I was giving birth to my son, and I vaguely remembered the nurses telling me to move to another bed…something felt weird…confusion…blurry…2 days later I started non stop seizures. The doctors kept telling me I had a headache, but I didn’t.
However, that being said nausia was a different story. I vomitted nearly every other month between the hours of 3am and 4am (it wasn’t the flu), and would get up and go to school from the ages of 12-18 or so. I also had “bedspins” before going to sleep quite often. I thought these things were normal.
CHRISTMAS MORNING 2008…I was in the mirror getting ready for breakfast and I was 6 weeks pregnant when it hit… I was 24 years old. This has been one hell of an experience changed my life forever.
Were you aware you had the malformation pre-pregnancy?
Kellie Fox said:
CHRISTMAS MORNING 2008…I was in the mirror getting ready for breakfast and I was 6 weeks pregnant when it hit… I was 24 years old. This has been one hell of an experience changed my life forever.
Out for my girlfriends 22nd birthday going home to get some paracetamol to get rid of the headache then passed out and luckily managed to call an ambulance. Then didn’t get home for 2 weeks, unbelievable pain, a woman on my ward said 10x worse than giving birth!
Luke x
I was told it was like a time bomb that was going to go off eventually and things that increase blood pressure make it come which isn’t necessarily a bad thing as it gets it out the way and discovered.
Luke x
Kelly Nelsen said:
It seems that, consistent with the research I’ve read, most (but not all) people experienced some rise in blood pressure, and that triggered the bleed. For my son, it could have been the ice cream and my little half-baked theory. Others were laughing really hard, angry at someone, running, biking, or doing some activity that could have caused a rise in blood pressure. Still others, though, were sleeping. (Hmmmm. I wonder if an intense dream could cause a rise in blood pressure?)
The neurosurgeon we saw yesterday recommended surgery for Ryan’s AVM, and one of the things he said was that for the two-to-three days following the surgery, they’d purposely keep his blood pressure low in order to reduce the risk of a post-operative bleed. I’ve read about that on this website and in the research, too. Blood pressure seems to be a key.
So what do we do about that? How do those with AVMs where surgery isn’t recommended keep their blood pressure down to reduce the risk of a bleed? Do you want to avoid all emotion and activity? Do you prefer to limit the obvious triggers (bungee jumping, sky diving, bull fighting, etc.)? What do you think?
My bleed started when I was asleep. I suddenly woke up with the most excruciating pain in the right side of my head. I can remember thinking how exact the pain was - like I could pinpoint it. Then the nausea came so I tried to get out of bed to go to the bathroom, and collapsed on the floor. I remember bits and pieces of the following few hours, then the next thing was waking up in the hospital a week or so later. The ice cream theory is very interesting. 
I remember the day June 11th being very bright; I just thought it was because it was summer. I had just graduated from high school five days before. Earlier that year, my high school chapter of Future Business Leaders of America went to the state competition and I won a spot at the National level! That morning my mother and I had gone shopping to prepare for my journey; I had to buy shorts as the National Championship was in Orlando Florida that year! Well about two hours into the trip, I had to stop and vomit. The brightness just got worse and when we returned from our shopping trip it was evening time. My mom and I started arguing over my boyfriend, she didn’t like him and of course I loved him, he is now my husband. We argued for hours and finally, I told her, “tomorrow, I’m moving in with Don”. I was eighteen so the choice was mine. That flew into her and she really started shrieking. I tell her, “Mom I have a headache, you’re going to kill me”. The last thing I remember her saying was, “I’ll give you a headache”. And I blacked out. My teenage brother carried me to the living room and laid me on the couch and advised my mom to call 911. When she finally did, she waited because, I think she thought I was actually dieing, it was morning; my ex-stepgrandfather drove the ambulance that took me to the hospital, so that was kind of cool. Here’s where it gets weird: We pulled over at the entrance to my grandma’s apartment and I remember thinking, wonder what grandma’s doing; later, I was told we pulled over because I had died, and paramedics had to revive me. I kept blacking out and remember bits and pieces of the ordeal; my boyfriend had made it to the hospital and I remember he was the only one who could calm me. He also discovered that he was going to be a father as I was weeks pregnant. It was my little boy that saved me; doctors speculated that he gave my body strength to get through the bleed.
Quite a story, I know…
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Wow. That gives me the chills. Thanks for sharing. You must have been bleeding little by little throughout the day, huh?
I guess so. When I went through graduation, I felt bad; although it could have been the pregnancy, which I knew nothing about. I believe that rupture began when I was three: I was involved in an auto accident where I earned a concussion; it took seventeen stitches to seal the gash over my left eye; ironically, the hemorrhage occurred on the left frontal lobe. So who really knows? The doctors speculated that I was born with it; however, I bet ya my mom never mentioned the auto accident. Regarding the chills: Sorry:)…I could really spook ya if you wanted?
Mary Kate, the same thing happened to my mother expect she was in the bath tub! Not that I think you are wrong Kelly, I too believe something had to trigger it, maybe the bath was hot and it raised her heart rate. Its hard to tell with something like that.
-kayla loerch
-daughter of Kellie Calvit.
Luke S said:
I was told it was like a time bomb that was going to go off eventually and things that increase blood pressure make it come which isn’t necessarily a bad thing as it gets it out the way and discovered.
Luke x
Kelly Nelsen said:It seems that, consistent with the research I’ve read, most (but not all) people experienced some rise in blood pressure, and that triggered the bleed. For my son, it could have been the ice cream and my little half-baked theory. Others were laughing really hard, angry at someone, running, biking, or doing some activity that could have caused a rise in blood pressure. Still others, though, were sleeping. (Hmmmm. I wonder if an intense dream could cause a rise in blood pressure?)
The neurosurgeon we saw yesterday recommended surgery for Ryan’s AVM, and one of the things he said was that for the two-to-three days following the surgery, they’d purposely keep his blood pressure low in order to reduce the risk of a post-operative bleed. I’ve read about that on this website and in the research, too. Blood pressure seems to be a key.
So what do we do about that? How do those with AVMs where surgery isn’t recommended keep their blood pressure down to reduce the risk of a bleed? Do you want to avoid all emotion and activity? Do you prefer to limit the obvious triggers (bungee jumping, sky diving, bull fighting, etc.)? What do you think?
Hi:)I was sleeping, but possibly could have been stressed as I was quite busy at the time, however I have low blood pressure anyway so I don’t really know, when I asked the team about stress they said no, it was nothing that I did…
My lady, Nellie, my two children and I had just returned from a wonderful vacation at a water park in Arkansas. We got back in town on a satruday afternoon. I promised my children that I would take them to see “The Dark Night” Sunday, ( the batman movie with heath ledger). It was during the movie I had a severe headache. So much so I was feeling a lil’ nauseous, and was anxiously waiting for the movie to end. On the drive home I was concentrating on my driving and not talking much. My daughter sensed something was wrong and asked if I was ok. I dropped the kids off at my ex’s house and went home. I told Nellie I wasn’t feeling well and wanted to lie down for a bit. My daughter called and again asked if I was ok, I told her about wanting to lie down and relax for a while. Evidently I dozed off, and awoke to my Lady asking questions of me. I tried to answer but couldn’t, the next thing I remember was two paramedics in my bedroom asking if I wanted to go to the hospital. I said yes.
My daughter and son actually saved my life, by calling Nellie and telling her that something was wrong with dad, (me). Nellie called the ambulance, the ambulance arrived and I was escorted out to the waiting ambulance by the two paramedics. My Lady, daughter and son, and my ex, were outside crying, I told them that I would be ok. Nellie followed me in her car to the hospital, my children and my ex were right behind her.
That is basically what happed just prior/during, to my AVM brain bleed.
My daughter was sitting in her room playing with her dolls when she came into the living room and said her head hurt near her right temple. We couldn’t tell if she had something in her eye or a headache or what was happening. Within a few minutes, she vomited and was unconscious within a half-hour of the first pain.
Hi Kelly,
My fiancés bleed occurred at a flyball competition (dogs), it involves a lot of shouting in order to get the dogs hyped up in order to run. She recalls hearing a pop in her head and that’s when things went downhill for her. We still don’t know (and I don’t think will ever know) if her AVM bled or her aneurysm bled.
Regards
James
Holly,
You know, it’s interesting reading all of these responses to my question. There seem to be plenty of people whose bleeds started perhaps as a result of an increase in blood pressure in their brain, but there are also plenty who didn’t seem to be doing anything that would raise their blood pressure, like your son. I’m coming to the conclusion that we can’t do much to prevent a bleed. If it comes, it comes, and God will do with it what He wants to have done. Imagine how special God considers Michael to want him in heaven with Him now! Not that that thought can possibly do much to ease your suffering at this point – I can’t imagine what you’re going through.
In light of what I’ve read (and yes, I HAVE done extensive reading on AVMs), Ryan is participating in whatever he feels good enough to participate in. This past weekend we went to a motocross track in Michigan for his Make-A-Wish trip and he raced his motorcycle. He had an AWESOME time. He also participated in baseball this past spring (when he felt up to it). He’s starting to know his limits and his triggers, and so are we. I just make sure not to push him to do anything he’s not up for. I guess that’s the best I can do.
Take care, Holly. Thanks for responding. I speak for everyone that’s a part of this network in saying that we’ll support you in any way we can.
Kelly
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Kelly,
I appreciate your condolences. My twelve year anniversary of my bleed was last month. It’s been almost twelve years since I held my infant son so time has healed; all the same, thank you:).
Hollie
Kelly Nelsen said:
Holly,
You know, it’s interesting reading all of these responses to my question. There seem to be plenty of people whose bleeds started perhaps as a result of an increase in blood pressure in their brain, but there are also plenty who didn’t seem to be doing anything that would raise their blood pressure, like your son. I’m coming to the conclusion that we can’t do much to prevent a bleed. If it comes, it comes, and God will do with it what He wants to have done. Imagine how special God considers Michael to want him in heaven with Him now! Not that that thought can possibly do much to ease your suffering at this point – I can’t imagine what you’re going through.
In light of what I’ve read (and yes, I HAVE done extensive reading on AVMs), Ryan is participating in whatever he feels good enough to participate in. This past weekend we went to a motocross track in Michigan for his Make-A-Wish trip and he raced his motorcycle. He had an AWESOME time. He also participated in baseball this past spring (when he felt up to it). He’s starting to know his limits and his triggers, and so are we. I just make sure not to push him to do anything he’s not up for. I guess that’s the best I can do.
Take care, Holly. Thanks for responding. I speak for everyone that’s a part of this network in saying that we’ll support you in any way we can.
Kelly
I was getting ready for work on a Thursday morning in 2008. As soon as I got out of the bed, I felt a stabbing pain in the right side of my brain which caused me to collapse. I thought that it was just a terrible migraine. It wasn’t until three weeks later that I found out that it was a brain hemorrhage.
I was 10 yrs. old and had just come home from school and was getting ready to do homework. I had a severe headache, began vomiting and passed out. CT scan showed hemorrhage and the AVM was diagnosed. I don’t think I had eaten anything cold or did much activity just prior to the bleed - it has been 20 yrs. since then, and I just don’t remember.
HI there Kelly, My husband was in the garage working, he was using a grinding tool working on some steel, he was bent over, the pressure from being bent over was the likely cause I think, how is your little guy now?
The day my AVM ruptured I had worked an 8 hour day, and hadn’t really felt very well during the day. I was working in the office of an elementary school at the time.
After work, at home, I lay down for a short nap before needing to leave to meet someone for dinner at a restaurant. I had wished I could cancel the dinner plans and just stay home in bed, but then I decided not to cancel since it was so close to our meeting time.
I drove to the restaurant, and just as we were sitting down to the table I felt - something. I had no idea what was happening, I only knew that suddenly I felt very strange and unwell, and something was going on with the left side of my body. My back felt really bizarre. I reached my hand around to feel my back and I was almost totally numb, but there was an immense amount of pain too (I later learned that is the neuropathic pain). I kept moving my hand down, touching and poking myself with a fingernail all the way down - and all I could feel was some pressure and the neuropathic pain.
This is how my left side was from just below shoulder level to my toes. There was also a ‘band’ of this pain around my torso, from the underarm level to about the naval area. Holding onto the chair and the table, when I tried to stand up my left leg nearly went out from under me. That’s when I discovered the weakness. The next day I discovered that my ability to feel heat and cold were altered - cold is very painful, and hot feels warm.
Anyway, so I wasn’t doing anything more physically demanding than driving and walking into a restaurant.
Go figure.
