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Everything posted by Kirsti

  1. Hi! I live in Arizona and I am seeing a couple of really good doctors who are trying to cure me.
  2. That is only the breath pacer. You can get the whole emwave program, but it is a lot more expensive.
  3. I'm so glad it's helping! I really think that deep breathing helps all POTS patients. I went there last August and my hands have never been icy-cold since! Also, I have found that treatments that are not covered by insurance have actually helped me way more than those that are. You can buy the biofeedback program online, but I found you can also buy just the coherence coach, which is a lot cheaper: http://www.heartmathstore.com/item/ECCO/emtech-coherence-coach
  4. I am underweight, and I do feel so much better when I weigh more.
  5. Are there any books about health that you recommend? I have read a few good ones and I want to read and learn as much as I can about my health and how to get better. The books that have helped me the most are The Healing Code by Dr. Alexander Loyd and POTS - Together we Stand: Riding the Waves of Dysautonomia by Jodi Epstein Rhum.
  6. I got POTS when I was 15 and I am 21 now. I would really, really, really, love to meet up with others who have dysautonomia!
  7. The way it can help all of your symptoms and the reason why so many people felt cured after it has to do with getting your autonomic nervous system "unstuck" from the sympathetic nervous state. The deep breathing and relaxing are a part of the parasympathetic, which you want to be in. Apparently for these patients, the breathing correctly and relaxing helped the body go back into the parasympathetic.
  8. Don't worry, it is not dangerous at all! The biofeedback is placing a heart rate monitor on you and breathing in sync with the program. This helps you to control your heart rate variability. You are also hooked up to measure your muscle tension and skin temperature. There are no side-effects, and to me, taking medications is more dangerous. In fact, the biofeedback has helped me way more than any drug has. The doctor there is also extremely helpful and nice, she would never try to take advantage of you. It is definitely NOT a scam. I did the 10-day program there last summer, and ever since th
  9. Poor circulation is directly related to dysautonomia. When you are stuck in the sympathetic nervous state, your breathing gets shallower to conserve blood flow to the organs. Since not as much warm blood is going to the extremities, the hands and feet get really cold. To warm them back up again, try deep breathing. Relax your shoulders and chest and only move your stomach muscles to breathe. As slow as you can, expand your stomach muscles to inhale and relax them as slowly as you can to exhale. After about 20 minutes or so, your hand and feet should be feeling warmer.
  10. I have to drink 4 liters (1 gallon) of water a day or else my blood volume feels too low. Eventually I got used to drinking that much. It important to remember to have enough salt with those liquids, or else it will just go right through you. I also found that drinking that much water strengthens my bladder.
  11. Before I got the symptom of fatigue, I was able to build myself up to do intense cardio exercises for over an hour each day. It definitely was the one thing that made me feel almost normal.
  12. Too much stress causes the body to be stuck in the sympathetic nervous system mode. If you are stuck in this mode for too long, it causes illness. I learned this from the book The Healing Codes by Dr. Alex Loyd. I recommend you read it so maybe you can better understand your condition and try to heal.
  13. I did home-bound schooling in high school. But if I was feeling well enough, I would go to one class and do the rest home-bound.
  14. I'm pretty sure the autonomic nervous system controls pupil dilation and restriction.
  15. I'm not cured, but it was definitely worth the trip. I don't live near Dallas, so I bought the biofeedback computer program online so I can do it at home. The program is called emWave Desktop by HeartMath. Dr. Kyprianou explained to me how the biofeedback works. She also does relaxing techniques and vitamin supplements.
  16. I chose other for my trigger because mine could have been caused by an accident, illness, genetics, or puberty.
  17. Hi! I went to Dr. Kyprianou last August and did the treatments for two weeks. The treatment mostly involves trying to control your heart rate variability through biofeedback and using releaxing techniques. I recommend going to her because I learned a lot about POTS that I didn't already know about. Ever since I did the treatments, I know how to control my blood circulation and my hands and feet don't get cold anymore. I especially would recommend her for you, since the doctors you have seen don't seem very helpful. Dr. Kyprianou is very nice and caring, she really wants to help you.
  18. I have tried pretty much all of the meds you can take to help POTS, but none of them have helped me. Most of them made me feel even worse.
  19. One of my aunts has troubles with fainting, and I am pretty sure my grandmother had POTS. I am the only one officially diagnosed with POTS in my family.
  20. I like the wrist cuffs because they are easy to use and they are small to bring around with you.
  21. This is what it says on my allergist's website (becomeallergyfree.com): And this is the biofeedback program I use: https://www.heartmathstore.com/category/emwave-desktop/emwave-desktop-anxiety-relief
  22. When I first got POTS 5 years ago I tried all the usual medications for it, such as FlorineF. But, they all made me feel worse and I have not taken any medications since. I have seen a cardiologist, orthopedic doctor, ears nose & throat doctor, and a kinesiologist, but they didn't seem to help much. But I decided that I am going to get better no matter what so right now I am seeing (or have seen recently) biofeedback doctor, orthodontist (for TMJ), chiropractor, and I am getting advanced allergy therapeutics treatments. These last four may not have cured me yet, but at least they have help
  23. I have a lot of trouble putting on weight, I feel nauseous because of POTS, but I try to eat as much as I can. I wonder why it is different for everyone.
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