the mild ON that I was having suddenly turned into a flaming case of ON last week. I went to the eye doctor, and she said she'd send the info to my neuro and told me to go see the neuro as soon as I could. (why do flares always happen on fridays?)

My vision in my right eye is now probably about 93% screwed up. It looks like a fogged over window that also has vaseline smeared on it too. I can see some text on my computer with that eye if it's dark. I keep having to close my eye so I can read or watch tv with my left eye. (had ON in the left eye a couple of times, so it's weird to think of my left eye as the "good" eye right now)

The thing that's bugging me the most about this, is the pain in my optic nerve. My eye has hurt for four or five weeks now, and it built up into a crescendo over the weekend. I think I'd be able to deal with this better if it would just stop hurting! the pain comes from just behind my right eye, and sometimes goes above my eye into the forehead, and it's also gone thru the back of my brain and down the right side of my neck. Really wishing it would stop.

hoping my neuro will throw pain pills at me tomorrow...ibuprofen and tylenol isnt helping at all. Valium sort of helps. not sure if the valium is stopping the pain or if it's making me not care as much about it. I've got a small amount of 5mg tablets that I've been breaking into halves and 1/4 pieces. They knock me out so bad that I've been trying to only take a 1/4 at a time. Helps, but doesnt stop it.

I dont like drugs, usually cant stand taking tylenol for anything. I especially dont like taking things like valium.


someone please tell me the pain from optic neuritis will let up soon...First time I had ON, it hurt for about a week, built up to the worst pain ever, and then left. This time it's been four or five weeks. I just want it to quit. (or I want drugs to make me not give a poo about it for awhile)

oh, and if I wasnt already in pain and uncomfortable, the rest of my body has more spasticity this week. (right side of my ribs feels like there's a boa constrictor trying to strangle me, and my stomach and feet keep getting muscle spasms. Just wish it would all leve me alone.


not sure if I want steroids for this. Did oral steroids over Xmas that made me a little...psycho, and I dont like the other side effects...plus since it's ON, I'd have to get IVSM, and I really dont like the side effects from that either...and IVSM is ridiculously expensive.

I had a humdinger of a case of ON in December, and WHOA it was rough! I thought my head would split. I felt like someone was tugging on my eyeballs which made my optic nerve fire off like crazy! They gave me dilauded in the hospital for the pain, and I was sent home with morphine. I have had rolling headaches as it has healed, but as time passes it has been getting less and less painful.

Warm compresses help. Rest helps. Eye patch helps. Dark sunglasses help. Staying away from reading electronic things helps. Somehow the computer, TV, Games, Kindles, Iphones and so on made it worse. I still have visual issues, but I am not legally blind anymore.

I hope you feel better.

I am sorry that this is happening to you Erin, but if the IVSM will help then you should do it. It might help with the pain since the swelling an inflamation will be relieved. Even though it is expensive, is it worth getting out of the pain?

Do you have an appointment with the neuro yet? Let us know how things turn out.

Geri

I go to the neuro at 3pm. Got lucky that he's there today, the next time I'd be able to get an appointment with him was May 1st.

and my eye is worse today. Dimmer. This is worse than the first time I had ON back in 2006.

I'm kind of dizzy this morning.

I've been reading a lot, because I'm so bored, but what I've started doing is using the accessibility features of my iMac. I can make the screen black with white text (rather than the usual white screen, with black text). I also turned on the screen reader so that my computer will read to me and I can sit back on my chair and close my eyes.

Figured out that my Kindle Fire is basically useless because it has no accessibility features in it, and there's no apps available to download for that. (thanks a $%^&ing lot Amazon) but I discovered that my iPad has similar accessibility features that my computer has, and a screen reader! (yay!) I think my iPod Touch is similar, but havent checked it yet, so I'm a lot more impressed with Apple products right now.

I have been using my Kindle 3's screen reader tho. I just copy the stuff I've been finding on the internet (I read fan fiction that I've been finding online for a couple of tv shows that I watch) and email it to the Kindle. So, at least I can still read.

Also bought some audiobooks. Found one for a Sherlock Holmes novel that's really good, and it's read by my favorite actor, so I'm enjoying it. (my favorite actor could read me the phone book and I'd be mesmerized by his voice)

My eye still hurts this morning, and it feels like I can barely move the eyeball. Weird thing is, when I close my eyes and put my fingers on the eyelids and move my eyes back and forth, I can feel the eyes moving, so apparently that eye still moves, it's just the pain that makes it feel like it cant. I do have an eyepatch that I used a couple of years ago when my left eye was giving me a diplopia (double vision) problem. I've been wearing my glasses, and I tuck the eyepatch behind the lens on the right side, so the glasses hold it in place. I'm going to get some black construction paper and cut out a patch and tape it to my glasses lens. (did that before when I had the diplopia) The traditional eyepatch makes me more self-conscious, and my eyelashes keep rubbing on the back of the traditional eyepatch and that's making my eyelid hurt.

Been leaving my tv on a lot. Dont actually watch it, but I've been kind of treating the shows on the DVR as audiobooks. Just sort of sit there and listen to them, or close my crap eye and watch with the slightly less crappy eye.

just wish it would start healing and go back to being normal. (wishful thinking?) Worse today than it was yesterday. It's freaking me out. I might end up begging for the steroids. I want to be able to read and crochet. (two favorite things to do) I might see if I can get a Braille primer and see if I can teach myself Literary Braille and refresh myself on the Braille alphabet. (actually already taught myself the Braille alphabet when I was about 8yrs old.) If I cant read, I will go $%^&**^*$# nuts!

Erin,

You know it will get better, just have to wait, which is the worst part of all of this. The waiting to get better to see how well you will be till the next time.

Let us know what the doc says and I am glad you got in so quickly.

Geri

I feel sick today. Dizzy, tired. Hope that the neuro can at least give me something for my optic nerve that feels like it's melting. It's hurt pretty much constantly for about 5 weeks now. I'm really getting tired of that.

Noticed last night that when I turned out the light to go to bed, that I should probably be sitting when I do that. Because I pretty much dropped like a stone when I turned off the light, good thing I have my lamps on remote controls. I'll just keep the remotes under my pillow at night. Usually I leave the remotes on my side table.

Trying to figure out what set off the ON. I dont think I have any infections that I know of. I guess sometimes you dont need to have an infection to have a flare get fired off.

Let us know what happens, please. I hope you get relief.
ANN

Just got back. He refilled my valium Rx (yay!!!!!!!!) and he gave me a Rx for Tramadol. I'm waiting till tonight to try the Tramadol, just in case it makes me sleepy. (unless I get to the point where I cant ignore the pain, then I'll just give in, and take the Tramadol and lay down and see if sleep happens) Hope it works.


We talked about IVSM, and he said that it's rough on the body (been there, done that, dont like it much myself) and he said if I wanted it, he'd set it up, but I told him that I'm still a bit traumatized from how the oral pred affected me on the last flare I had at Xmas when I got foot drop.. (made me freaking nuts) and that I'd probably just attempt to wait out the flare this time.

He said in his opinion, that he didnt think oral pred or IVSM really did much. Said that it's something that a lot of doctors will Rx to try to help the patients feel better. So they feel like something can be done other than just waiting. I dont know if that's totally true. I've had steroids that felt like they were working for me. (last couple of times I've had them, they did nothing for me tho...other than giving me a bad case of the crazies)

So, at least I've got something for the pain of a bad optic nerve, and something for the spasticity. Altho, I think the increased spasticity might be because my optic nerve hurts so much and I'm tensing up and getting stressed out from the pain in the eye.

Hugs, (((( Erin )))).

Prayers going up.

Erin,

It sounds like a wise decision. How did the Tramadol work?
ANN