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The Significance of Migraine & Headache Disorders

How has living with migraine or a headache disorder impacted you over the past 10 years? What should others who are new to migraine or are looking for support know about living with migraine or a headache disorder?

  1. Had my first migraine in a long time last night. Silence and darkness are my only relief.

    1. I never thought of myself as chronically ill until
      I just read your post. I am chronically ill. You just lifted a weight off my shoulders when you said 'no one plans on becoming chronically ill"

      Thank you so much as I have tears running down my face. Finally some kind of answer

    2. Thank you for your kind words. I didn't mean to make you cry even tears of relief! I can tell you when I accepted being chronically ill (doesn't mean giving up) I felt a bit of relief as well. We're in good company!!
      Wishing you a low pain day, Nancy Harris Bonk, Patient Advocate/Moderator

  2. I tend to wake up with migraines and it is often unexpected and can really disrupt my day. I do find that maintaining healthy eating practices (especially limiting sugar) and exercising keeps them limited in number!

    1. … I’m right there with you on the insurance train. I’m currently working on a procedure denial (appeal) which lists the definition of migraine! Omg … Like I don’t know what a migraine is! Wish I could write the appeal based on the author’s grammar and assumptions … I’d win, hands down.
      Forgive my rant, ms ajar2112 … I hope your pain level is declining as I type ❣️

    2. Ugh- that is SO frustrating. So sorry you are having to deal with that insurance mess. It really is ridiculous that we have to fight for coverage of a condition that is experienced by so many millions of people. And what a challenge to make those of us who are living with a complex neurological condition jump through endless paperwork hoops to defend our need for coverage! With you! Warmly- Holly team.

  3. Keeping track of triggers and symptoms through an app (or however else works for you) can help get a better handle on your migraines.

    1. Mine have lessened over the years as I've cleaned up my diet and cleaning & beauty products but as I am nearing menopause seems hormones like to trigger them more often.

      1. I also gave up drinking soda and highly processed foods and the like - not entirely but eating them as a rare treat. I carefully monitor my amount of caffeine, and work hard to make sure I keep well hydrated, given our brain is a big water filled organ. Those steps helped me a lot too! I am a chronic migraine sufferer who started having "just" hormonal migraines when I was in 7th grade. Back in the early 70s, my small town MD either didn't know pre-teens could have migraines, or just preferred using my weight to blame for EVERYTHING that was wrong for me. It wasn't until I went to college that they were diagnosed correctly and I found out what a quack he was. They got better with birth control pills, but definitely got whacky when I became perimenopausal. What I didn't realize at the time, however, that all the other strange symptoms I was experiencing with my migraines, and the increasing frequency, duration, and lingering exhaustion weren't due to hormonal changes. My body was trying to alert me that I had a completely different type of migraine now: chronic migraine. By blaming my wildly fluctuating hormones - a completely normal thing to do!!! - I delayed getting to a neurologist who could have started treating me for this in it's earlier stages. I'm thankful for having an outstanding primary care doctor who referred me to an excellent neurologist. They communicate and work as a team to make sure I am getting the best care I can. I'm not saying that your hormonal changes and impacts are leading you to chronic migraine, but suggesting that you carefully consider monitoring everything you are feeling during the changes your body is telling you. I didn't and wish I had. And I'm wishing you the very best in your journey!

      2. It's true - our hormones can have a lot to do with worsening our migraine disease. That sounds like a frustrating journey you have had to go through. I'm so glad you are on a good path now with a neurologist and a correct diagnosis.
        Peggy ( team)

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