Hi all
I’m having a horrible time at the moment. My plans to get back to work have stopped because last week I started getting g eye pain. I had an appointment for bloods with ms nurse on Friday anyway. As she thought it was optic neuritis, she said she’d email my consultant. So I haven’t seen anybody or had my eye examined so I thought I would ask about symtoms of optic neuritis. Mine started with heavy sinus type pain thne i got a sort cramping pain in my eye socket, when I move my eye, it feels like it’s wrenching a rope- a pulling sensation. and I get agonising nerve pain across my scalp and right down my face. My eyes are very sensitive to light and causes the pain. Eye patch doesn’t work because light in the good eye causes pain. In the sunshine I’m blinded by pain and my eyes are watering profusely. But it also hurts to close my eyes and that pulling sensation is worse. I can’t sleep as I woken by a pulsing pain like someone poking me in the eye repeatedly. Pain gets bad enough to make me nauseaus I can’t touch my eye it feels enormous but doesn’t look swollen. I’m taking codiene but stopped yesterday as it might be making headaches worse.my vision in normally very good but now I have a little blurring in centre of left vision and some blurring in periphery. Does this sound like anyone else’s experience and does this mean I’m having a relapse? I’m going to see my optomertrist again privately tomorrow. I don’t know what else to do! I have had to give up driving of course so ill have to try and catch a bus hope it’s not sunny tomorrow!
Thanks for reading this.
For me, ON made my eye hurt on movement on the left and right side, and a dull ache over the top/back of the eye. There was slight blurring in the centre of my vision, which over about 12 hrs turned into a grey ‘fog’, then over the next approximately 10 days, thickened to a grey ‘cloud’ and spread outwards from the centre of vision until I couldn’t see. I had no light perception in that eye, which was a good thing with the number of lights being shone in by various doctors and consultants! It watered slightly more than usual. The other eye was completely unaffected. No pain, no light sensitivity…
After 10-14 days, the vision started to come back, and and now (approx 12 weeks since onset) I can nearly see fully, although the vision is a bit odd. I can only describe it as beign like an overexposed photo. When I had it, I wore a patch, which for some reason seemed to help, especially when the vision started to come back. My brain didn’t seem able to cope with receiving two different ‘pictures’!
The optician should be able to give you more of an idea if it’s ON, as the optic nerve appears to create a bulge at the back of your eye. I would definitely go if you can!
When I got optic neuritis it started with a feeling like somebody was trying to poke my eyes out from the back. As the pain got worse my vision started to blur and it got so everything when white except for my peripheral vision. First time round it was only one eye. Second it was both. Not good.
Hi thanks for your reply.
My optomertrist is very good he trained in neuroscience.i really hope it doesn’t get any worse
Iam I’m very glad to hear your feeling better. Is your sight good enough to drive with?
Oo, yeah. I also went colour blind first. Forgot about that.
This was a few years ago now.
My vision came back totally which is amazing. At one point I was 80% blind in both eyes. Now I can see better than most and my colour vision is apparently better than average.
the only weird thing is that I tend to close my right eye (the eye I first got it in) when the sun is bright because it’s almost like too much light is going in and it hurts. Very odd.
my god this sounds dreadful.
my utmost sympathy to anyone who goes through this even once and only briefly.
absolutely terrifying.
i understand cannabis can be an effective pain manager.
presumably most of the symptoms associated with ON is as a consequence of inflammation due to optic nerve demyelination? if so, then perhaps cannabis might also help to restore some of the vision loss too; much in the same way that it has been found to be beneficial to those with glaucoma?
the very best of luck to all who suffer this appalling aspect of MS.
I had no problems driving while I had ON. The ophthalmology consultant told me I could still drive, and plenty of people with sight in just one eye drive. You are supposed to notify the DVLA that you’ve been diagnosed with ON though.
Fingers crossed it’ll go as quickly as it’s come on! I found it very frustrating, as I kept stumbling over things and falling over, and all traces of balance went out the window when I was standing still. Had a few moments that made me giggle, mostly because I looked so stupid trying to take something from someones hand and completely missing, or a pen out a pen pot and grasping thin air, pouring water into a glass but ending up missing altogether… Trying to look on the bright side, at least ON can give you something to giggle about!