Optic Neuritis PAIN!

[KalikaLily]

So my last flare up lasted from March until July. It has left me partially blind in my left eye, and the pain in behind my eyes, and it seems in my eyes is excruciating!!!!
I know the vision loss will stay, it seems that way anyway, but does this pain ever go away!?!?
Has anyone been through this before?? I am glib crazy trying to figure it out and all my Primary says is to wait it out!!
Heather

[day1]

Don't be so sure the vision loss will stay. When I had optic neuritis, the pain and vision loss lasted nearly two years in varying degrees. I used no treatment. Seven years later, my Ophthalmologist sees no signs of the optic neuritis. He even did a new test called an OTC scan... very high resolution scan to detect changes in the optic nerve. Amazing! My vision has actually improved to 20/20 and he said the optic nerve is well within normal range. Never give up hope!

[salamandertom]

I have heard stories about vision returning to normal after two years, my aunt has one of them as well. My neuro-opth told me however that while it could happen, and I should always be hopeful - I should not expect it. I am used to not seeing, and now - like you - I am getting used to the eye pain too. It is driving me nuts too. HUGS

[KalikaLily]

Well I am really glad to know there is still hope!! Thank you!!
I am also glad to know that I am not alone. I am on such an array of meds for pain, but the eye pain is still there and persistent!!
Love to all
Heather

[Devilinside]

I too had pain

My only sx that led to my dx was ON that started in May. I had excruciating pain when I would look left/right or up/down. I also had "dim" vision. I had 5 days of IV solumedrol in June which totally got rid of the pain and GREATLY improved my vision. My vision still isn't 100%, but my opti seems to think it will come back. Now, the roids were not any fun, but they served their purpose. Have you talked to you dr. about maybe some roids for your ON pain?

Vanessa

[Thankful2B]

Optic Neuritis was also my dianosing symptom. I had pain in my eye, dim and extremely blurred vision. My vision was almost useless in my right eye. I did 5 days of IV SoluMedrol. A couple of weeks after the steroids, my eye slowly began returning to normal. After about 6 months, my vision had returned to almost 20/20. That is the first thing that goes during a psuedo flare, so I try to be careful not to overdo it, etc. Yes, there is always hope!

[meg513]

What treatments have you done so far? That's terrible that you still have pain in your eye this long and your doc thinks you should just wait it out

ON was not my first symptom, but certainly what led to my diagnosis last year. The pain went away for me after a month or two. I had two round of steroids (1st was 3 days of iv, 10 taper, 2nd was 5 days IV, no taper). After 3 months, the pain was def gone but the blindness was still there, so my neuro had me spend 2 weeks in the hospital getting plasmapheresis (7 total) treatments. After that, I did a couple of IVIG hemoglobin treatments. Still can't see out of my left eye. I guess I can see shapes better, but it's still gray and causes a lot of double vision.

Anyway, good luck. It's such a frustrating symptom. How is your insurance? Is it possible for you to seek another opinion?

[Redwings]

So my last flare up lasted from March until July. It has left me partially blind in my left eye, and the pain in behind my eyes, and it seems in my eyes is excruciating!!!! ... all my Primary says is to wait it out!!

Hi Heather:
Where is your ophthalmologist in all of this? Your primary isn't qualified to be managing optic neuritis or its aftermath. It isn't unusual for pain to linger for awhile after optic neuritis, but to be in excruciating pain so long after your episode is unusual. Your continuing, severe pain warrants a new evaluation by an ophthalmologist or, better yet, a neuro-ophthalmologist -- NOT your neurologist or PCP.

[Navyvet22]

I'm sorry to hear your in so much pain. My last flare up I also had alot of pain behind my right eye and my vision was blurred. Which is very weird to me because all of my symptoms are on my left side. I did prednisone for 3 weeks and the pain went away and my vision was back to normal.

Keep the Faith..

[SBryant822]

Optic Neuritis

@ Meg513
My 13 yr old was just diagnosed with MS. In June she had another bout of ON this time acute ON. She lost vision in her right eye and she was in constant pain even when laying down. Her vision has been altered since June. She went through 5 days of IV steroids with no response and then referred to an MS pediatric specialist a week later and under went 4 treatments of plasma exchange still no response there is no vision in that eye. I am being hopeful that in time her vision will return.