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AngieP

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Posts posted by AngieP

  1. Hi there, I'm reaching out to see if anyone could please shed any light on the chest pain I'm experiencing? I'm currently pregnant with my second child and have been experiencing episodes of chest pain during the first trimester. The pain often wakes me from sleep. I can best describe it as repetitive quick sharp stabs on my left side. These electric zaps go on for a few hours and then disappear. I find sitting up helps alleviate the pain. I also notice that the veins in my hands which are normally very prominent disappear. My hands also often become icy, generally I feel cold all over when the chest pain comes on.

    I've been taking 25mg of Metoprolol morning and night to help manage my POTS for the last 10 years. I'm used to having chest pain on and off, but being pregnant I feel a bit more vulnerable.

    When I saw my cardiologist about this pain last year, he did not feel it was cardiac related. He said it was unlikely to be something like Prinzmetal angina when I put this forward to him. This is reassuring but to help me mentally cope with the pain, I'd like to have some understanding about what my body is doing. Perhaps it's a circulation issue? After last night's chest pain, I woke up with a headache and heavy head. Not sure if this is related. 

    Thank you in advance for taking the time to read my post.  

  2. Hi @98rabbit, I'm so sorry to hear you've been diagnosed with POTS and also suffering from panic attacks. 

    I can totally relate. I was diagnosed with POTS 10 years ago and take 25mg of Metoprolol morning and night to manage my symptoms, which sound very similar to yours.

    Generally, I feel quite well but I do go through flare ups. After a bad POTS attack, I find my anxiety goes through the roof. I start avoiding certain situations; minding my young son on my own, going out to dinner with friends etc. 

    Mid last year I started having dreadful panic attacks and this is what helped me break the loop...

    - Talking to a therapist once a week  (I did this for a few months when I was really struggling)
    - Reading 'Complete Self Help Book For Your Nerves' by Dr Claire Weekes
    - Viewing Neal Sideman's tips on paniccure.com
    - Meditation, ASMR

    When I'm having a panic attack, I focus on the language I use to describe it and my internal thoughts. I tell myself this feels very uncomfortable but it will pass instead of I'm going to die! It's really hard sometimes and I don't have a complete handle on my anxiety, but it has definitely been reduced. 

    I hope you start to feel better soon. Living with POTS and anxiety is exhausting. Glad you've joined DINET - it's a great community for support.

     

     

     

  3. Thank you for taking the time to share your experiences and advice with me. I can't tell you how much this has helped to ease my anxiety over getting my booster. 

    @Jyoti- yes it is daunting knowing the jab will likely cause a flare up, but you're right, I'm sure the impact of Covid will be much worse.

    @edriscoll - I really appreciate this detailed information, particularly the facts regarding Omicron and the reminder that Delta is still circulating. 

    I'm off to get my booster tomorrow!

  4. Hi there, I'm based in Sydney where the Omicron variant is currently spreading rapidly. I've had two shots of the Pfizer vaccine (the last one just over 4 months ago) and I'm now eligible for a booster shot.

    My POTS is well managed with the help of Metoprolol, but after the first Pfizer vaccine I had a mild adrenaline surge several hours after the shot, which woke me at 2am. Then, after the second Pfizer vaccine, I had a huge POTS attack approximately 48 hours after getting the jab. This attack lasted much longer than usual attacks and was particularly bad.

    I want to get the booster for protection but I'm feeling very anxious. Has anyone experienced an adrenaline surge/POTS attack after the vaccine? Do you feel this is quite normal given the vaccine is activating the immune system?

    Thanks in advance for sharing your experience/advice with me.

  5. Thank you for sharing your experience with me @Pistol

    My son's safety is paramount to me and I recently spent a small fortune on child proofing my home. This has made me feel a bit more relaxed, as there is a safe space for him to play.

    I think I've just lost a bit of confidence following the last couple of attacks, but like you said, this flare up will end soon enough.  

    I nursed my son until he was 15 months old and I must admit it took its toll on me. I lost a lot of weight and I'm working on getting strong again. 

    Once again thank you for your support. It's wonderful to know that you have a 17 year old daughter and managed to navigate parenthood despite having severe POTS. I'm going to stay positive and get a grip of my anxiety because I want to enjoy motherhood too. 

  6. Hi @Pistol , thank you so much for your message.

    I was chatting with my husband this morning about how to best manage my anxiety. 

    During this recent flare up, I've become very anxious about having a POTS attack when I'm alone with my 18 month old. 

    Can I ask how you coped with caring for your four year old? I don't faint, but I get a cascade of symptoms (dizziness, nausea, chest pain, tachycardia, adrenaline surge). The POTS attacks are very different from the panic attacks (which I've also experienced). It feels like my body is melting down.

    I'm lucky that I have plenty of family members who will drop everything and drive over to my house to help me, but for those 20 to 30 minutes alone with my son, I'm terrified. 

    Thank you again for reaching out. 

    Angie

  7. Hello Pietro,

    Your story mirrors mine. I'm sorry you're going through a tough time and still haven't found a doctor to support you.

    I'm now 40 years-old and my POTS symptoms appeared in my late 20s. Initially I thought I was having panic attacks, but the palpitations, chest pain and debilitating fatigue made me suspect something else was going on. Like you, I used to be an avid runner and on some days I could barely walk to the local shops. I felt so frail. 

    I wound up in emergency rooms and saw three different cardiologists, one who wanted to do an ablation on me. I said 'no' as I didn't feel he was listening to all my symptoms. Then, I got incredibly lucky... during one hospital visit, a senior cardiologist witnessed me having a POTS attack and he helped me regain my life. 

    Here is what has worked for me...

    - Daily beta blocker (Metoprolol)
    - Going gluten free (I was having a lot of abdominal pain too)
    - Listening to my body and resting when I need to
    - Gentle exercise (I still can't get my heart rate up as it brings on an attack)

    The good news is that after a long period of terrible health, I started to feel strong again and live a full life. I'm now a mum to a very active toddler. 

    In saying that, I still have POTS flare ups from time to time. I'm in the middle of one now. I know it will pass, but I must admit I get anxiety when these flare ups occur. 

    I hope you find a doctor that listens to you.

    Take care

  8. 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.

  9. 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

     

  10. 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

     

     

  11. @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!

  12. 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.

  13. 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

  14. 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.

     

     

     

  15. 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.

     

     

     

     

  16. 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

  17. 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!

  18. 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

  19. 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. 

     

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