Feeling your heartbeat through your nervous system

Recently, I’ve been getting a twitch that runs my entire body, at the beat of my heatbeat (very frustrating) I’ve also had twitching in most of my body (not a big twitch that other people notice) but I can and it’s weird. 5 yearts after my operation, I haven’t had this before. the specialist said it’s not related to the operation, as the MRI was all good.
Has anyone else had a similar problem?

I feel my heartbeat in weird places, I have sometimes thought I was pregnant cuz I felt it in my tummy! Didnt know it was AVM related, but good to know (sorry) that others experience it too! Hope you get it sorted out, let us know when you find the answer!

Sometimes I feel it in my eye or across the back of my head. I know what you mean, Jo, about being glad to hear that you are not the only one experiencing these weird symptoms. I’m sure that Tim would agree that it’s wonderful to be able to talk to people who understand what you are talking abot without thinking that you’ve gone off the deep end! lol

That’s great guys - I thought it was silly. You try and explain it to people, but it’s like…duuhhh excelent. Thanks, I won’t be so worried now

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I’ve had the same thing. I sleep with earplugs every night because my husband snores, and these make me more aware of my own breathing and internal rhythms. Sometimes I have a hard time falling asleep because I can feel my heartbeat so strongly in strange places. I’ve found that the feeling is worst when I eat dinner too late or have any sort of increased blood pressure; I try to eat early now and minimize the amount of salty food I have late in the day.

Do you all have the problem with the loud bruit - hearing your heartbeat? I’ve heard it late at night for as long as I can remember, so I thought that everyone did! It has gotten much louder in recent years because my AVM is in the right parietal lobe near my ear. I’ve lost some of my hearing,but I hear that bruit loud and clear! lol

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So, it is a common problem with us…phheeww. Before the operation, I could feel all the bloodflow in the top of my body, but this is more electrical (if that makes sence)

I hear mine whenever it is quiet now, but I’m so used to it that it doesn’t bother me…except for when I’m trying to sleep. That’s why I’m either on here or watching t.v. late at night…trying to distract myself until fall asleep.

I think it’s wonderful that your wife reads this network too, Liam! My hubby gets so nervous about my pain and doesn’t like to discuss the forum, although he is happy that I have you all to help me.

Hi Tim,
Isn’t this forum wonderful!! I have this as well, I am like some of the others and it seems to be worse at rest but I also get it when walking and sometimes when I am trying to pay attention to something it drowns out my thoughts. My Dr’s told me that I would see changes for up to 10 years and I believe it, maybe they are over!! Today is my 10 year surgery Anniversary!! Yes, April Fools Day!! Happy AVM Day To Me!! ha ha. The Dr’s will tell you everything is not related to the AVM. I have been told that the whole time and finding this forum a short time ago has allowed me not to feel so crazy after all. It’s amazing to me that the Dr’s say it can’t be related, how can it not, look at how many people with such similar experiences having the same symptoms or side effects??? Sounds like we may know more than they do at times.

I agree - I think “they wouldn’t have experienced the sesation, so they wouldn’t know” maybe not related, is a way of saying "I’ve got no idea what your saying, but surely it can’t be caused by the AVM. We know now, obviously, it is. Might be deffierent places or different times, but we all seem to get it to a degree. cool (sort of)

I used to hear the bruit very frequently before my craniotomy! When I was a kid, it sounded like a little dog panting in my ear, so I told my mom about it and she told me it must just be the refrigerator (?!). A few years later I realized it was my heartbeat. Didn’t know you weren’t supposed to hear your heartbeat though!

I have heard it a small handful of times since my surgery, though, and it makes me extremely anxious. I’m going to ask my neurologist about it next week, but I suppose it’s ok since my MRI was clean, right?

I getthe heart beat sound in my left ear alot, mostly when I wake up first thing or if im doing something working to hard then I get that punding sound in my head drives me nuts too.

Hi Aleah. that’s what I think (my MRI is clean also) but it still makes you a bit worried. I’m wondering if other things, cause it to come on? my teeth seem to be most of my problem. I had an absess removed and the heartbeat feeling, almost went away instantly. I still get a dull feeling occasionally, but I’m now suffereing a weird sensation occasionally, like a sinking feeling. a bit jittery. only been 3 weeks though, so it may take a bit longer. Hope you are well!!

My heart beat sound is really random, I was just diagnosed with heart palpitations, but those are in my chest, but I have had my fair share of weird twitches and weird heart beat feeling, especially in my stomach too like Jo said. It sure freaked me out! These things don’t happen that often, but when they do its so weird.

I don’t know why it happens, I think it’s made worse by something else in the body. I still get some twitched and the occasional heartbeat after getting my absess taken out, but I have another wisdom tooth that is rotten. That comes out Friday (see what happens then) Obviously the teeth don’t cause all the problems, but maybe there’s something else that’s causing it to be worse. I also know now that not smoking almost makes it non existent in my case. just have to give up once and for all

if u find a way Tim let me know as my smoking is worse than ever, the longer i’m off work the more i puff Grrr.
was thinking of getting one of those plastic cigs, so uncool