hi!! over this weekend was the northeast congress of optometry meeting, which happened to be at my optometry school, so I went.
they talked a lot about visual snow (personal interest of mine bc I have it and not many eye doctors know it exists) and also about dysautonomia (mostly POTS, but reminded me of you bc your posts got me thinking more about dysautonomia in general in practicing optometry)!!
was very interesting. basically patients with dysautonomia have a lot of visual symptoms that are very similar to those i also see in patients with concussions or adhd/autism. brains be fucked up and confusing the eyes.
I hope we get more research about it soon so we can convince insurance companies to pay for vision therapy, which is like PT for your eyes, and is what I'm planning to go to residency for to specialize in.
anyway just thought you might find it interesting!! thank you for talking about understudied medical conditions on here and bringing awareness to them!
yeah it really is weird! I have a ton of visual snow, my eyes often struggle to focus, and sometimes my pupils are different sizes. I have considered putting that last bit on some kind of medical card or alert bracelet because of how often it happens. my eyesight can really vary by the day. some days things are all super blurry, other days I can see much more clearly than that. I hear some people even have multiple different glasses prescriptions based on the day. that is so wild to me. that would take so much time to set up! is there a way for someone to figure out their prescription at home if they are trying to catch same-day symptoms for a multi-prescription approach??
on the compass-31, the composite autonomic symptom score (supplemental appendix 2), they actually ask a lot about eyesight because of how common of a symptom it is for dysautonomia! 7 out of the 31 questions are about eyes!
for me, one thing that really gets in the way of my eyesight is actually my ears! I think it might be related to ehlers-danlos syndrome or small fiber neuropathy or MCAS or something, but most things that touch my ears for a significant amount of time cause localized swelling, pimples, and/or tenderness. and then pain, always pain. so I cannot even wear most ear buds or headphones or ear plugs, let alone glasses all the time. none of my doctors know exactly why, so I have no idea how common this is, but I thought it would be worth saying anyway. with my whole host of stuff going on, I have been told contacts are a bad idea.
there are so many weird things when it comes to the autonomic nervous system. sjogren's disease, an autoimmune disease often considered the second biggest cause of dysautonomia (behind diabetes) is another big mystery when it comes to all the different weird shit it can do to the eyes vs how common it is, since it attacks the mucous membranes. there are so many of these fairly common conditions that we still know so little about! and of course diabetes affects the eyes, but there is a pretty good amount more of research on diabetes than sjogren's disease.
relevant: the hit POTS/dysautonomia medicine ivabradine causes weird visual symptoms! especially when patients first start taking it or increase the dose! it can make people see in the dark or make surroundings temporarily look animated. I would describe it as almost seeing animation smear frames? nothing too disorienting, and honestly some of the more fun side effects I have had!
if you know a POTS or POTS-like dysautonomia patient not being adequately treated by a beta blocker (especially fucking propranolol), ivabradine is usually more effective and better tolerated with less side effects. BUT the side effects can include weird visual stuff, which will eventually go away for most people.
thank you so much for learning more about dysautonomia! it really is such a fascinating area of medicine. every medical specialty can benefit from learning more about the autonomic nervous system!! tell your peers! maybe one day I will see you presenting at dysautonomia international!
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