no explanatory reason. Usually this is a cardiac issue and with my history of 2 cardiac arrests from bradycardia it sounds quite reasonable. But my pacemaker rarely show anything when it happens. It has happened that I have gone into SVT but not always.
What not many know is that I had these very problems in high school as well but at that time it was mostly associated with sport activity such as running. And being that young they didn’t really worry about it, swept it under the carpet with reasons as “on her period” or “faking”. And it didn’t happen often enough so it was serious. And nothing could be wrong with such a young heart, right? But for almost 20 years I didn’t have one single syncope. Until September 12, 2017. What did I do during that time? What was it that made me be healthy for so long and then suddenly just die?

This time it scared me that I was all alone and what if Twix wasn’t able to wake me up, how long time before I was found? Will I survive it? Will I hurt myself? I’ve been blessed to not hurt myself up until today’s date. What changes to I have to make to be safe. It wasn’t to criticize anyone for not checking on me, it was to tell my thoughts about it, and I probably didn’t do it very clearly.

“What does the doctors say?” Absolutely nothing. They just shake their heads say that yes, I have this condition and I have to learn to live with it. The only thing that has been brought up is that after my first arrest an MRI was done. At that scan they saw two abnormalities in my brain. At that time they did not think they had anything to do with the cardiac arrest so it was only said to check it up after 6-12 months. Shortly after I got my pacemaker, I guess it could have been 10 months later, another MRI was done. They could see that it wasn’t necessarily worse but it was different. At that time we hoped that the syncopes would disappear and they just recommended a checkup yearly to keep track of these abnormalities. That was in 2018. Since then nothing has been done about it. There are radiologists that agree of doing MRI on me, my pacemaker is MRI compatible but it is mostly done in emergency situations. At this point I don’t even think my insurance would approve it since it doesn’t even approve the iron infusions I need… but could it be a reason? Maybe but I think it’s a long shot, very long shot.

I got the question if I get any warnings. Most of the time it goes so fast that I barely have time to react myself. But apparently on Tuesday I was able to almost say that I was about to pass out. One thing to know is that it seems like this is only happening when I am standing up or after working out (exceeding a heart rate of 150 bpm). So what I have understood (since I haven’t seen it happen on video for example) it looks like I am vageling out of some reason. Somewhere there is a stop in the blood flow to my brain. All my vitals are good and it takes a little while and I’m waking up. Do I need to go to the hospital? Most of the time, no. Not unless I’m bleeding or someone knows for sure that I have hit my head. Well, after Tuesday, that doesn’t matter either since they don’t scan the head anyway…
But if I get any feelings or getting dizzy, I will be the first one to put my butt on the ground. I will not drive if I have any symptoms. And I will let people around me know that I’m not okay. Because the last thing I want to do is start a scene, or scare someone, or hurt myself for that matter.

This is a weird and different condition to have. I try to look at is as any other medical condition, asthma, seizures or diabetes. You treat it on a daily basis with medications, trying to not do a big deal out of it, think about being healthy etc. But now and then, your body still decides to go for a loop and you get an episode.
It makes me very very sad that people are uncomfortable being around me and work with me because of my condition, but there is nothing I can do about it. I understand that it is super scary when I one second are just fine and the very next are laying unresponsive on the ground but I strongly believe that if you know about it, it may help you more than me. One patient is enough!
There is nothing more I want than find what is causing this. We are not many people who has this problem so there are no science to turn to. There is no obvious reason so where should I start looking? That also means that I am very alone dealing with it. All my thoughts and emotions are kept within me.
I am happy to answer questions and maybe one day someone has an idea that leads to the solution. I can’t wait for that day to come!