Lightening Flashes in the Eye Could Mean ON

[KatieAgain]

I see there was a post here a couple ago about this months, but I am posting a new thread.

I am in the midst of a flare and we decided not to do IVSM so that I could see an ENT first.

Two days ago I started getting pain in my left eye. I usually ignore it because it goes away in a day or two. Yesterday, I woke up to a personal fireworks display in my left eye. My eye was also blurry.

I honestly thought I was having a retina detachment. Because I have never had lightening flashes with ON. So off to the Opthomalogist I go.

It was confirmed that I have ON. I am now on 5 days of IVSM and 6 days of oral steroids. I hope the IVSM takes care of the rest of the flare as well.

So please, if you have flashes of light appear suddenly, please get immediate medical attention.

[DPL2014]

Interesting...

I get flashes of light off and on.

My first symptom was eye pain that wasn't debilitating, but never let up, back in December. Since January, I get a flash of light in my left eye when I look left or up, sometimes. It isn't all the time and I have no pain so my neuro decided against steroids. As a side note, I have lesions on my brain but none in my spine.

Soooo I've just been letting this go. Like, I can look left right now and nothing happens and I have no pain. It's usually the worst when I'm in bed about to go to sleep. I start Rebif in a week or two.

What a weird freaking disease, right?!?! No two of us are alike, even our optic neuritis is different. Insane.

[Tia1]

((Hugs)) Katie, I am sorry that you have ON, but I do hope and pray that the steroids will pull you completely out of this flair.

BTW, I always appreciate how you use all the information that you have gathered and the experience that you have gained to help your fellow MS'ers. You are such an encouragement to me.

Please keep us updated. You have a lot to give and a special way thats motivating. Your love of life is apparent. I hope that you realize the good that you do.

[KatieAgain]

Thank you both and thanks for the hugs. I really needed them.

I have been in a moderate flare since Jan and was about to start IVSM about a week or two ago, but my MS Specialist decided he wanted to do a complete ENT workup because I had not had one since my diagnosis in 99. If that was normal then were were going to start IVSM.

Well...needless to say, just a few days prior to my ENT...ON! It was very unexpected, because ON is usually a seperate incident. So as my Specialist informed the Opthalmalogist, I was probably doing cyclical flares again. And he was not going to wait for the ENT and I was put on IVSM that day.

It did get worse, but my sight has returned (not sure if it is back to baseline yet) and the pain is gone. I am still having the lightening flashes but I can only see them in the darkand only when my eye moves to the left....hope it is not permanent, but it really is a small thing compared to what could have been.

Tomorrow is my last infusion, and I feel as though I am getting better. But I am having to skip this months TY infusion.

And yes...ON can present itself in many different ways. I was actually shocked it was ON...I truly thought it was a retinal problem. But I do have a follow up for more indepth testing to include the retina in two weeks.

I will say, I was hating on my neuro for delaying the IVSM...when I see him in 2 weeks, I am going to hug him. I could not imagine doing two rounds of IVSM and being off TY for three months. It was a coincidence, but he made the right call on this.

Again... Thank you

[Nicoly3467]

Katie-sorry to hear about your long relapse and ON that you have. I hope your eye recovers very soon!

Thinking of you!

[KatieAgain]

Katie-sorry to hear about your long relapse and ON that you have. I hope your eye recovers very soon!

Thinking of you!

Thank you Nickki!

I am not as healed as I would like to be. This is my fourth bout of ON and it all happened so fast...I had pain for a couple days, but we are talking just a couple hours for the eyesight loss...I have some residuals that I hope will clear up.

I do have a very small smudge still on my left eye, but the sharp pain is gone.

I have tests this week and see my MS Specialist next week.

Thanks again.

[Perennialz]

I hate optic neuritis , I had it in both eyes.

My experience with ON was what looked like a piece of plastic near my tear-duct region at the beginning of it. followed by sharp eye pains off/on.
I also had a violet streak or sometimes white line streaks racing across my vision. The color red was very distorted, like it was colored outside the lines.
My vision was also badly distorted like clear jelly beans in my vision.
I had eye pressure, and dark incidents which was nauseating. I also had tinnitus and one vertigo incident. My eyes hurt bigtime when I tried to put ice on my eyes to relieve the pressure, (I thought it was a sinus infection at that time).
My ON was so bad I couldn't even drive.
I hope my experience helps.

[22cyclist]

I have had ON so many times that I have optic nerve atrophy in both eyes. I get a light show whenever the lights are low on any given day. This may become a normal thing for you. They are called phenomes and can happen before an episode, during and after. Its weird, but you get used to it.

Sorry you have ON. Happy you have the IVSM. Just had my own personal 5 day dose due to TM. Now I am just fat and can't walk. Lovely. Did I tell you I hate this disease? But, I think I will keep it just to save me the trouble of getting something worse.

Take care
Lisa

[jreagan70]

They are called phenomes

Close. They're called phosphenes.

[KatieAgain]

I have had ON so many times that I have optic nerve atrophy in both eyes. I get a light show whenever the lights are low on any given day. This may become a normal thing for you. They are called phenomes and can happen before an episode, during and after. Its weird, but you get used to it.

Sorry you have ON. Happy you have the IVSM. Just had my own personal 5 day dose due to TM. Now I am just fat and can't walk. Lovely. Did I tell you I hate this disease? But, I think I will keep it just to save me the trouble of getting something worse.

Take care
Lisa

Thank you for this answer. I am still having the light show when it is dark. I really drove my docs crazy because I kept thinking my retina was detaching! Additionally, I have lost some vision...my 4th episode with ON...that I know of.

I too have Bilateral ON. Not so rare is it? Have had TM too...single worst flare I ever had. Took months and lots of rehab.

I too hate MS! And I am trying to come to grips that I am going to becoming off TY and go on to Lemtrada or Rituxan. I feel if I come off the TY it will be an automatic reversal back to an EDSS of 6.5. I would really sort of like to give up on all of it.

Yep, I hate MS...with good reason...my journey has not been kind.

[22cyclist]

Close. They're called phosphenes.

Thank you! I need a dictionary along with a spellcheck and a pair of new glasses!

Lisa

[KatieAgain]

Since I still have these "lightening flashes", I have come up with a brand new word for them. Can not tell you what it is, because it would be considered profane.

Phosphenes or whatever they are called stink. But they are painless so I can't really complain.