What were you doing when it haemorrhaged?

Hi Everyone.

I’m new. I was diagnosed back in Feb 09 and living in denial until today when I decided to join this group.

I’ve done some research and understand that an avm will haemorrhage when the brain’s blood pressure exceeds the capacity of the avm’s vessels. If you don’t mind, could you tell me what you were doing when your avm burst? I’ve heard that with some people it burst while they were asleep. At the moment I’m avoiding anything that will increase my blood pressure, including drinking coffee! Pretty extreme hey?

Thank you for your input.

Jim

Well Jim I have to tell you I was the same as you …thinking it will bust if I do anything. I’ve known about my avm 2 years now and I do pretty much what I did before. I also started drinking a cup of coffee in the morning. So far no bust thank God. My Doc told me just use good sense don’t lift alot of weight hang upside down no straining and a few I would not have thought of don"t blow up balloons or strain when useing restroom. The one thing I miss is working out …that one I’m afraid of. So Jim I say relax and live your life just a little slower …

Hi Jim, nothing is extreme to me when it comes to dealing with this beast.

I think I bled a few days before I went to the hospital, I had a severe headache, it went away after a few days.
When I realized something was wrong, I was talking on the phone and I got real sick to my stomach.
I started throwing up and getting sicker then I started to feel as though I was going to pass out, I told my husband to call 911.

Don’t lift and keep your head above your heart. I know you are scared, so am I. Just pray and know that an avm is not usually a death sentence.

I had an embolization and they were going to do a craniotomy, I opted out of the craniotomy because I had a stroke(which is rare) during embolization. So now I have had a bleed that led to a stroke in Dec, 2008 and a blockage stroke that the embolization gave me on April 16,2009. I went for a second opinion after the embolization and I am now waiting for a Gamma Knife date to finish the avm.

Peace,
Ameenah

Hi Jim,

I found out I had an AVM in February of 2007 because my dentist sent me for an MRI. I immediately went on my computer and found a great doctor at Mass General Hospital to figure out what to do about my AVM.

After many, many tests, I had an angiogram and afterwards was told that my AVM was way back in my brain and the only thing they could do to get it gone was to do Proton Beam Radiation. I had my radiation treatment once - in March of 2007. Then I didn’t think about my AVM and let my life go on…during a very busy time in my career.

I left work for the Christmas Holiday and two days before Christmas of 2007, I had a massive brain bleed. They call it a large hematoma in the left temporal lobe. The bleed went all the way up of the left side of my brain, but the largest bleed was in the left temporal lobe

Now to answer your question. I was starting to wash my living room floor on 12/23/09 to get ready for Christmas and that’s all I remember. The next thing I remember was seeing my Daughter 10 days later (of course I didn’t know it was 10 days later at the time). My family sent me to Mass General after I spent 3 days in a Rhode Island Hospital (where the ambulance took me) that didn’t know what to do with me. Thank God for Mass General Hospital and my Neuro docs!

Make sure you have GREAT doctors that would be able to save you if you get a brain bleed( which I will pray that you never do)…That’s all I can say. Find the right person now! Don’t wait until you need them, find them now, just in case!

You may never bleed, but my thought is that you should find the best doctors you can find, just in case!

Good Luck…I pray for all people, every day!
Louisa

Welcome to the group Jim. I hemorrhaged on May 17 2008. At the time I was getting ready to go to my daughter’s soccer tournament. If I had been asleep I doubt I would have been for long as it was the most intense headache I’ve ever had. Had I been alone I would have died, no question. It’s smart to avoid increases in blood pressure even if you didn’t have an AVM. I’m glad you are no longer in denial and have started at least reasearching this thing you’ve got. Do the doctors have a plan for treatment for you? I wish you the best of luck.

The first time it bled…as far as I know the first anyway…I had just gottern up and was smoking. Had an absolutely blinding headache. The second time was also right after i woke up…

I think a little coffee would be ok…lol. You should still live your life, but remember that you have an AVM. Dont let it rule your life. So many people go on with their life and quit doing the things that they love doing, and it can make you feel crazy. When my avm hemorrhaged I was sleeping, I woke up one more with a horrible headache that I couldn’t get to go away. 3 days later found out that I had a brain tumor. It hemorrhaged several more times along with a stroke before I had it taken out by a craniotomy. That month and a half after I found out I had a brain tumor, I stopped everything that I loved. I had only been married 4 months and just thought my life was over. But 2 surgeries later I’m still here, and still with the same headache. Use your best judgement and if your doc says to go ahead and have a cup of coffee then go AHEAD! Don’t let your avm rule your life. You may go your entire life without a bleed. Talk to your doc about possible treatments and you have come to the right place to ask questions…because we have all been there. :=)

My first symptoms showed up back in 2001. I had headaches, couldn’t sleep, etc. One day I was out for a walk with my wife (I supopose she was technically my girlfriend at the time) and I started having a horrible headache and felt nauseated. It was very abrupt and was like nothing I’d ever had before. I told her that we needed to head home. While I have no way of confirming it, I beleive I had a bit of a bleed that day. If I remember correctly, the headache subsided a bit, but it kept returning and sometimes got so bad that I could barely function. Having no idea what an AVM was and having never experienced a migraine before, I just assumed I was heading with migraines. One day I went to have an eye exam to see if maybe my vision was giving me trouble. The optometrist had me take a peripheral vision test and found some vision loss in the upper right quadrant of each eye. He sent me directly to a radiologist. My AVM was diagnosed the next day.

Thank you to all your replies so far. Seems like haemorrhage has occurred for most of us just after waking up. I would have thought the complete opposite, like heavy exercise or stressing out.

I try to lead a normal life. I avoid coffee now (drink mostly green tea now. It’s not so bad). I don’t run anymore. I even avoid running for a train even if it’s about to leave (before, I would do a quick run for it). My attitude has changed so much it is amazing. I’m like a different person, laid back and mellow. I always think to myself “calm down, don’t rush, take it easy…”. So now even if I would make it into a train with a 3second run I would continue to walk… I’ll just get on the next train.

Even at work, I try not to stress. I think stress would be a large contributing factor to it haemorrhaging.

At the moment I’m weighing up my options between surgery and radiotherapy. I think I prefer radio but I’ll talk to the doctors and get their professional opinion. From what I’ve read so far, radio seems so much more attractive!

Stay well everyone. Please keep continuing to post your experiences for those that join tomorrow.

Thanks

Jim

jim,
i never had a bleed and i thank God for that because the size of my avm…if it had bleed i wouldnt be here now…sometimes i dont know how it didnt bleed…i used to drink about 13-15 double shot latte coffees a day…smoke a packet of 25 cigarrettes a day and drink about 4-6 stubbies a night…so if you really want a coffee i dont think one coffee will cause a bleed…needless to say…i now only drink one double shot latte a day…and i no longer smoke or drink alchol

Officially It has never been recorded that I have had a bleed however I think I did have one in 1991 I think. I had all of the symptoms horrible headache, seizure, nausea. We were driveling to my grandparents house in Louisiana I had this book assignment and I was trying to read. I remember having such a bad headache that I had to stop and close my eyes… My parents were like what happened to Brian. It was like an all the sudden thing. About an hour later we stopped to eat in Montgomery Alabama at a Pizza Hut my parents thought i was sick because we haven’t ate. I remember walking in to pizza hut sitting at the table when the pizza came in I had my first seizure ever. I literally went face down in the pizza. They took my to the hospital and the headache continued and a was throwing up all night and spent 4 days in the hospital having a tone of tests done on me. They never thought of avm. I had an MRI but it did not see the avm because they were such low resolution back then. I was diagnosed with epilepsy and sent on my way. Six years later they saw spots on my checkup MRI and ordered an angiogram and found my avm. I have not had a occurrence like the one in 1991 since then. Yes I get migraines and have had seizures since then but nothing like what happened then. I have been tonic clonic seizure free for almost 8 years and I still have complex partial sezure seeing stars fly around.

I live my life like any one else. However after joining this group I have decided to refrain from riding roller coasters. :smiley: :confused:

Jim said:

At the moment I’m weighing up my options between surgery and radiotherapy. I think I prefer radio but I’ll talk to the doctors and get their professional opinion. From what I’ve read so far, radio seems so much more attractive!

Jim

Jim some times depending on the avm operating might do more damage than not operating. It has never been proven that intervening before or intervening after has a greater level of effectiveness. Like my dr said it may never bleed again. My case was brought before a national conference of nerosergions in 1997 on if to operate or not. It was decided to monitor it. So talk to your dr instead of just jumping to the lets operate conclusion.

Hi Jim,

I’ve only just discovered this network and can not believe no one told me about it sooner. My AVM hemoraged on 17 December 2008. I didn’t know I had an AVM nor did I even know what one was. I was working very long hours and completely stressed out about work. I went to bed stressed after a 16 hour day at the office and was due back in at 7am the next day. Instead I woke at 3am with an excruciating pain in my head, then nausea kicked in then I had a stroke but i had no idea that’s what was happening to me- At 3.10am i managed to call a friend for help who was at my place within 10 minutes, called the ambulance and within hours i was having open brain surgery. i remained concious thhrought the entire event right up to when i was asked to sign the consent form on the operating table.It was not til I woke at 4.30pm that afternoon with a very sore head that I found out I was born with an AVM and the neurosurgeon told me stress at work caused it to hemorage. I am now 98% recovered and returning to very low pressure work next week but i have lost all my left field vision due to the stroke. i was completely paralysed down my left side when i woke from the operation but thankfully the paralysis only lasted 23 days. Prior to the event i did suffer from headaches, i was run down and i recall i felt like i was coming down with the flu but I just thought i needed a holiday, not a brain scan! If I had known I had an AVM I would have had it removed rather than live with the fear of knowing it could blow at any time. I would probably have tried radiation first and then opted for the surgery second but i can’t say for sure as i never got the choice. I still can’t believe i was walking around with a time bomb in my head for 34 years. I have since learnt of a colleague who’s son suffered headaches when he was 25, he had a brain scan and found an AVM - he opted for the surgery and 15 years on he is living a full normal life. I can say that i now live a very low stress life and appreciate every minute - every day i wake up is a great day.

Jim said:

Thank you to all your replies so far. Seems like haemorrhage has occurred for most of us just after waking up. I would have thought the complete opposite, like heavy exercise or stressing out.

I try to lead a normal life. I avoid coffee now (drink mostly green tea now. It’s not so bad). I don’t run anymore. I even avoid running for a train even if it’s about to leave (before, I would do a quick run for it). My attitude has changed so much it is amazing. I’m like a different person, laid back and mellow. I always think to myself “calm down, don’t rush, take it easy…”. So now even if I would make it into a train with a 3second run I would continue to walk… I’ll just get on the next train.

Even at work, I try not to stress. I think stress would be a large contributing factor to it haemorrhaging.

At the moment I’m weighing up my options between surgery and radiotherapy. I think I prefer radio but I’ll talk to the doctors and get their professional opinion. From what I’ve read so far, radio seems so much more attractive!

Stay well everyone. Please keep continuing to post your experiences for those that join tomorrow.

Thanks

Jim

It was about half an hour after I got home from school. (I was thankfully picked up, cause if it had been a day where I walked home…) I’m pretty sure i was in my room when it happened. From what I remember, I think I was feeling sick in the stomach that day, that’s all (probably had a headache too, which I was having nearly everyday).

It’s good you’re being very precautious, just make sure if you’re ever feeling ill that you’ve got someone around you.

My AVM never had a chance to bleed thank god, but I was putting away laundry when I had my TIA that led to the discovery of my AVM. I was putting away towels when my left arm fell down and I could feel the sensation run out of it, it hit the shelf in the closet but I couldn’t feel a thing. I tried to call out to my boyfriend (who was in the kitchen cooking dinner for us, maybe 10 feet away but separated by a wall) and I couldn’t make any sounds, as hard as I tried. Finally I was able to mutter out that I needed help and I don’t think I made it sound urgent or anything because he said he’d be there in a minute. So I tried to walk to him but could only manage a few steps. He leaned around the corner and saw me fall to my knees and he ran over to me, but I wasn’t able to communicate to him and my head was swimming. Finally I had to lay down because I felt so sick. The total episode lasted about 6-7 minutes then my head stopped swimming, my vision returned followed by my speech, then my feeling returned to my arm. We waited before we went to the hospital because I was trying to sort out what had happened to me, but I started to get sick again and then we left for the hospital… Then three days later came the news of my AVM

Hi everyone

I read today in “Mens Health” magazine July (Australian) edition that blood pressure peaks in the morning prior to waking up! I didn’t know this until today. This may be the reason why more people are hemorrhaging in the morning?

PS. I’m not endorsing this magazine. Just to let you know, it was on the waiting table in the waiting room at the cardio clinic I had an appointment for today.

Cheers

Jim

Mine bled as I was falling asleep after an active day. (swimming, kickboxing, slacklining all in a day was normal for me then) However, what I think did it was the biggest fight I’d ever had with my mother just a few days prior. My back and my head hurt for days after it. We hadn’t spoken since the fight but I called her at 2am the night of the bleed to let her know I was on the way to the emergency room. (Didn’t know I had an avm at the time) It’s been three years and she and I have never discussed that fight. I would never want to make her feel like my bleed and the things she said to me were correlated but I believe they played a part.

Anyway, my advice is avoid emotionally distress!! Put on some Bob Marley, poor yourself a glass of wine and tell yourself no fight or person is worth a bleed.

My doctor told me to stay active to keep my blood pressure low but avoid to high impact and strenuous exercise. Yoga and indoor rock climbing are two of my favorite things to do. :slight_smile: Staying active is good for my body but also for my mind-- helps me stay in the present moment and not think about the past or worry about the future. Not an easy task.

Love to all you survivors

I had a slow “leak” that had been going on for, quite likely, over a year. One of my doctors told me to avoid caffeine. The biggest thing that I can add is if you hear a whistle or siren sound in you ears (especially when you are laying down) call the doctor. That and a very high (117 - 120 resting heart rate) was the only symptoms of my bleed.

Caress,
I have been hearing a whistle sort of sound in one ear a few times recently…and, yes, most often when lying down. FIgured it was just ‘ringing in the ears’ that people speak of, but maybe not? Could you maybe describe it more?

Peg

just curious how do you know they bleed upon stress/upset/arguments? is it because your head hurts? did the doctor tell you this? thanks

Kathryn said:

Mine bled as I was falling asleep after an active day. (swimming, kickboxing, slacklining all in a day was normal for me then) However, what I think did it was the biggest fight I’d ever had with my mother just a few days prior. My back and my head hurt for days after it. We hadn’t spoken since the fight but I called her at 2am the night of the bleed to let her know I was on the way to the emergency room. (Didn’t know I had an avm at the time) It’s been three years and she and I have never discussed that fight. I would never want to make her feel like my bleed and the things she said to me were correlated but I believe they played a part.


Anyway, my advice is avoid emotionally distress!! Put on some Bob Marley, poor yourself a glass of wine and tell yourself no fight or person is worth a bleed.



My doctor told me to stay active to keep my blood pressure low but avoid to high impact and strenuous exercise. Yoga and indoor rock climbing are two of my favorite things to do. :slight_smile: Staying active is good for my body but also for my mind-- helps me stay in the present moment and not think about the past or worry about the future. Not an easy task.





Love to all you survivors