migraine blindness - lifestyle worries

A few years ago I started getting a new aura - scintillating scotoma where you get the expanding zigzagging patterns in your vision. In my case, as they expand they leave behind a gray field. I gradually become completely blind except for a little vision at the edge of my peripheral vision. I'm then blind for about 20 minutes and then it quickly resolves.

I don't even mind these ocular migraines because the rest of the migraine tends to be mild.

But in all the cases I've had this, I didn't notice I was going blind until about 1 minute or less before my eyes had totally lost their vision. In all cases as it was developing I unconsciously tried to see around the growing blind spot without realizing what was happening. Last time I ended up trying to read a book almost sideways, holding it so I could see it around the scotoma before I realized something was going on! Must be part of the aura that I don't notice it.

ANYWAY, with only one minute warning, that's barely enough time to pull over if I'm driving on the freeway or something. So far all my cases have been when I am sitting down and reading or working on the computer, so no problems so far.

But it's worrying if I think about it. I like to surf in the ocean. What if this happens when I'm pretty far out in the water catching waves. I think I would just lay down on the board and drift until my vision came back and should be OK. But what if I'm body surfing without a board, something I do a lot. I could get into real trouble.

What about other things where you really can't afford to suddenly go blind? I've thought of learning to fly, but I think that's right out!

"Luckily", my deteriorating physical condition keeps me from doing a lot of sports I use to do where this could really get me into trouble.

But if I think about it, there are probably a lot of situations I should avoid if there is a chance of my going blind with only one minute warning.

I probably need to make some major changes to avoid these situations.

Anybody else have this problem? How do you cope? What do I need to avoid doing so I don't go blind at a very inopportune moment?

This was one of the first things that I experienced. Definitely not fun...and quite scary at times.

Have you talked to the doctor? Neurologist?

Sure - I mentioned it to my primary and my neurologist as a new symptom. They just shrugged and said it is common with migraine.

So I figured a lot of people here have had this and wonder how they cope with the worry of going blind at a bad time.

I don't have the type of vision issue you have but I do lose consciousness during my migraines - usually it is a slow descent but sometimes it is fast and I hit the floor. I stopped driving in 1993 because I just didn't want to take the chance that I would hurt someone else.

For the decisions that I make about what I can and cannot do revolve around other people's safety - so I do not drive (frustrating in a town without bus or taxi service!) and I do not ride a bike (we did get a tandem so I can at least continue to enjoy bike riding). If I have a migraine and I fall off the back of the bike it is only me getting hurt and I am willing to take that risk - I am just not willing to risk other people's health and well-being.

I also do make concessions to my husband to help make him feel better about my "being out and about on my own". If I am out walking I let him know what route I am going to take and currently I do not travel by plane alone. Living within the confines of this disease is challenging and I am sorry that you having to absorb them into your daily life. L

I too have the aura with my headaches. It is a blessing in a way to be able to take the appropriate medicines in order to reduce the pain later on, but quite intricate because it is so debilitating. Mine however take several minutes before I cannot see. I wish that I had some tricks for you that I could share from experience. I have had lots of relief and minimizing my headaches by keeping a headache diary and watching carefully things that are triggers.
Perhaps you could find a migraine center close or find another neuro to help with the aura?
I hope the best for you!

Tory, you raise an interesting point by mentioning how to use aura as a positive things, by allowing us to be well prepared for the approaching M attack.
Welcome to our forum. I hope you will stay and visit often.
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