What was Optic Neuritis like for you?

[henrysmom]

My ON has been like this: flashing lights, a weird painful vibrating senstation in my eyes for about 30 seconds at at a time, and a black spot in my vision that looks like a bee about four feet away. (It makes me jump!)

Apparently this is not how ON is for many. Out of curiosity, what are your ON symptoms?

Does anyone here ever get a strange 'swelling-growing-numbness' in their throat that comes on for no reason and then goes away? It doesn't hurt. It is just disconcerting.

[Redwings]

Hi henrysmom:
Can you give us more details of what occurs with your optic neuritis? The little you've told us so far isn't the typical presentation. So there's either more going on that you didn't tell us, or what you're experiencing may not be ON at all.

ON is a lengthy episode typically involving 1) pain on eye movement, 2) loss of visual acuity and or visual field, and 3) loss of the color red. The episode comes on over hours to days and lasts days to weeks.

Some people do notice intermittent flashing lights, but that isn't the predominant feature. Pain and vision loss predominate in typical ON (although some episodes are painless). The field loss is usually much larger than the size of a bee, sometimes wiping out the entire field in the affected eye. And in MS, ON more typically occurs in only one eye at a time (although it can occur in both simultaneously).

When people who have had ON describe it, they usually describe it based on pain and vision loss. I've had dozens of episodes of ON and they all have involved pain and loss of vision lasting for weeks to permanently.

What stands out in your description is that you didn't mention longstanding vision loss.

There are conditions that are frequently mistaken for ON. Any visual problem that lasts only a few minutes isn't ON. Spots that float in vision (as opposed to spots that are fixed in place in vision) aren't ON. Flashing lights that are more than momentary aren't typical of ON.

Your description sounds much more like an ocular migraine. By definition, there is no headache involved in an ocular migraine -- the symptoms are visual only. There can be spots in vision with an ocular migraine, but the predominant feature is either flashing lights or sparkly, scintillating lights that obscure vision while moving in some fashion through the visual field. The other classic feature of an ocular migraine is the short duration. The episode comes on quickly (about a minute or two) lasts about 20 to 30 minutes, and then disappears quickly, with no aftereffects in vision. And because ocular migraines usually occur in the brain, the visual effects are noticed in both eyes at the same time rather than one.

Which scenario more closely describes what you think is your ON? Have you had constant pain on eye movement and/or vision loss lasting for at least several days? Or have you had flashing lights that obscure vision lasting for about 30 minutes? You can google both conditions (on reputable medical sites) and get good descriptions of the symptoms for each one. The first is typical of ON, the second is typical of ocular migraine. If someone tells you that their ON is like the second one, you should be suspicious that they're really describing an ocular migraine and not ON.

And finally, have you been diagnosed with ON by an eye doctor (ophthalmologist or optometrist)? Beyond symptoms, eye doctors have other ways to identify past or present ON.

[PeacheyPie]

My optic neuritis starts with a sudden "head ache" behind my left eye, a while later I'll notice loss of vision in that eye. This time instead of blurriness, it was shady spots in my vision (the first time it was plain blurriness). I got shooting pains when I moved my eye. It hurt the most when I moved it up and the least when I moved it down. It was a PAIN to check my blind spot on my hour long commute. My eye also feels numb and swollen and is less sensitive to cold (I blast the AC in my car, that's how I know). I was also REALLY tired when I had it.

My latest bout of ON was in June/July. Unfortunately, even after going on the IV steroids, my vision didn't come back and there's still shady spots. My left eye still feels kinda funny compared to my right, like when I blink, the right eye feels more sensitive than the left.

I hope this helps!

[henrysmom]

Hi all,
Thanks for your replies. Redwings, you are very informative, and I appreciate that.

My current neuro told me, based on my exam and the flashing lights (and yes, I did have poor vision--it was as if I could not see as well all of a sudden--things were "off") that he suspected I experienced ON. I am starting to doubt that, based on what I have been reading.

Although my neuro told me that he suspects MS, and thinks I have it, I am not officially diagnosed.

In a nutshell, I have an MRI with spots in the periventricular white matter, several symptoms, but a negative CSF. My negative CSF results came in the day my neuro left the country for vacation. His nurse told me they were negative--to schedule to see the doc when he returned--so I have no answers.

I wonder if I will get diagnosed or not.

I do not want to take DMD's for a disease I do not have; moreover, I want to know what is causing these symptoms, if not MS.

My symptoms (Not all at once--some relented at times)

Fasciculations (not common MS symptom)
Severe Heat Intolerance
Memory Issues
Verbal Issues
Numbness
Tingling
Urinary Issues
Odd Sensations all over body (even in throat)

[lksmommy]

my ON

Mine presented as a terrible "headache" behind my right eye as well as blurred vision. I could barely read and everything looked a bit dim out of that eye. Also, light caused immense pain when it was shined it it. Opthamologist noted that I had paling of the optic disc and a swollen optic nerve. DX me with ON. I still do not have normal vision, 3 months later.

[Shashi]

When I had mild ON a few years ago, as Redwings said, I had mild pain in my right eye, my vision blurred in that eye, and I couldn't distinguish red from orange.

Now, whenever I get overheated or I'm exercising, that eye will go blurry for awhile (Uhthoff's sign.)

Regarding the throat problem, do you happen to have GERD? I was having something similar a few weeks ago when my GERD got out of control. It felt like a pressure in my esophagus and throat. Once I got my meds straightened out, the problem went away.

[Alicious]

The first time, everything was incredibly bright and blurry for weeks, fairly suddenly. (I was driving on a snowy day and was fine on the drive to where I was going, and everything went to heck by the time I was driving home.) I never regained full vision in that eye, and I never had any pain whatsoever. I did not notice any color loss, but I went from 20/25 to 20/60 in a matter of hours, and never thought to look. This was a few years before I was diagnosed.

The second time, I noticed my vision in that same eye was a little off one day, and it got worse over the next week. When my husband noticed one of my pupils was larger than the other, I went to a retinal specialist who sent me to a neuro-ophth, both of whom called it ON. Again, no pain whatsoever, and this time the damage healed, except for when I overheat, and I get blurriness and loss of color saturation. I never had the color issue during the actual episode.

[Cat Mom]

I've had it in both eyes, not at the same time. Both eyes, I lost peripheral first and then the rest of the sight, literally overnight. The sight in the right eye returned but the left did not, due to repeated, back to back, ON in that eye before getting my MS under control.

7 years later, the left eye is still blind. The pupil does not recognize light and the optic nerve is not pink anymore. The right is 'dim' and causes many optical illusions like where things appear to be, what shape, colour, etc.

ON is EXTREMELY painful and causes the only headaches in my life that actually get worse when lying down. Hope it's not ON that you're experiencing, it's a nightmare.

I hope you don't mind if I hijack your thread with a question for Redwings that may benefit us both... can ON and Optical Migranes show up together? Or are they not related?

Jen

[Klutzy]

Optic Neuritis was first sign of MS

My one and only bout of optic neuritis was late '99, early '00. I couldn't see out of the lower left quadrant of my right eye. I went to the ophtho who said she thought it was MS and sent me to an neuro-ophth. He said it was too early to say MS. After a few weeks of tests (and several hundreds of non-insurance covered $ later), the ON went away on it's own before the neuro-ophth could dx anything. Four years later I got the positive dx of MS. I didn't have any pain or swelling or any of the other symptoms. I just couldn't see. The funny part was that I was working as a proofreader/editor for a publishing co. The office joke was that I was proofreader who couldn't see. Best of luck and I hope it turns out to be nothing more than a case of being overtired.

[Isis]

Have any of you just had eye pain (feels like a headache behind the eye, for lack of a better way to describe it) and mild blurry vision?

That's what I have on a regular basis. I haven't had vision loss, but have intermittent blurriness and pretty consistent eye pain.

I was diagnosed with "ophthalmic migraine" with auras about 18 years ago. I just had a CT done of my sinuses and they look fine.

I haven't been DX with anything yet...still in the process.

[elizabethwig]

i'm currently experiencing my first bout of ON (no dx of MS yet, but it came on with some facial and body tingling so they're thinking that's what's up).

it started with pain in my right eye when i moved my eyes, and a general ache/pressure behind my right eye. i had some pain around the eye, almost like i was getting a sinus infection. a couple days later, i developed a headache that was isolated to the right side. two days later (a monday), i woke up and my vision was dimmer and noisier in the right eye than the left. the night before my vision went, i remarked that it felt like my vision should be different in the right eye than the left, but i couldn't notice it.

the vision got worse over the course of a couple days, such that by thursday i could barely see bright lights. i never went completely blind in the right eye, but nearly so. by then, they could see that the optic nerve was swollen. i was much worse at distinguishing red/green with the affected eye than with the left.

i received three days of IV methylprednisolone. the pain was almost entirely gone by the end of treatment. my vision, which was worse than 20/800 on thursday, was 20/100 five days later. it's been 2.5 weeks since i finished the IV and my vision has continued to get better, but it's still got a ways to go before it's comparable to the left.

for over a week, i've felt like i was starting to get the same problem in the left eye such that i had some pain, etc. but the vision has yet to go, so hopefully it's just strain/anxiety.

i should also mention my ON was accompanied two days later by physical sensations (like buzzing/tingling) on my face, finger tips and toe/foot/leg, all on the right side. this has improved slightly but is still there and i've had new locations where the sensations have shown up.

[Stacy Noe]

My ON started with a sever pain behind my right eye....felt as if someone was stabbing me with a knife. The next day I took my daughter to the ER and when we came out I noticed that everything was dim in my right eye and it had just became dark and I couldnt tell that cars had their lights on.

The very next morning I was 100% darkness and went to an eye doctor who had me go see another one and they done and MRI to diagnose ON. I was put in the hospital.

Four days of injected 1000 mg of steroids returned my sight in that eye. 14 weeks ago I once again had ON in my left eye and was on steroids for three days. My sight once again returned but that is when they suspected MS.

I was diagnosed with MS on August 7th 2012. I am getting ready starting on the 21st of August to begin my treatments with Avonex. Although I am cautiously nervous about the treatment, I want to feel somewhat better and hopfully return back to my normal daily routine. I put my trust in God though and whatever becomes of this I know He has a purpose.

[Isis]

Do any of you have pain under your top eyelid? I don't know a better way to describe what I'm feeling.

It feels sort of like bruising on my eyeball under the top lid...like I got hit.

[pinkimartini]

My experience with Optic Neuritis was back in March when I went to bed and woke up the next morning with my vision in my left eye super blurry and then gone by that afternoon. I thought I had an eye infection so I made an appointment for my eye dr a few days later (it was the weekend). It was painful. I would liken it to a cluster headache (like something was sticking into my eye). I was sensitive to all types of light and would sleep with an eyemask.

Since diagnosis, we pretty much have figured out that this was a slow process for the last five years (I had been having terrible migraines that were concentrated behind the eye and chalked it up to stress from work).