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Old 07-15-2012, 11:09 AM   #1
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MEWDS & Photophobia

Hi all,

I'm having a hard time finding more information about MEWDS. I was diagnosed with it last week although I have been dealing with it since the end of June. I thought I was having a very long migraine because my main symptom was photophobia and headaches if I dealt with light.

A few days before the photophobia, I did notice some very tiny visual disturbances in my right eye but I chalked it up to having dry eyes or a loose eyelash or something. My right eye sees things a bit 'dimmer' than the left but visually things are still 20-20.

I've seen a ophthalmologist and another who specialized in retinas. He called it white dot syndrome and says he thinks it's MEWDS. He hasn't noticed any other issues with vacular 'leakage' or swelling, etc.

With MEWDS, from my googling it seems as though symptoms will last 1-2 months or possibly longer. But this almost always seems to imply that vision will be restored. Since my main symptom is photophobia, I wonder if that will clear up in the same time period?

I'd be very interested in hearing any first hand accounts on this as I haven't found too many and the doctors aren't giving me a lot of info. I've been referred to a neuro ophthalmologist but I won't see her until the 7/27.

I've been dealing with vestibular neuritis for about 6 weeks now, since 5/27. A few weeks in to that and I started having major GI issues. Was admitted to the hospital and spent two weeks unable to eat and barely drink. At the same time, I had the photophobia and 'migraines'. Now several weeks later, the GI has mostly cleared up, the vestibular neuritis might be a little better, but the photophobia remains.

Unfortunately, I make my living using computers and I find it almost impossible to use them right now. I'm wearing sunglasses with the brightness setting all the way down with all my fonts 10x larger than normal and I still get headaches. Any tips on how to work through the photophobia?

Sorry to be so verbose, more information. I've had a high res MRI and a CAT of my head, brain, neck and everything was normal. That was originally for the vertigo issues, but I had developed the photophobia/GI issues right before the scheduled MRI so it was timely. I don't know if they did the same tests that they would have for the eye issues though. Not sure if it included a lot of pictures of the optic nerves or what have.

The opthal. gave me acular three times a day. My neurologist also gave me a 12 day course of prednisone to try and make the headaches go away. I guess MEWDS isn't supposed to be treated. But I think maybe the photophobia is triggering bonafide migraines, if such a thing is possible.

Anyway, any information or tips would be great.

 
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Old 02-26-2013, 05:21 AM   #2
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Re: MEWDS & Photophobia

Hey,

I saw that nobody gave an answer to your post. I'm really curious how your mewds developped. I suffer from the same symptoms, i've had it 3 times. This morning my eye doctor and I came to the diagnose white dot syndrome. Still got some test to do before were sure

 
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Old 02-28-2013, 05:37 PM   #3
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Re: MEWDS & Photophobia

The doctors were never able to make a specific diagnosis between MEWDS or AMPPE in my case. The extreme light sensitivity has never been explained. About 9 months have passed I guess and I still have photophobia although it is much much less severe than it was. I can watch TV and use a computer much more frequently now and rely on sunglasses much less. The biggest reduction in light sensitivity came a couple months after presentation, and then another improvement much more recently since the beginning of this year.

I did end up with full blown migraines, in fact I was having them 6 days a week, sometimes 3 days in a row for months and months. I'm on medication to control them and they are now down to maybe once a week or less. I'm not sure if it was the white dot syndrome or the vestibular neuronitis which triggered the basilar migraines. But it made it difficult to pinpoint certain symptoms of either.

I still have reduced vision in my right eye. I can't read as clearly with it and it still remains dimmer, although I am not sure any tests have shown any differences between the two eyes apart from some scaring in the outer portions of the retina. I'm still forced to have much larger fonts than before my episode.

The lesions in my right eye never got any worse and continued to clear up and become more 'yellow'. I now follow up with the doctors much less frequently just to keep an eye on the retina. I haven't had any recurrence of symptoms, but I still may be recovering from the initial bout.

 
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