Postural Orthostatic Tachycardia Syndrome

Testimonial

Krissie’s Story

Krissie’s Story

“I got immediate relief for constipation, surprisingly. Also, the energy that I had, I mean I can feel it today… I feel really focused and the mental clarity I have – well, something is working!”



INTERVIEWER: We know you have been through a lot, but we are going to see if you could just share a little bit with us about your journey with POTS thus far.


PATIENT:I have been sick since September of 2006. I have been to every doctor imaginable, every “-ologist” there is. I didn’t know what I was experiencing, I just knew that I couldn’t stand up, that I couldn’t go to the grocery store, I couldn’t stand in a line, I couldn’t be around bright lights. I just felt dizzy and sick. It started out one time a week and then progressively over the next six months it became every single day. I was not able to get in my car and drop my kids off at school, and it was like three or four blocks away. I was basically bedridden for two years.

INTERVIEWER:: Can you tell a little bit more about your experience with your doctors and if you felt like you were getting the help that you needed?

PATIENT:I started out with general practitioner, who gave me antidepressants. She thought when I went to her and told her that I couldn’t get out of bed and I didn’t know what was making me feel this way, she immediately thought it was depression and I tried them. You know, being desperate, I tried it, took it and I felt sick. I knew it wasn’t helping me. She referred me to an otolaryngologist. She thought it was dizziness and I kept telling her the room was not spinning. Something was wrong with me that I feel like internally, but I did all the tests there. They didn’t find anything and it just kept progressing. Cardiologist, electrophysiologist, neurologist, I kept going to all these different “-ologists” at the Mayo Clinic and everyone kept saying, “I don’t know what it is.” You know, they would run a test or two and just say I do not know what is wrong with you, try this, try to go here, and everything I was doing was not helping. I was working with a cardiologist and about six months into working with him he tried salt tablets and beta-blockers. He did a tilt table and then that is when he labeled it dysautonomia.

INTERVIEWER: How do you feel like the care that you received here at POTS Care is different than the care you received by your other doctors?

PATIENT:It is dramatically different, just the ease of the appointment, and it was very one-on-one. What I have gotten from the other doctors was, you have five minutes to state your entire claim, your entire journey, then they may run one test and say I did not find anything and then you are on to the next. You did not have someone who was going to sit down and listen and look at all of your records and try to fit those pieces together, and Dr. Driscoll did just that.

INTERVIEWER: Do you feel like your care here was individualized to you?

PATIENT: Very individualized. Very, in the way she explains everything to you. She doesn’t just say “here, take this, try this and we will see if this works.” She goes into the depth about how it works and why it works, and how she has either tried it herself or that she studied it and said this is, it is just different. I guess because I know that she has been there, I can trust her.

INTERVIEWER: All right. Were you able to get any immediate relief from any of your symptoms while you were here?

PATIENT:Yes, I got immediate relief for constipation, surprisingly. I was kind of skeptical about it at first, but yes the effect was immediate and more so than I thought it would be. Also, the energy that I had, I mean I can just feel it like today. It is not an overwhelming type of energy, but it is more like, it is not speed, but I will just feel really focused and the mental clarity I really have, well, something is working.

INTERVIEWER: I am so glad to hear that. Do you think you have a better grasp on what is going on with you now and just how to proceed from here?

PATIENT:I think because she takes the time to explain all of that to me, I think the dysautonomia clinic that I have been going to for seven years, it is all I got; there is no cause, there is no cure, how you are doing on your Klonopin, that is it. Here, she is actually explaining to me down to the cellular level what is going on, which is important because that is all I do as I try to take what other doctors give me and try to figure it out on my own, but she has already figured all of that out for you. Like she has broken it down and she gives you everything into detail.

INTERVIEWER: That is awesome. People call us every day about the care we provide here. What would you say to those people who are sort of on the fence about coming to POTS Care?

PATIENT:You know, I think being a patient myself, the reason why I trust her so much is not the letters or the alphabets behind her name that urged me, it is because she has been there and she figured it out and I knew that she was going to take that same individualized care that she gave herself and put that into what I needed as well. Why wouldn’t you go to a doctor who has been through it versus someone who looks at you and goes “I do not see it, I do not know what is wrong with you, but can you tell me what your symptoms are”?

PATIENT:Yeah, I mean you are not getting that feedback from them that you want, but she has been there, she has done it. If she helped herself, helped her children, she can help you.

INTERVIEWER: Yeah. I think it is so important, so necessary. Is there anything else you want to add?

PATIENT:No, I think it has been great having you, you have been so wonderful.

INTERVIEWER: As have you! Thank you for your thoughts, Krissie.



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