Optic Neuritis Pain

[photomama]

Hey all,

Very long time, no post. I'm a long time limbo-lander (since 2005) and used to post pretty regularly here.

I've been doing fairly well in recent years, with only a large flare in 2011 that took out my left side. I've since recovered mostly from that flare and have avoided neurologists since then.

In October, I was diagnosed with Optic Neuritis by my ophthalmologist after having pain in my right eye, blurriness, dimness, and a large blind spot. I had a decent afferent pupillary defect and I earned a pass straight back to the neurologist. We did a round of IV steroids starting that night.

Since this was my second ON diagnosis (my last one was in 2011), the neuro thought my brain would light up with lesions for sure and was ready to set me up with Tysabri. Of course, my body had other ideas and I remain a medical mystery and also remain off DMDs. (Hence why I try to stay away from the neuros- it is way better for my sanity!).

Anyway, my main question is that the eye in question is still quite painful at times. My vision has improved a little- the blurriness (or rather, vaseline look, as I call it) is much better unless I'm tired, but the dimness and blind spot are still there. I don't remember my eye being this painful for this long the last time I had ON. Can anyone give me an idea as to how long the pain could last? It has been over two months now.

Thanks so much!!

Erin

[22cyclist]

Hi Erin:

I have had ON several times in both eyes. Each time was different. The pain can sometimes last for a few months just like any other flare.

Has your neurologist done an LP on you?

Take care
Lisa

[photomama]

Thanks for the reply! That is helpful to know (but not fun!).

I have had an LP and every other test out there too. We've ruled everything else out except for MS, so we call it MS or MS-like disease, and treat symptomatically, the neuros just don't want to put me on the big drugs without more proof. They like tests to prove things and my body just doesn't like to give it to them I guess. I have plenty of tests that suggest it is MS, but no lesions that show up on MRI, so I remain in limbo.

The neuro wanted to do another LP (since it has been a few years) and more MRIs this go around, but we decided to wait as it is an emotional rollercoaster to deal with that and I'm not really up for that at this time.

Thanks again for your reply!

[palmtree]

ON can be very painful that's for sure. I had it in 2010. I kept complaining of pain so my neuro would do another MRI and another 5 days of IV Solumedrol. As long as I was on the steroids, the pain wasn't too bad.

But my neuro finally said she doesn't recommend any more steroids. So there I was with the pain. My PCP (it may have been the wrong thing to do) started giving me narcotic painkillers. I built up a tolerance real fast because as soon as the pill wore off, the pain came back. I was looking at the clock waiting until I could take my next dose.

She gave me the name of a pain management doctor. While I was waiting for the appointment with the pm doc, I stopped taking the painkillers to make sure it wasn't just rebound pain. I felt like I had ice picks in both eyes.

The pain management doctor put me on a combination of a time release morphine and Lyrica. The relief was like a miracle. I am still seeing him. Every now and then I question whether I still need the medication so I stop for a few days. But so far the eye pain has lingered.

I hope yours doesn't last long, but if it does, a good pain doctor helps tremendously.

[palmtree]

Photomama,

I had another thought about your situation. You've had ON and that sucks. But there are two very good things.

The first is that your eyesight returned. The second and most wonderful is that you do not have multiple sclerosis. My eye doctor told me that they give steroids for ON so it will not develop into MS. You may be one of the lucky ones who got treatment on time and was rescued by the steroids.

As far as the pain, that's the rough part. I'd give it some time (as long as you can stand) and, if it doesn't get better, ask your PCP if you can get a referral to pain management doctor who is an anesthesiologist.

[Justsayyes]

Having ON doesn't mean you have MS, but you have a higher percentage chance of developing it according to the Optic Neuritis Treatment Trial. Avonex was approved for those who had ON and were at risk for developing MS. Those on Avonex developed MS later than those not treated.

I am trying to put this info out there for you, but it has been a few years since this all was done, so forgive me if there are any errors in my recollection of which treatment trial this was.

I had high dose steroids for my second incident of ON, no treatment for the first incident . First it was left eye, 18 months later the right eye. Recovery was the same over time for both eyes.

I think you will know when you are ready for more testing. Until then, hang in there and good luck to you!