Postural Orthostatic Tachycardia Syndrome

Testimonial

Katrina’s Story

Katrina’s Story

“My insomnia has been terrible for years…, (but this week) I have slept for at least eight and a half hours each night… I can tip my head back now…I can also think again in ways that I haven’t been able to in several years.”

Katrina is a real patient who asked that we protect her identity (from an abusive ex). Katrina came to POTS Care with disabling orthostatic intolerance, IBS, pancreatic insufficiency, and additional diagnoses of EDS, POTS, and toxic mold exposure. A single mother on disability, she leaves with dramatic improvement in bowel function, pancreatic function, decreased brain fog, and a solid plan for continued resolution of her symptoms. She looks forward to returning to work soon.


INTERVIEWER: Katrina, can you tell us a little bit about your POTS journey to date?

PATIENT: : I did not know I had POTS for a long time, but I knew that there were a lot of things wrong and it took me a very long time to get a diagnosis. I was a fully functioning superwoman prior to having POTS and became essentially a couch potato. I spent my days lying on the couch, unable to move, unable to think, unable to focus and I became an entirely nonproductive member of society. As a result of the POTS, I had to go on disability, change my entire life and lifestyle, stop working and I was unable to care for my children, live alone, or participate in any extracurricular activities.

INTERVIEWER:Can you tell us about some of your most debilitating POTS symptoms?

PATIENT:: My most debilitating POTS symptoms include the orthostatic intolerance, which is the inability to stand up without becoming short of breath because it means that I cannot do the dishes or take a shower or go to work or get dressed, or take a walk or go to the grocery store. I cannot think, I cannot discern, I cannot organize, I cannot sort, I cannot focus on what anything says, I cannot read. The other effects, which came from the POTS included malabsorption, which has triggered seizures, has loss of vision, shortness of breath, loss of hearing in one ear, loss of my hair and loss of the ability to regulate my temperature. My hands and feet and nose are always cold, even now.

INTERVIEWER: We would never expect POTS to reverse in a week, but did you get some immediate symptomatic relief while you were here?

PATIENT: Yes! First, I can sleep. My insomnia has been terrible for years, only sleeping a couple of hours at a stretch and in the last three nights since starting the medication prescribed, I have slept for at least eight and a half hours each night, fully, never waking up once. I also can tip my head back, now that the pressure is starting to relieve. I can also think again in ways that I haven’t been able to in several years.

INTERVIEWER: We are so happy to hear that. Do you feel like you have a better grasp on your illness now?

PATIENT: Yes. I understand much better what is really happening in my body that no other specialist doctor has been able to identify and coalesce. I am very grateful because I did not understand it and now I am at a level that I can understand and I have treatments that will address each specific layer of this incredibly large onion.

INTERVIEWER: Do you feel like the care you received at POTS Care was individualized?

PATIENT: Yes. Absolutely, I was the only patient for a week and I got astronomical amounts of attention. All my questions got addressed and answered and then I have never spent so much time with a doctor in my life except for in school.

INTERVIEWER: Lack of validation is one of the most difficult part of the POTS journey; do you think the care you received at POTS Care was different than previous care you received?

PATIENT:Tremendously different. No other healthcare provider that I have seen, and there have been numerous, has been able to identify and connect the dots between all of the various symptoms. Dr. Diana’s research and synthesis of this condition is brilliant and unbelievably validating because it makes every symptom make sense. Because Dr. Diana’s synthesis of this condition is so broad-spectrum, she is able to identify and validate each of the seemingly innumerable symptoms that occur and put them all into a solution that makes sense. It is unbelievably validating because suddenly I have answers to all these questions that I have had for years and could never make sense of all these symptoms, which no other doctor ever has time to listen to beyond 15 minutes, when you only get one symptom addressed and you have 93.

INTERVIEWER: you recommend that others come to POTS Care and why?

PATIENT:If you have POTS and are enormously disabled by it and whether you have tried salt, fluids, beta-blockers, exercise, compression hose, or even if you have it, but you are disabled by them and you believe that those other things have not been helping to other people, you should come here. If you have been invalidated by the traditional medical establishment, you should come here. If you want to get your life back, you should come here.

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



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