Hello all - I am usually on the MG forum, as I am techincally still in limboland and all But I have a question for yall - when I saw a neuro opthamologist, he told me that it looked like I had ON in the past in one of my eyes.. I would sometimes have some sensitivity to light with my eye or eyes, but never thought much about it.. never had an episode that I specifically remember - not one that brought me to a dr anyhow

The past 3 days I have been having pretty substantial pain in my right eye with blurry/changed vision in that eye too.. It feels like an ocular headache.. I used to get migraines that would hurt it felt like in the eye - lasting for hours.. but this has lasted 3 days now and it hurts when I move my eye too.. sensitive to light and all, but my eye doesn't appear any more red than normal from what I can tell... so anyhow.. I was curious what yalls ON usually feels like - does it cause a headache?? I plan on seeing the neuroopthamologist soon for all of this anways - maybe sooner than later if it keeps up!

Hello bny806 -

I am sorry you are in limbo and having eye pain.

For me, optic neuritis was a sharp pain in the R eye. It went away only if I kept the eye totally still. This is nearly impossible as the eyes work together so just patching the eye doesn't work. At times, all of my effort was finding a place to rest my vision where my eye did not hurt badly.

At the same time, I lost a small field of central vision- I measured in w a newspaper- 6 letters of news type.

The entire thing lasted approx. 6 weeks. I do not remember a separate headache.

Best to you,
ANN

If your eye pain is "substantial"...as in the worst you've ever had in your life. Call your doctor as immediately as you can. Optic neuritis can cause pain when you move your eyes, so you really should have that checked out. Call your doctor.

The first time I had optic neuritis. I would classify it as the worst headache I'd ever had in my life. I probably should have gone to the hospital that night when my head hurt so bad I thought I was dying, but I didnt. Woke up the next morning with a big blind spot in my left eye. It took about a year for that to clear up.

I've also had optic neuritis where it caused diplopia (double vision), but also gave me pain behind the eyes.

Last year around this time, my right eye started to hurt, but I didnt have any obvious vision problems. My eye hurt for about a month and a half before I started to have vision problems. That time I went to the eye doctor a week or two into the eye pain, and we'd decided to wait it out. So, after a month and a half of eye pain that would not go away, and then the vision weirdness moved in. I lost almost all vision in the right eye for about a month or two. (cant remember exactly how long that lasted). I ended up freaking out when I couldnt see. Pain, I could deal with, but not being able to see. Holy cow, I went running to my neuro and my eye doctor and they both got together and said I needed IV steroids. So, they called my regular doctor and got him to get the IV steroids set up for me.

I'm not sure why the neuro or the eye doctor couldnt do the prescribing last year. I think it's because when all the MS stuff first started, I made sure that my eye doctor, the neuro and my regular doctor all got copies of anything that I went to see one of the doctors for. So, I think they got used to getting together in a conference call or playing phone tag with each other so they all knew what the other guy might have been doing. I'm just glad they all play well together and help get things going.

When I was 1st diagnosed, they did tell me that I must of had ON at some point in my life. I did have a scotoma at that time and it took a while to go away. I still have trouble with my field of vision in my left eye.

I agree with Erin. If the pain is really bad, call your dr. as soon as you can. From what I understand, early treatment of ON can help prevent permanent vision loss.

Let us know how you are doing.

Thank yall so much!!! I really appreciate it - this whole limbo land thing is tough, as I just don't know what i'm dealing with.. I get IVIG treatments and they help but the drs seem perplexed by many of my symptoms - most recently I have realized hormones MAJORLY affect my symptoms - premenstral everything gets so much worse.... they are all stumped by this!?! heat of course makes me melt too..


anyhow, as far as the eye pain goes - it is much better, but no doubt still there - if I cough - the pressure of my eye causes much worse pain - is that common with ON?? it has become much more tolerable.. as far as I know I haven't had any new vision loss (from the visual field studies at the opth I do have visual field loss from previous ON).. I have so many dr's appointments it's hard to make more - ugh.. but I will be making another one here soon with opth too!

Erin- I can't imagine having so much loss of vision for a whole month!! how did you function?

I barely functioned. I hid in my room and tried to obsessively watch a tv show that I'm pretty much still obsessively watching. (BBC Sherlock. The fact that the main actor, Benedict Cumberbatch, has the most beautiful voice to listen to helped.). That show helped a lot with distracting me from being sick from the optic neuritis. It's probably why I still really love it. I'm waiting for the 3rd season to get filmed so I can find out what happened with the cliffhanger from the second season. (weird thing about some British shows...their seasons arent as long as tv shows filmed in America. There's two seasons of BBC Sherlock, but only SIX episodes...seven if you include the pilot episode that never got aired. An episode is an hour and a half long tho. So, they're like a series of movies)

For other things to keep myself occupied, I learned how to make my iPad read out loud to me, and used my Kindle's text-to-speech function to read to me also. I "read" a lot with my Kindle and my iPad.

you asked about when you cough, it makes your eye hurt. Yeah, I experienced that too. I had allergies last year at the same time I had some of the eye pain from the optic neuritis. Every time I sneezed, I went "OWWWWWWWW!!!...that just sucked. I think it's because when you cough or sneeze, you reflexively scrunch your eyes up with a sneeze or cough, which makes you move your eyes. I dont think it's pressure. It's just the fact that your moving your eyes and the optic neuritis is making moving your eyes painful. Just sucks. I hate optic neuritis.