New to the forum and first time posting.
I’m writing because I’m just at the end of my tether with my eye, and the headaches I get.
I’m a 34yoF diagnosed with RRMS in 2014. First optic Nueritis began as a hole in my vision which I ignored, after about 3 days I went completely blind in my left eye. I went to hospital etc, had iv steroids etc. My sight never came back 100%. I suffered another ON not long after, & then another. Neither as severe as the first.
I feel extremely lucky when I say that aside from this, I haven’t had anything major. I’ve been on Tecfidera since the very beginning (was living in Germany at the time) and I do suffer with odd sensations and so on, and other bits and bobs, but nothing too extreme.
The issue is my eye. It has never stopped hurting. It hurts so much that I squeeze it to relieve the pain. The whole left side of my head aches with it sometimes. It isn’t constant, but it feels like it. I’ve just started a new job, looking at a screen, and it is so strained. My vision in my left eye is so blurry and grey. Glasses don’t help. Nothing does.
I suppose I wanted to know if anyone else has the same, and how they alleviate it.
I’m also waiting for a follow up at the eye hospital for suspected glaucoma. Joy.
Hi, fellow ON sufferer here. Unfortunately I’d say that the overall problem is here to stay, in my case I have had pretty much blurred right eye since my first relapse and although it does sometimes recover in remission, never goes back to normal.
For your pain, I have found that the only thing that helps me is to simply shut my right eye and go solo with my left while the right rests.
I recognise this is probably very impractical but possibly best to utilise at night time when the eyes are weary anyway?
In any case, hope that you can find some respite against ON in a way helpful to you.
Hi, 2 separate bouts of ON led to my RRMS diagnosis 3 years ago. I’m also 32 months on Tecfidera. Fortunately no relapses since. I too never recovered 100% vision, but close to it and it took about 2 years to get there. Never had headaches as such, more just a pressure on the eye. Initially prescribed steroids but nothing afterwards. I found rest with eyes closed, dark room worked for me. Hope all is better soon, ON is pretty scary when your vision goes.
I had optic neuritis in March and was treated with high dose steroids which fortunately fixed my vision quickly, however I am still suffering from eye pain, it comes and goes and is aggravated by screentime and especially scrolling on my mobile. For me, after a few tests with the hospital it appears to just be a case of dry eyes, something that can be an issue with autoimmune disorders and personally I believe mine started due to the steroids. I would recommend keeping a bottle of eye drops handy - I use HycoSan Extra - and I used these maybe 6 times a day for a while, and now just on occasions when they feel a bit sore.
You could also try a cold eye mask which you keep in the fridge - very soothing and relaxing.
Thanks so much for your esponses, these are all helpful ideas.
Previously I have never asked for any adjustments for my workstation, but perhaps I should now- I have had this problem for 7 years now, i think it may be time! Its a little difficult as I have just started a high (ish) pressure job, where I’m partly wfh and then partly hot desking in the office, so im not sure how I’d get a set up for myself. Also I haven’t told my boss yet that I have MS. I did tell HR, and they gave me a canned response re reasonable adjustment. I’ve been open about my MS in my previous 2 jobs, but I don’t know how to approach that conversation in my new place, for some reason.
Topical treatment like drops and eyemasks sound OK too, but I’m not sure whether that will get to the root of it. I feel this pain in my optic nerve. It goes right into the base of my skull. I’ll still try these remedies though, as they do sound nice! I guess I’m fed up with it. I talk to my partner about it, but he just doesn’t get it. I think when I was first diagnosed he understood that I would maybe struggle with certain things… but now, because I’m pretty healthy and I ‘just get on with it’ I don’t think he really understands how difficult it is sometimes. I have random pains and things, and this causes me to be very anxious about my health in geneal… but the eye thing is debilitating, irritating, and tiresome!!
Has anyone tried using an eye patch? I quite like this idea, but worry that it would cause extra strain on my good eye. It might look super cool though
I still get eye pain well over a year on since the ON but only when I overuse my eyes with too much screen time or driving. No particular solution just recognising what will trigger it as it’s not always immediate but they’ll feel strained and I’ll get a massive headache for the rest of the day. So now I won’t drive anywhere more than an hour away and I’m careful with screen time. I also can’t watch our tv in the living room which is up on the wall, something about the angle of looking upwards at the screen causes my eyes to tire super quickly and get strained.
Writing it all out like that makes it sound worse to live with than it is. I’ve got so used to it now I don’t really think about it day to day, but I’m fortunate that my work doesn’t require me to use a computer all day. I definitely think you’re well within your rights to ask for any adjustments at work you may need.
