What were you doing when it haemorrhaged?

Hi,

My AVM has not bled. I found out about mine last December. I had two very strange episodes almost a year apart that lead to the discovery. I was standing in my kitchen the first time and I got this crazy visual aura come across my eyes, it freaked me out and I started to panic. I made my way upstairs to go lay down and I felt like someone was choking the life out of me. I had numbness and tingling in my arm and I felt dizzy and all around confused. I got a massive headache and felt like vomiting. This happened in Dec 07. I thought it was a fluke and just brushed it off. 10 months later it happened again identically to the first time starting with the visual aura. I was in my bathroom blow drying my hair. This time I didn’t panic but I went and sat down and waited for it subside. I got a massive headache and threw up. I’m shocked that this was not due to bleeding but I’m glad the symptoms lead to the discovery of the avm. A Neurologist ran an MRI and found my avm in my left parietal lobe. My neurosurgeon told me that my avm was not a good candidate for surgery…too risky.

since the discovery I have underwent two embolizations and stereotactic radiation and now it’s wait and see and monitor with mri’s for the next 3 years. As far as living my life I still do everything before I just am more aware. I still work out, I drink at least 2-3 cups of coffee in the morning…I’m a Mom of 3 kids and I do my best to just live my life to the fullest and not worry “oh is today the day?” I’m thinking positive and in my mind my avm is not going to bleed and some day it will be obliterated. :slight_smile:

Rachel said:

Hi,

My AVM has not bled. I found out about mine last December. I had two very strange episodes almost a year apart that lead to the discovery. I was standing in my kitchen the first time and I got this crazy visual aura come across my eyes, it freaked me out and I started to panic. I made my way upstairs to go lay down and I felt like someone was choking the life out of me. I had numbness and tingling in my arm and I felt dizzy and all around confused. I got a massive headache and felt like vomiting. This happened in Dec 07. I thought it was a fluke and just brushed it off. 10 months later it happened again identically to the first time starting with the visual aura. I was in my bathroom blow drying my hair. This time I didn’t panic but I went and sat down and waited for it subside. I got a massive headache and threw up. I’m shocked that this was not due to bleeding but I’m glad the symptoms lead to the discovery of the avm. A Neurologist ran an MRI and found my avm in my left parietal lobe. My neurosurgeon told me that my avm was not a good candidate for surgery…too risky.

Hi, Jim- I was trimming a bush in the yard. It was warm and my BP was probably up, but I think that the time was just the right time for it to burst. I do take BP meds to keep it lower since the bleed. Have you had yours checked out?

Anyway, I hope you don’t live life worrying about what will raise your BP. Life is too short. Now, I’m not recommending that you climb a mountain, but don’t go overboard with BP management.

Finally, I drink 3 cups of coffee a day. Not a problem for me.

Brian

Hi Jim,

I didn’t even know I had an AVM until it burst while I was leisurely sitting at my computer on a Sunday afternoon. I had competed in an athletic tournament that weekend which could have been the catalyst but who knows.

Mine bled for about 24 hours before I went to the hospital with a severe headache. My surgeon thought that the best option for me was a crainotomy and I had the procedure a little less than a month ago. I’ve been home now for a little over 2 weeks and seem to be recovering well. I still have some significant vision impairments but things seem to be getting better although very slowly.

I agree with the comments below that having a great doctor made a huge difference for me. I didn’t know what to expect but I’ll tell you that the procedure, for me, wasn’t nearly as bad as what my pre-conceived notions of brain surgery were.

Take it easu buddy, wishig you all the best.

Ryan

P.S. Sorry for any spelling mistakes, I still can’t see as well as I’d like :wink:

Alittle emberrasing to say, but I was having intercourse at the time of my stroke, or bleed or whatever it was. I felt a pressure inmy head getting worse and worse then a load pop, then my whole head went to sleep (tingling like when your arm goes to sleep.) I am afraid to do that, or anything straining anymore. Life is cruel sometimes. My several Mt. Dews I drink a day probubly dont help either.

Playing basketball. I always do what I’m advised not to do. It’s in my blood! :slight_smile:

I was in gym class, doing the flexed arm hang

I was playing piano when I had my bleed. I went to sit down and my left arm started going limp.

I was around 18 when mine happened. I was home alone watching TV and eating a cheese sandwich for lunch. I started with a headache which turned into severe pain going straight across ear to ear. I was found a few hours later when my sister came home, curled up on the floor in the fetal position. My dad took me to our primary physician and he just thought it was from neck tension so prescribed a relaxant and something to settle my stomach. Did not find out it was an actual bleed until I had my pre Gamma Knife angiogram. 22 years later !.

I have found that if I lift anything too heavy my right temple starts to throb ( AVM is right frontal lobe ) so its probably not a good idea to strain or lift anything heavy.

I also found that my headaches increase in frequency when I have a lot of caffeine. Lol found this out when I went on a mountain dew kick. Now I drink caffeine free pepsi.

Jim,
I was getting ready to mow the lawn.Nothing out of the ordinary. BANG.It bled and knocked me down for a few.I drink about 4 cups of coffee a day.I am gonna go when it is my time.
John

Hey, Jim. Sorry if is this is scary…AVM located deep in the right side of the brain bled. I was sitting in bed watching TV, took a clip out of my hair as it felt uncomfortable. I felt something in my bed and when I when I pulled back the duvet was horrified to discover it was my left leg! It felt like a lump of meat, and all I could picture was something I had seen had seen hanging in a butcher’s shop… Got frightened, naturally, and then attempted to ring my Mom, as you do. By this time my head was swimming and I couldn’t focus on the numbers. At one point I imagined my head was on an elongated neck, the sort you see in cartoons, and thats why I couldn’t focus as the head was too heavy for the skinny neck and kept swinging about. I was in no physical pain and was lucid throughout. I managed to dial 999 and told them I was frightened and asked them to call my Mom, I gave them the number. Then I called out for my 7 year old to get a neighbour for me (I thought I was going to die and didnt want to be alone). As I rolled over to call him I fell out of bed. When he came in I told him Mommy had hurt her leg and needed help. Bless him, he covered me up with my duvet, I was naked. Although frightened of the dark he went downstairs out the house and returned with my neighbour. The police, an ambulance and my parents all arrived at the same time! I was strapped into a chair and as they carried me downstairs I screamed in fright - there was something under the blanket! When the paramedic pulled back the cover I could see a hand crawling across my skin…I was horrified! The paramedics and my Mom had to calm me down as it was my arm… I clamped my right hand over my mouth and wide-eyed I looked at my Mom, I knew something terrible was happening. I lost my left side completely. I had a crainotomy 10 days.

I was very relaxed, taking a shower, when my head started throbbing. I didn’t think it was serious cause I didn’t know I had an AVM, so I drove15 minutes to my son’s basketball game and started throwing up in the car repeatedly, continued to drive to my mom’s house, still thinking it wasn’t serious, maybe food poisoning, where I continued vomiting and then was unconscious within about 5 minutes of getting there.

I wouldn’t worry too much about doing things. My AVM bled when I was 26. I am an extremely athletic person, work out at the gym on a regular basis and had given birth to three children. If giving birth with no pain meds didn’t make it bleed, I don’t know how taking a shower did it. Try to relax. It will happen when it happens if it happens. But in the meantime, live your life to the fullest

I remember having peripheral vision issues days before. What I was told; I was on duty, (Firefighter) when the bells rang. We jumped on the pumper, with me driving, to respond to the call. I pulled out of the station with lights, sirens, horns, etc. and drove to the call at the blistering speed of, about 5 to 10mph. My Captain, (knowing something was wrong), sent me home as sick time off. Hours later, I had a seizure. I get a free ride in the very ambulance that I used to put other patients in, and spend a number of days in a coma in ICU with tubes in every orafice of my body, (and then some)

HPeace
Daveey Jim,
Just wanted to let you know that there are others in your shoes. I found out about my AVM 6 months ago. I was having frequent seizures on my left side so I went to my Dr… She sent me for an MRI and sent me straight to a neurosurgen. I have seen a total of 6 different groups of Dr.s and they all say that it is innoperable. They put me on anti sezure meds., but they all seem to completely fog my brain. At this point I have stopped the meds. and just trying to clear my head again. Stay positive and know that there are people here that you can relate to.

hi, I was having breakfast and suddenly had the most horrific headache. I knew something wasn’t right. i woke up the following day having been brought round by a massive seizure (which I am thankful for!) Afterwards I felt horrendously ill for weeks. i knew something was up. It wasn’t until I’d had all the scans done that I knew my avm had burst, and that there was an avm that needed to be dealt with to stop it from bursting again.
I was in my mid/late teens. They put a clip in it.

What’s the link with coffee?
flower

My experience isn't too exciting - unlike some who were having orgasms, I feel rather boring with my story - the orgasm thing would be quite a story to share with others. I was just having a glass of red wine watching a rerun of late-night Oprah, and decided to go to sleep. I went to the bathroom, started vomitting (thought it was food-poisoned sushi that I had for dinner), but then I couldn't walk - my knees buckled, and I fell to the hallway floor.

All of my stats., including blood pressure, were normal - it must've been one hell of an Oprah show. =)

Hello everyone,

I’ve been away from this site for a while. It is great to know that this post is still being updated with new feedback.

This is probably not the best place to update my avm status, but, I would just like to say that my avm has been obliterated after three years post radiotherapy (confirmed three days ago). I’m very happy at the moment. I hope my news bring hope to those that are currently in treatment or are considering radiotherapy treatment.

Stay positive.

Jim

Hi Jim,

I had a Brain Haemorrhage via an AVM in March 2012..... I was taking a shower in the morning when the bleed in the brain kicked off!! I'm still recovering after the AVM was surgically removed :o)

Best Regards,
Bhav

I THINK i was playing computer games. When my family got to my apartment after they were called they found a lot of medical debris by my computer on the floor. And i seem to remember sitting on my chair and feeling my right side go out and calling 911…