Hello everyone. My first and most severe migraine attack happened in 2020, my right eye and head hurt terribly. My eye hurt so much that everything under my eye turned blue. I felt sick. At the hospital, I was given the wrong diagnosis, the doctor said that these were crystals in the ears. And an MRI was not required, he prescribed medications, but they did not really help. A few days later I felt better. In 2023, I had an epileptic seizure. Despite the fact that I did not feel pain. I was taken to another hospital and my mother told about what happened in 2020, showed a photo of my eye and the doctors were very wary. I was in a very dangerous condition. I was diagnosed with AVM. Treatment began, I underwent embolization and radiation therapy. It was too dangerous to do the operation, due to the risk of not surviving or becoming disabled. Therefore, it was not possible to completely remove the AVM.
I have been taking anticonvulsants for 2 years now and I struggle with migraines. sometimes I get migraines 4 times a month, some of them are associated with hormonal changes (during critical days). But often it is always a strong or moderate migraine with aura and pain in the right eye. AVM also on the right. My doctor doesn’t say anything, but I read that it’s not very good. Maybe someone has encountered a similar situation?
I apologize for grammatical errors, I am not a native speaker,I hope for your understanding and that I managed to convey the main idea.
Can I say, your English is perfect: don’t worry about your English.
Migraines seem quite typical for people with a brain AVM, though in reality they are not exactly migraines (which are considered benign) but perhaps migraine-like symptoms of your AVM.
I think it’s fair to say that no neurosurgeon would promise to operate with a view to resolving anyone’s migraine-like symptoms. The brain is too sensitive and fussy an organ to hope to resolve migraines. Rather, the focus of any of the neurosurgical interventions would be on reducing our stroke risk.
Do you have good sight in your affected eye? We have two members with something called Wyburn Mason syndrome who have an AVM in what sounds like a similar location but one of the elements of Wyburn Mason, so far as I understand it is affected vision in the relevant eye.
Or does your AVM show externally at all? I can think of one and there may be two members with a more externally-presenting eyelid/socket AVM.
Richard thank you so much.This is the first time I’ve heard of such a syndrome, thank you for telling me. There are no problems with vision, during a migraine my right eye hurts, and I also become very sensitive to everything: to smells, to light, to noise. The only thing that helps me is zomig, rest or sleep in a cool dark place. Sometimes the pain doesn’t go away until I vomit.
Sorry, for the moment, I can’t find whoever it was that I was thinking of.
There are a good proportion of people with a brain AVM who struggle with migraines, so don’t feel alone in that at all. Have a read around in the General category but you might also find relevant stories or people in the Facial area or in one of the other general categories like the New Member Introductions or the Symptoms and Treatment sections.
As I think of anything relevant, I will mention it.
You are not alone.
Very best wishes,
Richard
p.s. I know I’m crazy because today is my anniversary of joining this site. I found this place 9 years ago today(!!) as I was up for an MRI to confirm an AVM in my right occiput.
I appreciate your support and congratulate you on your anniversary, it’s amazing, over so many months you’ve probably supported and helped thousands, really thank you for your kindness
It will also take me a little time to figure it out and find the information I need, take your time too I’m just happy that I found this site and now I feel calmer, I feel your support, I can finally be myself, feel free to be a little different, be vulnerable and not be ashamed of it, I read the stories and feel so hopeful and inspired.
Sorry to hear about your experience and I did suffer from optic migraines after my AVM removal, which was also located on the right frontal lobe… they eventually went away over a couple of years but I did get used to it… please consult your medical team if it gets worse or persists… God bless!
thank you so much.This is the first time I’ve heard of such a syndrome, thank you for telling me. There are no problems with vision, during a migraine my right eye hurts, and I also become very sensitive to everything: to smells, to light, to noise. The only thing that helps me is zomig, rest or sleep in a cool dark place. Sometimes the pain doesn’t go away until I vomit.
I’m just happy that I found this site and now I feel calmer, I feel your support, I can finally be myself, feel free to be a little different, be vulnerable and not be ashamed of it, I read the stories and feel so hopeful and inspired. 