Postural Orthostatic Tachycardia Syndrome

Testimonial

Taylor’s Story

Taylor’s Story

“I would say even three weeks after I came home it became a lot easier to get out of bed, I was not dizzy and I did not have to sit in bed for 10-20 minutes before I tried to get up and move around. I am excited to be able to get back to college life!”

Taylor came to POTS Care with extreme and chronic fatigue, dizziness and lightheadedness upon standing, abdominal pain with nausea and constipation, difficulty with sleep, and joint pain. Taylor had seen countless specialist, and had even been to Mayo Clinic.


Most of her symptoms began after suffering with mononucleosis in the 5th grade. Her medical evaluation was extensive and included an evaluation for POTS at Mayo Clinic, rheumatology evaluations, gastrointestinal studies, and psychological studies. Many of her symptoms were attributed to her spinal stenosis and abnormalities of her neck vertebrae. Taylor’s medications were not eliminating her symptoms and her fatigue was so severe that she had to discontinue sports, and even drop out of college. Taylor and her mother came to us for help. Taylor shared her thoughts with us after receiving treatment at POTS Car

Interviewer: It’s so good to talk to again, Taylor! Can you please tell us if you noticed any immediate changes in your symptoms while you were at POTS Care?

Taylor: Yes, I noticed with the treatment that I did not need the other medication, Mestinon, to help with my digestive system. I was able to completely go off of it. I also went off of Florinef the same day!

Interviewer: Taylor, it has been seven weeks since you’ve been to POTS Care. Can you tell me a little bit about how your POTS symptoms have been since we last saw you?

Taylor: I would say even three weeks after I came home it became a lot easier to get out of bed. I noticed that I was not dizzy and I did not have to sit in bed for 10-20 minutes before I tried to get up and move around. I could get out of my bed and go to the bathroom right away and I did not feel like I was going to fall over or was unsteady. My brain fog has actually gotten better, and its especially evident at school. I do not need extra time for tests anymore, and I can follow along with what is going on in class. Before, when people were talking I could not catch up to what they were trying to say. Also, my heart rate is not racing like it used to anymore, which is really great. My fatigue has definitely improved, and the treatment is definitely helping to keep my bowel movements more regular.

Interviewer: What do you feel was most helpful to you during your visit at POTS Care?

Taylor: I liked that they took the time to review my background information and that they were not just trying to put a Band-Aid on my symptoms. I liked that the care providers knew more about the condition than I did. I liked that they had reasons for why they were treating me the way they were, and they were not just saying “well this works for some people, we don’t know why, we are just going to try it and see what it does for you.” That was really reassuring and it made me feel a lot better about the treatment that I was doing.

Interviewer: Taylor, do you feel like you have a better grasp on your condition since coming to POTS Care?

Taylor: Yes! Before I came to POTS Care there were a lot of inconsistencies with what I was told, how I was supposed to feel, how POTS is supposed to progress, and how I was experiencing it — and it never made sense. Since going to POTS Care I feel like it makes more sense. What Dr. Driscoll said were my underlying problems fit a lot better with what I was experiencing than when I was at any of the other places.

Interviewer: Do you feel like you were treated with empathy and respect during your visit at POTS Care?

Taylor: Yes, that was another great aspect of coming to POTS Care. I think a really great benefit is that Dr. Diana had experienced POTS herself. Everyone was so nice and believed me when I was saying how I felt and I did not feel stupid.

Interviewer: Would you recommend that others come to POTS Care?

Taylor: I would strongly recommend people coming to POTS Care. As far as I know this is the only place where they will look at the reasons behind why you are feeling the way you are, and they will not just put Band-Aids on each symptom — they will try and connect the dots. Also, it is very evident that the people who are trying to help you care, and that is really nice.

Interviewer: It is great to hear about all of your improvements, Taylor. Thank you so much for your thoughts.

Taylor: Thank you!



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