We are AVM survivors, here for your support.

What were you doing in the minutes that led up to your AVM rupture?

My son, who's 9, was eating ice cream at the time of his bleed. He and his father both get "ice cream headaches", and suddenly, he complained of one, only it didn't go away. In researching the possible causes of brain hemorrhages, I came across one study that mentioned "cold exposure" as being a possible cause of strokes and heart attacks. I immediately thought of my son's initial complaint, and looked up what happens during a brain freeze. It turns out that there's a nerve above your palate that, when it senses cold, sends a message to your brain to prepare for cold. The brain gets the heart to pump extra blood to it in order to keep it warm, so the heart does. That extra blood dilates the vessels in your brain, causing an "ice cream headache" in about 33% of the population. I wonder if that sudden dilation is what caused Ryan's AVM to rupture. Ryan's neurologist thinks I'm nuts, of course, but my half-baked theory is that SOMETHING had to trigger the rupture. Nothing is truly spontaneous -- not even blinking. Something has to trigger the bleed, and I'd like to know what it is.

That's where my question to you all comes in: what were you doing in the moments right before your bleed? Were you sedentary, active, eating ice cream, shoveling snow in the cold, sleeping? Was your heart rate elevated at the time? I'd like to know your experience, if you don't mind sharing.

Maybe, just maybe, for those of you out there who aren't able to have your AVM(s) obliterated, we can figure out some triggers. Thanks.

Kelly (Ryan's mom)

Tags: AVM, bleed, hemmorhage, hemorrhage, rupture, triggers

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Replies to This Discussion

Permalink Reply by mary kate on April 24, 2010 at 2:28pm

Sorry...my bleed goes against your theory. I was taking a hot shower, when I heard a kind of pop sound in my head followed by a very bad pulsing headache and whooshing sound.

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Permalink Reply by Kelly Nelsen on April 24, 2010 at 2:52pm

Hi, Mary Kate,

No, don't be sorry. I want to hear both sides. Thank you for your reply!

Kelly

mary kate said:

Sorry...my bleed goes against your theory. I was taking a hot shower, when I heard a kind of pop sound in my head followed by a very bad pulsing headache and whooshing sound.

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Permalink Reply by Kim (Jaclyn's mom) on April 24, 2010 at 3:07pm

Hello Kelly-My daughter was sleeping when her avm bled. She woke up screaming of a headache and began vomiting every 15 min. That's how our nightmare began.

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Permalink Reply by Sandra Krack on April 24, 2010 at 4:07pm

I woke up what a really bad headache.Eye sight was blurred. The pain was so bad, throbbing,pounding, i could taste and smell the blood. lots of poppin sounds.

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Permalink Reply by Toni Yeomans on April 24, 2010 at 4:22pm

I was out at the bar with some good friends, and had just finished my first beer. About halfway through my second one was when the headache started. I got really sensitive to light (mostly the ones at the ER were bothering me one I got there). I had just gotten home from a 6 hour work day not that long before, so it's fully possible that my blood pressure & stuff were probably a bit higher than if I hadn't been working or drinking.

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Permalink Reply by Kelly Nelsen on April 24, 2010 at 8:47pm

Thank you, guys, for sharing. This is helpful. I guess as a mom, I want to see what (if anything) I can do to help Ryan not have a bleed again. If so, I want to know what it is, and if not, I want to be okay with that.

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Permalink Reply by Ben Munoz on April 25, 2010 at 7:48pm

Interesting post. I had my "sentinel headache" on a plane flight (my 20th in 10 weeks for work). A week after that I had a bleed eating seafood.

Ben

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Permalink Reply by Jordan Johnson on April 26, 2010 at 9:59am

I was taking a test in school when I was 9, no headaches and no blurred vision, but I did have a pain in my right eye, I went to wash my eyes hoping to help, and when I was walking back up stairs my left leg sort of dragged and when I got back to the classroom and tried to pick up my pencil with my left hand I couldn't, that's when my teacher sat me at her desk, propped my feet up, and went and called 911 and got the principal, they said I was white as a ghost, and I remember feeling kind of disoriented, as the principal carried me downstairs through the doors to the awaiting ambulance I thought I was going through the gym doors, which are in a different building on the school lot. Sorry if this doesn't help but I hope it does.

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Permalink Reply by James R. Glass on April 26, 2010 at 1:26pm

Kelly,

I was riding my bike when my AVM ruptured and hemmoraged. I would assume that my heart rate was elevated at the time. It was a very hot day in April - the first warm day of the year, so I decided to get the winter rust out with a bike ride. I had a headache, a whooshing sound, and was very confused (I couldn't remember my name), and eventually I lost consciousness. I was with my 4-year old daughter when it happened. She helped flag down a park ranger and get me help. I've always assumed my bleed was caused by the increase in blood pressure of exercising, but my doctor is cautious of making any specific determination. That is the hardest part - not knowing why it happened.

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Permalink Reply by ashok rajamani on April 26, 2010 at 1:49pm

you wont believe this --
i was MASTURBATING!!!!
its in my upcoming memoir.
www.ashokrajamani.com

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Permalink Reply by NRJArchitect on October 13, 2011 at 10:58am

That would increase your blood pressure.

I have not yet had a bleed. Right now I'm afraid to tell my husband that I'd really rather not have a mind blowing orgasm.