Postural Orthostatic Tachycardia Syndrome

Testimonial

Annie’s Story

Annie’s Story

“I think this is the first time that anyone that has tried to help me has treated me like I am not crazy. It is hurtful after a while when you get looked at like you are just a lunatic and it is hard to keep going because people just think that you are making it up or that you are faking or that you are just sick in the head.”

Annie came to POTS Care after struggling with her illness for 3 years. Her diagnoses included POTS, IBS, CFS, MALS, and Fibromyalgia. Annie also suffered from pseudoseizures and vomiting blood. She had seen numerous specialists, and had been to Mayo. After a thorough evaluation, we were able to locate the underlying cause of Annie’s suffering. She leaves POTS Care with a treatment plan in place, and renewed hope for the future.

INTERVIEWER : You have been through a lot, haven’t you? Can you share with us what your illness has been like and how it affected your life?

PATIENT: I have never been that healthy, always in front of people I have looked healthy and everything, but I think that my whole life, I have always had problems with my stomach, but I always pushed through it. I went from running 8 miles a day and scoring goals in soccer and spiking in volleyball, to my bed, 24/7 vomiting. It all started when I got mono. I tried to go to school and when I was in high school and that was when the passing out started. I got through the last two years of high school on online classes and luckily I have a couple of great people in my life that stayed, but it has been awful. I went to Mayo Clinic and the whole time there I was passing out and I was throwing up and they just kept telling me you are not sick, do not think that you are sick, do not talk about your illness, you are not sick and that was probably the biggest slap in the face and I am not a fan of Mayo because of it. Then it eventually progressed to me having pseudoseizures and vomiting blood.

INTERVIEWER: Do you feel that the care you received here at POTS Care was different than previous care you have received?

PATIENT : Yes. I wish I could just spray paint yes all over the walls right now because and this is sad, but I think this is the first time that anyone that has tried to help me has treated me like I am not crazy. It is hurtful after a while when you get looked at like you are just a lunatic and it is hard to keep going because people just think that you are making it up or that you are faking or that you are just sick in the head.

INTERVIEWER : Were we able to identify like things that people have missed before?

PATIENT : Yes. I have never been diagnosed with gastroparesis before this. I have had so many different even small things that you find in the blood test like the CO2 levels and all that were so low or my high cholesterol, which was like way, way out of this world high. Nobody has been able to find any of that and now that it seems so small I feel like doctors overlook it, but it can cause a lot of symptoms. Dr. Driscoll also believes that I could have high intracranial pressure. She told me that I have like thousands of tiny blood clots all throughout my body and even normal people get those, but their bodies are able to break them down and mine is not.

INTERVIEWER : Do you feel like you have a better grasp on how to handle your illness after leaving here?

PATIENT : Although it is a lot of information and a little overwhelming, at least I finally have a roadmap that I can follow and get to where I want to go.

INTERVIEWER: Thank you for talking with us today, Annie.



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