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AVM Survivors Network

What were you doing when your AVM ruptured?

I think it would be usefull to know what kind of activities triggered the bleed so those that have a avm can avoid such triggers if poasible.

Common sense tells us anything that creates an increase in intra cranial pressure is a likeley trigger, atleast for me it was (weight lifting) however I have read a variety of stories that range from sniezing to stress.

So, what was your opinion on what the trigger for you avm bleed was?
Thanks in advance and I hope we can benefit from this as a community

No specific trigger. I was driving home when a sudden roaring noise in my head had me thinking the truck had jumped out of gear. When I pulled over I realized the noise was in my head. I made it home as I was only a block away and then was taken to ER with a brutal headache. So began my journey…

What you went though is what I and sureley others, most fear of while I have this condition (no trigger+ during a risky situation) but I am glad you made it through and it is also inspiring. In my case my right leg became unresposive however I was lucky to not be driving.Thanks for your answer jenny.

I had just laid down to bed after having a couple of beers though I am pretty sure the trigger of the bleed was stress as my blood pressure was up because my father-in-law just had a brain aneurysm rupture the day before.
To this day I’m not sure how my wife dealt with her husband and father both having brain bleeds within two days of each other…

For me it was a Sunday at home and instant severe headache, was under a lot of pressure at the time and BP was up pretty high. Holy smokes Mike, what a situation for your wife, she must be one strong lady. Take Care, John.

Yep always knew my wife was tough but that weekend made me realize how strong she is; she was told her father passed while I was in ICU about 15 minutes after the doctor told her I’d coded out twice and they weren’t sure I was going to make it through the night. she’s the strongest person I know getting through that weekend… almost lost her husband and her dad on the same day.

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Was being your standard 10 year old at home and started getting a headache. So told my parents and they handed me a Tylenol. Figured it was allergies since it was May and I live in a woods. Then the rupture started. As for what I remember my right eye got blurry and then I lost control of my right arm then the pain got so bad I blacked out. That’s where my story started.

For me and my AVM story, it was 2am and for some reason I hadn’t been able to sleep. Suddenly the severe headache cane and the room started spinning, and shortly after that I threw up. Interestingly , 2 days prior to this, I had experienced a huge nose bleed, with blood coming out from both nostrils and out of one eye. I attended A&E as the nose bleed wouldn’t stop. They assessed me, the nose bleed stopped and I was sent home (unfortunately without any scans or investigations being done to my head). Hence the brain haemorrhage a few days later.
I had also started a new job in a new company 9 Months earlier , so you could say that life had been a Little more pressured than usual. I thank God for this life and acknowledge that God clearly hasn’t finished with me yet! Hallelujah!
That’s my story and I hope that this helps others in similar situations.

My son was rock climbing for one hour and then he did some weight lifting. His wife says he had an intense headache and his legs faltered. He was admitted to hospital and initially nobody thought of a stroke. The confirmation of a ruptured AVM took place once they conducted an angiogram. He had a second bleeding 3 days later because the physiotherapist insisted in sitting him on a chair and the blood pressure rocked up to 187

I was 16 years old, working at a garden store. It was the 1st day of summer vacation from school. Another girl and I were unloading a truck of 1 gallon plants. When we finished I went to wash up and noticed my right hand was not working. I made my way to the cash register because I was supposed to work there until the store closed. I sat on a tall stool and checked everyone out with my left hand. When all the customers had left I paged the store manager to come to the front of the store. He had to carry me to his office where there was a sofa. He called my Father to come and get me. My Dad took me to his psychic chiropractor-no joke-who then placed a rubber cylinder on my head(where the bleed was) and tapped it with a small rubber ,mallet. Then I was taken home and put to bed. After a short time I could not speak, my entire right side was useless. I had the worst headache ever and all I could do was scream. My parents came to my room and took me to the Methodist Hospital ER in the Houston Medical Center. A neurosurgeon was called in. I passed out. Several days later I woke up to find a priest standing over me administering my last rights. When the doctors saw I was awake the test began. I was very frightened. I had a spinal tap, a CT scan, an angiogram. After all the tests were done I was informed I would need surgery to remove the AVM. I ended up having 2 surgeries because of drainage issues and swelling. I was told I would never walk again. After the surgeries were over I began physical and occupational therapies. My speech had returned. I was determined to walk out of there and I did. I had a brace on my right leg and used a cane, but I did walk out of there!!! My Mom took me back home with her to continue my therapies. At one point they told her there was nothing more they could do for me. She replied that the therapy would continue until I said I was done, and so it was. Miracles do happen. I have been able to work for decades. I had a daughter(C-section). My current neurologist says he can see no weakness in my right side. I was 16 when it happened. I am now 62.
TMI, I know. I think the heat from unloading the truck and the psychic chiropractor played a role in my bleed.

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I didn’t really have any triggers. I woke up one morning and was getting ready for work. I was washing my face, and as I learned over to rinse that’s when I felt the sharp stabbing pain that would be my AVM rupture.
I was experiencing frequent migraines in the months leading up to my rupture (along with certain speech and comprehension struggles), but I didn’t think much of it.

Literally, I was sitting down peeing. Before I got up I felt what I can only describe as being hit in the back of the head with a baseball bat. I know, TMI, but you asked. :wink:

Did any of your doctors suggest those ‘migraines’ may have been bleeding prior to the rupture?? I thought I had migraines for about 15 years prior. All the usual symptoms of a migraine. When my AVM ruptured, I thought it was a severe migraine, as the symptoms were still the same, except I lost my vision in my left visual field. Since my surgery (Jan 2013) I have not had one, single migraine. I was getting them about every month, and in the 6.5 years since - not one! Of course, if you still get them now it blows this theory out of the water! :wink:

Hya I was hoovering and bent down to pick something off the floor and almost heard it go , as I stood up the pain in back of my head was extremely painful plus seeing stars then it just went from bad to worse

looking Back Now I used to always get what I thought were mild migraines or tension headaches when I was stressed out at work then I’d have some vision issues; now I think I was probably having small bleeds before the rupture though I am not not sure any doctor would have done a scan they would have probably just prescribed Xanax and told me to learn how to deal with stress…

I was out running five months ago and had some brief pain on the right side and a bit of visual disturbance on the left which I’ve had before, usually when I’m feeling stressed and have always believed it was migraine. I got home, had a coffee and a bath and started feeling very sick with worsening headache. Lay down all day and night and it got progressively worse but no neurological symptoms. Ended up at A&E next morning with ‘the worst headache of my life’ and being sick. They gave me a CT immediately (I must have looked bad!) and within 30 minutes they’d told me I had an AVM and I was straight in an ambulance up to Kings in London. I’ll never forget the A&E doc saying this is the start of a life changing journey…and so it has been. I’ve had radiosurgery as mine is too risky to remove. It took a few months to recover from tiredness, headaches etc after the bleed but I feel good again now and am just hoping for no more bleeds.

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Hi folks,

I got AVM with hydrocephalus after following.
Workout on stationary bike then dehydrated going outside and take a cigarette then riding car and after 5km drive vein in brain broken I sudenly stopped car loosing control, awarness, guy on street called ambulance then neurosurgery implementing shunt drying bleeding and brain liquid.
I born second time god with me !

My husband had the rupture. The night before he was driving home and could only see one headlight on the traffic coming towards him. He then started with a terrible headache but thought he was dehydrated. Didn’t mention any of this to me. Went to bed and woke at 4am to go to the toilet. He saw 4 toilets in front of him and couldn’t move his hand to push “one” of the buttons. He was in denial something was wrong and refused an ambulance. I ended up driving him to an emergency department but he had a massive bleed in the car beside me - someone was looking out for us as there was an ambulance coming up behind me so I threw open my drivers side door to stop them - they were our guardian angels that day. Steve was misdiagnosed and sent home after a week because it was Christmas and they would “sort him out” in the new year - Steve didn’t make it to the new year - his 2nd massive bleed was on 30 December and his AVM was removed on 7 January. We were very blessed he survived all of this with the help of the amazing medical team at our Public hospital (it was the private system who sent him home).

Sleeping. Just goes to show that we have no control over this crazy thing

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I was just doing some chores around the house ( laundry, dishes,etc) after I woke up from a nap. Then I got the headache, nausea and lost control of my limbs, fell that’s all I can remember