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Wishing for the end.

Like so many of the people on here, I too suffer chronic migraines. My migraines started when I got my first period and I would have a migraine every month with my period. I started getting migraines every second day at age 24 but I thought it was stress related as I was getting married. After numerous tests it was confirmed I was pregnant, the migraines continued throughout my entire pregnancy and my GP had me hospitalised regurlarly with pethidine and phenergan injections 4 hourly…..at around 7.5 months gestation my gynaecologist slowly took me off the drug and explained the headache was possibly being caused by the drugs. I changed my GP and was sent to a Neurologist. Long story short the migraines continued after my son was born and have been constant ever since. I have what they call intractable Occipital Nerve Migraines. I have tried over 100 medications, had over 20 nerve blocks and 8 occipital nerve resections (they cut the nerves in the back of my head and burn the ends). Most people have this done once and that’s the end of it, but in a few people the nerves grow back and multiply, yes I’m one of the few.

The longest time without migraines from the operation was 7…7 GLORIOUS years.
But now I have so much scar tissue to operate is a last resort, Botox won’t work because of the scar tissue and an electronic stimulator won’t work either because of the scar tissue. I have had a heart attack and a respiratory arrest from some migraine meds trialled, broken out in blisters, had severe diarrhoea and other extreme side effects, many medications did nothing at all and I often wondered if I was given a placebo. The one thing that has always helped my migraines is morphine, but over time I have required a stronger dose. Now my migraines are down to 2 in 4-6 weeks and my previous GP was ok with me having my morphine shot and going straight home to bed, this always worked (oh I have zofran injections at home to stop the vomiting, otherwise I vomit so much I have to be admitted to hospital with 2 drips to rehydrate me….I vomit uncontrollably with out zofran). I was happy enough, I had a job, my migraines were being treated and life was great. But recently we moved.

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Comments

  • Sunlily36 author
    3 years ago

    Thank You Joanna, I have my neurologists letters, GP lettered and a history report that I have shown each doctor I have seen, but because it’s morphine that stops my migraines no one is willing to help me. I’ve written a letter outlining everything to our national health board, so fingers crossed I might find an understanding GP through them. I have been accused of faking migraines to get morphine, if only they realised I have a life, I have a job and all I want is to be a pain free, reliable member of society and not a burden to my family, my employer or to anyone for that matter. I’m sure all migraine sufferers understand that the impact these have on every aspect of our lives and how unfairly we can be treated.

  • Joanna Bodner moderator
    3 years ago

    Hi there Sunlily36,
    Thank you so much for taking the time to share your migraine story with us. It is truly remarkable how much have had to endure and go through to FINALLY feel as though you were becoming a bit more in “control” of your migraine management and now you had to move! This is so discouraging to read! Be sure to have any & all of your doctors send your medical records to your new provider! They will certainly need your history and documentation in order to get you right back on track.

    Wishing you all the best and always feel free to reach out. Thank you for being part of our community.
    -Joanna (Migraine.com Team)

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