“I have gotten more answers in this one week at POTS Care than I have gotten in the four years that I have known I have had POTS, and within 10 years that I started getting sick after Gardasil, and that is a true blessing.”
CeCe came to POTS Care after suffering for 10 years after being triggered to develop POTS by the Gardasil vaccine. CeCe suffered with seizures for the past three years and had seen numerous experts, including Mayo Clinic. We were able to identify the cause of her seizures (stopping them in two days), an autoimmune condition, and high intracranial pressure contributing to her condition. She leaves POTS Care with medications and instructions for her medical team with renewed hope to return to college soon.
INTERVIEWER: Thank you for talking with us today, CeCe. Could you please share with us a little bit about your journey?
PATIENT: Well, when I was about 12, I received the Gardasil vaccine. After the first shot, I had my first spell of tachycardia, anxiety, and GI problems. After the second shot, I fainted immediately, and you can look at my school records and see that my days of attendance at school were seriously affected. After the third shot things just got worse. I was so fatigued that I could not even hold my back up. Then things just went from bad to worse as I started terrible GI issues, waking up in the middle of the night out of a deep sleep with severe stomach pain, and just doubled over with it. Things went really from bad to worse when I was a senior in high school in 2012, my 2nd semester, January 7, 2012 is actually the day that I would call that my life was forever changed. I started getting numbness on the left side of my body, and they ruled out strokes and everything serious like that, but they did not then know what to do with me. I ended up in a wheelchair for a while, terrible joint pain, the fatigue was so bad. Actually, almost every time I eat my night meal, I usually pass out and have these pseudoseizures. They occur and look like seizures. They are full on convulsions, my eyes twitch and flutter and roll back into my head. However, these seizures have never shown up on an EEG and that is why they are called pseudoseizures. At points in my journey I was having over 20 pseudoseizures a day.
INTERVIEWER: You’ve clearly been to a lot of doctors previously, were any of them able to help you?
PATIENT: I have been everywhere. I have been to Toledo, Ohio, to a POTS specialist. I have been to Mayo Clinic. I have been to a biofeedback program, and then just doctor after doctor, and no one has really been able to figure everything out. I have known that something just could not be right because no matter if my heart rate was doing well at a time, or if I was following every protocol, taking every medicine, doing everything I have been told for POTS and going everywhere, there was no real improvement.
INTERVIEWER: Were we able to identify any underlying problems that had been contributing to your POTS that others may have missed before?
PATIENT: Yes. This is the best place I have come to for POTS, and I finally feel like I have answers. First of all, I found out I have EDS. and I found out that I have Sjögren’s syndrome, which is an autoimmune disease. I also found out that I have a problem with high intracranial pressure. I found out that I have vitamin B6 deficiency, and possibly a lot of other vitamin problems. It turns out the B6 deficiency was causing my pseduoseizures. There have been so many things layered with this POTS that no one else has found.
So here at POTS Care, I feel like I have finally gotten answers to the puzzle and the one I am fighting against and that is great even if something is not 100% curable. It is great when you know which direction to go and you can get into recovery.
INTERVIEWER: Do you feel like we stuck with science when trying to figure out your underlying causes of POTS?
PATIENT: Absolutely, no doubt about it. For example, the Sjögren’s syndrome that I was diagnosed with was found by a blood test, which is pretty black and white in science. I also had a spot on my eye that helped determine a few of my other problems. There are so many different ways that they use science here to really look at your problems, and it is all truly objective. There are no ifs, ands, or buts about it, and everyone is treated differently.
INTERVIEWER: What would you say to people that are considering coming to POTS Care, but who aren’t quite sure?
PATIENT: If you are fortunate enough to stumble across POTS Care, go, load up and go, call that day. When I saw the website I knew I wanted to do it because this is what I believe in, looking at the science of each patient and really breaking it down, peeling back the layers and finding out what the underlying cause of your POTS is. Even though I knew in my heart that I wanted to do it, the only reason I was at all skeptical was because I have tried so many other POTS programs and I would go and think it was going to be successful, and I would get there and I was like this does not make sense, or this is not going to work. They would treat me just like everybody else and we do not even have the same symptoms. However, you need to come to POTS Care because it is totally different than anything else I have experienced. I have gotten more answers in this one week than I have gotten in the four years that I have known I have had POTS, and within 10 years that I started getting sick after Gardasil, and that is a true blessing.
INTERVIEWER: Thank you for talking with us today, CeCe.