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Everything posted by AngieP

  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!
  16. 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
  17. This happens to me too. It's a really awful experience being woken up by tachycardia. Since going on a beta blocker (Metoprolol) these types of episodes occur less frequently thankfully. In saying that I have begun exercising again and after a particularly intense workout, I was woken up at 1.30am last Wednesday with palpitations, nausea and the shakes. It took 11/2 hours to come out of the attack and it was particularly scary as I was home alone. To help me relax and ride it out I play meditation tracks on my phone. There is a great app called 'Buddhify' that has helped me. I also take more beta blocker to get my heart rate down. I'm sorry you are going through this. I agree with Stellaluna - when your body is playing up rest is best.
  18. Thank you very much for your advice and encouragement to continue exercising. I definitely over did it last week and from now on I will take it easier and build up slowly.
  19. Hi there, Both my cardiologist and neurologist would like me to build some muscle especially in my legs, so I'm working with a personal trainer on strength training. Before I developed POTS I was an avid runner and always enjoyed exercise. However I began noticing that I would have POTS attacks between two to 24 hours after working out. During training I felt fine, but the nausea, tachycardia, chest pain, diarrhea, shakes etc. would hit me afterwards. For some reason these post exercise attacks also often wake me from sleep. I'm not sure if anybody else has experienced this? Anyway after two years of not training I've finally returned to exercise and I'm experiencing the same problem. So, I guess my questions are: - What causes exercise intolerance? Why am I experiencing these awful symptoms hours after my workout? - If I keep going with my exercise plan will these attacks eventually stop as I get fitter? I'm very determined to get strong as I dropped a lot of weight during my last POTS flare up and felt extremely frail. Any advice anyone can offer about how to cope with exercise intolerance would be much appreciated. Cheers, Angie
  20. I experience this too. I become irritable and very emotional when my physical symptoms flare up. My husband always says, 'welcome back' when the storm is over. It's like I'm another person and I have no control over it. When I was in hospital during a particularly bad attack in 2014, they tested my serotonin levels because they were worried about carcinoids. The tests showed elevated serotonin but thankfully when they re-tested me 6 months later while I was feeling well the serotonin levels had returned to normal.
  21. Hi Evergreen, If I get any answers I promise to let you know. I'm seeing my neurologist on Feb 9th so I will discuss the symptom with her. Sorry to hear you're going through this as well - it's very unpleasant. Take care, Angie
  22. Hi there, One of my worsening symptoms is head pressure and a very stiff neck. In addition to the discomfort it is making me feel anxious as I don't understand what is going on. I have had intense head and facial pressure before and it has dissipated after a week or so - my head didn't actually explode I'm just wondering if I should speak to my neurologist about a possible CFS leak? When I was last in hospital they did suspect EDS Type 3 but I ended up being classified as only mildly hyper mobile (bendy thumbs, tongue that can touch my nose etc.) I also bruise very easily, have scoliosis and was diagnosed with POTS. Also is this head pressure safe to live with? Any reassurance you could offer about this symptom would be very much appreciated - i.e. it's uncomfortable and at times painful but won't kill you. I should add that I have been experiencing hearing trouble when I get this pressure - some sounds get distorted and very high pitched in my left ear. For the last three days I've also had a fluttering sensation on the right side of my head. Thank you, Angie
  23. I've responded really well to Metoprolol. I've been on it since March 2014. I tried weaning off it a couple of months ago and had a major flare up so I've gone back on it - 25mg morning and night. It has improved the quality of my life.
  24. Hi Robstahlobstah, I can relate. During a flare up I experience odd pressure and pain in my head too. Here's what it feels like - - Like a very tight band has been placed around my head - After an 'attack' my head will throb when I stand up and walk, when I lie down it's okay - At times it feels like something is rattling/clicking in my head - it's weird - Facial pressure I'm seeing my neurologist at the start of December and I'm going to ask her about this. If I find out anything interesting I will pass it on. Cheers, Angie
  25. I was given codeine in hospital a few years ago, prior to my POTS diagnosis and my heart rate shot up to 180bpm. It was not a great feeling. At the time my heart rate was already high (120bpm) but I felt the codeine pushed it up.
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