SUNCT Headache

Join The Conversation on
SUNCT Headache
817 people
0 stories
31 posts
  • About SUNCT Headache
  • Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
    Newsletters
    Don’t miss what’s new on The Mighty. We have over 20 email newsletters to choose from, from mental health to chronic illness.
    Browse and Subscribe
    What's New in SUNCT Headache
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Post
    See full photo

    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

    Post
    See full photo

    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

    Post
    See full photo

    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

    Post
    See full photo

    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

    Post
    See full photo

    Which of the following is most likely to trigger a migraine?

    Choose your most common trigger from the list below or add your own in the comments:

    💡 Bright, fluorescent light
    👃 Strong smells or odors (including food smells, perfume)
    🍕 Food
    📣 Loud noises
    ⛈️ Weather (e.g., humidity, precipitation)

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

    Post
    See full photo

    How much of your day do you spend thinking about your health?

    A. It never stops
    B. Most of the time
    C. Only during bad attacks or high-symptom days
    D. I’m at a point where it doesn’t occupy too much of my headspace
    E. Migraine, what?

    Let me know in the comments below ⬇️

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

    Post
    See full photo

    Has anyone ever minimized your experience with your illness, just because they thought it was "cool" or "quirky?"

    For instance, as someone with Ehlers-Danlos Syndrome, I get asked to perform party tricks that demonstrate my hypermobility. Little do the people asking me to perform those tricks know that EDS also comes with a bevy of co-morbidities, immense pain, fatigue, and countless hours of physical therapy and doctors’ appointments.

    So, Mighty community, please share in what ways people have diminished your actual experience with your disease or illness, just because they made assumptions based on your appearance, the party tricks you can do, or a “weird” or “inspirational” story they read online about someone else with your condition.

    Your answer may be used in a Mighty story!

    #RareDisease #CheckInWithMe #ChronicIllness #ChronicPain #Disability #MentalHealth #TheBendyBunch #EhlersDanlosSyndrome #CysticFibrosis #SpinaBifida #Cancer #KlinefelterSyndrome #AcousticNeuroma #Hemophilia #SUNCTHeadache

    Question
    See full photo

    How are you honoring Rare Disease Day?

    Rare Disease Day is a global campaign which aims toward equity in social opportunity, health care, and access to diagnosis and therapies for people living with rare disease.

    In honor of Rare Disease Day, we’re here to spread some resources and support to anyone living or who loves someone with a rare disease.

    📚 About Rare Disease Day: www.rarediseaseday.org

    From The Mighty community:

    🦓 Rare Weekly Newsletter: bit.ly/3ATKqgm

    📍 Living With Rare Disease Group: bit.ly/3snIgTu

    From our partner:

    🤝 National Organization for Rare Disorders (NORD): rarediseases.org

    #RareDisease #RareDiseaseDay #ChronicIllness #ChronicPain #MightyTogether #EhlersDanlosSyndrome #CysticFibrosis #SpinaBifida #Cancer #KlinefelterSyndrome #AcousticNeuroma #Hemophilia #SUNCTHeadache #SickleCellDisease

    Post
    See full photo

    What frustrates you most about living with a rare disease?

    It's a no-brainer that living with a rare condition can be super challenging and frustrating at that. What about your rare condition do you find most frustrating? What do you wish people understood more about living with a rare disease?

    Let me know in the comments below 💌

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

    Question
    See full photo

    How do you know it’s time to stop or switch your migraine medication?

    Deciding to start, stop, or switch a new medication is a big decision. We know many factors can influence a decision and some of these can be out of your control.

    Maybe you haven’t found any symptom relief, or the side effects from your current medication are impossible to manage. Perhaps your doctor is not seeing the results they expected, or your insurance decided not to cover the medication you were hoping to try.

    What’s been your experience?

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