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

▶ Reply to This

Replies to This Discussion

Permalink Reply by Louisa on October 12, 2011 at 5:56pm

If I haven't already answered this...I was washing my rugs and that's the last thing I remembered for 10 days!

▶ Reply

Permalink Reply by Holly on October 12, 2011 at 9:57pm

I just wrote you a book then decided to go with the short version... I may blog the book later when I'm done tearing up.

The short version is that when it happened I was relaxed in the evening sitting having a phone conversation. But, I was not a big drinker but occasionally would go out with friends which I had done the night before. I had drank more than usual as well as pretty much pulling an all nighter, also unusual. I believe the trigger was hangover, sleep deprivation and stress if I do the math. But I'm in my 30's so I have seen my share of all nighters and occasional nights of heavy drinking so why not then? Who can say for sure?

You are not crazy for searching for the why. And you are most likely correct. For liability purposes no doctor it seems will confirm or deny a single thing. Trust your gut. My biggest conflict lately when I think about it is when is the best age to discover or be hit by this? I wish it didn't exist at all but here we are. I am sorry you and your family are dealing with this and I hope your son is AVM free asap. <3

▶ Reply

Permalink Reply by kneenah on October 12, 2011 at 10:12pm

Aug 28th 2011. My sister had her bleed. She had been complaining about headaches but of course we try to diagnosis ourselves before we go to the doctor. days before I told her to take some excedrine which worked a little bit. Her headaches were so bad she left work one day from work to sleep her it off she even told me she had numbness on her whole left side i told her to take motrin. Well Aug 28th east coast got hurricane Irene. My sister was soo nervous about the hurricane she spent over $500 in supplies she stayed at my mothers house that night 2hrs after 8am the hurricane pasted she called me and teased me. She asked me if i held on to my boyfriend at night and yelled i would never let go (like titanic) an hr later she told my mom she had a really bad headache. She gripped the left side of her head and sat down on the sofa my mom told her to rub her temple. My sister kept saying how badly it hurt my mom sat down and asked her if she wanted her to rub her back. My mom then sat next to my sister on the sofa and my sister lend on my mom, my mom thought it was because she wanted the back rub until she noticed my sister was having a seizure. My mom got nervous and started to yell my sister name. My 9yr old sister ran down and saw what was going on. she ran back up stairs and got my older sisters daughter who then called 911 and told them her mommy was shaking. they rushed her to Stamford C.T hospital where they did a ct scan ruled out bleed. they transferred her to a trauma hospital Westchester Medical Center N.Y.C and there they did a MRI ruled out avm. She was 17days in a induced coma.

▶ Reply

Permalink Reply by Anabel Meza on October 12, 2011 at 11:22pm

HI!
I was taking a shower on thanksgiving day, Thats when the strong headaches started, I faint out. I let the days pass i Did not want to go to the hospital..BUt the strong headache didn't want to go away. The same week we found out that I had the avm bleed and cause an aneurysm. It was terrible that week. But is like a new Journey no. Thats my history.

▶ Reply

Permalink Reply by Lizbot on October 13, 2011 at 3:02am

It was quite literally exactly the same as any other day for me. Nothing at all out of the ordinary to indicate anything was wrong and I'd gone about my regular routine with no deviation. In the moments leading up to the bleed I had arrived at work and just sat down at my desk after making a coffee, I hadn't actually drunk any yet though. I would love to know why it could've happened but this leads me to believe it probably is fairly random.

▶ Reply

Permalink Reply by Karen W on October 13, 2011 at 1:21pm

I've been waiting for someone to ask this. In 1975 (confirmed bleed), I was having sex. In hindsight I find this funny and scary. In 2009 (suspected but unconfirmed bleed), I blew my nose. I really don't think any one thing triggers a bleed. I'm sure there are things that put us at risk, such as smoking, excessive alcohol, high blood pressure... I've been told some people have AVMs and never bleed.