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Living with Migraine

The Loneliness. Even worse than the pain?

  • By SuzieR

    Hi. I had a 4 day migraine last week and really needed to come someplace where people would understand the loneliness, the terrible desolation, of being unable to speak, listen, read,communicate in any way with the outside world AT ALL for hours and days on end.

    My husband understands pain, having horrible health problems of his own over the years, but they’ve been in his leg and body. He can talk, read, shout, watch movies, blast music in his ears to distract from that. Go the beach or pool even! But migraines? Locked in my own skull. Alone. Just me and the agony. He says he’d go nuts. Understands the strength of will and mental fortitude it takes to emerge from 4 days of being alone with my mind. And how mean are we to ourselves! How we love to reproach ourselves for past mistakes, perceived failings, what we could have, should have done.

    But he doesn’t really get it. Pressures me to do more than I can handle because he wants easy company to the beach (a friend he’d have to make an effort with -I’m the sociable one), complains our lives are boring, but boring is what my hyper-reactive brain can process, or it whips me.

    4 days of trying desperately not to think, because thinking hurts so damn much, meditating the thoughts away – let them float like clouds across the soft blue of my mind’s sky and drift away,(that’s effective sometimes, you’ll never empty your mind, but you don’t have to pay attention to upsetting thoughts), inventing soppy fantasy stories with me as the heroine, and really wishing I could sit up have a nice cup of tea.

    It only gets this bad once a month or so. I usually catch them them with my triptan, Rizalt. But even then, if the 3-4 day ones are an 8 on the pain scale (10 being shoot me now), the Rizalt only lowers them to a 3. Rarely stops them. Its still a day in a dark room, alone no book, no noise, twice a week. And I have to force myself to take a 2 hour lie down daily. No matter what. Or migraine. Not as fun as it sounds. Boring. Boring. Boring. Just lie there. Alone. No light, book, or noise. Or migraine.

    I take Topamax as a preventative, and my migraines went from untreatable to what they are now. My neuro is satisfied. Says its a good outcome for lighting fast, chronic migraine attacks like mine were. He is right. They were 24/7 horrendous. But it is SO LONELY up here in my head.

    Any one else fed up with themselves for boring company?

    Wow, I really needed to vent! Thanks for reading!
    Hope every one is having a good brain day!

    Suzie

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  • By Meaghan Coneys Moderator

    Hi Suzie,

    Thank you for your post. We are so happy you are a part of our community! Please know we hear you and we understand you here at Migraine.com. Chronic Migraine can be so debilitating and as you mentioned, so isolating, creating boredom at times. It can be challenging for us to feel heard and understood. I am so glad you found a place to vent your thoughts and at times your frustrations. I thought you would find the following articles interesting – https://migraine.com/blog/tips-to-manage-impact-on-marriage/, https://migraine.com/blog/getting-romantic-partner/, https://migraine.com/blog/isolation-of-chronic-migraine/, https://migraine.com/blog/10-secrets-of-successful-chronic/, https://migraine.com/blog/a-list-call-for-creature-comforts/, https://migraine.com/blog/community-responses-what-are-your-go-to-techniques-that-bring-you-comfort/. They discuss ways to communicate with your husband along with coping mechanisms to utilize within a relationship that is impacted by chronic migraine. Additionally, I added a couple articles that provide self care tips for managing symptoms while in the midst of an attack. Perhaps you will find something helpful! Thinking of you today. Hope you are having a lovely day.

    Warmly,

    Meaghan (Migraine.com Team)

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  • By SuzieR

    Thanks Meaghan. Those are some great articles. And just being able to type this stuff out here, get it out of my mind, has helped me a lot already. It’s cathartic to vent in a safe place like this.

    I hope you’re well and enjoying your day,

    Suzie

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