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Childhood mystery migraines

I can remember my first migraine hit me about 5yrs old, it was in my right eye and the pain was excruciating but lasted only seconds. And then I would swear I could hear bubbles popping in my head and then it was over. Dr. Said I was have auditory migraines. Boy was he wrong!

Next 39 years the migraines came differently some with auras some just hit me and kept me in bed for several hours, as I got older they changed a little at a time then 4 years ago the eye pain came back, first a build up of pressure in, around the eyeball and facial pressure and pain, then the vessels in my eye dilate and sometimes pop and sometimes they don’t but when the pain hits, Oh my gosh it literally knocks me to my knees if I’m standing, it last couple minutes and then gone, but what’s the residual?  Deterioration of my eye sight.

Finally, this March I was dx with a variant of ocular migraines and ocular hypertension, and the eye sight deterioration is permanent! But these little migraines switched it up a bit yet again, see they always hit in my right eye and right Templar area but starting in dec 2013 the pressure hit in my left eye but pain came to the right, that kept going thru end of Feb, in March the pressure came to my left eye, the pain to my right eye and Deterioration of my eye sight to both eyes! And I’ve got a quack for a doctor again, since I’m covered by the VA I’ve got to flow the docs they send me too and I gotta tell ya it’s not so good, my good doc moves to Washington.

Now I’m dealing with these migraines and eye sight deterioration and I for the first time am at a loss, I’ve got other medical issues and I’ve come to grips with them and have figured out how to keep myself healthy and keep the ability to work and not get into a deep dark place. But these’new’ migraines are dragging me down.


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  • Katjia Schneider author
    5 years ago

    Katie, figures the term would be outdated. I live in Idaho, and our medical availability is that of a third world country, it’s sad really. Our doctors aren’t required it seems to have continue education credits or update themselves. An unfortunate position that darn near killed me five years ago when I was dx with cancer, actually I have to go to another state to be dx’d. Thank you so much for the link and the ocular neurologist suggestion. I will be asking my VA doctor about the possibility of travel to one, the VA does approve such travel every now and then so it’s worth a shot! Thanks again!

  • Katie M. Golden moderator
    5 years ago

    I’m so sorry that you’re going through this. I can’t imagine how scary it must be to think about your eyesight deteriorating.

    I found some information for you on Retinal Migraines. The term Ocular Migraine is outdated and no longer recognized by the International Headache Society. This link tells you about some of the medications that are better than others for this condition.

    I also wanted to ask if you’ve ever heard of an Ocular Neurologist. When my Migraines progressed to being chronic, my neuro sent me to a doctor that was BOTH an opthamologist AND a neurologist. In the end for me he didn’t find that there was anything out of the norm. But I would imagine this may be the type of doctor you should consider finding since your condition is fairly rare.

    The doc I saw was at Georgetown University in DC, where I live. I’m not sure Ocular Neurologists are easy to find, but it may be an option depending on where you live.


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