I had E Feb and Mar 2020. Was just wondering. . . Does anyone else feel that your eyes are not functioning properly? My vision is very blurry and my eye balls--if not itching--feel like they are placed in puddy or mud?
Hope all reading this have a good day.
Welcome!
I relate to this. Out of hospital in November 2020, I couldn’t see a thing. I couldn’t read or look at screens for many months. Blurry faces, no detail, and I was effectively blind after hot showers. I had intense photophobia and wore dark or green glasses a lot of the time. I saw an optometrist four times in the six months after E, and my Rx changed every time. I also got an optic nerve (orbits) MRI in December 2020 to check for optic nerve damage or inflammation. I visited a neuro-ophthalmologist (MD/PhD) in January 2021, and he said there’s nothing wrong with my eyeballs; the problem lies in my acquired brain injury. It was helpful meeting with him. Have you seen anyone like that?
My Rx is stable now, but I have excessive dry eye, and I blink and twitch a lot, which is also a part of my movement disorder. Instead of “mud,” I’d say “lead-heavy”… my eyes get fatigued easily so I’ve learned to take a lot of breaks to nap or simply look out a window. Like with every problem, I also focus on the basics like nutrition, exercise, sleep, and stress management.
Take care,
Kit
Hi Kit, thank you for sharing this information with me. No, I've not seen a neuro- opto but seeing one sounds good. My rx changed after E and like you, it changes all the time. . . Making wearing "those glasses" almost irellavent. Yes, 'heavy lead' works! But still feels like my eyeballs are stuck in mud. Lol Thank you, I am very careful to rest and eat well.
Hi, I have visual snow syndrome and I’ve found it gets worse when my encephalitis spikes, I also easily go temporarily blind from pain/medical procedures, if anyone knows why, I’d love to hear 
Hey there. Have you seen a neuro-opthalamologist? I’d highly recommend that. They are rare and highly specialized, but, if you live close to a big city, there’s probably one. You could ask your GP or neurologist for a referral. And I assume you already have a neuro-immunology team, right?
Hi Kitnkaboodle, thank you for this information. I live now in a very rural area and healthcare is limited. I will however look into to those types of specialists. Thanks so much. Hope this is a great day for you.
Hello Mnt2sea,
I must admit that I was laughing when I saw your post pop up in my email box. What made me laugh was your term "E peeps"!! Thanks to you, I will apply this title to myself, and in the future, will proudly proclaim myself to be an E peep!! LOL!
On a more serious note, I have sustained all sorts of physical and psychological dysfunctions since my fallout in 2018, but never had a problem with my vision.
It really is true; no two cases of encephalitis are exactly the same. Hope you continue to heal and improve as time passes!
Be as well as you can, and remember you are not alone in your saga.
Old Gnome aka E Peep First Class
😁
Your writing made me chuckle. Thank you for the laughter-- it's good medicine. So true that no two E peeps are alike however we sure have the inside scoop on E's misery. . . Sure which my rural doctors would join this sight and learn.
Hello again Mnt2sea!
As I found out, if one doctor isn't up to the task of taking care of your needs, it might be time to find a replacement who willing and/or able to. I live in a very rural area (Appalachian mountains!) so I know exactly what you are talking about. I went through 4 of them before finding the one I have now.
(One time I jokingly offered to pay my doctor with chickens and a banjo and to my surprise, he actually DOES play the banjo, and rather well too! My romanticizing of hillbilly life disappeared when the paper bill arrived in the mail!! 😆 Originally from south of Boston and the Cape Cod area of Massachusetts, let's just say that moving here was a culture shock, to say the least!!)
As I also found out, no doctor is going to be able to come up with a sudden and permanent cure for all of my remaining problems. The logo for the Encephalitis Society is a multicolored puzzle of a brain. Finding the correct pieces that fit together, is the biggest challenge. In some respects, the doctors can be just as puzzled as us victims are, trying to find the right pieces of the medical puzzle for us.
I have learned that often, time and LOTS of patience are all that we E Peeps have to get through the day. I have also learned to have a lot more patience with myself, too, as well as others.
Hoping you have an "E peeperiffic" evening!!
OldGnome
Hi ya old gnome. This message made me lol as well. Great to see you have an intact sense of humor. "us victims"....I like that. Don't think I could be more hurt if I were assauled in an alley and half beaten to death. E feels like that to me. After I first had E, I was like why. Why. Why why did this have to happen to ME...what did I ever do to deserve this? I was so mad. Mad at me, mad at the world and forget about God. But now, almost 2 years out, I'm finding myself less angry and more about how I can move forward I'm my life. I give this growth credit to the ES. and the folks I've meet through the society.
Yes, rural doctoring is a joke at best. I do feel though that for now, I am somewhat in good hands. I'm learning that much of our recovery is is personally taking action and not relying on the so called experts. Really if you've not been through E, you have NO IDEA.
It's a beautiful day in Colorado and I'm looking forward to walking my new and very precious little Doogie girl. She's 7 pounds. I get to be her protector and that makes me feel some worth. Somedays walking her is very difficult but I make it a point to do it anyway! I hope you have a nice day. Thank you so much for your humorous reply. Your replys are a joy to read.
Hello Fellow E Peep (loving that!),
I have definitely struggled with my vision since my event, although I never had 20/20 vision anyway, I am also going to hit the big 5 0 this year and so not too much in my favour!
I couldn't read or do any detailed craft work close to being so unwell. I found my vision blurry and when I tried to read I couldn't seem to follow the sentence the letters seemed to jump up & down.
It is better than it was now, I can do everything that I need to, read, computer work, watch TV etc but sadly I still cannot do really fine craft work and so settle for the bolder creations!
If I tire though I find no joy in reading or having to concentrate on detail and so leave until another day.
I didn't have any specific eye care other than a visit to the opticians and a new, much stronger prescription for my specs.
I hope that your eyesight improves for you very soon x
Hi Green bamboo. 'Boulder Creations' that's a good thing, I suppose. It sounds good...it sounds like the name of a well to do company. Thank you for the well-wishes.
Since E, I've not even attempted to read. My eyes are saying 'nope, not doing that'. I hope to be able to resume reading in the future.
Hope you have a good day today.
I had E in Sept 2013, and my eyes have always been a problem. For years, it felt like my brain was pushing my eyeballs out! I struggled to focus for a long time. I still prefer dim lighting and the phone hurts my eyes - the iphone was good, but the Android still hurts at the lowest setting sometimes. My eyes water constantly, especially in cold weather. But it is better
Yes! 100% my brain too, is pushing my eyes around but they feel stuck; it's like there's no room for them. Yes to dim lights; I always wear sunglasses or blue blockers. Some people don't get it. They think I'm trying to be cool or whatever--not so. Thanks for sharing your experience. This type of sharing helps me not feel like such an odd ball. lol I'm so sorry you had to experience E. E is a living nightmare. I am happy for you to hear that despite all of it, you are better.
Hi E peeps,Had e October 2020.Loads of issues with left eye and diagnosed now with Horners syndrome and got strong glasses.x
Hi sleepless68, sure hope you got some rest last night, did you? Yep, my Rx script for eyes changed as well. I'm not familiar with Horners syndrome but I'll google it. Such a fun life we live. Gotta fall in love with the post E us.
Hi there,
Similar symptoms. I already am short sighted but my current glasses, although an eye test only a year ago, are not strong enough. My vision is blurred and I am also suffering from very dry and itchy eyes. I never thought to link it to E but now I will.
