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FND and cardiac symptoms

underdiagnosed
underdiagnosed Member Posts: 30 Courageous
Hi. after many years battling the system, I've just been diagnosed with functional neurological disorder, which is little understood. My symptoms include left sided weakness, tinnitus, dizziness, headaches, light sensitivity and exhaustion after walking only a few yards. I have previously been diagnosed with idiopathic hypersomnolence (the opposite of insomnia) and malignant vasovagal syndrome (which causes me to faint), both of which are rare conditions. The consultant however could not explain my cardiac symptoms which I suspect may in some way be connected. They can be very severe at times and include sudden bouts of breathlessness, collapsing and palpitations. I wake up several times a night with tachycardia (raised heart rate) which is sometimes coupled with breathlessness, despite sleeping sitting up which reduces the severity of the symptoms. This normally happens when in REM sleep (dreaming). I was wondering if anyone else has this unusual combination of cardiac and neurological symptoms and if one could be affecting the other? I'm unsure whether I have the correct diagnosis or not. So far I have been offered no support although I am waiting for a cardiology appointment. Thanks for your help/support.

Comments

  • LaughingLolly
    LaughingLolly Member Posts: 100 Pioneering
    Yes. But I have never found any answers. 
    A laugh a day keeps the psychiatrist at bay. 
  • Shepp1958
    Shepp1958 Member Posts: 5 Listener
    I have no pain in my hands l can pick up things in the oven with out feeling the heat and l could go in to the freezer in a tea shirt and not feel the cold. Also I can stick pins in my hands, legs and not feel it. 
  • susan48
    susan48 Member Posts: 2,222 Disability Gamechanger
    I have FND , mine is tics, involuntarily body movements.
    i have just finished a course of treatment with a psychologist who specialises in FND. 
    This was very helpful in understanding why these things happen.
    Maybe ask you gp to refer you. Unfortunately Iv no understanding of the cardiology aspect of FND.
    theres a good website. FND HOPE, maybe there’s something on the site to help you.
     
  • Hope317
    Hope317 Member Posts: 1 Listener
    Hi. after many years battling the system, I've just been diagnosed with functional neurological disorder, which is little understood. My symptoms include left sided weakness, tinnitus, dizziness, headaches, light sensitivity and exhaustion after walking only a few yards. I have previously been diagnosed with idiopathic hypersomnolence (the opposite of insomnia) and malignant vasovagal syndrome (which causes me to faint), both of which are rare conditions. The consultant however could not explain my cardiac symptoms which I suspect may in some way be connected. They can be very severe at times and include sudden bouts of breathlessness, collapsing and palpitations. I wake up several times a night with tachycardia (raised heart rate) which is sometimes coupled with breathlessness, despite sleeping sitting up which reduces the severity of the symptoms. This normally happens when in REM sleep (dreaming). I was wondering if anyone else has this unusual combination of cardiac and neurological symptoms and if one could be affecting the other? I'm unsure whether I have the correct diagnosis or not. So far I have been offered no support although I am waiting for a cardiology appointment. Thanks for your help/support.
    Hi, I found your post here thanks to my research online "fnd and palpitations".

    I have so similar case to yours. I really wanted to ask you if your symthoms are better now, or how is going, any news, any more info for your case? Please. 🙏

    I've been diagnosed FND now, but no asnwer for my cardiology situation yet, i have very soon (finally! after so long waiting) a cardiology appointment, but i am scared that they will not find anything, I feel it's all connected to this my issue with my whole nerve system. It keeps me awake at night. I went in hospital and called medical fast-attention number (for every country is different, depends where you are) but only one thing they could tell me that they are not heart attacks and i need wait for my cardiology appointment. I tried the sleeping pills, but working just sometimes. And definitely all of this FND I have (or whatever is wrong with my nerve system) is not because of stress or anxiety. I am really struggling to sleep. I always had this unlimited motivation inside me and happiness, like a kid.. which always helped me and people around me to be very positive and smile. But I am suffering everyday, for months now. I started FND appointment, but not sure I can explain how i feel and about my symptoms in that fix time i have and with those fix questions (to write down fix answers, if you know what i mean).. Definitely my warrior spirit inside me helps a lot, but even for people like me (always motivating inside and happy for any little thing) I am struggling sometimes... because of the nerve pain, daily. But at least i know when starte my palpitation situation (so I kind of know the cause)... months ago i took just one Amitriptyline tablet, hoping to solve somehow my nerve pains everywhere (prescribed from my doctor), but from then on.. (for months!!!) I have palpitations, constantly... during the day and night, at night is unbearable, mostly when it's so strong or awakes me in middle of the night. I am so tired of it... (to keep me positive and fight it and bear it all the time) ..but I'm still very positive, looking always to the future, with hope.
    I saw few comments here and there, and I will sign up to that fnd hope website and see more info.

    But wanted to ask you anyhow, anything you can tell me about your case?
    ... because i have so similar case to yours. Please let me know. 🙏
    Thank you so much! 
    Hope
  • underdiagnosed
    underdiagnosed Member Posts: 30 Courageous
    hi
    thanks for reaching out to me
    i'm sorry that you are struggling with these symptoms
    i also find that stress, anxiety, depression do not seems to be the cause for me.
    in a way the pandemic has helped stabilise my symptoms as i very rarely go out or do anything, but my sleep patterns have got a lot worse.
    my left sided weakness got better before it recurred again and now seems to be more permanent. it has got better a little, but i feel at best its likely to be a recurring problem for me. its mainly my hand that is affected.
    i wake all night long during REM sleep with tachycardias. i can't sleep lying down as i would wake with severe breathlessness (to a dangerous level). i use an adjustable bed which helps reduce the severity of my symptoms and stops the breathlessness at night, but they are expensive so if you think it might help try propping yourself up with pillows first, because your symptoms may have a different cause to mine, even if they are similar. it doesn't stop me from waking up, but the symptoms are less severe. i have been prescribed pregabalin (an epilepsy drug) by a sleep specialist, which helps a little. this drug has been given to me as a last resort as the other drugs they'd usually prescribe for these symptoms i either can't take due to some of my other symptoms or i've had a bad reaction to. the pregabalin does reduce my number of wakes (my record was 18 times in a night) and causes me no side effects, but isn't a miracle cure. i also use a lavender eye mask and pillow spray and was surprised to find they also help a little.
    the cardiology fitted a loop recorder (implantable heart monitor), which is generally about the last thing they'll try if all else fails (i think). they saw that there was a problem but concluded that my palpitations were probably not cardiac related. they could not suggest what was causing them, only that they were happening.
    breathlessness by day is fortunately rare for me but can be very severe and has caused me to collapse. i struggle to get through to most doctors about this as they usually assume it must be panic attacks, but i've been given oxygen for it before and have displayed other physical symptoms to people who've observed them so it can't be. it appears that it happens when i get up and try to walk a couple of steps, generally at times when i'm struggling physically and have perhaps overdone things.
    i don't expect my condition to get better as generally for me its been a gradual decline with peaks and troughs along the way, but i try to stay positive and focus on the things i can do rather than worry about the things i can't, and remember the good things in my life. i too feel i have a warrior spirit which helps. all i know is not fully knowing what's wrong with me, so i know how to cope with that, and i do.
    i hope that you get some answers.

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