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AVM Survivors Network

What were you doing when your AVM ruptured?

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).

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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

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Hi all,

I was down in my local gym on the treadmill. I had no headaches or anything. I was in perfect health. I was about 3km into the run and AVM ruptured. Lost all function to my right side instantly. On life support for a month. Best of luck to everyone.

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Hi Barbo - none of my doctors suggested that the migraines that I had might have been bleeding. I had my first migraine in 2001 at nineteen years of age. I was out of work for almost a week and had to tack black sheets on my windows because I couldn’t handle the sunlight…even with the blinds down. The first day of that migraine, I was very nauseous, regurgitating every thirty minutes. I would see my (then doctor) a few days later and she would just say that it was caused by allergies. Which is interesting when I look back on it. I would get migraines after that one, but they would only last a day, so I didn’t think much about it. Many people around me would think that those migraines came from my having low-blood sugar (which I do struggle with).
I was twenty-six years old when my AVM ruptured. My (then) doctor (a different one. The doctors that I had was based on the insurance I had through my job) told me that I just had a migraine, prescribed me medications for the migraine and nausea and sent me on my way. I had to go to the emergency room a week later to actually get scanned. The doctor that treated me never said anything about the past migraines…then again, I didn’t say much to him since I was asleep during most of my time in the hospital (due to being on morphine and a percocet to dull the pain I was in).
I happy for you that you haven’t experienced any migraine pains since treatment. They are not fun to have. What I am learning through hearing of the stories of other survivors, every AVM is different.
I still get them, but they’re not as bad as what I had eleven years ago. I’m definitely staying aware so if needed, I can see my Neurologist to make sure that any peculiar pains aren’t anything serious.

So is your peripheral vision gone? Was your AVM in your occipital lobe?

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I feel like dehydration combined with red wine the night before triggered my bleed in the shower the next morning.

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My husband and I typically did a lot of walking but that day he did the out of the ordinary and ran instead of walking

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By the way my husband also had had “migraines “ and even that night it ruptured told me he was having a migraine and couldn’t see straight- as in the past.

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The first time I was watching a movie. The second I was in the hospital getting ICP levels adjusted. I was writing a sermon the third time I had a bleed.

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Hi Lesley,

No, my visual issues resolved with time. And, yes my AVM was left occipital. My neurosurgeon actually said that removing the AVM may have removed the vessels that contributed to my migraines. It was my PCP who thought that all those migraines were in fact, not migraines at all and perhaps was early bleeding prior to the rupture. Either way, I am so very grateful that they stopped. But, I do get panicky whenever I get any type of head pain, mostly because I have three small residual aneurysms since the AVM repair.

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My goodness Susan! Your story, first of all, and also seeing you back: it’s been ages since you’ve been here. It’s great that you’ve dropped back in to share a little of the support that makes this community so great. How have you been doing?
Seenie from ModSupport

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Yes it seems as if every avm is different, life has certainly changed since it happened . Constantly dizzy on every head movement seems to get worse and worse as years go by , dont think anything can be done as it was in cerrebellum so its something you live with. Thankyou for you reply :tulip:

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The scary part for me was that I don’t remember anything about it at all. For about 3 months I was having increasing difficulty concentrating and problem solving. My short term memory was declining rapidly. Doctors wrote it off as stress since I was working 60+ hrs/week and not sleeping much but that schedule was normal for me since I owned a large veterinary hospital. All I remember is prepping for a surgery and telling my technician that there was something wrong with me. The next thing I remember is 4 weeks later waking up in rehab. Apparently, I did the surgery (a minor one) and drove home with a bad headache. I was in so much pain my wife made me go to the doctor and 2 days later I had a craniotomy. I don’t remember any of it or the first 4 weeks post op.

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I don’t remember. I was fishing with a friend on a local river on a Sunday. The following Tuesday, I couldn’t get out of bed. I slept for a full day, except for a couple minutes to take my medicine. Wednesday, I was able to make it to the couch in the living room but still, very little movement. The same for Thursday and my wife was getting a bit freaked but I guess I was doing just enough to keep from getting an ambulance.
Friday morning, I told her to call the ambulance. I had no headache just dull neckache. I thought it was Lyme disease, because I found a tick earlier the previous week.
That’s what I thought happened. I was told it’s not what happened and no one will tell me the real story.

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It’s understandable… the symptoms of those ‘migraines’ and the symptoms of the AVM rupture were very similar. The head pain, nausea, light sensitivity are classic migraine. The rupture was the same except for the sudden, painful blast I felt in the back of my head and that I lost all my left periphreal vision in both eyes. It’s frustrating to know that I walked around for 15 years with an undiagnosed AVM. I even mentioned to my neurologist about 3-4 years prior that my migraines had changed and asked for a scan. He said it wasn’t necessary as these were ‘classic migraines’. Needless to say, I don’t see him any longer. How is your husband doing now?

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Hi April… I will also admit to drinking white chocolate martinis the night before also… :shushing_face:

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My MIL had one eye tearing all day. She gook a nap at 4pm and never woke up. The aneurysm had been putting pressure on neuro pathways. all day, then burst…

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AprilY - my bleed was also after red wine the night before and I forgot to take water to bed or drink in the morning before running. My neuro thinks dehydration was a key factor as my AVM bled due to venous obstruction. I still drink red wine but just a glass and always drink water!!

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in my car eating a burger on a mcdonalds carpark, must ave had a seziire, no warning no pain. I had the engine runnning & heater on, was a cold decemeber night,i must ave knocked the car into drive (was an automatic) Luckily was up against a concrete post…there was no tyre left on the rim i saw later…the car filled with smoke.A man pulled me out…i came around sitting outside with loads of people string at me ,SCARY, not knowing what happened…The police & fire engine arrived. because i live in apub the police assumed i was drunk… & breathailsed me. But it was negative they said the breathaliser must be faulty, so i had to wait for another one to arrive. About 20 mins later …the new breathaliser said negative as well…will neva forget the look on the cops faces in disbelief…They then called an ambulance…so much for “duty of care” by the cops…so as they say…the rest is history…Im very lucky to be here is the way i look at it
Carl

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How scary!!! I remember the docs in the ER accusing me of taking drugs before I passed out from the head pain.