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Don't know where I belong

Hi, I have had headaches/migraines forever. They became chronic 7 years ago; today after trying almost every treatment, medicinal and non, I just had another 'headache specialist' suggest there is nothing more he can do. I just finished a 40 day intractable headache run; with migraines intermixed and survived using my cocktail of abortive meds (preventive #14 and 15 (Botox) didn't work). I feel guilty writing because I haven't had the kind that has knocked me out in over a month...I continue to 'power through' the pain; canceling appointments twice last month, and coming home to just collapse from exhaustion and pain. I feel even though I 'function" headaches/migraines rule my life and have me isolate, keep me from taking vacations, monitor the weather, and yes I get depressed after so many 'failed' hopeful attempts to get help. I read other people's stories, and I have been that disabled, but now I seemed to go in waves. Does anyone else? I don't know what starts one any more than I know why it ends. I guess I am looking for someone to tell me it is okay to see myself as someone who struggles and belongs here even if I am functioning at a higher level when the waves go down, but never to a zero. It is so weird to feel guilty that at the moment I am not debilitated by the migraines and yet I won't leave the house without my medications...I feel so mixed up. Any thoughts would help. Thanks

  1. Hi amyl,
    I've had times too when I found it hard to "validate" my own experiences not just with migraine but other conditions causing severe pain. You're being respectful I think and noticing that in some ways your experience is different, that being able to "function" seems at odds with other people's stories. I appreciate that kind of sincerity and empathy. But look at the rest of your story: the years of struggle, the long run of an intractable set of migraine/headache and all your efforts with headache specialists... So for what it's worth, I think you do belong (hope its helpful to hear someone else say so).

    I'm super happy for you that you're not in an endless debilitating migraine cycle and have waves of differing intensity. It doesn't take anything away from the realities of what you've been through and the ways you can relate. I think the value in sharing is discovering the nuances of migraine symptoms, triggers and different ways to cope. We're all on a journey trying to pinpoint how migraines start/stop and how to live with/thru them!

    But i get the wondering... There's a cartoon image I've seen online (not here) that derides people posting online during a migraine as if its not possible to ever do so. It makes me feel pretty awful questioning myself. Sure, during worst-of-the-worst migraine there's no way I could be online, but sometimes the need for connection trumps the pain temporarily. So that cartoon is upsetting to me bc it overlooks the desperation and unnecessarily questions "legitimacy".. But there's an online joke about everything feeling "like a migraine" so the cartoon might just be trying to fight against that cavalier insensitivity. Not sure. I guess my point is that sometimes things get really confusing for me too.

    Hope my thoughts are helpful in some way. I'm hurting tonight so if it was too rambling I'm sorry.

    1. Thank you 😀 I'm alone and scared. Ironically the chronic headaches never stop; I have emergency sumatriptan injections and other meds to keep me out of ERs and urgent care centers. Why I can't just be okay with not being laid up, and yet know that my head is hurting all the time (it is working its way up as I type), whether is it a 2 or 10 and I haven't gone a week without having to take some med to knock it down (I am so cautious because of rebound)I don't know. I have been where you are; have had the ER visits; I guess I just needed someone else to tell me it is okay and to be able to talk to people who understand.

      1. Amyl,

        It's totally ok! Living with chronic pain is just awful, no matter your disability level at the moment. I have lived through different levels of migraine, from chronic to episodic. Sometimes I feel bad for when I'm unhappy about a migraine and it's no where near my worst one, but honestly what ever the level of disability it's awful. I'm sorry you have to live through the daily pain, and hoping you find something that helps. It's ok to not be ok with feeling badly every day. I don't know if this is any help, but from one migraineur to another, I just want to say what you are feeling is valid and please vent as much as you need.


        1. I don't care if it's tinnitus ringing so badly you think you're auditioning for Quasimodo; vertigo so insane you should be on a ship's deck; period pain at age 60 so intense I can't breathe, can't sit up and I'm crying; back pain so cutting that you bend double like a question-mark; or migraine effects so disabling you can't complete a thought in 30 minutes... It's all disabling, and it's all stealing our lives and our joy.
          We're the only ones who can help each other out because we have a glimpse of the diversity and the depth of this condition, even if we don't fully understand it. And there's usually someone around for a sympathetic shoulder or ear, a hug when we need one.
          I think it's a minor miracle a) the site was created in the first place and b) we all managed to find it.

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