Unexplained vision issues

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I've been through complete hell for the past 6 months! This first started 12 years ago. I was in high school, 15 or 16 years old. Woke up with these weird blind spots throughout my vision. Thought it was an optical migraine because I got those a lot then. But it wouldn't go away. After two days my mother brought me to the e.r. and I got told it was anxiety and sent home. This lasted about 6 weeks and went away. Fast-forward 3 years it happened again. I was home from school on break sitting on our front porch. Looking across the street at our neighbors house I noticed I only saw half the house. Everything I looked at had chunks gone. Not black spots, but it was just non existent. Again, thought it was a migraine and went to lay down, fell asleep for a few hours woke up and it was horrible. I was terrified of these vision problems coming back. This lasted a few months and slowly resolved. I was fine for 2 years. Life was great! I got done with school, got into a great relationship and had a healthy baby girl August of 2010. About March of 2011 I started having vision problems again. This time was different. Things got really blurry, I was seeing double off and on and I had a lot of really spotty vision Constantly but I had some days better than others. I saw an ophthalmologist who said my eyes are great. Sent to a neurologist and had a complete work up. MRI /lumbar puncture/EEG/vep. Nothing was found. Between appointments, about 4 months after this started, thing slowly got better and again, I was fine. But April 2013 it started again. I noticed a pattern, every time this happened it got a lot worse. This time I got it all. Blurry vision , spotty vision , double vision, weak and dimmed vision, eye pain, and whenever I woke up, my eyes would roll around uncontrollably for several minutes. I noticed a huge blind spot that never went away. Usually they would come and go all day. I saw the eye doctor again and I had a retinal hemorrhage. It healed but the blind spot remains to this day. I had a complete workup again with my eye doctor and saw a new neurologist. They repeated all of the same tests and everything was normal. I couldn't work anymore. I was terrified again that I'm loosing my vision. But after this completely overwhelming 6 month, thing started getting better. I was fine until July 2017. I was driving home from work, it was 12am. I noticed I couldn't see parts of the road. I made it home and had a full blown panic attack which caused me to pass out. I woke up at 7am the next morning in panic and got a ride to the hospital. This time I got it all again. Blurry vision , spotty vision , double vision, weak and dimmed vision, eye pain, and whenever I woke up, my eyes would roll around uncontrollably for several minutes. I got sent to see an eye doctor and everything was fine with my eyes. Immediately got sent to a neurologist. He repeated all the testing I've had done and everything was normal again. I noticed a big blind spot in my right eye again, and it didn't go away. Went back to the eye doctor and he found another retinal hemorrhage. He said its due to high blood pressure but the visual issues he still can't explain. So I have two huge blind spots in my right eye for life I guess. I saw my gp and he started blood pressure meds but insisted besides the hemorrhages that my blood pressure isn't causing my vision issues. I also have been diagnosed with severe sleep apnea and low iron anemia with no blood loss. My diet is and always has been iron rich. But the neurologist eye doctor and gp says none of this should be causing these vision problems. I'm still going through it and it's not going away. I keep hoping it will. Again I'm out of work and my life is a mess. Constantly anxious and depressed and just scared. Any ideas on what keeps happening to me I would be forever grateful.

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6 Replies

  • Posted

    Your problems sound extremely complicated. I couldn't even begin to guess what it might be, but have you seen a retina specialist?

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    • Posted

      Since you said your eyes roll around, I did think of one thing it might be, although I would think your eye doctor already thought of it - nystagmus (do a search for more info).
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  • Posted

    I just found a good website for info - the American Nystagmus Network (google for link).
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    • Posted

      thank you so much for replying. I actually have not seen a retina specialist. It's crazy that you ask that, I've been thinking about trying 2 get referred to 1

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    • Posted

      Sorry kind of posted that before I meant to. Also I have been wondering about nystagmus. Even when I'm not having those weird episodes when I wake up I have recorded myself staring at a dot on a wall. I've noticed my eyes making very slight jerky movements. It's really hard to notice and I've asked a lot of people I'm usually around if they have ever noticed this. Nobody has. Also recently A lot of people have pointed out that one pupil is usually a little bigger than the other. If this Vision stuff wasn't going on I'd probably not even think anything about it but it's quite a coincidence. Thank you for your thoughts on this I'm going to check out that website right now. God bless you and I hope you have a great holiday season.

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