Hi all! I’ve been diagnosed with an AVM for a while but only recently found this site. I want to share my story in the hope that I might be able to find others who have had a similar experience, & to get advice about possible treatment options.
In 2002, aged 23, I was nearly 5 months pregnant with my only child. I awoke one night to severe head pain & projectile vomiting. I immediately rang my midwife, who said I probably had pregnancy migraines & to take OTC pain relief. I now know that was my first bleed, & miraculously didn’t have any permanent injuries or death. I can’t believe it looking back, but I actually went to work in the morning despite being in terrible pain. Through completely unrelated circumstances, I ended up moving & changing midwives, & this probably saved my life.
Fast forward six weeks & I was at my parent’s house. I got up to go to the kitchen & everything went blinding white. The pain was even worse than the previous time & I again began to vomit. My mother rang my new midwife who said to get to a hospital straight away & she would meet us there; which she did.
She demanded that I have a CAT scan immediately, which showed a large bleed. I was admitted to the stroke ward until my daughter was developed enough to be delivered by caesarean under general anaesthetic.
After her birth, I suffered from postnatal psychosis, having severe paranoid delusions about people trying to harm or kidnap my baby. Because I wasn’t awake for her birth I also sometimes thought I had been given the wrong baby.
I was young, scared, traumatised & struggling to bond with my daughter, due to the circumstances of her birth but thought if I told anyone what I was thinking & feeling, they would take her off me, creating a hopeless spiral.
So I told my doctor I had postnatal depression & was prescribed Prozac. This sparked a manic episode that lasted over a year & eventually led to being diagnosed with bipolar disorder; & the start of numerous medication trials to control my symptoms. Bipolar disorder was like a wrecking ball that completely turned my life upside down.
In the midst of all this, my mania made my mood upswing. Initially everyone, including myself mistook this for me coping very well. I had an angiogram that showed the AVM was nearly 4cm in size, located in between the right & left hemispheres of my brain, about half way down.
The neurologist described typical treatments but said all would be unsuitable, due to it’s location. He said I wouldn’t be able to have anymore children & that it would be better just to monitor it, & then I never heard back from anyone ever again.
I have suffered through numerous medication trials to get me bipolar disorder under control. Bipolar has intrinsically changed me & caused me to do a things that I’m deeply ashamed of, & were completely against my personality & beliefs pre-AVM.
I resent how my life has changed since the AVM bleeds but have learned how to cope & live with bipolar disorder. With medication, I mostly have depressive & anxious episodes.
Has anyone else here been diagnosed with a mood disorder or had marked personality changes post AVM bleed? Or while pregnant? If so, what has been the outcome? Also where are some good resources to find a reputable second opinion? I live in New Zealand if that helps. Sorry for all the questions, I’ve just never known anyone else who has been through this. It’s been so amazing to read all your stories; I don’t feel so alone now. Thanks for taking the time to read this.