Postural Orthostatic Tachycardia Syndrome

Testimonial

Megan’s Story

Megan’s Story

“You guys won’t believe the difference I can already see and feel in my life! Thank you so much for saving my life before my body declined any worse.” Megan came to POTS Care in a wheelchair and using a feeding tube, with diagnoses of EDS/POTS, gastroparesis, chronic pain, chronic fatigue and blood clots. She leaves POTS Care off of beta-blockers with less pain (she was off of opioids in a week), less fatigue and a specific plan to address remaining symptoms.
 
From Megan, a week after returning home from POTS Care:

“Just as proof to what you’re doing is already working, I normally can’t do anything the day or two after I travel, but Saturday evening I was already at my friend’s house watching movies and right when I walked in she said “Holy crap what did they give you? You actually have a glow and exude energy like I’ve never seen in your before!” That to me was absolutely huge and really validating that what I’m doing and the hard work I’m putting into the change is making a difference. I’m really looking forward to continually getting better despite any setbacks that are going to happen. I’m actually going to be setting up my Xbox 360 with the Kinect today and starting to slowly ease back into Zumba!”

Twelve months after coming to POTS Care, Megan’s mom shares these thoughts:

“About two years ago, I sent you these thoughts about Meg: My husband and I are pulling our hair out because our daughter is essentially GONE. No ability to cope with life, depressed, disorganized, negative, touchy, moody, impulsive, rude, and difficult, no social skills, no motivation…. cries all the time. She is a completely different person. She knows it and is in despair. Of course doctors have 0 answers except get counseling because chronic illness is difficult.”

One year post POTS Care, Meg’s mom sends this update:

“NOW – IN 2017 – literally the most positive person I know. Happy, able to cope, no anxiety, trusting, full of faith in God’s purpose for her, funny, sweet, humble, MOTIVATED. She’s BAA-AACK! Still setbacks of course, still pain (but not nearly as bad) but LIFE. HOPE. We can’t say enough about what your research and help has done.”

INTERVIEWER: Megan, can you please share with us a little bit about your journey with POTS?

PATIENT: : I’ve been sick for eight years. I would say my most debilitating symptom is fatigue, it just kept getting worse. I also have massive gastro problems. Everything just kept getting compounded on top of each other, so it was like everything started off really mild, and I missed a lot high school, but it was not horrible until like college and then that was when I had to have a port put in. The doctors said we are going to add another medication, another medication, another medication and another medication and they were not helping at all.

INTERVIEWER:Did you see a lot of doctors before you came here and were they able to help you?

PATIENT:: I probably saw a new specialist every six months and they were all pretty much useless.

INTERVIEWER: Do you think the care that you received at POTS Care was different than the care from your other doctors and was it individualized for you?

PATIENT: Yes, I would definitely say it was really individualized. We finally got to sit down with somebody, who understood and got the quirks of my own personality, which was really validating. I felt like okay, I am not this complete social outcast, that has no idea what she is doing anywhere, but then just the amount of focus that went into my specific history versus just going off of medical journals and basic symptoms. And I think it was so valuable to have someone finally looking at the whole picture instead looking at each individual symptom and treating that symptom in conventional ways. POTS Care was able to pull that together and figure out what may be causing all of those symptoms.

INTERVIEWER: Did you feel comfortable about the science we explained concerning your case?

PATIENT: Oh, absolutely, we knew from the beginning that POTS Care was about the science and not just random voodoo or quackery. The doctors sat across from us and explained all the science. Even though some of it was over my head, you recognize this makes sense and is very logical.

INTERVIEWER: : Do you feel like you have a better grasp on how to deal with your illness now?

PATIENT: Yes, definitely. I think everything makes sense and how it relates to each other. I feel like I am in a lot more control of what is going on versus before when it was like okay, so what do I take now.

A word from Megan’s mother, Debby…

INTERVIEWER: As a mother, what would you say to the people considering a visit to POTS Care?

PATIENT:Well, the first thing that I think is so important is that Dr. Driscoll suffered herself and she is a mother of kids who suffered, so for me that just gave her all kinds of validity. There is nothing they have ever tried that is like this I bet. It is intensive week long, every day, hearing the science, all the testing, all the individual attention. I do not know where they would have gotten that. Honestly I do not think there is anything like this anywhere that gives as much valuable valid information that is based on the science.

INTERVIEWER: Thank you both for speaking with us today.



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