Diagnosis (part two): Tilt Table Trauma
So, in July I had my first tilt table test. I was told not to eat or drink anything four hours before and that was all the information I was given. I didn't look up what the test was because I have done lots of different testing and thought it would be similar. I walked in the room and the nurse asked me questions and walked me through the procedure. She told me that I would lay down and be strapped to the table then they would tilt the table to an upright position and monitor my vitals and symptoms. The test began and the second the table tilted upwards I began to feel awful. About ten minutes into the test of feeling extremely lightheaded, the nurse administered nitroglycerin under my tongue. After this I began excessively sweating, extremely nauseous and felt very faint. I don't remember much else. I passed out and woke up to the nurse giving me water and telling me to relax. This experience is extremely traumatic. For someone who is extremely symptomatic standing up, it was really hard to be strapped to a table as they wait for your body to loose consciousness. After a few minutes I was told that I had a vasovagal response and that my diagnosis was vasovagal syncope also known as neurocardiogenic syncope. Neurocardiogenic syncope or NCS is fainting that is the result of a stressful trigger. This is a reaction by the body to a certain trigger which leads the blood pressure and heart rate to suddenly drop causing a fainting spell.
This diagnosis was extremely frustrating to hear. While I can recognize that I do have episodes to VVS or NCS on occasion, that did not explain the chronic fatigue, lightheadedness and pain I was going through everyday. In addition, I would pass out as the result of no trigger while doing a simple task like walking to the bathroom. I decided to see an electrophysiologist in my area who specialized in the electrical system of the heart. This doctor was one of the worst experiences I had through the whole process of diagnosis. I explained to him everything I had going on in extensive detail. His response was to tell me to keep drinking electrolytes and get compression tights and there was nothing else to do. This was pretty much my breaking point. I felt like no doctor was listening to me and I knew there was something seriously wrong with me.
I decided to call the Cleveland Clinic and schedule an appointment with one of their cardiologists that specializes in syncope. I was lucky to receive a cancellation appointment within the same week I had called. My father and I drove to Cleveland the following day for the appointment. I cannot speak highly enough of the experience I had at the Cleveland Clinic. I saw Dr. Courson who genuinely took the time to listen to my entire story and all of the symptoms I was experiencing. He was extremely thorough and told me he believed I had POTS right away. Unfortunately, this meant another tilt test.
When he told me this I broke down and cried right in front of him. Dr. Courson was understanding and reassured me that this was something I needed to do to get a proper diagnosis. This tilt test was not as bad as the first time around even though I did pass out again. The test revealed that I had POTS and I finally received my diagnosis after 5 months of struggling with no answers.
One tip I can give anyone is to be an advocate for yourself. I am so grateful that I decided to call the Cleveland Clinic because without Doctor Courson, I would still be nearly bed ridden with absolutely no answers. While it felt like forever to get my diagnosis, some people go years without any answers. That is a major reason why I have created this blog to spread awareness! Nobody deserves to struggle without answers.
https://www.dysautonomiainternational.org/page.php?ID=180
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