I’m one of you.

I had meningitis (viral) when I was 9 years old. From that episode on, I have been suffering from migraines. I’ve quit calling them headaches, because they aren’t. They are migraines. I am sick, my head hurts, light hurts, sound hurts, vomiting from being sick makes it hurt worse, and nothing seems to help.

I am on butorphinal spray (please spare me from the bounce back information and the addiction stuff, I’ve heard it all before). It’s the only thing that works, from time to time. I have tried everything. I’m too the point that if someone told me that standing on my head in a bucket of warm bull piss would help, I’d try it. Cold piss as well. It’s amazing, the insurance will pay for the nasal spray, which I know is expensive, as I at one time had no insurance and had to pay for everything out of pocket. Believe me, I know how lucky I am to have insurance now. I am grateful.

However, they will not pay for the botox injections that my neurologist truly believes will help me. Apparently, I do not have proof that I have migraine headaches as least 14 days a month. How do they know? I have documented it, sent it in, my neuro wrote a letter… Some pencil pushing geek has decided that I’m not a candidate. I don’t wish any ill will on anyone. However, I wish the people that make these decisions could experience what we go through for just 30 seconds before they decide how our lives should be lived.

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

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  • Nancy Harris Bonk moderator
    5 years ago

    Hi camee,

    Thanks for sharing your story with us. I wonder if its time to see the expert who treat migraine and headache patients like us. Migraine specialists are doctors who are board certified in headache medicine and treat people with migraine and headache patients all day, every day. Neurologists may be fine doctors, but have a hard time being experts in one area because they treat so many different conditions such as stroke, MS, epilepsy, Parkinson’s and more. Let me share information with you on how migraine specialists are different; http://migraine.com/blog/how-are-migraine-specialists-different/. If you’d like to look for one you can find that information in this link; https://migraine.com/blog/looking-for-a-migraine-specialist/.

    I wouldn’t be doing my job if I didn’t share a bit of information on taking opioid for migraine; https://migraine.com/blog/the-confusion-about-codeineopioids-and-migraine/.

    I see you mentioned needing documentation for chronic migraine. Keeping a migraine journal is the best way to do that and may help with insurance issues. There are so many apps out there, keeping a journal is easier than ever. Let me share Migraine.coms’ Migraine Meter with you; https://migraine.com/blog/the-confusion-about-codeineopioids-and-migraine/.

    Botox is FDA approved for chronic migraine defined as 15 or more days of migraine and/or tension headache a month.

    I hope this helps,
    Nancy

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