by Lori Rice

When I was fourteen and in ninth grade, I was walking down the hallway, talking to a friend when he looked at me and said, “Your pupils look weird…they’re different sizes!”

I called my mom right after I had the school nurse look at them because I was completely freaked out.

She called the pediatric neurologist who got me in for an emergency appointment and an MRI the day after that (because he assumed I had a brain tumor). The MRI came back clean, and the neurologist told me I had migraines and put me on Amitryptiline. I kept getting awful migraines, but at least I knew I wasn’t dying of a brain tumor or an aneurysm.

At fifteen, I started having black outs while taking showers. I would lift my arms to put shampoo in and lose my vision, get extreme extremities weakness and get super nauseated. I had no idea what was going on– and I was scared to death. I told my neurologist and he said that he thought I may have been having strokes, so he did tests and decided that it was just vasovagal syncope.

They changed my migraine medicine from Amitryptiline to Depakote because I was getting a lot of breakthrough migraines and that made me so much worse. My hair fell out, and I was extremely emotional, so they changed me to Topamax, which worked great and I was on that for four years.

Also at fifteen, my periods had gotten significantly worse. I’d had bad periods since I was 10, but the pain, bleeding and weakness were really worse as the months went on. In fact– I was missing a week of school every month, and I couldn’t do anything but lay on the couch. I went to an adolescent medicine doctor who told me I had dysmennorhea and put me on Ortho-Tri-Cyclen. I was like a new person on that.

My period didn’t stop me from living anymore and I didn’t feel so weak. At 17, they changed me from Ortho-Tri-Cyclen to Yasmin due to breakthrough bleeding that I had for over three months. I was still passing out in the shower and missing days of school for that, and I was constantly thirsty and exhausted.

When I graduated from high school in 2005 I was doing okay. Instead of going to college, I found myself working a full-time job, and I thought that maybe the worst of everything was over. Then my stomach started acting up. Between July 2006 to October 2006, I had lost 40 pounds. I was having trouble eating and I had awful heartburn. I kept having what seemed like panic attacks, but they would happen when I wasn’t nervous or upset. I’d just be laying there watching TV and BAM!

My PCP sent me to a psychiatrist who said I had generalized anxiety disorder and that I was bipolar. I argued with her because I didn’t feel nervous or depressed at all. She put me on Seroquel so I would sleep and sent me on my way. I stayed on the Seroquel for about four months. When I was 19, and finally went to a new doctor, I begged her to take me off it because I didn’t need it and it was making me a zombie. I was sleeping 18 hours a day on the days I didn’t work, and on the days I did work, I always felt completely out of it. I was still losing weight. The day after my 20th birthday in November 2006 I had an EGD with biopsies done and was told I had GERD.

I was placed on Prilosec and I avoided soda and caffeine like the plague because they seemed to make my stomach feel worse. I started eating a little more, but still not a lot. I stopped losing weight though, which was their goal.

I was fine from 20 until I was almost 22, and then I started feeling sick again.

I couldn’t eat much more than a bowl of cereal and a few pieces of toast everyday. Every once in a while, I’d get some white rice in. I lost 40 pounds again. In 2008, 11 days before my 22nd birthday, I had my face and arms go numb while I was watching the Presidential election. I was at my ex’s mom’s house and I told him we needed to leave and go home. I was hoping the numbness would go away, but it just kept getting worse. I asked him to take me to the ER and he did. They gave me fluids and told me that they thought it was just dehydration and sent me home.

The next day, we were at his mom’s house again and I had the same thing happen, except this time after doing laundry. His mom took me to the ER, and they gave me fluids again and told me I was fine. I was sick until May 2009 when it just stopped on its own.

I had no issues until I was 25. I finally went to the cardiologist because I was scared since I was having a rapid heart rate and shortness of breath. He did a ton of tests, and the one that diagnosed me was a tilt table test. He finally concluded that I had Postural Orthostatic Tachycardia Syndrome (POTS), which is a syndrome associated with Dysautonomia. This explained all of my symptoms as dyasutonomia–the dysfunction of the autonomic nervous system, can affect multiple organs like the GI Tract (explaining my eating issues and GERD), the nervous system (explaining my migraines) and heart irregularities that are commonly misdiagnosed as panic attacks.

It took me 11 years to get the POTS diagnosis, but I’m finally getting answers.

5 thoughts on “Constant Misdiagnosis Leads to An Answer: Postural Orthostatic Tachycardia Syndrome”

  1. Tanna says:

    Did you ever get joint pain? or shaking & numbness in your hands?

  2. Amy Schaaf says:

    It’s nice you share your story. I have pots and yours sounds exactly like mine. I was awful in high school, improved enough at 20 and went to dental hygiene school for two years and now I just got bad again at age 23! I dont pass out but black out. I get these panic attack feelings, sometimes out of no where and often when I stand and my heart rate is going crazy. My stomach burns and feels like theres pressure above my belly button. I also get bad cramping in my uppper back, shoulders/neck from lack of blood flow along with cold hands and feet.

  3. Elana Greenberg says:

    Hi! My name is Elana Greenberg. I am currently writing a research paper on psychiatric treatment for patients with non-mental chronic illnesses. I also have pots. I was wondering if you would be willing to do a phone interview with me for my paper about the negative affects of the psychiatric treatment you went through? Please let me know.

  4. Krista says:

    Newly diagnosed with POTS. Went through 2 years of various diagnosis until I finally figured out myself that it was all due to my heart rate while standing. Weird how doctors never do vitals while standing. It could have saved me time wasted in counseling, treatment for other things like fibromyalgia and chronic fatigue. Now I am having to leave my teaching job. So sad.

  5. orf.at says:

    Mit einem Tragetuch gibt es die verschiedensten Möglichkeiten das Kind bei sich zu haben.

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