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  • Optic Neuritis treated, still having pain - HELP!

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    Old 10-01-2003, 02:45 PM   #1
    Devrha32
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    Unhappy Optic Neuritis treated, still having pain - HELP!

    Hi Everyone,

    Anyone have constant mild pain in their eye (with a blurry spot) that continues months after the IV steroid treatment? Could this be permanant??? I take advil now almost daily- my eye feels so agitated, and this spot I constantly see is really giving me the blues...Please let me know your thoughts. I feel like I'm going crazy - thanks, Devrha.

     
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    Old 10-01-2003, 04:24 PM   #2
    Mom_of_two
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    I had optic neuritis in my right eye in March of this year, I didn't get any steroid treatments for it, though. It took about a month to get my vision back completely. But to this day, I will still get occasionally little stabbing pains in my eyes. Mainly when I am extremely tired or have a headache. Have you asked your opthalmologist and/or neurologist about the pain you're getting?

     
    Old 10-01-2003, 05:25 PM   #3
    Devrha32
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    Hi MOMofTWO,

    Thanks for writing - yes, actually I ended up seeing a neuro-opthomologist after the second eye got ON. I told him of the pain, and he said to take the advil when it bothers me... but it has become much more frequent, and though I have a second MRI to do before seeing him in a few weeks, thought I would post and see if anyone else is suffering- I am so sorry you have re-occuring problems... I hope this goes away for both of us. So far, though I did get ON effecting both eyes I have not been diagnosed with MS - my lumbar puncture and MRI looked good. They did want to repeat the MRI (I'm doing that in a few weeks) to be sure there are no changes. What is so hard for me is having ON and knowing it is associated so highly with MS...

     
    Old 10-20-2003, 01:57 PM   #4
    been around ms
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    WHAT YOU MAY HAVE IS NOT OPTIC NEURITIS, BUT TRIGEMINAL NEURALGIA. IT IS QUITE COMMON IN MS AS A SHARP PAIN ON THE SIDE OF THE FACE, BUT CAN ALSO BE LOCATED IN THE EYE. TWO 150MG PILLS OF TRILEPTAL TWICE A DAY SHOULD GET RID OF THE PAIN IN SHORT ORDER. AFTER A TWO WEEK TRY AT TRILEPTAL AND THE AIN IS GONE, TRY CUTTING BACK ON THE DOSE TO SEE IT THE PAIN RETURNS. IF IT DOES YOU KNOW TO GET BACK ON THE DOSE.
    Quote:
    Originally posted by Devrha32:
    Hi Everyone,

    Anyone have constant mild pain in their eye (with a blurry spot) that continues months after the IV steroid treatment? Could this be permanant??? I take advil now almost daily- my eye feels so agitated, and this spot I constantly see is really giving me the blues...Please let me know your thoughts. I feel like I'm going crazy - thanks, Devrha.

     
    Old 10-20-2003, 10:10 PM   #5
    AngelicBrat
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    Hey everyone,

    I have had Optic Neuritis in both eyes for the last YEAR. I hate to be the downer here Mine has lasted for a whole year complete with double and blurred vision. Both eyes look identical now as they did when I started. They thought I had MS, but it turns out that I have Lupus and a blood clotting disorder called Antiphospholipid Syndrome (I posted about it here in this forum down below). It's been a long haul, but they think that my vision will come back eventually now that my blood is being thinned. It's so crazy that Optic Neuritis can be a symptom for many things hey? I hate not being able to see though, its so hard I can relate.

    ~Angelic

     
    Old 10-22-2003, 04:41 PM   #6
    Devrha32
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    Thanks for the responses!

    been around ms - I'll mention TRIGEMINAL NEURALGIA to my neuro-opthamologist next week - but my optic neuritis is confirmed in my previous MRI.

    Angelic - I really feel for you - so sorry to hear you're sight was so compromised! Though my tests so far have been a 'no' for Lupus... I'll know the results of my latest MRI on Tuesday.... hang in there, thanks for the kind words!

     
    Old 10-30-2003, 02:23 PM   #7
    galad
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    i had it in both eyes too--apparently that is more untypical than getting it in one eye, and more likely to have a diagnosis OTHER than ms. My ON started last Nov. with a blurry grey spot in one eye, progressing to photophobia, shaky lights, colour loss and then darkening of vision around Xmas/New Year. In jan the second eye got worse while the other eye showed slight signs of improvement. by mid Feb my eyesight was pretty good and I was able to return to work. My vision is nearlyt 100 percent now a year on, but like the OP i do have some pain around my eye socket. I think it may be some kind of neuralgia though.

     
    Old 11-27-2003, 01:35 PM   #8
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    Re: Optic Neuritis treated, still having pain - HELP!

    Hi! Are you still having pain?

    I re-read articles with regards to optic neuritis. Pain is part of it. There is pain with eye movement; orbital pain.

    What kind are you having?

    I pay attention to pain because I have hemorrhages too. Pain is a sign of neo-vascularization which I'm being monitored for. to correct if they appear To clarify, initially I was diagnosed with optic neuritis and treated by the Optic Neuritis Trial Treatment (ONTT), I was referred out since after 6 weeks the condition didn't improve and diagnosed then with a retinal vein occlusion.

    I have symptoms of ON though: orbital pain and swelling, visual changes with movement, bath, shower, pressure and my optic nerve is still swollen as well as having macula edema with hemorrhages. So

    Anyway I read this regarding ON:

    "Significant pain with eye movement is present in nearly every case of demyelinating optic neuropathy"

    I don't know if that applies to your condition but thought I'd post it.

    Last edited by californiasunflower; 11-27-2003 at 01:38 PM.

     
    Old 01-21-2004, 04:53 PM   #9
    Devrha32
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    Re: Optic Neuritis treated, still having pain - HELP!

    Thanks for the wonderful information 'californiasunflower'!

    Yep - still having pain. My neuro-opthomologist confirmed it is now a case of Scleritis. So, lots of Prednisone later, it did not clear up in the way we were hoping. I've bounced from Vioxx (bad reaction) to Celebrex - cause we were going for the "non-steroid" therapy... this too is not working. I go back to the doc in 2 days, hoping for a miracle this time... it's so painful - especially night-driving... the lights hurt so much.

    Thanks again for the words :-)

    Quote:
    Originally Posted by californiasunflower
    Hi! Are you still having pain?

    I re-read articles with regards to optic neuritis. Pain is part of it. There is pain with eye movement; orbital pain.

    What kind are you having?

    I pay attention to pain because I have hemorrhages too. Pain is a sign of neo-vascularization which I'm being monitored for. to correct if they appear To clarify, initially I was diagnosed with optic neuritis and treated by the Optic Neuritis Trial Treatment (ONTT), I was referred out since after 6 weeks the condition didn't improve and diagnosed then with a retinal vein occlusion.

    I have symptoms of ON though: orbital pain and swelling, visual changes with movement, bath, shower, pressure and my optic nerve is still swollen as well as having macula edema with hemorrhages. So

    Anyway I read this regarding ON:

    "Significant pain with eye movement is present in nearly every case of demyelinating optic neuropathy"

    I don't know if that applies to your condition but thought I'd post it.

     
    Old 01-22-2004, 11:11 AM   #10
    californiasunflower
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    Re: Optic Neuritis treated, still having pain - HELP!

    Hi Devrha!

    ON is certainly a challenge for the patient and physician(s)! I hope you get some good answers when you see your doc!

    For six months now, I've taken an aspirin 325 mg and trental (3 tablets per day) every day to treat the retinal vein occlusion. Trental is a circulation drug but it helps with inflammation too. The treatment is investigational. These eye problems give one a tough time but I think it may finally be helping. I see the neuro ophthal also very shortly. Even tho I've been told I didn't have ON, my symptoms of macula edema, optic disc swelling produce the same type of symptoms you experience. So will post my progress and his recommendation for relieving pain.

    Good Luck! Let us know how the doc appointment goes!

     
    Old 02-04-2004, 01:32 PM   #11
    Devrha32
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    Re: Optic Neuritis treated, still having pain - HELP!

    Hi There... Lots to talk about, but I am going to contact everyone under a different name from now on - long story..... but all that matters is, I will get my privacy back.

    Take Care,
    Devrha
    Quote:
    Originally Posted by californiasunflower
    Hi Devrha!

    ON is certainly a challenge for the patient and physician(s)! I hope you get some good answers when you see your doc!

    For six months now, I've taken an aspirin 325 mg and trental (3 tablets per day) every day to treat the retinal vein occlusion. Trental is a circulation drug but it helps with inflammation too. The treatment is investigational. These eye problems give one a tough time but I think it may finally be helping. I see the neuro ophthal also very shortly. Even tho I've been told I didn't have ON, my symptoms of macula edema, optic disc swelling produce the same type of symptoms you experience. So will post my progress and his recommendation for relieving pain.

    Good Luck! Let us know how the doc appointment goes!

     
    Old 02-07-2004, 01:03 PM   #12
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    Re: Optic Neuritis treated, still having pain - HELP!

    Hi Devrha and all!

    Devrha--how is your pain with 3 tablets of Neurontin? Getting relief?

    Last edited by californiasunflower; 03-10-2004 at 09:00 AM.

     
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