25 years of suffering with intractable chronic migraines

The couch is my best friend along with my cats and long suffering boyfriend. My second best friend, is what I call “the blue thing”. Its a icepack that you can velcro around your head, and I usually reach for it most mornings, before coffee even. These unusual best friends have been acquired from my 25 years of suffering with severe and chronic migraines.

Migraine Awareness MonthWhen I was younger, I used to get headaches. I would take Excedrin and go about my day like the rest of the world. Then at age 26, I was rear ended by a guy doing about 40 MPH, and got a bad headache instantly. Three weeks later, I suddenly lost the center column of my vision, heard this awful buzzing sound and then began to experience the worst pain I had ever felt. I was diagnosed with chronic migraine with aura and have all the lovely accompanying problems; namely vertigo, nausea, sensitivity to light, sound, smells, etc. My migraines also are intractable, which means THEY DON’T GO AWAY!! I can take a dump truck full of medication to little to no avail. Like an unwanted houseguest, they stay all day, all night, and into the next day, or days.

I think my record is 11 days. I have been hospitalized for days on end, three separate times, and frequently have to go to the ER. If they issued me a frequent flier card, I would be a world traveler on their dime. The pain from these migraines are so bad I have banged my head on the siderails and begged for death. Migraines are silent sneaky bloodsuckers, sucking up up more than their fair share of jobs, friends, family members, boyfriends, and my fun time. I remember one gorgeous sunny day, I was blue sky happy, brushing my horse till he gleamed. I proudly saddled him up, put my foot in the stirrup then; bam – I got a migraine so bad I nearly fell over. I took off the saddle and bridle and just chucked it in the corner, threw the horse back in the field, and drove with one eye to the ER. Anyone watching me would have thought I was nuts, wondering what the in hell had just happened. As a singer fronting rock bands, I used to tie a little bag of medication around my mic stand, so I could dose myself between songs if an attack hit, without leaving the stage. My lifelong motto was “Forge Full Speed Ahead” . Migraines were not going to stop me from doing what I wanted to do. I would take fistfuls of various medications I called a “molotov cocktail” just to knock back the pain and get out the door and be like everybody else.

After a decade or so of this behavior, I hit a depressive period, and gave in to the pain and misery for a couple years, wallowing in self pity and bitter sadness; migraines like bankrobbers stole everything from me, and I tallied and obsessed over every crime. Now that I am older and have tempered somewhat, I have reached the acceptance stage and I don’t fight it anymore. I made friends with the couch and my blue thing. I still hate to cancel plans and agonize over it for hours, but I try not to let it consume me. I figure everybody has some cross to bear, and I guess this is mine. My next life, however, I plan on not having a head, so there absolutely no way I can get a migraine. I’ll be a cloud that only rains on the people that were jerks and said stupid things to be like “You called out because of a headache?” or “I just take an aspirin when I get a headache, and that works for me”. Yeah, that sounds good, a big black cloud that rains hail stones, size large.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (13)
  • MigrainePuzzlePieces
    5 years ago

    Love your sense of humour! I can identify with a migraine headache so bad you wish you would die, I’m sure we all could.

    Where did you get your “blue thing” :)? I could use one right now. I’m laying on an icepack (as I type), that’s propped up by my pillow and I can’t move my head because I need it to stay on this particular spot on my right eye/temple lol.

    Thanks for sharing :).

  • RN (rescue ninja)
    5 years ago
  • Heather Benton
    5 years ago

    I enjoyed your sense of humour, which can be hard to keep with Chronic Migraines. I have had migraines since I was a young child, with my 1st full blown one at 12! My poor dear Mother was so terrified for me! I find it somewhat odd that out of my memory I remember most how it affect my MOTHER. I know now how she felt as I have watched my own 2 boys suffer from Migraine since they were young children. I know how helpless you feel seeing your child in such pain.
    By the time I was in my late teens the Visual Aura began, which just continued to get worse as I got older. They were triggered by hormone changes and lack of sleep or to much sleep. Then as I got older I just had a migraine everyday of my life. I suffered from speaking troubles, numbness, tingling in my left side of my face and arm, cognitive impairment and EVENUALLY I was diagnosed with Fibromyalgia as well.
    I too fought through them, working full time when I could, with 3 children, a home to keep going and an amazing husband. I had so much life to love, live and want to do many things. Have an early complete hysterectomy at 35 (do to a combination of horrible periods, cists, and my MOM dying of ovarian cancer at 56) I had a 50-50 chance to get rid of the pain I carried my whole life…they stayed with me! After starting HRT and a hot humid summer I had a FLAT OUT INTENSE MIGRAINE for 38 days! Yes 38 days! NOTHING would make it break….I did what I could to deal with life and try to even make lunch for my kids (my youngest was only 6) I went to my family doctor almost weekly, and the ER maybe 3 times…finally we decided to stop my HORMONES until the heat broke and hopeful my migraines would break too. I did eventually get relief and could only take half of what I need for hormones. Since then I have had Chronic Daily Migraines with no medication or treatment to work for long. I have been unable to work for 8 years, and spent most days in my dark, cool bedroom with my 4 fat cats.
    It is frustrating for everyone in the family, everything revolves around MOMS MIGRAINES! I miss so much of the kids life, I spent the 1st few years in tears every time I couldn’t attend a hockey game, ball game, teacher interview or even cook a good meal. Now it is just the norm for our house. I see it and have come to realize that this is a REAL ILLNESS, and that caring guilt and being embarrassed was not helping. Learning to say NO I cant…was a hard step but I did it and now it is something I can do with ease,
    I cant imagine what I would do without my husband. He carries the load of Dad, cook, housekeeper, works full time, takes care of our home outside, and coaches our kids in sports. I have felt he deserves more, but after 20 years I think he is with me for better and WORSE!
    I think this site is amazing and so helpful for all who suffer. Hearing other stories and know I am not alone or CRAZY, lol, really does help.

  • Heather Benton
    5 years ago

    I didn’t intend to make my comment such a long RANT!
    Feels good to share… 🙁

  • body
    6 years ago

    I love your sense of humor. Just simply love it!! I remember when the sofa was my best friend and I could count every leaf on the the outside the patio door. And, the blue gel bag. Well, mine has travelled with me for so many years, it is held together with blue masking tape and my husband says it has a strange odor, but I can’t bear to part with it as it would be like tossing out another old friend. Thank you for your share and the smile it brings to my face :), even though the circumstances are not ones we often smile about.

  • body
    6 years ago

    Ooops, I forgot the word tree :).

  • jacquelineking
    6 years ago

    i’m sooo sorry. my longest migraine was only about 4-5 days, and I seriously contemplated taking a knife to my eye to “dig it out”. I don’t know how your sane.

  • kimberlysmith
    7 years ago

    Wow, I can Soooo relate to so much of this. I too have chronic intractable migraines. Some days it is hard to stay positive when it seems like life its passing you by. My bedroom is my safe haven and my pug is ever faithfully by my side. I too was blessed with a wonderfully supportive husband. But as supportive as my family is, I don’t think that they truly understand this disease as another migraine sufferer can. Thanks for sharing your story.

  • alassandra2000
    7 years ago

    I was diagnosed with a migraine condition about 8 years ago. I have been placed on a daily dose of Propranolol to help prevent my chronic migraines. They should start you out at 10 mg for the first week and work you up to the needed level from there. My dad also has a migraine condition and swears by Cafergot. I am also doing research on getting migraine surgery. (One way you can tell if you might benefit is if your head becomes extremely sensitive when you are having one.) I have also been researching foods as possible triggers. This is just one resource: Webmd.com/migraines-headaches/guide/triggers-specific-foods
    As a heads up, ERs are full of incompetent surgeons that only know what to do if your insides are coming to the outside and not much else. (For instance, the last time I was in an ER, the doctor put down a diagnosis that I was later told by a real doctor doesn’t even exist.) If you haven’t already, I would try to find a neurologist that specializes in migraine conditions.

  • kathyhorton-bishop
    7 years ago

    I loved your story..so much like mine…..the recliner….my memory foam contour pillow and the blue thingy….are my best friends…I also love my blackout shades and curtains…I live in darkness….or very subdued lighting (table lamps and night lights) I’ve even adjusted the brightness on the tv for really bad days…I also have a doggy that only leaves my side to eat or go outside to potty…(he is my recently deceased husband’s do…I lost my sweetheart to esophageal cancer a little over 5 months ago….) I was just adjusting to and settling in to my world when everything has changed once again….no designated driver for those middle of the night ER visits or to hold my hand when the nurses can’t find a vein….Mine are not intractable as of yet but are chronic and I deal with them almost daily my record is nine days straight….then after heavy ER meds about 24-48 relief ( which I slept through) till the next one started…I have finally learned not to fight them….and give in and rest when it hits to prevent the horrendous ones where you beg for anything even having your head removed to get rid of the pain….child labor didn’t hurt as bad as those ones..and if I don’t realize I need to rest I am thankful that my doggy knows and will pester me to go lay down…so I guess my husband is still with me in some ways through his doggy….anyways thanks for letting me know I wasn’t the only one in the world dealing with this….wishing you some rest and relief from this foe….

  • Monica
    7 years ago

    Thank you for sharing this! Your sense of humor is awesome and I can relate big time.

  • Mrs. Migraine Herself
    7 years ago

    This might as well have been my story, minus the horse and the rockband part. I think I am in the depession stage of the disease. And no one seems to understand. My co-workers seem to think I am lying everytime I say I have a migraine. I want to say to them, “YOU can’t believe it??! Try being in my shoes!!” I am out of sick time for the year, so everytime I have to go home because I can’t get through the pain this time, I lose money. Its a lose-lose situation for me and they act like I’m on an extended vacation. There is truly nothing good about this disease!! I absolutely HATE it!

  • Wanda Hussin
    7 years ago

    I also enjoyed reading your story, love your sense of humor. I have suffered from migraines since I was 19 years old. I am now 58 and I don’t remember a day of my life without a headache. I do know that I had headaches before I was 19 but that one was with the lights distorted vision and the whole migraine experience. I will never forget it, people’s faces would look as if they were melting on one side. Anyway just wanted to let you know I feel You!!!

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