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Looking for Support and Community


I have been diagnosed with chronic migraines for about 8 years now, and have started a new (and technically my first real) treatment plan just this last year. I am currently a college student, and I honestly thought I would have already figured out my migraines at this point. But, as a lot of you may know, life isn't always that simple. I am seeing a bit of progress in some areas with my new treatment, but I'm also seeing some new issues arise. One of them is the emotional baggage that comes with chronic migraines. I have spent years avoiding that side, but it's finally catching up to me and it's impossible to ignore. During the past 2 years, I really struggled with anger and frustration because I didn't understand my health and I felt way too dependent on my family and friends. I'm finally learning how to accept my migraines, but that still doesn't help the feelings of isolation and guilt I sometime have. Sometimes I get mad not necessarily at the pain, but just at the inconvenience. I'm the kind of person who likes to be busy, to be independent--which makes just the idea of migraines an absolute nightmare. And being a college student, it sometimes messes me mentally. Just the fact that I have to live very differently than my friends, and not being able to go on spontaneous trips, or staying up late or eating whatever I want--it all just sucks sometimes. And I don't personally know anyone else with chronic migraines, so I don't always feel super comfortable talking about this stuff with most of my friends and family.

So, I decided to look into different places to find not just a support group, but I guess a community too. Just a place to talk to other people who can understand my rambling, and a place to hear other's perspectives and advice.

  1. Hi Olivia, your message resonated so much with me. I’ve suffered with migraines since I was 12 (I don’t use the word “suffered” lightly either) and although all the different seasons of your life come with their challenges when coupled with migraines, my college years were particularly tough for all the reasons you explained. It’s supposed to be a carefree time of your life and here you are shackled to migraines. I’m so pleased to hear you’ve started a proper treatment plan, I only stumbled into a proper one in my 30’s and although it hasn’t totally set me free, it’s very empowering. Other things I can highly recommend are: knowing your triggers and as far as possible, avoiding them. I know student life clashes hard with migraine triggers (well it did for: caffeine, alcohol, lack of sleep to list a few!) but if you can for the most part take good care of yourself, it does help your mental health. Also, stuff trying to down play migraines. (speaking to myself here, I still need to learn this) people don’t have a figging clue what you’re going through when you have an attack and for so many years (especially when I was young) I downplayed the debilitating agony of it all, and how depressed it made / makes me. But you know what? In a funny way, owning it is also empowering it. Can’t make it to classes for a day and people think you’re bunking? So what. Can’t stay out all night partying? Own it. It’s part of who you are. Sorry, you need your sleep, it’s just a quirky part of your personality. You don’t owe anyone any explanations. Migraines are NOT just bad headaches. Most people will never understand but you will find some who do. So much more to say but don’t want to ramble too much! Happy to give you my email address if you ever need to chat! Take care and sending love from South Africa x

    1. Hi Olivia,

      Thank you for reaching out and sharing your journey with us, and welcome to the discussion forum! This is a wonderful community of people who understand migraine disease and are here to support one another.

      I hope this treatment plan brings you relief. But as you said, sometimes it's not that easy. Many of us need to switch medications and/or doses from time to time, as migraine attack patterns, symptoms and triggers can change. I find this one of the more frustrating parts of living with migraine disease.

      As carrieL mentioned, it's a good idea to try and identify our migraine triggers. One way to do this is by keeping a detailed migraine diary for a few months. You can read more about this here;
      Migraine triggers include, but are not limited to; irregular sleeping patterns, dehydration, skipping meals, certain lights, sounds, and odors, certain foods, alcohol and smoking to name just a few. Managing migraine attack triggers in college is difficult, but possible. Speaking of college, this link information on college and migraine disease I hope you find helpful;

      I look forward to hearing more from you,

      1. Hi carrieL,

        Thank you for sharing your thoughts and tips - they are great!!

        Wishing you a low pain day,

        1. Olivia, your message just brought me to tears. I'm also a chronic migraine sufferer and currently feel all of the same emotions that you wrote about when you posted this. The anger, guilt, frustration and depression is so overwhelming sometimes and as much as people around you are supportive it can feel so very isolating.

          However, this horrible condition we live with means that we have to learn to put ourselves first. I think the sooner we learn to do that and accept that this is the way it is, the sooner we'll be able to find some peace. Surround yourself with love and support. Allow yourself time to rest, cry and feel whatever you need to but remember that it will pass.

          All the best,

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