Katie’s Story

“Dr. Driscoll took the time to listen and to really get to the bottom of what is causing my body to have POTS was something I had not ever experienced. Dr. Driscoll believed that I had been wrongfully labeled with a mast cell disease, and needed to substantially change my treatment.”

Katie came to POTS Care after suffering for 5 years with her illness. She had been previously been diagnosed with POTS, EDS, and MCAS, and did not respond to traditional POTS/MCAS treatments. We were able to determine that Katie’s episodes were not due to MCAS as her doctors presumed. This allowed us to shift her treatment dramatically to allow recovery. About a month after Katie’s visit at POTS Care, she answered some questions to update us on how she has been feeling lately and her thoughts regarding POTS Care…

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

KATIE: In 2011 my health changed drastically. I didn’t understand what was happening to my body. I had experienced seasonal allergies and even anaphylaxis to medications, but this was different. For some reason I was very fatigued all of the time, and I began noticing my heart pounding when I stood up. After seeing several doctors it was determined that I had Mast Cell Activation Syndrome, even though none of the tests for this disease were positive. When I mentioned my heart pounding I was sent to Vanderbilt’s Autonomic Clinic and after Autonomic Function Testing I was diagnosed with Hyperadrenergic POTS. I was put on medications to treat mast cell disease and also medication to treat the POTS. In 2012 I had a reaction to the POTS medication, and was given a shot of Kenalog which sent me into a living nightmare. I began having increased heart rate and blood pressure constantly, severe migraines, severe stomach pain, bone pain, I lost 20 pounds that I didn’t need to lose, I lost over half of my hair, I was very fatigued and I had muscle weakness. After the reaction to the Kenalog it seemed like my body just couldn’t recover,and I began having more issues with the Hyperadrenergic POTS. My body began having reactions to chemicals which would cause my heart rate to sky rocket, my face and neck to become bright red and my blood pressure to increase. Eventually I had to resign from my job as a School Speech Therapist, because so many scents were causing reactions. I was told by my doctors to wear a protective mask, premedicate with extra antihistamines if I was going to go out where there would be a possible expose to fragrances, and remove myself as soon as I smelled anything. I did my best to protect myself and eventually I decided the best thing to do was to just stay home, or only go to places that I knew would be safe for me. I began living in fear of a reaction, and for the first time in my life I would say I understood what anxiety felt like. This was not like me! I wasn’t afraid of anything (well, maybe spiders and snakes). This illness has not only changed me physically, but it has had an impact on my mentality also.

INTERVIEWER:Were we able to identify any underlying problems contributing to your illness that others have missed?

KATIE: Dr. Driscoll had a fresh outlook on my illness and during her thorough evaluation she identified several underlying problems that were contributing to my illness. Lab test revealed vitamin deficiencies, inflammation, and some hormone issues. More than anything that was revealed during all of the testing, Dr. Driscoll believed that I had been wrongfully labeled with a mast cell disease, and suggested that the reactions I was having were more than likely related to the Hyperadrenergic POTS. She described in detail what her body would do during a flush and suggested that it is was very possible that my body was being triggered to have a POTS flushing episodes, and she told me that as the inflammation began to calm down in my body the flushing episodes would calm down too.

INTERVIEWER:How do you feel about the science we used to help you?

KATIE: I feel that the science you used to help me was very thorough, and I believe Dr. Diana will one day be famous and in the medical journals for the cure for POTS! Go Dr. Diana Driscoll!!!

INTERVIEWER:Do you feel like you have a better grasp on how to heal from your condition now?

KATIE: I do feel like I have a better grasp on how to heal from my condition. Dr. Diana has me on several supplements, I have elevated the head of my bed, and I have prescriptions to try if needed (even though I more than likely do not have mast cell disease, I do have a history of having reactions to medications, so we are trying the supplements alone to see if the inflammation in my body will calm down without the medications). I am going to be Dr. Diana’s first patient to attempt to get well by using only the supplement she developed along with others she has prescribed. I believe my body will get well.

INTERVIEWER:What would you like to say for the folks considering coming here?

KATIE: Please do not hesitate to make the trip to the POTS Care clinic. It is so worth the time and money. Dr. Diana has given me hope for a much better future. Something no other doctor could give me. I was very impressed with Dr. Driscoll and her entire staff! They are all very professional and kind. When talking to Dr. Driscoll is evident that she is very intelligent and knowledgeable about POTS and many other conditions. The fact that Dr. Driscoll took the time to listen and to really get to the bottom of what is causing my body to have POTS was something I had not ever experienced. Dr. Diana’s personal experience with POTS has driven her to dig deep and figure out what is really going on to cause POTS, and then to search for ways to treat the true cause. All of the other doctors I have seen only wanted to treat the symptoms. I was anxious about going to the clinic, because I have sensitivities to chemicals (perfumes, colognes, air fresheners, cleaning products, etc.), but they assured me that no one in the office would be wearing any kind of fragrance and the office would be fragrance free, and they were true to their word. I was safe.

INTERVIEWER: How have you been since your visit at POTS Care?

KATIE: I have had two exposures to chemicals and although my heart rate and blood pressure went up, I did not have to use any extra medications. I trusted Dr. Diana when she said she thought it was just a flush and not a mast cell reaction, and I just let the flush run its course. My family and I can already tell a huge difference. Within two weeks of my visit with Dr. Diana I began to feel better, and with each day I continue to see improvements. I even started riding my recumbent bike 8 days ago, and so far it is going great.I am having more and more days where I am able to say, “Hey, I feel normal!” This is a huge improvement, because over the last five years I would only have fleeting moments of feeling normal.

INTERVIEWER: What else would you like to share with others today?

KATIE: you would like to get to the bottom of what is causing your POTS, and if you want to start feeling better, then please make an appointment at the POTS Care clinic. You will not be sorry.

INTERVIEWER: Thanks for talking with us today, Katie.