Karen’s Story

“I was treated with the greatest respect as a real human being by the entire team at POTS Care. They listened intently to every little detail I gave them”.

 

Karen came to POTS Care after being continuously dismissed and misunderstood by  numerous doctors from the top hospitals across the country. She suffered for many years and wanted to find answers, however, she felt totally helpless and alone. She longed to  get back on the path to better health and that is when she came across POTS Care which gave her hope for a better life and a brighter future. 

 

Interviewer: Hello Karen, thank you for taking the time to answer some questions for us. Is there anything you would like to share with others regarding your experience at POTS Care?

Karen: It was an extremely worthwhile, and validating experience for me to have Dr. Diana Driscoll and the Pots Care team review all my medical records and spend extensive time with me over 4 days. They were able to observe me at different times of the day; when I was refreshed and when I was fatigued. Therefore, they were able to witness many of the various symptoms that I have that come and go for no rhyme or reason.

Finally, SOMEONE knows what I am going through…mentally and physically with POTS. Dr. Driscoll is the first person I have ever met that had POTS and recovered from it. Dr. Driscoll used real science, research, and non-invasive testing to find the underlying cause of my POTS and get me back on the path of better health. I now understand how my multiple diagnoses are all interconnected, and a real medical treatment plan is now in place. Some of my diagnoses are not curable, but they can be managed for me to be a healthier and functional 59-year-old. The trip to POTS Care in Colleyville, Texas was definitely worth it!

 

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

Karen: YES, YES, YES! 3 different neuro ophthalmologists from two different “TOP” hospitals in Ohio never identified, discussed, or provided any type of treatment plan for the Vascular inflammation/disease that was present from the very beginning of my illness in all my medical/examination records…including my eyes. Just in my eyes alone, the chronic inflammation causing dry, painful eyes, fluctuating blurry vision throughout the day, optical migraines, and temporal headaches…which resulted in a temporal artery biopsy that the surgeon even noted that my artery was extremely small. However, nothing was ever discussed with me about vascular disease!

3 different primary care doctors and a gastroenterologist missed the vitamin/mineral deficiencies, malabsorption issues because my labs were “just slightly elevated” and dismissed the extreme mental/physical fatigue, urinary/bowel issues as “ruminations” of aches and pains. Two different Neurologist from different hospitals missed intracranial hypertension without papilledema because they were only concerned with the MS-like symptoms and since the MRI’s were negative for demyelination, they did not look any further regarding my symptoms. 

 

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

Karen: I was having intermittent strange “transient blindness” episodes immediately after getting out of bed. I explained these episodes to a neuro-ophthalmologist, ophthalmologist, and primary care doctor and was told I was getting older and need to take my time getting out of bed in the morning. I finally told the neurologist and he ordered the tilt table test that affirmed the diagnosis of POTS. I never, ever heard of POTS before. At this time, I was 58 years old but felt and moved like a very ill 85-year-old. The treatment plan they gave me for POTS was even more discouraging! Drink lots of Gatorade (more electrolytes) and drink/eat food with lots of salt. Do yoga and biofeedback. THIS…from a “TOP” leading hospital in Ohio. Does anyone take me and my health seriously?

Once Dr. Driscoll compared all my medical records and was able to point out the normal vs abnormal, and how these were present when my symptoms first started…it was very clear to me, that my doctors who stare at the computer screens, do a quick examination, and say “you’re fine” are just pushing as many patients as they can through their doors, because I’m just a number and someone who has insurance and money to pay them. Unless my eyeballs fell into their hands, they weren’t going to spend any time with me to figure out what was going on or help me get better. I felt totally helpless and alone.

 

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

Kristin: Do It! I was treated with the greatest respect as a real human being by the entire team at POTS Care. They listened intently to every little detail I gave them. As a former RN in neonatal intensive for 20 years, I can truly attest that the medical review of my records, the medical explanation of the findings, and the medical research done for POTS treatment was outstanding! I was amazed to go home with a preliminary treatment plan with on-going lab tests to monitor my levels and follow up emails/phone contacts scheduled. I am being taken seriously and so is my health!

Interviewer: Thank you so much for sharing your story, Karen! We loved having you at POTS Care.