Another Chicken or Egg Story

I can remember my first severe headache when I was about 12–maybe. I was going to Catholic school and we were having a May procession in church. There, were, of course flowers everywhere. My head began hurting and getting worse by the second, and I thought I was going to pass out. I had to stumble out of church and walk home, which was only a block away. It was terrible, but I, and my mother, figured it was an allergic reaction to all of the spring flowers.

I eventually, while still a teen, started having headaches that I could never figure out if they were migraines, or stress, or cluster, or whatever kinds of headaches there are. I started taking Excedrin first to try to prevent them, and that seemed to work for awhile. But it seemed to not always agree with me or my stomach. I eventually found Vanquish, which I began taking instead, and it didn’t seem to upset my stomach like the Excedrin did. So, my life from the time I was a teen to somewhere around a year or two years ago, consisted of taking Vanquish 3 or 4 times a day to prevent headaches.

I am now in my early 70’s. Then I started having EXTREME light sensitivity, and then after another year or so I began clenching my eyes closed, and finding it hard to open them or keep them open. At first I thought it was being caused by cataracts which my ophthalmologist said I was developing. So I finally said I wanted cataract surgery even though he said it was way too early for that. My eyes–especially my right eye–was getting worse and the pain was getting worse. I finally went to a neurologist who diagnosed me with something called Blepharospasm–also called focal dystonia. That just means that I have uncontrollable spasms in my eyelids that keep me from opening my eyes without a lot of stress and anxiety. In fact I have to drive with one hand and hold my right eye open with my other hand. This is very stressful, so I try not to drive very far. I then went to another neurologist because the first one never really explained anything to me, and the second doctor diagnosed me with not only the Blepharospasm, but also Chronic Migraines, extreme photo phobia, and some kind of injury or disease in a disc in my neck. All together all of these things seem to cause pain most of the time.

They all seem to be connected, and I don’t even know which one should be treated first. The first thing the doctor wanted me to do was stop taking OTC drugs because he said I was also getting rebound headaches, and who knows what it was doing to my liver and other organs. So, I have done that. Now I pretty much just suffer all the time, but I do take Vanquish now about 2 or 3 times a week. Of course the same treatment for Migraines that is often suggested, is the same treatment suggested for Blepharospasm–Botox. I hate that.

I am on a Facebook site with other sufferers of Blepharospasm,(BEB), and they all have horror stories of their Botox injections that never actually cure BEB, but have to be repeated every 3 or 4 months, just to get some temporary relief, (if it works), so they can go to work. Well, I am retired, so I don’t care about that. I had to retire before I wanted to so am not getting as much retirement as I was planning, but quitting work, relieved me of a lot of anxiety,because I kept missing work for medical reasons, and I didn’t even realize at the time what was wrong.

Anyway, this is my story, and everything seems to be getting slowly worse. I am even more sensitive to light, and the pain from–whatever is worse. I don’t want to go anywhere, and I wear sunglasses every day–in the house, out of the house, day or night. I need them, but it also helps cover up my very droopy eyes. Almost everyone on the BEB Facebook page I communicate with also suffer from migraines. No one in my family seems to take any of my symptoms seriously, but I can expect to be almost totally functionally blind and in much pain most of the rest of my life. That scares me because I actually consider myself to be alone now. It appears to me by reading some of the other stories on this sight that Migraines are often accompanied by other health problems as well. So, just thought I would tell you all about how I am affected.

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