Friday, July 22, 2011

POTS Syndrome and Faith, Part II

I think I left off when I finally got to meet my amazing cardiologist.

I had such high hopes of going to this cardiologist. I got in there and laid down on the table in fetal position because I was too dizzy to really sit. He came in and we did the usual of going over my history, lab results, and everything else the other doctors had done. Then he did a routine vital exam, which included my sitting and standing heart rate. My sitting heart rate was around 98 and my blood pressure was on the low side of normal. When I stood, my heart rate rose to the 140's, and my blood pressure dropped to the 90s. I was holding on the the edge of the table to stand and just praying that I didn't have to stand for much longer.

When Mr. Bee and I talked to him about the results, he was positive I either had POTS Syndrome, Neurocardiogenic Syncope, or Vasovagal Syncope. The only way to tell would be to do a Tilt Table Test.
I was put on a medication to help me with my dehydration and also a beta blocker for my heart. The beta blocker didn't work for me - within the first day my blood pressure was so low that I couldn't move off of the couch. I couldn't walk and had to crawl on my hands and knees with my head down to make it to the bathroom. It was not a good time for me. I remember Mr. Bee being so worried and wanting to take me to the hospital, but I told him I didn't think I'd make it in the car. He had asked me what I meant by that, and I didn't want to scare him and tell him I thought I'd die in the car.

I was on a 2-3 month wait list for the Tilt Table test. When the day finally got there, I first had an echocardiogram. The doctor was pretty sure my heart was ok, and that I just had a condition that was causing all of the issues. The testing was going very well until the technician started looking worried, which made me worry. When someone is looking at your heart and they tell you they're having issues seeing something and they need to call the doctor, you worry. The other doctor performed a Bubble Test, where they inject air into your veins to see your heart valve function. It turned out that I had a PFO (Patent Foramen Ovale). When you're in the womb there is an opening between the left and right chambers of the heart. Once you're born, this automatically closes up, except for some people (like me). About 20% of people have this issue and don't even know. Fortunately mine is relatively small and does not require any surgery, but I'll have to watch it as it can cause complications later in life.

As if that wasn't fun enough, my Tilt Table test was a few hours later. I already felt so sick and was so stressed out from the earlier diagnosis that I thought I'd pass out before I made it on the table. They actually did two tests at the same time, so I got a neighbor.

During the test they basically make you stand upright while you're strapped onto a table with tons of wires attached to your body. They started at a 60 degree angle, so I was not completely upright. In under 30 seconds, I was convinced I was dying. I was sweating, shaking, and my heart felt like it was going to come out of my chest. Before the two-minute mark I hadn't completely passed out but couldn't see, my heart rate was above 200 and my blood pressure was unreadable. Fortunately that was all my doctor needed to see. They put me down and let me recover with IV fluids. My neighbor was not as lucky. He was up for maybe 15-20 minutes standing up. All I remember is he was talking to my doctor about the movie "Pet Semetary". I got freaked out, because why would you talk about horror movies at a cardio's office? Just then, his heart stopped. They put him down and started resuscitating him. He wasn't coming to, so they gave him a shot in the heart and he started breathing again. Meanwhile I was laying there watching all of this go down and freaking out. Basically, that guy had just Pet Semetaried in front of me. I was not willing to wait around for him to go all evil and start killing things.

As if that day wasn't tough enough, Mr. Bee and I were planning to try and have a baby that month pending my test results. The day I got home from the hospital, the book "Taking Charge of Your Fertility" and my basal thermometer showed up. I bawled my eyes out. I was so sick I couldn't take care of myself, I couldn't have a baby, and I was convinced I was going to die. All of the medication I was taking gave me horrible side effects and didn't help. The world seemed totally against me.

The Tilt Table test had overwhelmed my nervous system so much that I was not able to go anywhere but doctor's appointments for the next 4 months. That meant no full-time work, no volunteering, no nights out with my friends. You'd think that my home-boundness could be useful because I could read, learn to play piano, knit, or do something useful. When you're sick, you're too tired to concentrate. I'd lay there with the TV on and not be able to pay attention to anything, and go in and out of sleep. It was a miserable way to live, and being a normally active person, I didn't want to put up with it anymore. So I didn't.

Part III coming soon!


  1. This is terrifying, but I have to admit I chuckled a bit at the pet cemetery part. I hope that guy ended up being alright and Im so glad you don't have to live like that anymore!

  2. This sounds so horrible and scary!! I'm so sorry you went through this. And Pet Semetary is the scariest movie EVER. Well, at least it was when I was 13. Just hearing the title sends shivers up my spine.

  3. You're describing some very challenging days. I just came across your blog via twitter. I am very anxious to hear more and in the meantime, you are in my thoughts and prayers!

  4. so, you're basically my new hero for being so strong and making it through all that craziness!! and i do NOT blame for you avoiding pet cemetery neighbor, yikes!!

    my hubs has Neurocardiogenic Syncopy, but thankfully his is only triggered by medical as long as i watch grey's anatomy on my own, he does okay =)