A question for those who have had documented Optic Neuritis

[Quixotic1]

Many of you will know that I don't comment on the symptoms of ON very often because I had never had a known bout with it.  That is, I never had symptoms.  We know I have had it without symptoms becaquse I already have optic nerve atrophy as shown by OCT.

But, in the last month I have been having a right eye ache.  My eyeball just sits there and aches.  Not all the time, but off and on - some of every day.  No real pain with movement.  And when it began I got overheated during our bad heatwave.  For about an hour my vision was wavy.  I can only describe it like when you look across a very hot object and the things you see look like they have waves rising through them.  Like looking across hot asphalt and the air seems to make things look wavery.  Has anyone had something similar to this?  The problem went away when I cooled off.

I know I promised to come back on the forum, but things are still totally crazy.  4 days ago I overdid it and got too tired.  I was knocked flat for a day and then have felt just horrid since.  I HATE THIS DISEASE!   My right arm is so weak that it is hard to hold it to the keyboard or to comb my hair.  My handwriting looks like a second graders.  No offense to the second graders out there.

Well, off to bed.

I can't believe how many new people we have.

Welcome to all of you.

Quix

[LATW]

Hi Quix,
The way you described the waviness is really good.  I described mine like looking through Vaseline.

I had pain with my first time but aching with the next time.

I think I have it again because my vision is wacky and I am having pain on occasion but mostly aching.

Oh yuck for you.  So sorry you have to deal with this now.  

LA

[cheekyholly]

Documented - Bilateral Retrobulbar Neuritis.
Started in Jan '09 w/ blurry and shadowy vision.  I just thought I needed glasses so I put it off.  Vision progressed to being wavy and at times very psychedelic.  The neuro-ophth detected only a slight afferent pupillary defect and mild 4th nerve palsy (I see double when looking left).  VEP came back positive with severe latency in both eyes.  I have no pain on eye movement but sometimes have ice-pick pain that is fleeting.  At night when I'm trying to fall asleep I experience phosphenes.  Phospenes are bright flashes of light induced by sound or movement.  Basically, when I'm lying in bed about to fall asleep with my eyes closed the ice maker in the fridge will switch off and I will see a bright flash of light in both eyes.  The first time it happened I thought I had been struck by lightning!   I'm only 30 yrs old and I no longer drive.  The docs say it will probably get better on it's own.   It's now mid Sept and my vision is still outta whack and I'm beginning to wonder if this is my new reality.

[jensequitur]

The visual field thing is interesting, isn't it?  I only notice it in the mornings, which is also when I notice the color change the most.  It does get worse when I'm tired, but so does everything else.

I dealt with it by holding a wet washcloth with an ice cube in it on my eye.

Sounds like you're about to go into a flare, or you're already in one - take care of yourself!

[jed9999]

Sorry you're having more sxs. I, too, recommend doubling up on sleep and peace and quiet--best cure we have, maybe.

The sx that led to my diagnosis was the retrobulbar neuritis--gradually went blind in one eye--typical for sensory MS, as you know.By the way this year I have lost the sensory label and now after 36 years have trouble walking on a daily basis--yes, things change.

During the "optic neuritis" I had a very sore eyeball. For literally years (maybe 20 or more) I had the same "behind the eye" pain all the time without any loss of vision except for the initial time. I just learned to live with the pain as normal for me, and even had it so long I didn't worry it meant I might wake up blind in one eye. Unlike some people's eye pain, it was not when I moved my eyes, it was simply all the time. One day I just realized the pain I'd had for so many years was gone, and I haven't had it again since.

I practically lived many of those years with a glass of ice water held up to fit in my eye socket. I know it eased the pain and I asume it eased swelling of the whole eye, including the optic nerve.

Best of luck to you. I know you know that this too shall pass. Jane in Indiana

[sllowe]

Not good Doc Q.

I'm glad you had some relief though w/cooling down with the wonky eye, but sorry to hear about your right side protesting against all things.

No worries about about not getting back as intended. We surely miss you but totally understand.

Wishing you a little more steam to tie up loose ends and future days of feeling better!

-shell

[b125]

I have that same eye "ache."  The ache was there much more strongly when I had the other symptoms of my documented ON (it actually felt like a sinus infection), but I have had other, less sharp, eye aches since then.  More often in the left eye, which had the typical ON symptoms, but occasionally in the right. I don't get too worked up about it if that is all there is, and my vision is not affected, but it still worries me.

Sometimes bright lights bother me, especially if I am wearing my glasses (funny, because when I had no vision at all during the ON, I could have looked straight into the sun and it would have never registered). Otherwise it is usually heat or stress that bothers it, so I try to control those two factors as much as I can.

I know I have demylination of the left optic nerve, but the doctors didn't tell me anything about the right optic nerve. If there was any, I suppose they felt it better not to tell me as if to prevent me from getting too worried about things I cannot control.

[Erin0313]

Quix,

  Hi - good to hear from you even though it's not good news :(

  Well you know that I had ON twice early this year because you were one of the people that got me to go to the ER instead of waiting through the weekend on the first bought.

I now have it for the 3rd time!!!! This time is a lot like yours. My left eye started hurting 9 days ago and the vision was blurry and off but it was no where near as bad as last time and I didn't lose my color sight so I thought I will just wait.Then I got a bad sinus cold and starting having other MS symptoms like unable to button my pants, tie shoes etc. without help so I called the doctor & yep I have it again.

The kicker is that the neuro of course wants to start me on Solumedrol but I am due to go to the Cleveland Clinic & have a brain MRI and follow up Tuesday with the MS specialist for my 16 week Avonex check. If I take Solumedrol then I have to wait 6-8 weeks before an MRI can be done so they left the decision up to me.

Sorry that you are suffering - please give yourself some down time from all the work that you have been doing so you don't have a major crash & burn.

Hugs,
Erin :)

[syndismilez]

Hi!  Nice to see you here :)
ok... I was Dx'd w/ optic neuritis by my eye Dr.  But had
that Dx taken away by the Opthmologist. The first Dr. found
a mildly swollen Optic Disc.  I visited the second a few days later
and he did not find a swollen disc. He did note the pupils reacted
different and I had a Hippus?  So a maybe Dx by my PCP.
  
What brought me in to the doc in the first place
was pain in my left eye. Sort of with movement and
sometimes it just ached. The bright lights at the office
hurt and so did the sun.
I also had a haze over that eye which deffinately obsured
my vision. I would describe it like vasolene on my glasses.
The pain lifted within 3 days. The 3rd being the worst.

I did not have any color desaturation. But I did have crooked
looking lines (I work on a drafting program at work so it really
messed me up!)

I have noticed a great improvement with the sights. Now only being
affected by bright lights. I love the dim :). Saves energy anyway right?
Maybe you should go and have the doc dialate your eyes and
have a looksy.
Hope this helped!
Cyn

[SickMomma_PDX]

Just wanted to chime in and say I'm sorry you're going through a rough time right now, and I hope you're feeling better *soon*!!

I've got something weird going on with my eyes these days too. Ophthalmologist says everything looks fine to him, but it doesn't look or feel fine to me. :-(

Hang in there!

[Wobbly]

I hope you feel better soon, we miss you here, but we want you too take care of yourself.

I too get this problem with my right eye... dull ache, sore eyeball and behind the eye.  throbbing at times.  it comes and goes.  worse when it's warm.  vision get blurry, and my eyes feel like they wander and not keepin track with the other. My eye lid twitches, only the right one.  I will cover one eye to help with the pain and vision.  The pain is not bad, but there and aches... not a headache, but my right eye only.  

I get times when I've very lightsensitive as well and where sunglasses.

take care and hope your better soon

wobbly
dx

[Eyesnlegs]

I had my first dx of ON in 1991 it was very dramatic at the time, I woke in the morning with blurred eyesight and after an emergency GP appt. I was at the eye hospital by lunch time and by that time I had no vision at all in my left eye and it was very painful every time I moved it. It is very difficult not to move your eyes - try it!

Long story short - after ruling out everything else I was dx with retrobulbar ON and no treatment except painkillers perscribed and no mention of CIS or MS.My vision returned over a 6 week period but left me with grey patches, which the opthamologist informed me may get better in time. I had a baby, a toddler and 2 teenagers at the time - no time to pursue it.

My second dx of ON was in 2004 when I lost some of my sight in the same left eye and had blurring in the rest of the visual field. After numerous tests the optho refered me to the neuro who dx possible MS after finding lesions on my brain and also on the optic nerve.

My sight has never recovered from this properly and I have numerous visual disturbances which come and go but I never have a day without them. I may have had ON at other times but without the dramatic symptoms or pain the medics do not know for sure (you know my history)

When I am stressed, tired, hot or just having a bad day my eyes are exactly how you describe, although the left eye (the one I had dx ON in twice) is much worse than the right. I have described it as looking through water or hazy waves or like having vaseline smeared on your glasses, all of these describe what you have explained.

One of the sx of ON and one that can often remain longers than the ON is flashing lights for several seconds when you enter a dark room or when you close your eyes. This has been one of my companions for years, the neurologist explained that it was mis-firing nerves a bit like parathesia (is that the right spelling?).

I am very light sensitive and I also have double vision frequently, plus a lot of pain around and in my eyes which comes and goes. I was also dx last year with convergence disorder as the ON has left my left eye muscles weak, so ghosting is a constant companion.

This is a long winded way of saying that I think you may have / had ON without the pain as it is a very typical sx.

Feel better soon and be good to yourself you have been through a lot of stress with the basement - time to kick back and pamper eh?

Hope this helps
Pat x  

[Khiba]

I had ON in 2001 and never had any pain. It started with dimming vision in my left eye during a heat wave. I guess I lost about 50 percent of the sight in that eye. Colours, especially red and orange faded almost to grey and I lost contrast in what I saw. There were no distinct blacks or whites and shadows were softer. Also felt like my left eye didn't track with the right one well and it made me dizzy. My eye ached because I tried so hard to "see right" with that eye.

By the time I got home from vacation, saw my eye doctor, and got in to see a specialist and had the Visual Field test to confirm the ON, it was too late for steroids and I just had to wait it out. After about 6 months I had my total eyesight back but still didn't track well as before. Better glasses helped though. At one point during this I actually wore a patch over that bad eye and got some relief from the ache.

When I get too hot now, colours fade and contrast goes, but come right back when I cool off, thank goodness. Also because bright light bothers me no end, I sometimes wear sunglasses in the house in a very bright room. I see great after dark.

I am so sorry you are having pain with this. Add that to your stress of remodeling, and UGH, must be an uncomfortable feeling! I empathize with you.

Hang in there Dr Quix!

Jessica

[PastorDan]

So glad to see you back with us; so sorry to see a problem like this be the cause.

I am undocumented with respect to ON, for certain; all fundus exams and one VEP negative, but "...the eyeball just sits there and aches.  Not all the time, but off and on - some of every day.  No real pain with movement" sounds much too familiar.  That is the one symptom from which I've found some relief, and that is via gabapentin.

The wavy vision, though, sounds much more like a classic migraine aura.  If -- and only if -- you've read all the warnings, perhaps Imitrex will abort the next attack?  It didn't help me a lick, & then i read the warnings & found out it wasn't safe for me in the first place, but I'm increasingly unconvinced that I am suffering migraine at all.

Prayers offered on your behalf, and as they say in the trenches, get well soon.

[Ufrustrated2]

nevermind. just registered you requested "documented ON"

[Ufrustrated2]

Well Doc Q, what i can say is similar to me is my right eye throbbing dull pain/ache. not there every waking moment. though it is there whether i have my glasses on or not. a few times this summer when in a store i had a really hard time reading what was on the shelves. just came out of nowhere. it was like my eyes had drops put in them and trying to focus on something. that went away later that day.

i have mentioned this symptom to my two neuro's. i'm not sure they even listen to me but they didn't seem particularly interested in this symptom. I did have a neg VEP.

it is nerve racking this throbbing dull ache. nothing helps it as in medicine to relieve the symptoms. i will say i'm happy it hasn't become worse.

good to see ya around the campfire, get back when you can. go at it easy and be good to yourself

[michelleric]

So nice to hear from you, but I am so sorry you are not feeling well.  Think you are working too hard?. Can you take a bit of a break from all the remodeling? Sounds like you need it.

So, yes, sounds to me like ON. The pain only lasted for me, a few days at the onset of the ON, then went away, and I was left with the "holy" vision, and I don't mean that in any religious way.

Do u have a neuro-ophthalmologist you can go see tomorrow? Just to make sure it isn't anything else than ON. Would not hurt to check it out.

I am sorry you are having the vision problems. I am very frustrated by my own vision loss, and am scared to death it will come back a 3rd time and take my vision all together.

Thinking of you and again, it is so nice to see you back, if only for a short time, and so wish you were feeling better.

Hugs to you,
Michelle