daddysgirl

I think the standing up is like the next challenge since the transition from sitting to standing is so hard for us. Learning how to be successful on the software while sitting and then standing to learn to maintain control even with your change in posture. It is a big deal. Also, she addresses diet, exercise, overall wellbeing mentally as well as physically, other conditions and diseases you may be suffering from, etc. For example, she got me to quit smoking and start eating better. She treats you as a whole.

Hi looneymom, Things are going well! Thanks for asking!! I actually still go to The POTS Treatment Center for maintenance since I'm local. I didn't do the 2-week program like so many others have. Spark is an energy drink made by Advocare. I don't pay attention to the nutrition panel (I probably should) but I like it because it doesn't made my HR jump, it doesn't make me feel anxious and I don't crash later. I use the breathing and relaxation techniques Dr. K taught me to fall asleep. She also has CDs available. I just do what bits I can from memory (with her accent and everything!) I never wake up during the night - very deep sleeper, I guess. I feel sorry for people who do. It's not restful sleep. I'm sure Dr. K could suggest some things. I had trouble falling asleep when I first started going to The Treatment Center but I don't remember her recommendations for sleep now. She thinks of everything! She customizes the program to the patient's needs so she had me quit smoking, quit drinking caffiene late in the day, eat healthier, etc. So it would be addressed in her intial consultation when she was getting to know your son. Do you know it isn't a side effect of a medication that keeps him from sleeping? Does he have any other ailments besides POTS? I also have NCS but so many POTSies have so many ailments. Take care!

Hi Alex, Honestly, I don't know of different types of POTS. I'm sorry I can't answer that question better. Maybe I'm misunderstanding the question? As far as treatment, I got help from The POTS Treatment Center in Dallas. My customized program affected my diet, stress management, sleep habits, exercise, breathing, etc. Hi ramakentesh, Thanks for the clarification. That sounds reasonable to me. I was dealing with high HR and low BP primarily. I am not familiar with all the various diagnoses POTSies can be diagnosed with, but I can't help but believe that POTS causes a myriad of other dysfunctions, some due to poor circulation and others just simply a result of the Nervous System going wacky all day every day for months & years on end. I think our bodies are glitchy and that causes other systems of the body go haywire. I did have pins & needles type pain in the bottoms of my feet and was sent for nerve damage testing. However, once my ciruclation improved, the pain in my feet eventually subsided. I am not a doctor, nor do I claim to be, but it seems odd to me that POTSies have so many conditions/ailments, some also having to do with other autonomic functions (ex: digestive issues, etc.). We can't be THAT unlucky. Life can't be THAT unfair. Some of us were perfectly healthy our whole lives until we started having POTS symptoms (which for me was age 27), and then the other issues began later. I've spend the past 12 years trying to make sense of this stuff. I was diagnosed before there was ANY information on the internet about NCS or POTS. When I would google Neurocardiogenic Syncope, Google would say "No resutls found - did you mean Grand Mal Seizures?" After being ignored and neglected by so many doctors over the years, I had no choice but try to make sense of it all myself, and to me, it all starts with POTS. Who knows for sure. POTSies vary so much in their symptoms, their triggers, other conditions/diseases/syndromes. I'm just grateful we have the information available to us on the internet that we do, and that we now have doctors who actually focus their entire practice on us (really, how awesome is that?!?), and that we have each other to compare notes with and vent to. I wish you all luck and health and love.

Hey guys! I just wanted to share with you POTSie peeps what I've already shared with my other fellow POTSies on The POTS Treatment Center Facebook page... SOOO elated!!!... I just have to share!! I went on a cruise recently to gorgeous Jamaica, Grand Cayman and Cozumel with my friends. As I look through all of our vacation photos, I can’t help but remember how POTS and NCS would not have allowed me such a tropical vacation just a few short years ago. The old me would have gotten dizzy, nauseated and on my way to unconsciousness within 15 minutes of being in the heat, but the new me was able to lounge on the deck in the Caribbean sun for hours without a glimpse of a problem. The old me would have fainted within a 20 minutes of the slow, guided tour of a 2-story historical mansion with no central AC in Jamaica, and definitely would have been sitting in the car while everyone shopped and browsed! Not the new me! I didn’t even wear compression hose!! But, I did do my breathing exercises so my feet wouldn’t start to swell. (History...) For me, most of my trouble starts with my HR. If I keep my HR normal, then the domino effect doesn’t build into the laundry list of random ailments that used to plague me. I thought I was falling apart! Turns out, having a faulty Autonomic System causes all kinds of things to go haywire. By getting to the root cause, I was able to surface from the pool of symptoms I was drowning in. I am frequently reminded of how far I’ve come in combating POTS and NCS and how grateful I am to Dr. K and The POTS Treatment Center for giving me my life back! Thank you, Dr. K! You're a lifesaver!!

I'm so sorry, guys! I didn't realize anyone responded to my post! Well, let's see... My symptoms started to fade within a couple of weeks of seeing Dr. K. I started out seeing her twice a week. My symptoms continued to fade over the next couple of years. My brain fog was the last one to improve. My migraines and the numbness in my limbs were the first ones to fade. I will say though that it took me a while to implement all the aspects of Dr. K's program that she customized for me. Example: I didn't stop smoking until a year or so into my treatment. Dr. K is the only treatment I've had. I don't take any meds - just vitamins and drink Spark for energy. Some days I don't even do that. I live in Dallas so I didn't do the 2 week program. I started seeing her 2x per week and now I'm just basically seeing her for maintenance since I don't have the home system she recommends for remote patients. I hope that helps! I am going to try to upload a pic of me during my recent Caribbean cruise!! I'm elated that my body now allows me to withstand that kind of heat without any issue! Stay tuned...

Hi everyone! I hope everyone is feeling fairly well today! I just wanted to pause for a moment and show gratitiude for help that I've found with my POTS and NCS symptoms. I've had a few reminders lately about how our symptoms can plague us and, rather than going on about my day and dismissing the reminders, I'm compelled to share with anyone who's in the market for some positivity. I was coming back from lunch in my car today and noticed that the thermostat read 104 degrees. I started thinking how that heat used to put me on my back. Literally. The Texas heat used to make me so sick, and now I don't get sick from the POTS' related heat intolerance at all! Really! I went on vacation a couple of weeks ago and went to the river all afternoon - in the Texas heat - without fainting!! I've recently moved into a new apartment and, after having ONLY a stand-up shower for the past 2 years, was taking a nice, hot bath (which I love to do). It struck me that I don't pass out anymore afterwards. It used to be quite the challenge to get from the tub to bed before I passed out, but I have not fainted in 4 years now!!! I don't even bathe with my heart monitor on anymore!! I wear my cute heels to work again and haven't thought about my boring, comfortable loafers in the back of my closet for a couple of years now! My feet used to be too swollen every morning to even think about wearing high heels. In fact, squooshing them into those loafers wasn't pleasant either. I'm happy to report that I have gotten 3 compliments today on my brown floral wedges that are so cute!! I have dinner with my Grandmother on Tuesday nights and she gets onto me about eating so much salt. She is deaf and I can't make her understand that salt is actually a good thing for me. I don't have the numbness in my arms anymore, which was one of my most annoying symptoms for a couple of years. I rarely get a migraine anymore and my memory is a WHOLE LOT better than it used to be! I feel like a functioning person again, instead of feeling like I'm barely making it and at risk of losing my job all the time. Thank you for reading and I hope you too find some relief from your symptoms, even if it's only 50% improvement. My progress with the POTS Treatment Center wasn't instant, but I have logged my progress and can see how I am still improving to this day. I look forward to my future again and have Dr. Kyprianou to thank. Not all of us have the same issues and I'm impressed at how she is able to cater her program to what I needed help with so we could chip away at each symptom until they weren't an issue anymore at all! Good luck!!

What a great video! Thank you!! I should send the link to all my past "doctors" and friends so they understand POTS.

Hi guys, I hope everyone is feeling pretty good today! Jodi Rhum has posted 2 videos to The POTS Treatment Center's Facebook page if anyone is curious about the program there. They are her impressions from her daughter's progress with Dr. Kyprianou's program. It's informative and wonderful to hear another perspective of the program. Jodi also wrote a book called POTS Together We Stand: Riding the Waves of Dysautonomia, so that's also wonderful to have more resources for us when trying to understand what's going on with our bodies! The videos can be found at: and http://www.youtube.com/watch?v=qWziHZj7nh0&feature=relmfu Enjoy! Cassie

I understand how many of us have become jaded from so many doctors who didn't care enough to even Google POTS so they could understand what we were going through, but I would hate to see anyone discouraged from considering Dr. K's program because of the skepticism of others! I'll admit that I was skeptical going in for my first appointment at the POTS Treatment Center, but that didn't last long. I didn't want to patch the problem, I wanted to address the underlying cause, which is what Dr. K's program does. She treats the whole person. The program isn't simply biofeedback. She is working on all your specfic symptoms in your body and tailoring the program to fit your needs. She knows that our symptoms are not just "in our heads" and teaches us how to help our bodies overcome this illness. She is teaching you how to take things under control, instead of being reactive to your POTS. I'm not sure about trying to cure dysautonomia - I think she's only trying to help us recover from POTS, hence "POTS Treatment Center". Why would it be wrong for her to say she has cured or helped patients recover from POTS if she has? I don't understand the issue with it. As for me and my stats, I would say that personally, I feel about 96% better than I felt before I found Dr. K. For about 7 years before that, I was miserable and had really abbreviated every activity in my life due to the POTS and NCS. Since I started on the program, I haven't fainted in over 3 years!! These are my symptoms that have either gone away completely or greatly improved: Fainting (due to the NCS) migraines (at least weekly for a year and a half) tingling my arms (for 3 years) pins and needles in the bottoms of my feet (for several years) swollen feet and legs, and arms and hands sensitivity to heat, dark or dimly lit rooms, being startled, sudden pain, strobe lights, (and the list goes on) would cause me to have lightheadedness, nausea, double vision/tunnel vision and then I would faint. I'm grateful for my improvements and I'm glad I'm not on beta blockers anymore and dealing with their side effects (like brain fog and memory loss). I'm trying to think of some of the other comments on the thread... As for success rates, I honestly feel like some people would pick apart whatever she claimed. If she said 95%, they'd say "no way, too high, it's a scam" but if she said 50%, they'd say "see, the program doesn't work". You can't please everyone all the time, but I'm glad the program worked for me. Someone said "inspiration doesn't help sick people get better" and I whole-heartedly disagree. Wanting better health and better qualify of life is my inspiration and Dr. K inspires me to follow the program and improve my specific issues during my sessions, and I am feeling a whole ton better!! Sorry, I'm not sure I can explain it any better than that. I don't get into the medical equipment side of things or the medical terminology. I have enough on my mind without trying to keep all that straight. I hope no one thinks I'm stupid because I don't know a lot about Orthostatic Intolerance or all the ins and outs of dysautonomia in general. I just focused on my symptoms and my treatment and now I'm busy doing stuff with friends and family and enjoying my life again. I wish everyone well, however and wherever they find help.