This post is a little similar to the last one, about visual fatigue - but not entirely.
I was diagnosed with migraines when I was about 24 years old, after a few years of looking for reasons for all those debilitating headaches I got. They aren't directly connected to CVI but, my vision can impact them negatively. Although my migraine attacks are mostly connected to my menstrual cycle, I almost always get an attack, during or after doing a visually hard task, like trying to read music. ( something I'm almost totally unable to do). I remember a few years ago, I was in the middle of music reading class when I started to feel dizzy, and had weird spots in my field of vision which looked like flashlights. I went out of the classroom to sit down a bit, but then the excruciating headache hit, so I had to go home.
When this severe attacks come, I lose my vision almost completely. So I have to feel my way around to go to my room and lay down, usually with something cold on my face like a piece of cloth. I have to have my room completely dark and silent at those times, otherwise I won't feel any better. In extreme cases stomach problems might follow.
For me, other visual tasks that might trigger an attack are :
Reading/writing music
Reading/writing text for too long
Try to calculate/ do maths
Be in crowded places like shopping malls, parties, grocery stores or airports
Be outside when it's very bright - for example when it's sunny or snowy. ( Snow is ,,poision" for my CVI as I get almost blind when outside in snow). Wearing dark glasses works well here for me.
Looking for something for a long time
Be in places that I haven't been in before or haven't seen for a long time ( see last blog post).
Be somewhere where there is a lot of noise
This might also happen when I'm on stage singing, as I have to rely on my ears to preform. When preforming, I basically have to turn my vision off , to be able to concentrate properly. Just like someone else with CVI might have to shut their vision off to be able to concentrate on someone talking to them.
Looking back I remember that sometimes I felt pain after an elementary school day. (usually hardest for me were maths, sport class, break time) Break or lunchtime usually meant extreme amounts of bullying, which in turn had me feeling even worse.
After an attack, when the headache has subsided, my vision comes gradually back to ,,normal". It might take up to 3-4 days to get 100% again. During those couple of days a CVI person might feel fatigue, nausea, tiredness or visual disturbances.
This short video from the website CVIScotland shows how the vision of someone with CVI might look like right before, during, and for a couple of days after a migraine ( these visual disturbances may persist even though the head pain is gone.) For me, I still have'nt found a way to combat them fully but I hope it will come soon. What helps a little bit is to cool your eyes down, for example with an ice gel-mask. If the head pain lingers I usually take a pain medicine and take a hot shower ( best to have it as hot as you can handle). Then I usually lay down in a dark room and try to sleep. Drinking a can of coke or other soda with small amount of caffeine helps a lot, also with the stomach problems that might follow the migraine.
Most important, I think, is to realize that migraines can be a common side effect of CVI ( I know some other CVI folks that get severe migraines like me). The energy that a CVI person needs to use to look at things is about 20 -30 times more than with a non CVI individual.
I found this photo the other day. I felt that it shows pretty much the chaos that I ,,see" when for example trying to read music, doing math, or other hard visual tasks. Some CVI people might see something close to this when reading words or looking at faces for example.
This statement is so absolutely true. Like I mentioned above we have to use way more energy to look at simple things, even our watch, to tell time, than a person that doesn't have CVI. As a result we get extreme fatigue - just as you would if you'd try to knit while walking a tightrope! I will leave you with this in mind to think about for now.
Thank you so much for reading!
Dagbjört
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