Excerpt from “POTS: Together We Stand, Riding the Waves of Dysautonomia” By Jodi Epstein Rhum, author
The final chapter in the book is the story of the author’s daughter Nikki and her experience with the Accelerated program here at the POTS Treatment Center in Dallas, TX.
“The POTS Treatment Center gave my daughter back to us, and we will forever be grateful… Since she has been back from Dallas: she has gone on long walks, has gone extreme trampolining, is constantly going out to dinner and to the mall with her friends and even danced the night away at Homecoming. Nikki is not yet 100% better, but she is at least functioning 90% better and now has more good days than bad… we decided to take a leap of faith, and we landed on angel’s wings. My daughter continues to soar to new heights every day. Thank you to the POTS Treatment Center for teaching my daughter and giving her the confidence to fly again.”
Before my daughter came to treatment, she had severe issues with fainting, low blood pressure, back pain and anxiety. After the first day, she felt such relief having been in an environment where people understood her condition. We also learned so much about POTS and why symptoms were occurring. The education and treatment were above and beyond my expectations!
My daughter is so much happier and confident now. Learning how to manage POTS is essential. Dr. K., Dr. Townsend and the staff are amazing. I highly recommend this program.
-Tracye, March 2019
***Update April 2019***
Camryn is doing incredible. She is on week 5 of treatments and has returned to volleyball and walking, etc. She has not missed a single day of school since she completed the program. We cannot begin to express how grateful we are for the program, doctors and staff. It’s been truly remarkable to watch Camryn “come back to life”.
The program has helped my daughter a great deal already. The techniques that are taught provided some immediate relief of symptoms and offered a light at the end of the tunnel. We live near many world-renowned hospitals and physicians. There is no program that offers what the program at the POTS Treatment Center has provided. The biofeedback approach offers a window into what has been going on physically and allows the patient to see progress.
Today, my daughter woke up bright and early and was quite lively. She was singing along with music she was playing. It was wonderful to see her back to her old self!
-Nicole, March 2019
This program is invaluable for Talia. I have watched her go from being in bed her entire 8th grade year to being up walking, attending a basketball game in a week. She has returned to playing competitive volleyball and attending her first year of high-school. As a mother I feel as I have been given my daughter back. Personally, I have been in the medical field for 34 years and never believed in biofeedback. Watching my daughter return to her life has made me a believer. Dr. Kyprianou and Dr. Townsend spend time with her training on the proper use of her program and addressing all her personal issues that set her apart from others. They treated each person individually which is considering them as a “whole” not just one aspect or part of them. If you asked me if you should bring yourself or child here, I would say make your travel arrangements now.
-Camela, March 2019
Thank you, Dr. Kyprianou!
In May of 2008, I began experiencing incapacitating migraines; I went from doctor to doctor until I was diagnosed with POTS in late July. POTS is an autonomic disorder that causes multiple symptoms, though the biggest is a racing heart, this is what was causing my migraines and all of the other odd pains that I had no explanation for. The pain I experienced was mental and physical. I knew I was sick, because my heart would race when I stood up and I was basically bed ridden. At the time though, I didn’t realize I was making it worse by not doing anything to fix it. I couldn’t leave the house because standing up was too hard, and school was out of the question. Two things happened at once though and turned my life around. The first was that I started an exercise program designed to strengthen my heart so that it wouldn’t beat as fast when I stood up. The second was that I started biofeedback. If I am being completely honest, at first I was extremely skeptical about biofeedback. I mean, after all, how can breathing in and out fix anything? My mother was at her wits end though so even though I protested, she dragged me there in my pajamas three times a week, rain or shine, no matter how badly I felt. Don’t get me wrong, everyone at the biofeedback center was really nice, and they tried to make me happy to be there, but I was stubborn and didn’t even listen to the notion that maybe this would help. But no matter how hard I tried I couldn’t ignore the signs that I was getting better. I gradually started noticing that I was no longer waking up feeling awful, and when I did feel poorly, I practiced my breathing exercises and they helped. I was starting to get my old life back. I ditched my pajamas and went to the doctor in school clothes and with my hair and make-up done. The depression was lifting and I was comfortable being around my friends again. School was becoming a bigger and bigger possibility which was a plus because it was my freshman year of high school. Slowly but surely I was able to do more and more. When I was sick I wasn’t able to go to church for six months, but, step by step, Dr. K got me back and I haven’t missed a week for three months straight. I am currently back in school and am almost healthier that I was before I got sick. I run ten miles at a time and pretty soon I will get another EFG to see how much my heart has strengthened. I am down to 1 or 2 days a week at biofeedback, and I almost never experience symptoms anymore. POTS is a disease that usually lasts anywhere from 2-5 years…Dr. K cut it down to ten months for me!!! Thank you, Dr. K. You turned a really bad situation into a positive one. I know your techniques work because they healed what most doctors told me was un-healable. Thank you for everything you have done for me, I am blessed to know you!
When I started your program, POTS had crippled my life and I could barely make it to school. I had exhausted nearly every other option and was beginning to give up. Long story short, your program got me back to my old self and helped me overcome POTS. Even though I was skeptical at first, biofeedback grew on me, and I could tell I was starting to improve. Where beta blockers and other treatments fell short, biofeedback proved its effectiveness and helped cure me. POTS started for me after the summer of 2010. I began having trouble with nausea, dizziness, continuous headaches, and excessive fatigue. As the fall progressed, I started missing school more and more frequently, and I could not make it through the day without a nap. By the end of the fall semester, I had missed 55 days of school, and I was beginning to wonder how I was going to make it through the rest of the academic year. Your program answered that question for me and has helped me finish my senior year. Your biofeedback program cut the time I had to deal with POTS down to six months! I can’t imagine where I would be if I had not come to see you. As I head into summer vacation, I feel back to normal, and I even have a summer job as a cook. Because of biofeedback, I will be able to attend SMU in the fall and continue my academic career. The coolest part of your program is that you taught me how to control my symptoms and put an end to POTS without medication. If I ever have problems in the future with POTS, I’ll easily be able to silence them with the biofeedback techniques you taught me. I thank you immensely for what you have done to help me through this difficult time. Your program minimized the time POTS had to affect my life, and it got me back on track without the use of medication. I still find it amazing that through biofeedback, I was able to use my body to be the cure for POTS. Thanks again for all you have done to get me through this. You’re the best!
My symptoms started in February of 2001. I was 27 years old and living in Chicago at the time. I had always been a fairly healthy person and was an athlete in school. Suddenly, I started getting dizzy every day right after lunch. This had only been going on for a couple of weeks before I passed out one night. Actually, I passed out at least five times within about 30 minutes. After that, I started passing out daily. In restaurants, on the train on the way to work, at home alone, etc. It was very embarrassing and very scary. I went to my doctor, Dr. Eulien. We ruled out panic attacks, diabetes, anemia, epilepsy, and then a brain tumor. At this point, I didn’t care what it was. I just wanted a name for what I was going through. All tests came back negative. Then he scheduled the tilt table test. I passed out during the test and was diagnosed with Neurocardiogenic Syncope (NCS) and was prescribed Toprol XL. I was “normal” again! The only catch was that I could still get sick, I just couldn’t actually pass out. I had learned that if I passed out, I could feel better. In 2006, I started noticing that my arms would feel tingly and heavy sometimes. This worsened over time until they would tingle intensely, constantly, which was nerve-racking. I was also very tired all the time. The idea of working all day and having plans after work had become too much for me. Then the brain fog started and gradually worsened. It felt like trying to think through fog or through quicksand. This was when I really started panicking about my future. If it had gotten this much worse in just a few years, what will I be like in 10 years? I was scared and helpless. I had moved back to Texas by then, and over the next 3 years, I went to 5 or more doctors. None of them had ever heard of NCS nor did they even seemed interested in googling it. They just didn’t care. Luckily, I found the NCS Forum on Yahoo. I read posts from all these people around the world with this condition and, finally, I felt like I wasn’t alone (or crazy) after all. I learned that I was actually quite lucky. Others who suffer from NCS have a very hard struggle, such as absolutely no warning before they pass out. I usually have about 10 minutes’ notice before I actually pass out. It starts getting hot, from the inside, not the outside. Then the dizziness, weakness in my whole body, and nausea. Sometimes, I can still avoid passing out, even at this point. If I sit or lie down, I can head it off, but feel sick for anywhere from one to four hours. But if not, then the next stage starts. The blurred, double, or tunnel vision. It varies. Then my head feels like it weighs 40 pounds and, then, I don’t have the strength to talk. Then I pass out. Felling helpless was very frustrating. I felt like I was not a person with a condition, but rather a walking condition. By this time, I had structured my life around my triggers. I avoided standing in lines, crowded places, being outside during the summer, climbing stairs, etc. I had also started getting headaches on a daily basis. In December 2008, I had given up on ever finding a doctor to treat this. I was tired of spending time and money on doctors’ appointments only to be treated like a hypochondriac. I decided to just stop telling people how I felt and just be grateful that it wasn’t worse than it was. I had given up on my own health. I told my mom about the doctors’ lack of care but she was not ready to give up. We started calling cardiologists and neurologists offices, asking if they treated NCS. They didn’t. I felt defeated and helpless…for 7 years now. Then I found Dr. Amer Suleman with the Heartbeat Clinic. He knew about NCS and knew what I was going through! It was the beginning of a new life! Dr. Suleman retested me and found that, in addition to the NCS, I also have POTS (Postural Orthostatic Tachycardia Syndrome). He suggested a high sodium diet. The numbness in my arms stopped. Although we can’t prove that it was salt, I can tell when I haven’t had enough salt from the aches in my arms. I also weaned myself off the Tropol and the brain fog cleared up within a few weeks! Dr. Suleman referred me to Dr. Mary Z. Kyprianou for biofeedback. The techniques she has taught me have given me back control of my life! For the first time, I feel like I am not at the mercy of this hateful condition that has regulated my activities for so many years. I have control. There are things that I can do to stop this process. When my heart rate gets too high, I am learning to bring it back down and the entire process stops. It does not progress to the sick, nauseated, dizzy stages at all! I am eager to see the other treatments she has lined up for me to further train my autonomic nervous system to react appropriately. Dr. Suleman also referred me to an exercise consultant, Rachel Horne, who actually has this condition so she knows exactly what I am going through! I have started exercising for the first time in 8 years. We are training my heart to beat at an appropriate rate instead of being so sporadic, so that the smallest task is no longer a trigger to getting sick. I am thrilled by the progress I’ve made in such a short amount of time! I owe my new hope and enthusiasm in my life to my mom, Dr. Eulien, Dr. Suleman, Dr. Kyprianou, and Rachel Horne! Thank you all for empowering me to take back my life!
Dear Dr. Kyprianou,
When Mary Beth was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome), her life was controlled by this condition. Mary Beth’s symptoms were many: nausea, racing heart rates, high blood pressure, low blood pressure, fatigue, headaches, body temperature problems, dizziness, anxiety, and overall body pains. Since Mary Beth began biofeedback with you, Dr. Kyprianou, her life has made a wonderful turn-around. Her hopes and dreams for her future have returned. When Mary Beth was referred to you by another POTS patient, we must admit we were both a little doubtful. But after a few weeks of your care, Mary Beth began to see results! If another POTS patient is reading this letter, please give biofeedback some time to work. Mary Beth uses this technique daily. Biofeedback has given Mary Beth some control over her symptoms. Thank you, Dr. Kyprianou, for your kindness, determination, generosity, and support. We think you and your staff are wonderful. We give thanks to God for your continued care.
Love, Hugs, and Smiles,
Mary Beth’s Family