I'm writing about this in the hopes that: 1) I might find someone else who has suffered from this and 2) Perhaps I can help someone by writing about my experience. If not today, maybe someday in the future.
At around the age of 14 or 15, I started having these, episodes, for lack of a better word. My mom had them too, which made me feel less alone and more understood. For years neither of us had a name to put to it. All we knew was that about once every year or two, seemingly out of the blue, our bodies would fail us. One second you would be sitting there working at your desk, or cooking dinner, and the next you would be on the ground, experiencing the worst stomach cramps you could possibly imagine (my mom said the pain is worse and more intense than going through unmedicated child birth- which she did twice), and slipping out of consciousness. Which, is always welcomed relief from the pain. However, waking up drenched in sweat and unable to see/hear/speak is terrifying on a level I'm not able to put into words. Within a few minutes of regaining consciousness you feel like you were on the loosing end of a bar fight: your stomach left aching and your body devoid of all energy.
For years doctors shook their head at my mom and me. "General anxiety" was often thrown down on our charts as the culprit (it was *not* anxiety). Finally, after tapping my mom's medical books and much Googling, we found a possible diagnosis. To my surprise it didn't have the words "insurmountable amounts of pain" included its name. Rather it sounded quite innocuous: Vasovagal Response. Symptoms fit perfectly, except both our reactions were 1000x more severe. This thing is not supposed to be life threatening, but for both of us it seems to be. My mom has had episodes that have triggered grand-mal seizures and mine, at least once, landed me in the ER where they lost my pulse for a least a few moments. Thankfully it doesn't happen often, but I live in fear of this thing.
With all 3 pregnancies I noticed that, at times, I would get quite dizzy when I stood up. It never bothered me much because I've always had low blood pressure and though it seemed to be happening more frequently, I was no stranger to having to hold onto a wall to stop the room from spinning. Last week, I stood up from the couch and along with the intense dizziness, I lost my sight. I just, couldn't see. I quickly fell to all fours and waited it out. Though a bit more dramatic than most dizzy spells, I tried to chalk it up to not drinking enough water. However, I now think this is part of the Vesovagal response. Just a much, much more mild form.
Two nights ago, the same day I found out that #3 wasn't viable, it happened again. But on a level that far exceeded anything that I had experienced to date. It came on strong and fast. I just, I don't even know how to explain it, I collapsed on the bed with what sounded like blown speakers in my ears, drenched in sweat, finding it next to impossible to form a single thought, while feeling my heart bottom out on me. I felt intense pain but not from anywhere specific. It felt like, I was dying. Not figuratively, but literally. I felt like it was too close. Too real. For 15 minutes I laid there, too weak and disoriented to grab my phone that was just 2 feet away. And wishing I wasn't all alone.
This time was very different than the rest: no stomach cramps, no loss of consciousness, and lasting much, much longer with a reaction much more severe. Eventually I started coming out of it. I called my husband so that he could call 911 for me if I did pass out (not cognitively being with it enough to realize that if he called 911, it would be for a dispatch in the wrong state). After about 45 minutes, I felt stable enough to get off the phone. Despite being exhausted, I didn't dare close my eyes for the rest of the night.
All of these years I've never been able to pin point a trigger except for one time when I was about 30 years old and I had an endometrial biopsy (for what I now know is my luteal phase defect) which triggered my most severe reaction up to that time. But other than that, I don't know when it is coming or what provokes it. However, I do believe that the severe dizzy spells and this latest episode were caused by my pregnancies. Viable or not, I have the hormones in my system. And it's been too consistent with timing to blame it on coincidence. I also know that stress can be a trigger. I wasn't stressed when I was 14 years old or even when this thing landed me in the ER, but I am now- and I'm sure that doesn't help.
I will talk to Dr. D about it, but I'm not sure there is anything she can do. No doctors have ever offered any solutions, and quite honestly always seemed as if I was over reacting. I don't know what this is or what it means. For me. My future. And any future pregnancies, if there even are others. It just seems to be getting stronger. Or perhaps the triggers are stronger.
Reading this over it almost seems too fantastic to be true. But every word of it is real and honest. I'm terrified of this thing in me. My body is broken in so many different ways.