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.
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.
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.
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.
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.
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.
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.
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.
Do you remember if you were nervous when you were taking the test?
Jordan Johnson said:
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.
My 8 year old son, Trevor was over friends of ours playing. We had just come home from being snowed in at a hotel in Lancaster. We droppped the children off at a friends house so that we could shovel our way into our house. The kids had finished lunch and were running around playing. He said he didn’t feel good suddenly and thought maybe he had to go to the bathroom. Next thing he remembers is that he was vomiting. He tells me he was sort of confused and that my friend then found him in the bathroom. We were over to get him within 10 minutes. He was out of it and vomiting a lot. We got him home (5 min ride), the vomiting slowed down and the headache began.
I am with you on constantly thinking how can we prevent another bleed before he is cured. Hearing that it has happened to some simply while sleeping makes me think that there is no rhyme of reason. No contact sports and we try not to let him play too hard. I personally think that increasing blood flow could aggravate it. Of course as we read, some folks had them doing nothing.
When I had my sudden headache and “seepage” from the AVM it was early in the morning and I had been upset with my foster son for taking so long to get ready for school. I wasn’t overly upset but I do remember being extremely annoyed. So my blood pressure was obviously higher then normal and heart rate was elevated, however this was only about twenty-thirty minutes after waking up.
March 21st, 1996 at 9:45 AM… I remember it like it was yesterday and will never forget it lol… Is that close enough for ya?
Kelly Nelsen said:
Do you remember if you were nervous when you were taking the test?
Jordan Johnson said:
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.
My daughter was laughing really, really, hard while doing something silly with her sister, when all of a sudden she had a terrible headache and started the 24hrs of vomitting, that began our journey. I’m sure the laughing got the blood pressure pretty high.
Wow! I love your theory! I tend to theorize too:) Mine hasn’t bled per se, but it likes to make me think it has! I get “migraines” that are excruciating, blurred vision, repeated uncontrollable vomiting and left sided paralysis. Fortunately, although these symptoms have bothered me for years, they have never been due to a bleed! They always happen when I’m just resting, or they often wake me from sleep. Problem is, there is no way for me to know whether it’s an “innocent migraine” or a bleed!
Thanks. I’m glad there’s at least one person who doesn’t think I’m completely nuts! Speaking of migraines, blurred vision, and the like, I’ve been wondering about Ryan’s intermittent bad headaches, double vision, and dizziness. Ever since his bleed, he’s down and out a couple of times a week with this stuff. I assume it’s because of the AVM. Does this go away on its own, or will he still have these intermittent things as long as he has an AVM? You sound like you’ve had yours for a while, so I thought I’d ask you.
Vera K said:
Hi Kelly,
Wow! I love your theory! I tend to theorize too:) Mine hasn’t bled per se, but it likes to make me think it has! I get “migraines” that are excruciating, blurred vision, repeated uncontrollable vomiting and left sided paralysis. Fortunately, although these symptoms have bothered me for years, they have never been due to a bleed! They always happen when I’m just resting, or they often wake me from sleep. Problem is, there is no way for me to know whether it’s an “innocent migraine” or a bleed!
My heart goes out to your little guy:( I’m a grown woman and I have a tough time dealing with my intermittent bouts of AVM horror. I have to tell you, everyone is different. Ryan’s headaches may change over time. When I was much younger, I remember being sick what seemed like a lot to me then (probably once a month). We though (along with my not so great doctor) that it was “the flu”. With changes in the body, headaches can change too. I have gone an entire year without headaches before. When I do get one, it’s horrible. What I do know is that blood is incredibly irritating to the brain when it isn’t where it’s supposed to be (in the vessels). Depending when Ryan bled, it may take a while before the blood clears and things start to regulate. Are the headaches getting a bit better? Hopefully they will progressively lessen over time to the point where they are manageable. Has your doc prescribed a nice pain killer for him? The best thing is to de-stress. Try giving his noggin a nice relaxing massage around the temples and forehead. When my head is throbbing, my Fiance, or Mom, or Dad, or any other loved one often will apply gentle pressure to my head with both hands (like they are trying to compress it, but not actually), which also helps. Just giving Ryan lots of love and physical touch will help him get through the headaches.
Wishing Ryan (and you and your family!) the best of luck!
My symptoms are extremely close to Vera’s and I can say that at least for me mine have lessened as I got a bit older (out of the preteen early teen years) I still get excruciatingly painful migraines but less often. Like she said, everyone is different. Luckily mine hasn’t bled yet either, so I do not have an answer to your original question.
About the massaging head, that is a tremendous help. I still have my migraine after but it feels so good. My shoulders also get tense so if this is the case you can also give a back massage as well.
