A Malady Mis-Named

Many suffer from an affliction that is not well-known by most people including some hospital emergency rooms. Larry has written an account of dealing with ocular migraines for most of his life.
Gloria Dablemont

       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, other things happen. With me, a numbness begins to come from the tips of my fingers up 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. 

       No one can ever know what causes it, doctors seem to be unaware of it’s presence or how to treat it. Going to the hospital is useless. 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. And if I could have talked,  I would have told her what she was.

       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.  That is the crux of it.  If you can learn to handle that fear, you can get through it so much easier. No matter how many times it happens to you, the fear, the terror, the panic always is a part of it at first.  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 might lash out at those who 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 few hours oor a day.  Surprisingly, I have never had a headache through all that.  But some do.  And you should know that with different people, different things happen.

       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 perhaps listen to music that I like. I do not recommend rap music, but then I am a child of the fifties and sixties!! 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 help more than you know.  Select a comforting Bible verse and concentrate on repeating it over and over in your mind. I continually repeat, “Come unto me, all ye who are weak and heavy laden, and I will give you rest.”  It comes from the faith that I have in God and if you don’t have that, I hope some day you find it.  Other advice….Just let it run it’s course. Through all the years of medicine I have taken to help this condition, nothing ever worked.  You will likely find that out.

       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 an hour and then I 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.

But here is what you need to remember… soon, you will b e fine.  It won’t hurt you, it won’t damage your brain.  If you are afraid, that is the worst thing you can experience from this.  No one I ever heard of experienced any lasting effect. So close your eyes and rest and relax the best you can. if you can listen to music you really like, that will help.  And afterward, sleep a little if you can.  You’ll be fine soon.  I might be a good example because I am 70 now and in great health, still can hunt fish, walk, do anything I want.   Live with it, it is an inconvenience and little more if you dispel the panic and overcome the fear.