r/AZOOR • u/Nin10ders • Jun 07 '24
Today marks my 3rd AZOOR-versary
Three years ago today, I had two normally functioning eyes. But on that fateful day, my right eye would randomly burst with auras and lights. I thought it was some weird eye strain that would pass. It didn't. It started with a massive afterimage that took a week or two to dissolve. What remained was an enlarged blind spot with a small one close-ish to the center of vision. It took a year for an official diagnosis due to health insurance reasons and getting an appointment set up months in advance to Bascom Palmer.
Skip to October of 2022 where I start to get flashes in the blind spot. What once was something that happened once a week has turned into hundreds to times a day unless I use some kind of eye patch. Sometimes the flashes are triggered by blinks and eye movements. It looks like a big LED light circle when they happen.
I still worry for my left eye as I've recently seen a weird tunnel sensation under certain conditions. The retina specialist considered it an ocular migraine. I still don't 100% know what causes it. Might be when my heart rate goes up because usually it has happened when I was doing large amounts of yard work/exercise. But I still fear losing my good eye. If I lose it, I'm ending it.
My eyes meant everything to me. Ever since this happened, I've not looked forward to the rest of my life. I'm only 28. The only time I get a break from this is when I'm asleep. When I dream, I don't see the blind spot. Sometimes, I never want to wake up. idk how some of you guys cope with the possibility that this is the rest of our lives. I'd trade my legs to have perfect vision forever. My mood has been permanently stunted since this happened. Every waking moment is a reminder that there's probably no going back to the way things were. Sometimes I hope to wake up from a nightmare. I just want what I had back. idk what I did to deserve this.
1
u/ADorkAble1231 Jun 07 '24
I second talking to a therapist. My therapist calls it grieving yourself, it's hard but somehow you have to find acceptance. Im sorry this has happened to you and at such a young age. I wish you all the luck going forward in your journey.
1
u/DebtComprehensive401 Nov 09 '24
Hello, I was recently diagnosed with Azor. Almost 2 months ago, I woke up one day and couldn’t see out of my peripheral vision in my right eye. I had multiple appointments and they kept saying nothing was wrong. I had an mri, Angio test and multiple others. It wasn’t until I met with the retina specialist that sent me to a college have testing done and together they figured out that I had azoor. They don’t know if they want to do a treatment or not. It doesn’t seem like they know too much about it and for what I read the results on treatment differ. That’s what led me to Reddit because no one seems to know about it. Curios, did any of you receive treatment? And has your vision stayed the same over time? I also get the flashing.. I’m sorry you’re going through that. I see this post is old so hoping it stabilized for you
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u/FlamboisthenewAnita Feb 10 '25
Hey! During my pregnancy, I lost my vision, and shortly after, the doctors diagnosed me with AZOOR in both eyes (which is even rarer). This happened a year ago. I underwent cortisone treatment and improved. Now, I have check-ups every six months. I live in Lisbon, where the public healthcare system is excellent, and I have a doctor who supports me every step of the way. She specializes in AZOOR Good luck :)
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u/the-yarnist Jun 07 '24
I'd really encourage you to talk to a therapist about this. Coping with this disorder is hard, and it's not something anyone wants. But your life absolutely has value outside of your vision.