I have noticed lately that even when I don't have a headache, when I lie down I can feel my heart beating in my head. Throbbing but not hurting. Anyone else had this happen to them? It is really annoying and I can't sleep if I have to sit up.
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Hi, Melissa. I notice my heart beat in my head a lot. When I first noticed it I listened for a bruit, thinking I might have a small bleed, but didn't have one. It is also much more noticeable on the right side where my AVM was located.
Hi Melissa
I am just diagnosed AVM/DAVF. I, along with bruit and other a few other symptoms, have a pulsating head... I have no idea as I haven't seen a specialist yet... I will let you know if I find anything out!
hi had a swooshing noise in my head that i heard when i laid down from as long as i can remember (1st memory late teens and im now 44} when i was diagnosed in jan 2014 with an AVM in my left cerebellum i was told it was to do with it i had my AVM removed in nov 2014 and no longer hear the swooshing although when i lay down on the side of my wound i can hear my heartbeat occasionally and suffer with louder tinnitus.
Thank you for your responses.
Hi Melissa I have had this as an AVM symptom since my bleed when I was 15, in 1990. I can hear my heart beating in my right ear also. It's just the nature of some AVM'S
I had the same : my heart beating in my head, and very disturbing loudy beating noise in my right ear. This was related to a very high flow rate in my AVM (located in the right frontal lobe) in which 3 fistula were detected. These pulsating noises completely disapeared after AVM embolization. And could you believe this:during a few days not to ear them was disturbing !!!
Yup. I had it until the shunt was put in a few years ago after my bleed.
Yes Melissa I also get this at times also...After my operation I recall having clicking sounds here and there, which i was advised meant the skull was growing back...its strange we get these funny sounds etc but as long they arent an issue health wise then im ok with it...God bless!
Hi Melissa…that was my first experience with my IVM and what drew my attention to my procedures. Especially at bed time when my environment is quite, I could her it loud and clear which was very annoying and scary. My physicians thought it would disappear after some of the procedures were complete but to no avail I still tolerate the sound. After some years of tolerance I tend to learn how to ignore it. FYI
Orlando, I only have a very small amount of the sound now. Only if it is very quiet, I can hear it. More like a “cha cha cha” sound. Hopefully it means the AVM is going away or completely gone. Been a long 6 years this October waiting for it to go away.
I had that until my stroke caused a shunt to be placed. I still get it a very once in a while but it’s weird not being there after so much time.
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Same here. It helped me go to sleep oddly. I “almost” miss it. Although I do wish this thing was gone. Benadryl works just fine when I am having trouble falling asleep.
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Hello, Melissa
I started to experience a pulsatile tinnitus and heard a whooshing sound on my left ear as well two years ago and I could not sleep, that was the reason why I went to CT and MRI scan and that is how I found out about my AVM. Also these sounds were gradually disappearing after having two embolizations. Now that my AVM is 95% closed I can barely hear them it is just like a heartbeat, that I can notice sometimes when it’s very quiet around. But I hope this will disappear completely after the last embo at 9th. july.
Wow…that’s the first time I’ve heard of that happening but that is excellent news. I hope it completely dissipates for you and maybe it will for me as well. I guess time will tell…thank you for sharing. I will pray for you…
My pulsating sound in my right ear was the only clue I experienced when discovering my Intracranial Vascular Malformation. I tolerated it for more than a year thinking my body would resolve what ever the issue was but no such luck . I sought medical opinions and the next think I knew I was battling for my life and after may surgeries I gained some ground but there was no guarantee of life. After many surgeries, directly through my skull, directly thru my veins and through my artery, we managed to gain some life time for me but guess for how long? I’m extremely fortunate to be given more time so I’m going to fill it to the best of my ability. God Bless…
Hello,
My case is very similar, after the 3rd embolization the whooshing sound disappeared, I cannot hear it anymore, thank God the surgery went well and it seems that my AVM is now completely closed. I am currently waiting for the control DSA which will take place on 12.10.2018. hopefully that will confirm it too. It has been a rough fight for me too, indeed… In the first place when I started to hear the pulsating and whooshing sounds I thought it was because I had two wisdom tooth surgeries before, I considered that probably needs more time to heel but it was getting worse, that was the main trigger in my situation as well, that was the reason why I did a Ct and MRI scan… I was not expected for this diagnosis, I have not even heard before about such thing as an AVM… but I have learned a lot about this experience from medical and personal side as well.
I hope you are doing well today and final resolution subsides for you. Thank for sharing as often times I get very lonely with this illness especially after my wife of 30 years leaves me…go figure.
That noise is called a bruit. Mine went away after surgery which was great because it was so loud and strong I had trouble sleeping at night.