Ocular migraine + being deaf = terrifying

Oh my God, as if I needed something ELSE on my plate. A few days ago, I started losing eyesight in my right eye. Like I was blind in that eye. Then it was followed by a headache, and within the hour my eyesight was back. We did WebMD (not a good idea folks) and it came up with Ocular Migraines. Well it happened again the next day, and then the day after.

So my husband decided to call my doctor who referred us to an opthamologist in case it was a detached retina, a clot, glaucoma, whatever. He spent FOREVER looking at my eyes. He put in yellow dye that made me look like the Nightcrawler from X-Men. (That was kind of cool). In the end he said my eyes were perfectly fine and normal. So he went to talk to the doctor on call to see what we should do, and he said we should go to the ER. As you know, I’ve been to the ER SO MANY times, that I was just like, “really?”

So we went up to Urgent Care to talk to a doctor to see what they would do at the ER, and she was very nice about it. She did a neurological exam on me, and didn’t see any signs of a TIA or stroke. She explained that they were probably worried about a clot in the carotid artery, but the chances were slim. She didn’t say we had to go to the ER, but she also didn’t say we shouldn’t. So we decided to go home that night, and if it happened again, we’d go.

Well, it happened again the next day. Except for one big difference. I was completely blind in both eyes. I’m deaf. That is the most terrifying experience I have ever had in my life.

I’m not really that spiritual, but I prayed so hard and asked God to help me. That I couldn’t take anymore on my plate. To please give me my eyesight back. I wanted to cry, it was so terrifying.

Fortunately, it came back within an hour. They did a CT scan to make sure it wasn’t a blockage, and everything’s fine. So the final diagnosis is an Ocular Migraine. I’m taking Gabapentin, off label. My neurologist says there’s been studies that it helps prevent the Ocular Migraines from happening.

But that hour was the worse. I was scared. What if I couldn’t see anymore? I wouldn’t be able to read lips. I wouldn’t be able to draw or play the piano anymore. My life would be completely upside down. To never see my husband’s face ever again, my family… and if I had kids… so many things ran through my mind in that hour.

I had never been so grateful as I was in the moment that it came back and I could see. I thanked God for providing me good neurologists and doctors to help figure out what was going on. And like I said, I am not a spiritual person. But that hour definitely changed me.

This post first appeared at PNES & Me, our partner site.

2 thoughts on “Ocular migraine + being deaf = terrifying

  • July 24, 2014 at 5:51 pm
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    i can’t imagine how scary that must have been! it sounds like you have an AWESOME neurologist. keep him/her!

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  • September 10, 2014 at 7:54 pm
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    OMG your situation made me tear up. To think of being deaf and having my eye sight go out too. Must have been seriously terrifying.

    I had my first ocular migraine on Monday in my left eye. I was shopping at the mall. Looking at a new dress like nothing out of the ordinary. When suddenly my vision turned into what can only be described as psychedelic.

    About 2/3 of my eye sight was completely okay. The other third was almost like looking through stained glass. It was sectioned off into little diamonds and light was bouncing off each diamond border. So the middle was super bright and then outer part of each section was pitch black.

    I also got what felt like the worst sinus headache ever. But it was only in that one eye. There happened to be an opthamologist in the mall not too far away. She saw me right away because the patient who was there for his appt saw my distress and offered his slot. The doctor told me I was having an ocular migraine. Said it was fairly common. OOOOOKAY.

    Ended up going to the E.R. Was given a shot of Toradol, Gabapentin and Ativan. It didn’t help but made me calm down. I stayed there for 2 hours. They sent me home with a prescription for Epidrin to take immediately when I have the symptoms. I had a 2nd ocular migraine this morning. Same thing as at the mall.

    Really hope this doesn’t go on. I go back to work next Tuesday. Of course I’m on my VACATION, forgot to mention that. I very much wish you freedom from your ocular migraines. They didn’t tell me to see a neurologist. But after reading your post I’m going to find one. BTW there is not much on the web about these migraines. I have found about only 10 credible sites that aren’t filled with spam. Going back to the mall opthamologist, the web seems to disagree about these being so common!

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