SUNCT Headache

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    What was the defining moment or incident that made you seek treatment for migraine?

    Living with a health condition can be frustrating and unpredictable even on the "good" days. When the "bad" days become more frequent or even unbearable and you struggle to get out of bed, are forced to cancel plans, or miss work you might decide that you need a little extra support through treatment.

    What made you seek treatment, either for the first time or after a length of time without treatment? Share your defining migraine moment in the comments below.

    #Migraine #Fibromyalgia #ChronicPain #ChronicDailyHeadache #ClusterHeadache #SUNCTHeadache #ChronicVestibularMigraine #ChronicIllness #Endometriosis #mightywithmigraine

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    What has your experience with treatment for migraine been like?

    Migraine treatment types and experiences can vary from person to person. You may have tried (or are currently on) acute treatments like triptans, nerve blocks, or acetaminophen. Or perhaps you are currently trying (or have tried) a type of preventive treatment like CGRPs or physical therapy (like prescribed neck/shoulder exercises).

    What treatment experiences did you have that did not meet your expectations? In what ways, if any, have you been pleasantly surprised? Share in the comments below. ⬇️

    #Migraine #Fibromyalgia #ChronicPain #ClusterHeadache #SUNCTHeadache #ChronicVestibularMigraine #ChronicIllness #Endometriosis

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    How do you relieve stress while also managing your migraine symptoms?

    Balancing self-care and daily responsibilities while managing the symptoms of migraine can be challenging, especially when you’re experiencing stress.

    How do you relieve stress as it relates to your condition? Let’s share and help one another in the comments below.

    #Migraine #Fibromyalgia #ChronicPain #ClusterHeadache #SUNCTHeadache #ChronicVestibularMigraine #ChronicIllness #Endometriosis #mightywithmigraine

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    Have you ever met anyone who lives with the same rare disease as you? What was it like?

    Living with rare disease can not only feel rare in the sense of statistics, but also in building community and finding someone to share experiences with. Finding others that relate can be hard. Have you ever met someone that shares your same rare condition? If so, what was that like for you?

    Would love to hear your experience! Feel free to share in the comments below.

    P.S. If you need a resource to help you connect with others with rare disease, you can check out the nonprofit NORD, a great resource for rare disease patients:

    #RareDisease #ChronicPain #ChronicIllness #GeneticDisorders #MentalHealth #Disability #Migraine #SUNCTHeadache #StiffPersonSyndrome #MedicalZebra #EhlersDanlosSyndrome #Spoonie #MarfanSyndrome #EmptyNoseSyndrome #morgellons #Syringomyelia #Neurosarcoidosis #BehcetsDisease #FunctionalNeurologicalDisorder

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    What information or input is important to you when starting a new migraine medication?

    Starting a new medication is a big deal, so where do you start? Whose opinion or experience do you value most?

    Maybe you receive information from your doctor about your treatment options and usually defer to your doctor’s recommendation. Perhaps you prefer to talk to your loved ones about your options, or maybe you research the experiences of other patients who have already tried the medication you are considering.

    Whose input is most valuable to you? What information matters most? Share with us in the comments below.

    #CheckInWithMe #Migraine #Fibromyalgia #ChronicPain #ClusterHeadache #SUNCTHeadache #ChronicVestibularMigraine #ChronicIllness #Endometriosis #mightywithmigraine

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    How long did it take you to get diagnosed with your rare disease?

    Living with a rare disease can mean years (and maybe even decades) of hospital visits, appointments, treatments, and procedures before receiving a proper diagnosis.

    How long did it take for you to get your rare disease diagnosis? What has that process been like for you?

    #RareDisease #ChronicPain #ChronicIllness #GeneticDisorders #MentalHealth #Disability #Migraine #SUNCTHeadache #StiffPersonSyndrome
    #MedicalZebra #EhlersDanlosSyndrome #Spoonie #MarfanSyndrome #EmptyNoseSyndrome
    #morgellons #Syringomyelia #Neurosarcoidosis #Sarcoidosis #BehcetsDisease #FunctionalNeurologicalDisorder

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    Tell me a happy story. Here’s mine.

    We talk a lot about strained relationships on The Mighty and trust me when I say that I have a few of those myself. But today I want to tell you a happy story, about my partner Mike who truly props me up through life so I can have some quality of it.

    Mike and I met when we were kids. Before I was sick, before I was fragile. We stayed good friends until high school when we started dating (again, pre-chronic illness). Eventually we broke up and I can’t even remember why, and then we reunited 11 years ago (post-chronic illness) and have been together ever since. Here are a few things he does for me:

    📝 He leaves me small (or big) notes in secret places. I had an absolutely terrible week last week and he hid a piece of paper in my laptop that reminded me I was doing a good job.

    🤗 He never, ever pressures me to go out, to run errands, to go to social gatherings. He trusts me when I say I can’t, and is always grateful when I do.

    ⚔️ He never weaponizes my health against me. Do we get frustrated by my limitations? Oh yes. Do we fight about certain aspects of this reality we’re living in? 100%. But he never uses it as a reason to tear me down. He doesn’t place blame.

    I tell you this happy story because I like to hear them when I’m flooded by darkness. It’s important to know that not all relationships are bad. And I also want to acknowledge that a lot of strength (and the reason why I’m even able to work at The Mighty) is because of people in my life who accept me and help me and cheer me on.

    If nothing else, just know that you’re worthy of love. Your health struggles do not make you inherently unlovable. You are loved, you are loved, you are loved.

    #CheckInWithMe #ChronicIllness #ChronicPain #Migraine #Disability #RareDisease #Spoonie #SUNCTHeadache

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    What have you been watching, reading, or listening to lately to distract you from your pain?

    Have you been watching any interesting shows or movies, reading any great books/articles or listening to any uplifting songs/podcasts that's helped distract you from your pain lately?

    Would love to know what everyone's been up to!

    Feel free to share what's been helpful for you in the comments below 👇

    #DistractMe #CheckInWithMe #MightyMusic #Migraine #Fibromyalgia #ChronicPain #ClusterHeadache #SUNCTHeadache #ChronicVestibularMigraine #ChronicIllness #Endometriosis #mightywithmigraine

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    How has migraine affected your personal relationships?

    Some of our Mighty members have shared that migraine has had a negative impact on their personal relationships, especially their bonds with family, friends, and romantic partners.

    Migraine symptoms can lead to canceling plans or avoidance of making future plans/setting larger goals, which can lead to misunderstandings and frustrations. On the positive side, migraine can also build empathy and provide a space for deeper, more “real” conversation.

    No matter if it’s been negative or positive (or both!), how has migraine affected your personal relationships?

    #Migraine #Fibromyalgia #ChronicPain #ClusterHeadache #SUNCTHeadache #ChronicVestibularMigraine #ChronicIllness #Endometriosis #mightywithmigraine