Thursday, October 18, 2012

Standing still, Day 3

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.


  1. Oh my gosh this sounds so incredibly scary! I'm so sorry that you keep having these episodes. I do not suffer from episodes like these, but I hope that your doctor can help you!!

  2. How utterly terrifying! I'm so sorry you were all alone for that last awful episode. :(

    I've suffered from anxiety attacks for a good portion of my life and I've never experienced anything close to what you've gone through, so I'm not buying the anxiety explanation either.

    I wish I knew more about medicine so I could offer you a clue about what might be going on, or even what type of doctor to see. If it is vasovagal response, I'm guessing you would see a cardiologist for that..? At any rate, I really hope that your doctor takes this seriously and tries to get some help for you.

  3. Wow! I've had this happen to me! It's quite different, in that it has never resulted in a trip to the hospital, and it's only happened 2 times. But I have had two episodes of fainting, that were preceded by a sudden onset of *the most* horrific stomach pain I have ever experienced, which causes me to hyperventillate, sweat profusely, see stars, and completely lose consciousness and fall to the floor. The first time it happened, I was totally caught off guard. The second time it happened, I knew it was coming because of the familiar "prodrome" of the stomach pain. I went to the Dr the day the first episode happened, and he found no medical reason for it. He thought it was anxiety induced. Both times it happened to me (years apart) I was going through some very stressful stuff. So I think for me it could be stress induced. Sorry you're having this experience! So scary!!!

  4. This is horrible, and even worse that you don't have answers for it. I am sorry you are going through all of this...

  5. I'm totally not a doctor, but I do work in the mental health field and I think if everything else medical has been ruled out you should consider the thought that these might be panic attacks They generally feel very real and physical symptoms, much like you've described. And, you've been under a great deal of stress. Perhaps it would help to start talking to a therapist about your stress. It's always necessary though to rule out any medical reason that could cause your symptoms. Infertility can cause a great deal of stress! Take care of yourself!

  6. I've had several episodes of fainting after trying to throw up (but not nearly as severe as you describe) that were caused by multiple attempts to draw blood or give me an injection. It seems that sticking me repeatedly with a needle in certain places triggers this response. It is not psychological and has nothing to do with stress or anxiety. The last time it happened (during a migraine infusion) the nurse became quite agitated and called in an attending physician. I had to wait an extra half hour before beginning my infusion.

    Good luck! I hope you can figure out the trigger b/c this problem sounds like it is causing panic and anxiety in itself.

  7. Wow, I've never heard of such a thing! It angers me so much for you that your doctors have been too dismissive of your condition in the past. I've been there, but with things that are much less serious. For years - I'm talking like 15 years - I complained to many a doctor about my severe cramps and heavy bleeding that I would get with every period. All but one dismissed my symptoms as "normal." Seriously, this came from many ob/gyns and even a RE at one point. Finally, a doc at an urgent care clinic suggested to me as an afterthought that I might have endometriosis. It's maddening how we pretty much have to diagnose ourselves and be our own advocates. Praying for you that you finally get some answers to what you and your mother have experienced and that someone takes you seriously.