How long does the pain last in Optic Neuritis?

[RColeman]

I have been having the most excruciating eye pain for the past week. So bad that I ended up in the ER over the weekend. I went to the Optometrist Monday who referred me to the Ophthalmologist. Saw the Ophthalmologist yesterday, and was told that it was Retrobulbar Optic Neuritis.

I was told to take NSAIDS and tylenol for the pain. It has helped a bit, at least it's kept the pain down to a dull roar for several hours until I have to take another dose of each. I have pretty much kept the lights down and the computer screen on the lowest level of light possible.

The Ophthalmologist told me that I could have IVSM with a steroid taper but because I go through the VA for my medical treatment I would have to wait. By the time that bureaucratic nightmare ends I just might be better off eating the NSAIDS and tylenol.

How long does the pain last? Other than what I am doing (living like a mole in a darkened house?)

[bree2013]

I haven't experience ON but I wanted to respond and tell you I hope it doesn't last long. I've read others description of the pain, and hope it subsides soon.

Bree

[jreagan70]

Hi RColeman:

I've had many episodes of optic neuritis, involving each eye individually and together. Based on my experience, here are my thoughts.

The only time I wasn't treated with steroids, the pain lasted about 2 to 3 weeks. The first week was the worst.

ON pain is nerve pain, and NSAIDS and Tylenol don't do much for nerve pain. The relief you're getting now is the best it's going to get. Your other options are to knock the inflammation out with steroids, which will relieve the pain, or go on opiate pain relievers, which few doctors seem willing to do, especially when treating the underlying inflammation with steroids is the conventional treatment for ON.

My ON episodes are always treated with high-dose steroids, and the pain gets knocked out within 24 hours.

Since you've had ON for only a week, you're still within the window for steroid treatment, as your doctor told you.

The ophthalmologist you saw yesterday -- was this a VA ophthalmologist or a civilian doctor?

If you can be treated only at the VA, I can think of two options.

1) Does the VA hospital or facility have an ER or nurse clinic that can administer IVSM to you on short notice, without the red tape that approvals for office treatment need? If yes, problem solved.

2) If you can't get IVSM at the VA, would your ophthalmologist be willing to write you a prescription for high-dose oral prednisone for you to take at home? Filled either through the VA or privately? (Oral prednisone is relatively inexpensive, so should be "reasonably" affordable to pay for out of pocket.)

My veins have given out from too many sessions of IVSM, so I can't have IVs anymore. For years now, my ophthalmologist has prescribed high-dose oral prednisone for me. I take 1250 mg of prednisone every day for 3 days. That's 25 50-mg tablets per day, broken into 5 doses. I'm careful to always take it with food, and I take a double dose of omeprizole every day to prevent stomach upset.

If your ophthalmologist hasn't prescribed high-dose orals before, s/he may balk at it. But again, it's becoming more common now because of how cheap generic prednisone is and the fact that it can be taken at home, so there's no expense or inconvenience of clinic time.

And by the way, an oral taper isn't necessary. A couple of studies have shown that there's no medical benefit to a taper, and there are advantages to getting the patient off the steroids ASAP. Your ophthalmologist might not be on board with the no-taper either if that's the only way s/he is familiar with prescribing steroids. And you can be sure that the pharmacy will want to call your doctor just to confirm that the high dosage s/he wrote is what actually what s/he meant to write. That happened the first time for me, and then, once the precedent was set, my pharmacy has been filling the prescriptions without a problem.

If you saw a civilian ophthalmologist, the option of oral prednisone still works if the doctor is willing to prescribe it.

As a reminder, steroids don't affect the final outcome of ON. In early episodes at least, most people with MS get most of their vision back after ON whether they're treated with steroids or not. The final outcome is the same either way. The advantage to the steroids is that they can knock out the inflammation and the pain quickly and shorten the duration of the episode.

So if you and your doctor are willing -- and your doctor's willingness is the key -- you can get get your high-dose steroids with oral prednisone, meaning that you don't have to go untreated because you can't get IVSM quickly at the VA. That way your pain, at least, will have a chance to improve.

I hope you start feeling better soon.

[KateA2]

If you go the oral prednisone route, try to get the biggest mg pills you can safely swallow...generic prednisone is the WORST tasting pill imaginable--so having to take 10 pills instead of 50 helps. I hope you are feeling better very soon.

[Teekybird]

For me, I'd say the pain was at its most severe for the first week. I had ON in my right eye. The pain was when I looked upward or to the right. It was a stabbing, shooting pain that felt deep in my eye socket. I wasn't out of my mind with pain with it though, but when looking around/moving the eye, it was sometimes jolting. I tried to sleep a lot to avoid moving the eye. I don't know if that is a strategy you can take on.

I think I have heard others mention they are taking more heavy duty pain meds like valium for ON. You could follow up with doctor to see if they will prescribe something heavier....

[REG53]

Hello RColeman,

I had pain when I would roll my eye, it wasn't a stabbing pain but more like it was sore. It started about a wk before I started having blind spots which was ON. I did not have steroids and the pain and sight started clearing up in about two wks.

Sorry you are in a lot of pain and I hope you feel better soon.

[RColeman]

I'm still alive

Going into week two of this...

The VA is not exactly the fastest in my case right now. Still waiting to see the Neuro-opthamologist.

The pain however is beginning to decrease in severity and is not as constant. I spent the better part of the weekend under the blanket in the dark. I've learned that I have to gradually turn on the light, then wait, then turn on the computer (which also involves dimming the screen). If I feel like pushing my luck, drawing back the curtains and letting light in. If all goes well then I can at least function, if my eye starts to do the "exploding dance" (as my son puts it) it's back to square one.

In exchange of decreasing episodic pain, I have increasing blurring in the eye with decreased peripheral vision. How lovely.

By the time the VA gets around to this, this episode may just be over.