They
call it ‘ocular migraine’ but that is a poor name for something that is
awful. I know… I have lived with
it for more than fifty years. I am
writing about it now because I know others have it and have no idea what it
is. I particularly want parents to
know if the malady appears in their children.
First,
the word migraine is misleading.
Migraine headaches do not have a thing to do with it. The first thing that happens is,
without warning, there appears a very distinctive curving zig-zag line in your
vision. Quickly, just beneath and
around it is a brightness like you are looking into a white light nearly like
you would get from looking directly at the sun. Within a minute, it becomes a complete blindness, except for
what they refer to as peripheral vision, meaning you can see, to some extent,
those things to your far left or far right, or at your feet.
As
this blindness takes over, a numbness begins to come from the tips of your
fingers up your arm. With me it is
always my left arm. The numbness
is severe enough that you cannot feel a pin stuck in your arm, and it comes
with about the speed of an insect crawling up your arm, into your shoulder,
neck, and quickly into the left side of the face, right down the middle of your
forehead, nose and mouth. The
other side of your body is unaffected.
With that numbness, you will lose the ability to speak coherently, so
you learn that you had better tell someone quickly that you are going to be
okay and to leave you alone and not take you to the hospital.
Going
to the hospital is useless. They
do not know what is wrong, and the last time I went, a big hefty, gruff nurse
told me I was putting on an act.
“You can see me just fine, and you could talk if you want to,” she
derided me. I wish to God I could
have seen her face or remember who she was because if I did I would let that
hospital know that anyone in any kind of stress should not be ridiculed.
What
is difficult to deal with is the terror you experience, a foggy awareness of
all that is going on, and an unreasonable, unexplainable fear. No matter how many times it happens to
you, the fear, the terror, the panic always is a part of it. In one to two hours usually, you
recover the ability to speak fairly coherently and then the blindness subsides
fairly quickly. In the aftermath,
you are confused for hours, and you may become extremely irritated and
angry. You will lash out at those
who love you and are trying to help you.
But the confusion, the inability to make your legs and arms work like
you want them to, and the inability to think of the words you want to use, may
last up to a day. Surprisingly, I
have never had a headache through all that.
The
best thing anyone could do for me when I have one is to give me something to help
me sleep and leave me alone. I now
deal with the onset of this by doing these things… If I am alone, I stay away from anyone, and find
seclusion. Perhaps I will pull my pick-up into a remote parking lot, lay the
seat back and close my eyes and take a pill to relax me if I have one. Afterward I ask directions from someone
on how to get where I am going.
But believe it or not, it may take awhile to remember just where I am
going. This
might make a lot of folks laugh, but years ago I started saying something over
and over that helps mightily. I
continually repeat, “Come unto me, all ye who are weak and heavy laden, and I
will give you rest.” Through all
the years of medicine to help this condition, nothing ever works, but that
bible verse does. It is something
I recommend often to those who have any problem, especially depression or panic
attacks.
And
yes, I know what brings these “Ocular Migraines” on. Three things,---extreme fatigue, extreme stress or extreme
anger. And the degree of the
severity and long-lastingness is strange.
I have had these things last only a couple of hours and return quickly
to normal. But sometimes I have
experienced a bad affect for up to two days.
Once out on the lake, I got through it by lying down in a
pile of leaves against the trunk of a large tree. I eventually slept quite a while and it was late in the
evening when I awakened. There on
the shore was my boat, but I had no idea what lake I was on or how to get back
to my truck. Thank goodness some
folks on the lake helped me. I was amazed how I could be so short-tempered and angry
with people so kind and helping.
What I wouldn’t give to go find them and explain things.
I
have tremendous embarrassment from what I have done at times immediately in the
aftermath of the blindness. There
is a doctor I think the world of, who was trying to help me, and Gloria tells
me that I talked to him like he was my greatest enemy. I would like to go talk to him, but I
just don’t know what to say. For
the rest of his life, that man will think I am a worthless jerk.
The
first of these “spells” occurred when I was 13, and when I was 19 at the
University of Missouri, they had me in the hospital for two days. That was the worst of the occurrences,
because I couldn’t describe my parents.
When I finally came up with their names I couldn’t for the life of me
remember what they looked like.
In
my thirties and forties, I would go for years and have no problems and get to
thinking I had outgrown the awful things.
But in the last two years, the severity has increased, and now they
overwhelm me by coming every few weeks.
For anyone who might recognize these symptoms, the one
thing we all have in common is the zig-zag line and temporary blindness. From there, everyone with ocular
migraine seems to have different problems in the aftermath.
About
ten years ago, driving through Macon or Moberly Missouri, I can’t remember which,
I was quickly hit by the onset of a particularly bad episode. I was near a hospital and somehow ended
up in a dark room for four hours under the 10-minute attention of an emergency
room doctor who didn’t know what was wrong because I couldn’t tell him. That day, after 40 years of living with
this, I found out what it was! A nurse came in and spent about a half hour with
me. She said she had the same
thing, and described the numbness, the blindness and the zig-zag line to
perfection. I broke down and
actually cried with relief when she told me that the problem would never have a
lasting effect. She knew because
she too had lived with it since childhood. She put her arms around me and assured me that we would both
be just fine. I hugged her and just
turned loose all of my emotions. I
didn’t want to let go of her.
There
have been a bunch of MRI’s and cat scans that say there is nothing in my brain
they can find. I doubt if many people have had their brain looked at that
often. But the United States Army found what others did not. When I was 20 I wanted to join an
Officer Candidate School and in St. Louis at a place called Jefferson Barracks
they put me in a dark room and hooked up about a dozen or so wires to my
head. I slept for three hours and
afterward I was told my brain waves showed some kind of problem which rendered
me ineligible for the armed services except for a possible stateside desk
service. I had plenty of questions, but they had no answers.
So
there you have it. I have bared my
soul about something I have seldom spoken of, even to my family. But recently I was talking to a
youngster who I immediately knew was a victim of ocular migraine. It makes me think something needs to be
said about this. Who knows how
many people have it, and live in the dark as to what it is. If you are a parent and experience a
problem with a child who is sometimes incoherent, or can’t see, or has a
numbness in their face, you may be able to help him a great deal, even though
medical science cannot do much.
And
no matter who you are or what you might be living with, remember that Bible
verse. It is something of the
recipe for small, unheralded miracles.