“Finding a resource like POTS Care where not only are the people familiar with it, they are compassionate towards it, have answers, and have personal experience, was hugely helpful.”
Dr. Vicky came to POTS Care with symptoms that were interfering with her ability to maintain the rigorous schedule of a practicing physician. Suffering with POTS, EDS, brain fog, cold intolerance, gastroparesis, insomnia and exercise intolerance she leaves POTS Care with answers for her symptoms that had eluded her current medical team and a solid plan to reverse her condition.
INTERVIEWER : Could tell us just a little bit about your journey with POTS? Maybe some of your most debilitating symptoms, and what has effected your life the most?
PATIENT : Probably the insidious onset for me, things just started happening kind of out of the blue. It started off for me as fatigue — and I am talking incapacitating fatigue that people around me just did not understand. Heck, I did not understand it and then it would turn into the tachycardia. When I stood up and moved around, my heart rate was flying and making me short of breath, which was scary. I am a physician, so I would go and get that checked and the physicians themselves would kind of shrug me off and so that makes you think, “Oh! this is all me doing it!” and that gets frustrating. Then more and more symptoms start, you know, jumping on top of that to where you realize this is no longer coincidence. You start looking for answers and I found out rather quickly that not many people know about POTS or dysautonomia. Finding a resource like POTS Care where not only are the people familiar with it, they are compassionate towards it, have answers, and have personal experience, was hugely helpful.
INTERVIEWER : It’s great to hear that. Do you think that the care you received here was different than previous care that you received?
PATIENT : Absolutely. The thing I liked the most about the care here is obviously you guys had received my records and you had looked over them and you knew me as a person, you also knew my symptoms, but I was not labeled by those symptoms. You started over. You went over common symptoms to this disorder and even hearing you guys ask those questions, I was like, no one has asked me those questions before, but yes I have that, I have that, I have that. It was actually, in a bittersweet way, reassuring.
INTERVIEWER : As a physician and a patient, can you tell us what you think about the science behind the care you received?
PATIENT : Well, as a physician, of course I read Dr. Driscoll’s book, and I am blown away by how smart she is and I have said that to her several times even when she starts talking, you know, I interrupt her because I am so impressed. I mean, she gets it, she gets biochemistry, pathophysiology and how it all interrelates, and that there are several approaches to it, it is not just yes or no. She actually has several potential etiologies and she weighs them all and she admits it could be a little bit of each one and wow, it is impressive and she is right. I was blown away with it.
INTERVIEWER : Do you feel like you have a better grasp on how to handle your POTS now and in the future?
PATIENT : Absolutely. You know first of all, I know it is real and I also know it can be episodic and very different, symptomatically, every day. So that in and of itself is huge because you can go, okay, it is still the same thing, it is still real, I am not making this stuff up because you tend to do that. You tend to doubt yourself and but you are getting tools here on how to deal with each symptom and not just well we recommend these things, you know, a pat on the back or taking a nap. No, there are real tools like think about this and take this medicine or this combination of XYZ, but we are also given those things in writing, which matters because we have brain fog and we are exhausted and you can tell me yesterday how to fix something and today I will be like, okay, what did I do for that? We are sent home with instructions, so we are armed and no longer dangerous.
INTERVIEWER : I am so glad to hear that. Lastly what would you say to anyone that is thinking about coming here and may be is just sort of not sure if they are ready to take that leap of faith?
PATIENT : I wish I would have jumped in here first because the people who diagnose you with POTS half the time they just tell you it is POTS, and you still do not really know what it is, and when you come here you are given a great explanation of what it is and how episodic it can be, etc. and how to approach it from the various angles and then how to treat it from the various angles. If you can come and get this foundation first and foremost, it makes it a whole lot easier when you are set back free to go back to various specialists of how to approach it. So, it is like a perfect place to get educated and armed because you have to be smarter than not only the disease, but smarter than all the doctors, who probably do not know as much as they should.
INTERVIEWER : Thank you so much for talking with us today, Dr. Vicky.