This is probably going to be a shorter post than I normally would write but it is what is. Last week was filled with some anxiety because I started experiencing new/prolonged eye symptoms. As a quick background, I am considered low vision because there is an unusual retinal drag in both of my eyes. My left eye is stronger than the right and I rely heavily on it. My sister has a similar drag on her retina so it’s long been suspected that it’s a genetic condition but unrelated to my diagnosis of Escobar Syndrome. About 2 years ago I decided to go out to Kellogg Eye Institute to re-establish monitoring of my retinas and also see if any advancements had been made in terms of things that could improve my vision (nope). At that time I had genetic testing done looking specifically for mutations related to a set of retinal conditions. The results did find one but it’s a “variant of unknown significance” for a condition called Familial Exudative Vitreoretinopathy (FEVR). This means the identified mutation may or may not cause FEVR; there isn’t enough information about it in the literature. Anyway, my vision has been fairly stable all these years but you never know. I was told to contact the clinic in between checkups if I developed any concerning symptoms.
Fast forward to last Sunday. In the afternoon I had a headache and started seeing “stars” and light flashes especially when I blinked. This had happened before so while freaky, I tried not to worry and carried on with some family activities. I thought maybe it was the beginning of a migraine or something. The next few days I continued having issues but it seemed like each day or even throughout the day they were slightly different. One day it was super quick light flashes when blinking, later on it was small dark spots. Wednesday morning I tried to do work on my laptop and struggled. My vision wasn’t blurry but I felt like I had difficulty processing what I was reading. I attributed it to being tired and (hoping it was still a migraine). By Thursday morning I was still struggling so I called the retina clinic and they scheduled me in their Fellow’s clinic the next morning.
So, bright and early Friday morning my mom and I traipsed out to Kellogg where they checked my vision, dilated my eyes and took photos of the back of my eye. Long story short: it appears that my Vitreous film/gel/fluid stuff that everyone has is starting to separate from where it’s supposed to be. This is something that is pretty common in people over 50 (or people with retinal conditions like I have) and typically benign. The doctor said even if the gel does separate fully it usually settles down at the bottom of the eye and people adjust. But, there is a risk of retinal tear or detachment which would be more serious. I have to go back in about 7 weeks for a recheck on both the separation and if there’s any changes in how much tension/drag there is on my retina.
The doctor said I don’t need to limit my screen time and using screens didn’t cause any of this but I will say that this weekend I have been limiting it. I tried reading my Kindle Paperwhite off and on for a few hours yesterday and it was trificult (yes, that’s a Bluey reference haha) to focus. I’m not sure if this was because of being worn out from the week, being generally distracted, or a continuation of symptoms. My head and eye started hurting again in late afternoon (after trying to read) so I did what usually works when I don’t feel good: took a nap while using my ventilator.
When I woke up I felt better but the longer I was up the more my head hurt so I ended up going back to bed after about a half hour. Throughout the night I had a little trouble but I could have just been groggy.
Today has been mixed. I was able to go to Target and lunch with my mom and sister earlier today which was nice! I’ve been able to tolerate writing this post on my laptop but I’m still experiencing the light flashing and headache symptoms. One minute it’s annoying but tolerable and the next it makes me want to avoid all my screens.
Hopefully things calm down and I’m able to tolerate using my laptop this week so I don’t get behind on work. Right now it’s a “wait and watch” kinda situation until my follow up appointment or the symptoms change dramatically.
Oh, and let’s not forget that one of my hearing aids had to be sent in for repair this week too. Luckily I have my previous set so while slightly unbalanced at least I have that as backup. As the title of my post says… it’s always something!
