Myth1977 Chronic Migraine Story
I often find it difficult to tell my chronic migraine story, because the truth of it is sometimes to hard to think on. I’ve had migraines for as long as I can remember but they did not become chronic until I was in my twenties. I made it through my undergraduate studies intact but when I was taking my Masters the chronic migraines became even more frequent and the cognitive problems far more noticeable, so I never went on to pursue my PHD. That wounded me a great deal and I decided I needed to aim lower, as in stop thinking about ambitions and attain a job that I could function in and was at least somewhat interesting. Because my goal, even as a child, was to find a job I was passionate about. It turned out finding a job of any sort I could maintain was goal enough. I worked one job with shift work and my migraines went from about fifteen a month to daily. My treatment became more complex. Abortives and more than on preventative and nothing seemed to cut it. Massage therapy, chiropractors, herbs, vitamins, botox… nothing seemed to bring me down to a level where they could be managed.
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Many years were lost to pain. They are so hazy. Because it was all about survival. Getting through the day. Never, ever dwelling on the future pain ahead of me. I landed a job at a bank and I finally thought here was something I could do and be interested in my work. But having chronic pain and working is extremely difficult. The stigma in the workplace its own burden. I missed days. I missed too many days. I would get threatened with being fired. I would go on short term leave. I would go back to work and when it was worse again I would be told I might as well resign. That I was letting down my employer, my co-workers and myself. The guilt I felt was intense. Guilt that I could not be what they wanted me to be. Guilt that I was sick. Guilt that I would call in sick. Guilt was I was on a leave, because then I was just useless.
Then what happened was another threat from my employer and my promise to not miss a day till my neuro appointment… three months away. I never made it. I had a status migraine for a week and those make me very fragile emotionally as I just want to pain to end. I could not handle calling in sick again or going on a leave that would not do any good and would make my work situation worse. So I took forty sleeping pills… I googled it and was hoping for a coma, thinking surely a coma is a good enough reason not to go into work. I did not go into a coma but I missed work anyway, because of all the sleeping pills. Then I decided one night when everyone was asleep that why not just go all the way. just end the pain being how I felt I was fundamentally worthless to work, to society and to my family. I cut my wrists, sat there and waited to die. My brother could not sleep that night, for whatever reason and found me. So I survived that. We should never be ashamed to talk about dark thoughts and suicidal ideation. We need to talk about it. So many die because they do not get the treatment they need. It was a horrible place to be in. I went on another leave of absence. I thought, wrongly, that my doctors must understand how much pain I am in if the only solution I could see in that instance was death. But what was so much worse was to realize no matter what I did, no matter how much I suffered, no one listened, nothing changed. And I think then that reaction defeated me. That no one seems to care that we are killing ourselves off, no one seems to notice when we succeed in doing so. Except us. Anyways, I felt defeated like I never had before, because now I had no hope. I went back to work because I was told to. I go to work cause it makes it easier to handle my boss. I went into survival made to just do what I had to do, what they all wanted me to do.
It has been a year since then. The wounds healed a little. But I just don’t know how long I can continue like this. Working with migraines is killing me. If I don’t miss very many days, that means I am working sometimes through severe pain. I make so many errors. I can’t concentrate. I wish someone would come along and say ‘enough. You are in too much pain to work’. And save me from this constant battle. The fact that I know that is not going to happen has made it difficult for me to face my future.
I get migraines with aura. I have a prolonged aura of visual snow and intense photosensitivity, so I cannot leave the house without sunglasses. Other visual aura symptoms I get are botchs of white or black in the corner of my visual field that expands to cover the whole thing. I get raining drops of light. Other aura symptoms I get are loss of hearing, muffled hearing, troubles speaking, writing, typing, balance problems, concentration problems, visual distortions in my environment like things are pulsing and warping, hazy vision, doubled vision. During a migraine I get the pain, nausea, IBS-D, more photodensaticity, sensitivity to sound, sensitivity to touch. I sometimes get AIWS, usually when I am sleep deprived.
Currently my migraine treatment is: Lyrica (also used for my FM), Verapamil, Elavil and tramacet. I am on zopiclone for sleep to help with my morning migraine problems. At the advice of my neuro I added in magnesium and vitamin D. I eat small meals all day. I drink lots of water, and no caffeine. I do short durations of yoga at least three times a week.
I find I need to distract myself constantly from thinking to hard on all the years ahead of me that I will have to fight this battle. I read a great deal. I write fantasy fiction. I have three blogs, one for migraines where I can rant, think and ponder my strugles.
It has been a constant battle but I live to fight another day. I survive any way that I can.