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About AngieP

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  1. 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
  2. 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
  3. @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.
  4. 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
  5. @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!
  6. 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.
  7. 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
  8. 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.
  9. 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.
  10. 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
  11. 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
  12. Great work Lily! I'm going to hit the recumbent bike at the gym on Monday. Have a good weekend.
  13. Lily - I love this idea. Please count me in
  14. 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!
  15. Hello Lisa, I’m so sorry that you’re going through such a difficult time. I can relate to everything you’re feeling, particularly the guilt. Like you my husband wants us to have a baby and I’m not sure if it’s going to be possible. I also have to lean on him a lot when my POTS flares up. He is very supportive but I don’t like him having to play the role of carer in our marriage. Staying positive when you’re living with a chronic illness is a constant mental battle. What has helped me greatly is meditation and writing. For some reason jotting down my feelings on paper each day helps - I guess it stops me from getting overwhelmed. I also list all the positive things I can do to make myself feel a little better. Simple things like spending time with my two year-old niece who I love to bits, making healthy smoothies for breakfast, relaxing in nature etc. It may sound hippy dippy but I find being near the water or sitting in a park amongst the trees recharges my spirit and calms me. I also think it’s okay to have a big cry occasionally and let all that fear and frustration out because what’s happening to you is incredibly unfair. Just don’t lose faith in your body’s ability to heal - a better day is around the corner. I agree, that diet and exercise can help us manage our symptoms. If you ever need to vent feel free to PM me. You’re not alone in this. Angie X
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