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  1. First off, I must admit that I'm guilty of only jumping on DINET when I'm experiencing a POTS flare up and in need of support from this community. When I'm enjoying good health (like I am right now), I don't login. So, I wanted to jump on to share a relaxation tool that has really helped me over the last 12 months - ASMR YouTube Videos. In case you haven't heard of it, ASMR stands for Autonomous Sensory Meridian Response and these videos involve a whole lot of whispering, tapping and other soothing noises. Some people experience pleasant brain tingles while watching them but I just feel a deep sense of relaxation come over me. I put one on when I'm starting to feel POTSIE, anxious or I'm having difficultly falling asleep. Apparently not everyone enjoys the benefits of these videos; my husband thinks they are totally nutty. If you're interested in giving them a go, here are some of my favourite ASMR artists on YouTube. - Gentle Whispering - Whispers Red - ASMR Glow - Gibi Hope they help you too.
  2. Hi @Outaker - no I haven't tried Rauwolfia. I'll look into this too. Have you found that it has helped you? Thank you, Angie
  3. Hi @Outaker, I'm afraid I haven't worked out a way to totally stop the POTS attacks from occurring. For me, I find that if I get lots of rest, eat a healthy clean diet, and incorporate exercise (light strength training - no cardio), I am pretty stable. As soon as I mentally or physically over do it, I can find myself in a nice big POTS flare up. I've also been on a daily beta-blocker for the last five years that has helped me a lot. Do your attacks occur in clusters too? The one I'm in has been going for almost three weeks - I'm having an attack every second day which is a lot for me. Cheers, Angie
  4. @Pistol - the nitropatch sounds great. I have an appointment with my cardiologist in April and will ask him about it. Thanks again for sharing your experience with me.
  5. Hi @Pistol - thank you so much for sharing this info with me. My cardiologist wasn't sure if I was having coronary spasms and gave me a Nitrolingual pump spray just in case. After the next episode of chest pain he also wants me to get a blood test to check my troponin levels. My diastolic blood pressure is also usually elevated when I'm experiencing the chest pain. I notice that the veins in my hands which are usually prominent become very constricted and almost disappear entirely too. For me the biggest challenge is believing that I won't drop dead during one of my severe chest pain episodes. Even though I have lived through so many, I always panic in the moment. It sounds like you have a great management plan in place with the weekly IV fluids and incorporating plenty of rest. Over exertion is definitely a big trigger for me too. Thank you again! Angie
  6. @Pistol - such a good description of an adrenaline surge. I'm in the midst of a POTS storm at the moment after a pretty good run. The chest pain that comes with the attacks is particularly bad at the moment. I was wondering if anyone has explained to you what causes the chest pain? My cardiologist doesn't think it is cardiac in origin but I think it would help me to deal with the pain if I understood it better. Also do you find your attacks occur in clusters? Thanks!
  7. I found your post very upsetting to read. I hope you see another doctor. Eliminating gluten and sticking to a healthy wholefoods diet greatly reduced my POTS attacks. When I do accidentally eat gluten through cross contamination it triggers a huge POTS attack - high heart rate, chest pain, the shakes and abdominal pain. For me there is a clear link between diet and my attacks. Good luck with finding an informed, compassionate medical professional who will listen to you.
  8. Hi Biljana, I live in Sydney too. I was diagnosed with POTS in 2014 after bouncing around specialists for quite a few years. This forum is the best support network. Please feel free to message me if you want to swap notes about Sydney doctors who know about POTS - they are rare! Hope your health improves soon. Angie
  9. Yes! Yes! Yes! I wrote a post about this problem earlier this year... To overcome this weird rebound effect, I focus on strength training with my personal trainer and don't let my heart rate get too high. A high intensity cardio workout will always set it off. I feel great whilst exercising but that night or a day later when I'm at rest my body will go berserk. It's very weird. Don't give up on exercise though because I feel better for it. My POTs flare ups have been less severe since building muscle especially in my legs.
  10. Stephanie, I read your post yesterday and I keep thinking about your subject line, "When do you decide you've had enough". When I was in the middle of a terrible POTS flare up earlier this year I had some extremely dark moments. The days started blurring together - I was overwhelmed by the uncertainty, fear and pain. Keep reminding yourself that you're strong and resilient - this nightmarish time will end. Sending you lots of positive vibes! You're not alone.
  11. Hi Jane, A Neurologist called Dr Judy Spies specialises in autonomic disorders at Royal Prince Alfred Hospital, Camperdown, Sydney. I found her very helpful. Good luck with it all! Cheers, Angie
  12. Hi Josh, I can relate to living with terrible chest pain. It is extremely frightening. Even though I've been told by my cardiologist that my chest pain is not life threatening it is always scary when it occurs. I also experience fatigue after a bad episode. I'm afraid I don't have much advice for you, except don't push yourself. Listen to your body and rest when you need to. Hope you start to feel better soon. Angie
  13. Great work Lily! I'm going to hit the recumbent bike at the gym on Monday. Have a good weekend.
  14. Lily - I love this idea. Please count me in
  15. Lewis - it's awesome to hear that your fitness has almost returned to the same level you were at before you developed POTS. It gives me hope. Shan1212 - I agree with you. It is a lot of trial and error. After training last week I suffered bouts of terrible chest pain which brought on extreme fatigue - it felt like a heavy blanket had been draped over my head and I struggled to be productive at work. The chest pain was particularly frightening - it felt like an acute spasm and then my body went into shock (shaking, nausea). The pain lasted much longer than usual and my husband and I contemplated going into the ER but rode it out at home. As mentioned in my earlier post, the attacks occur when my body is in a relaxed state - reading a book in bed etc. The exercise certainly seems to be stirring something up - it feels like my body is rebelling against it. I returned to training tonight - a very low impact work out and I have my fingers crossed it won't trigger too many nasty symptoms. I don't want to start fearing exercise because I know it is very beneficial. Thanks again for sharing your exercise experiences with me!
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