Postural Orthostatic Tachycardia Syndrome

Testimonial

Mary’s Story

Mary’s Story

“At POTS Care they look at why a patient has POTS, not just how to cope with or cover up the symptoms.”

Mary came to POTS care after two years of dealing with doctor’s that could not get to the underlying cause for her sudden onset of extreme breathing issues. We were able to locate and treat her underlying conditions, resulting in some immediate improvements. Her doctors came close to discovering her high intracranial pressure, but did not fully understand what they were seeing, halting further progress. Abnormal intracranial pressure is something we consider with every patient and are comfortable with this unusual presentation.

 

Interviewer: What makes POTS Care different from your expereince in working with other physicians?

 

Mary: At POTS Care they look at why a patient has POTS, not just how to cope with or cover up the symptoms. I looked at many other facilities before choosing this one. Most of the other places try using biofeedback or will try to tell you that it is all in your head, but not this place. The POTS Care team uses real science, looking in your eyes to discover abnormalities that other ophthalmologists and optometrists would most likely miss. Dr. Driscoll also orders many unique labs to help prove the diagnosis.

 

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

 

Mary: I was always told by my doctors that I just had POTS and this was the cause of all of my other issues, such as chronic migraines, nausea, muscle aches, fatigue, random rashes and bruising, and many more. Dr. Driscoll and her amazing team discovered that I had chronic inflammation and high intracranial pressure which was the root of my POTS. I was on Propranolol and fludrocortisone (a salt pill to increase blood volume) for over two years, prescribed by my cardiologist for my tachycardia. POTS Care informed me that these pills were actually making me worse, even while they were keeping my tachycardia under control. This place made me realize that POTS has an underlying cause and not every patient benefits from the normal treatments.

 

Interviewer: Would you like to share anything about your struggles or journey before coming to POTS Care?

 

Mary: In October 2014, the night before going to a Katy Perry concert, I started having problems breathing out of nowhere. I used my inhaler that was given to me for my “exercise Induced asthma” and it did absolutely nothing. My dad drove me to my doctor’s house for help, but she could not help me since I obviously was not having an asthma attack. I was forced to skip the concert that I had been looking forward to for half a year. This continued on for a few days until my chest pain was getting unbearable. I asked to go to the ER because I knew something was not right. They took x-rays and said nothing was wrong and my vitals were only a little above average when sitting. They discharged me. As soon as I got out of the hospital doors, I felt it again. My legs were shaking out from underneath me and I could not catch my breath. My mom, an ER nurse, grabbed my wrist and checked my pulse. She freaked out because it was way too fast for her to count and attempted to bring me back to the ER, but I refused. We followed up with a pulmonologist, like the ER told me to do for my “asthma”, who then laughed in my face and said that I have never had asthma and my problem was obviously cardiac. A week passed and I was back in the ER. I had been throwing up every time I would cause my heart rate to go up. The hospital still had not hooked me up to a heart monitor, so my mom did. My heart rate was 120bpm just laying down, if I sat up it would shoot up to 160bpm, and standing was 180+ bpm. My mom was mortified and called the doctor to come help me. He blamed it on anxiety. I followed up with a cardiologist who conducted a poor man’s tilt table test on me and diagnosed me with POTS. By December 2014, I began having daily debilitating migraines. I would have to lay in bed all day in a dark, quiet room. Neurology had no explanation. I went to an ophthalmologist who said that I had increased fluid on my optic nerve sheath but no swelling of my optic nerve and I constantly failed my field vision tests. He ended up discharging me as a patient after only 6 months because he could not find out the underlying cause. I soon began developing severe GI issues, eye pains, severe muscle pain and even tremors. All of my doctors had pretty much given up on me. I was officially labeled as a zebra patient. When I came across POTS Care in early 2017 I regained hope. I was there May 8-11, 2017. On the first day, Dr. Driscoll told me that she already had the prognosis of an inflammatory condition. I was told that I could get better, and live a more normal life. I hope that one day I will be able to help POTS patients the way this clinic has done for me. Also, I get to see Katy Perry in January 2018!.

 

Interviewer: Do you have anything you would like to say to others that may be thinking about coming to POTS Care?

 

Mary: If you are considering POTS Care, DOOO ITTTT!!! Yes, it can be a money issue or trust issue for some, but if you want an answer, come here. I was not so sure about this place at first because none of the patients seemed to be like me. I felt like I was just broken. Dr. Driscoll and her team are the kindest and smartest you will ever meet. Book your appointment now!

 

Interviewer: Thank you so much for sharing your story, Mary! You were a delight!.

 



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