Tuesday, March 24, 2009 gem asks

Q: what kind of migraine results complete blindness for several hours, yet no pain

I get several types of very severe (and chronic) migraines, have for all of my life. Not sure of whether it is due to a rare genetic degenerative collagen disease (affecting entire body) or not, but most are always precipitated by aura (always colors). Going on 4 yrs now, I have also be physically disabled w/ multiple acquired severe spinal injuries/conditions - not sure if related or not to disease or newly acquired type of migraines. Still getting usual migraines (several different kinds according to this site), but over the past 8 mos, have acquired new type of migraine that results in TOTAL BILATERAL BLINDNESS. The symptoms are exceptioinally similar to those of retinal detachment, but JUST went to opthlamologist/ eye surgeon who confirmed it is not. It is very much like a 'spider web' of white light that completely obstructs all vision (bilaterally), but with NO PAIN or any other migraine symptoms - which led us to believe it was retinal detachment (which also is common to my disease).

Initially these new attacks lasted only a few minutes, but with their frequency have a longer duration each time - the last one lasted 3 hours! Eye surgeon checked for retinal detachment, pressure, glaucoma, etc. and said he believes they're migraines (which I never heard of), and should think of going to a neurologist. In the meantime, I cannot find any reference to this 'type', and according to the dr., retinal migraine does not apply. This 'spider web' of white light is definitely not my usual colored flashes/aura before getting the mindbending, several days to weeks of unilateral, nauseau sensitivity to light migraine. I also have 'flashes' of white light quite frequently on a regular basis several times a day/ every day - but again, not my typical aura & never develop a migraine 'headache' from these 'white light' related symptoms.

Anyone know exactly what this literally blinding manifestation is? It is frightening while 'waiting it out' & the last one being 3 hours, sometimes worries me as to what will happen the next time!

BTW - I cannot take any migraine Rx due to severe allergic reactions (swelling of throat, tongue, etc. & the only Rx that ever worked was, believe it or not, Vioxx!

AND, not sure if result of my pain Rx, but usually have chronic blurred & double (sometimes triple) vision - most of the time throughout the day.

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Answers (3)

Teri Robert, Health Guide

3/26/09 2:21pm

gem,

Migraine is a genetic neurological disease. It wouldn't be caused by the degenerative collagen disease you have, BUT anything that stresses the body makes us more susceptible to our triggers, so that disease could be impacting your Migraines in that way.

The aura of retinal Migraine can incude periods of monocular blindness, but I've not heard or read of a form of Migraine with bilateral blindness as a symptom. You can read more about retinal Migraine in Retinal Migraine - The Basics.

If I were in your position, I'd be getting myself to a good Migraine specialist to find out if this truly is a form of Migraine or if there's something else going on here. It's important to note that neurologists aren't necessarily Migraine and headache specialists. Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.

I know you're going through a rough time. If you'd like some additional support, come join our discussion forum. You'll need to register again once there because it's a separate membership database, but you can use the same member name, email address, and password that you used here. You can find our forum at http://forums.healthcentral.com/discussion/migraine/forums.

Please let me know what you find out?

Good luck,

Teri

gem

3/27/09 4:17am

Thank you so much Teri for trying to help me figure this out. Like w/ every other thing literally eating away at me ;-), I have such a horrible time trying to find any specialist that truly knows what the heck they're doing around here. I have been to several neurologists for my usual migraines, which they for some reason, can't quite get a grip on things - though I do have quite a complex medical history that seems to make their heads spin (for no good reason, as far as I'm concerned!) Reading through everything on this site & being a bit stumped w/ this one, kind of wondering if my diseases might actually have a hand in putting a 'twist' on the physiological reasons why we get them in the 1st place. (just thinking out loud here, trying to be logical) Since they are neurological & blood vessels are to blame, I'm thinking it just may be a strong link to my disease (collagen is the basis of which all tissue, connective and otherwise are comprised of, incl. the walls of blood vessels, arteries, etc. which already weak & are prone to rupture). hmmmm . . . .

I will definitely check out the forum - who knows, maybe I'll be able to help someone else out somehow :-)

I just have a feeling (from experience) that I'm going to have a heck of a time, as usual, trying to find a 'good' specialist locally, or even state wide that will be able to find a fix for this one. I'd like to know where all the doctors are in this country that actually enjoy taking on a challenge - seems like I just keep finding all the ones that want the easy in, just pay at the door on your way out patients . . . I'm sure that quite a few others here know exactly what I'm saying, first hand too. So aggrevating to have medical issues and never really finding any 'medical professionals' that can/will ever truly help <vent, vent> Sorry about that!

In the meantime, if anyone has a good referral to a doc in CT?

Teri Robert, Health Guide

3/27/09 11:38am

Gem,

You're very welcome. Complex medical histories can complicate things, that's certain. I run into that myself.

One note -- blood vessels aren't to blame for Migraines. We now know that what happens to the blood vessels during a Migraine is a symptom of the Migraine, not the cause. Several things happen before the blood vessels dilate.

As for a good doc in CT -- oh, darlin, you're in luck! One of the very best specialists is in CT, Dr. Fred Sheftell in Stamford. You can find his phone number in our listing of Patient Recommended Migraine and Headache Specialists. Not only is he a great doctor, he's a genuinely nice and kind man. If you go see him, please give him my best.

Keep me posted?

Teri

Q: what kind of migraine results complete blindness for several hours, yet no pain

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