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30 Things About Katie’s Life With Chronic Migraine

  1. My diagnosis is: Chronic Migraine.
  2. My migraine attack frequency is: Daily. I have some form of a headache at all times. A typical day starts at a pain level 3 and increases as the day goes on, with nighttime being the worst. And that’s a good day! I can have stretches of time when the pain is unbearable, a constant 8 or 9. Days, even weeks on end where I get no relief.
  3. I was diagnosed in: I will never forget the day my headache specialist told me that my condition was chronic. That was in 2011, I was 30 years old. I couldn’t imagine living like this every day for the rest of my life.
  4. My comorbid conditions include: I have gastrointestinal issues from the large quantities of meds I take. I have a few other medical issues that are not related to the Migraines that are a pain to coordinate with my main focus of Migraines.
  5. I take 9 medications/supplements each day for prevention and I have 5 medications/supplements to treat an acute attack. Just to be clear, I never take all 5 abortives at the same time. My doctor is worried that certain meds may not work effectively in the long term if I only take one. So our plan of attack is to rotate the abortives.
  6. My first migraine attack was: I was five. I was getting ready to go to my best friend’s house for her birthday. I got a visual aura. I remember leaning over my parent’s bed in severe pain. All I could do was cry, scream really. After about four hours, I vomited and the pain stopped. I missed the birthday party…and so many more over the years.
  7. My most disabling migraine symptoms are: Having a visual aura changes my whole world. I just know the hell that I’m about to endure.
  8. My strangest migraine symptoms are: I crave salt. All I want to eat are French Fries.
  9. My biggest migraine triggers are: Breathing. Now that my Migraines are chronic (meaning at least 15 Migraine days a month or more), it is very difficult to pinpoint one trigger. I also believe that multiple triggers accumulate and finally my brain can’t take it and fires out the pain. It could’ve been those 2 Cokes I had yesterday or the thunderstorm this morning or the stress of paperwork for disability. Most likely it was all of the above.
  10. I know a migraine attack is coming on when: I have a visual aura. However, those are less common now since the Migraines are Chronic. I also know when the Migraine is trying to get my attention because of the increased pain and the fact that I struggle with basic tasks.
  11. The most frustrating part about having a migraine attack is: I lose my ability to think clearly. I just want someone to tell me what to do or which medication to take. It’s hard to put together a coherent sentence or thought.
  12. During a migraine attack, I worry most about: I worry about what I’m missing or how to rearrange my schedule.
  13. When I think about migraine between attacks, I think: enjoy feeling semi-normal now because it can change very quickly.
  14. When I tell someone I have migraine, the response is usually: People either tell me that they have Migraines or someone close to them has them.
  15. When someone tells me they have migraine, I think: What can I do to help them?
  16. When I see commercials about migraine treatments, I think: It’s annoying, but honestly I’m glad that there are treatments out there that help people. I just haven’t found my magic bullet yet.
  17. My best coping tools are: I use essential oils. I stretch my body out with yoga and I work on meditation. These are my daily go-to moves to handle the pain.
  18. I find comfort in: My bed. Or staying with a friend or at my parent’s house during a particularly long stretch of attacks. They all know to just let me sleep and it’s comforting to know they are there.
  19. I get angry when people say: “I’m sorry.” It’s a nice sentiment, but I don’t know how to respond. I’m sorry too! This sucks!
  20. I like it when people say: “If you can’t make it, I understand.” That means they understand my illness and I don’t have to feel guilty about not being able to participate.
  21. Something kind someone can do for me during a migraine attack is: Bring me French Fries and a Coke!!
  22. The best thing(s) a doctor has ever said to me about migraine is: As I was hospitalized for a new, experimental treatment, a doctor told me that if I get any relief from this I need to remember that triggers are still triggers. There is no cure for Migraine. Don’t kid yourself that you can now do whatever you want. Continue to take care of your Migraine body and hopefully the treatment will last longer and help more.
  23. The hardest thing to accept about having migraine is: My life plan had to change to fit within my limitations. I went through the 5 stages of grief, it sucked. But now I can see a happy life even with the pain in my brain.
  24. Migraine has taught me: Be kind. You never know what demon someone else is dealing with that you can’t see on the surface.
  25. The quotation, motto, mantra, or scripture that gets me through an attack is: My personal mission statement is to “Live a Fulfilled Life While Managing Chronic Migraines.”
  26. If I could go back to the early days of my diagnosis, I would tell myself: Don’t place so much hope on any new medication or treatment option. It would’ve saved me so much heartache when it didn’t work for me.
  27. The people who support me most are: My boyfriend of five years deserves a medal. My parents and brother have been there since the first attack at age five and they take care of me now too. I also have an amazing group of friends who check in on me.
  28. The thing I most wish people understood about migraine is: This is a neurological disease, not an excuse. I wish everyone experienced at least one Migraine in their life. Then maybe there wouldn’t be such a stigma.
  29. Migraine and Headache Awareness Month is important to me because: This is my life now. I not only have to manage my own illness, I’ve become committed to helping others who suffer too.
  30. One more thing I’d like to say about life with migraine is: Be patient. It takes longer than a week or two to figure out what treatments are going to help you. There is currently no cure for Chronic Migraines. The best you can hope for is to find ways to cope and manage your illness.

The Migraine and Headache Awareness Month meme contains 30 questions for migraineurs about what it’s like to live with migraine. Throughout the month, we’ll be sharing Migraine.com writers’ responses. To answer the questions yourself, visit the meme’s home on The Daily Headache. Your response will be published with a URL that you can share (though you can publish anonymously if you prefer).

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Liz Flynn
    3 years ago

    Potato chips for me but I only allow myself to indulge occasionally after I begin to emerge from a full body migraine. One of the most frustrating effects of my chronic migraines is that it has effected my level of physical fitness.

  • Katie M. Golden moderator author
    3 years ago

    Liz,
    I’m glad I’m not the only one who craves salt!
    And I understand how frustrating it is to not be able to physically work out like you used to. I believe that even gentle stretching helps to get the blood flowing in your body after being stuck in bed with an attack. Any movement is better than none!
    -Katie

  • JanetH
    4 years ago

    Lisa, words cannot express how sorry I am for the loss of your son. Thank you for sharing his story.

  • Dani Kelley
    4 years ago

    Your brother referred me to this site and your writing in particular. I’ve had chronic migraines most of my life, worsening since adulthood. They’re not as severe as yours — I do have a handful of days out of a month with no headache at all, but also frequently miss work because of them. I’ve noticed also that soda or coffee seems to help, at least a tiny bit (and usually when accompanied by Fioricet!). What you wrote about your triggers struck home for me so hard — the last time I was able to go to a neurologist, I took a list of my triggers and medication reactions, and his eyebrows just raised the more he read. “You’re really quite sensitive, aren’t you?” Right now, I use a mix of Flexeril every evening (it also helps with whatever rheumatoid disease I have, we’re thinking fibromyalgia) and Fioricet when I get an aura or at the onset. I do use essential oils, and an oil mix called Headache Soother from Badger Balm. Wishing you all the best, and I look forward to reading more of your writing!

  • JanetH
    4 years ago

    Dani, I am going to try the Headache Soother next time I place an order from Amazon! Have you tried any of the Aveda products? I have their Blue Oil, and that is somewhat helpful. Also, I like a warm bath with epsom salts, preferably scented with eucalyptus or lavender.

  • John
    4 years ago

    Thanks Katie,
    When early in your post you mentioned French fries, I was thinking, “Add a Coke to that, add a Coke!”, then later I was amazed to see you add the Coke. Back in the day (20+ years) when my now chronic migraines were “just headaches” I was drawn like a zombie to the local Frosty to get the fries and Coke cure. Doesn’t work now as an abortive but I hear what you’re saying. There’s got to be a link there that some bright-eyed researcher can take advantage of.

  • JanetH
    4 years ago

    I never used to crave the salt in the prodrome, but now, OMG. Not necessarily fries. Chips, saltine crackers, popcorn. It’s all good……

  • 12cgrca
    4 years ago

    Dear Katie,
    Did no one ever tell you that most migraines are connected to the stomach? COKE???? Are you kidding? I didn’t think anybody drank that poison anymore. Sugar is one of the biggest culprits in migraines. Do some research on alkaline and acidic conditions. All flours and everything made with flour acts like sugar in your body. If you combine it with actually sugar, your getting a double dose of triggers. I can’t even drink water during my three day marathon migraines of vomiting and pain let alone a poisonous substance like coke. I’m afraid the pills aren’t helping your gut either. At least give up the sugar and flour. It may surprise you!

  • JanetH
    4 years ago

    Just a comment: one man’s cure is another man’s poison. I have friends who swear by a regular Coke at the onset of a migraine. One friend said she had a friend who took a HOT bath while drinking a COLD Coke, and swore by that. I would of course always suggest a more healthful diet, limiting sugar and processed food as much as one can.

  • Gina
    4 years ago

    Thank you Katie for sharing your struggle with chronic migraine. I have the same type and got my first migraine at age 2. That was 64 years ago! The migraines have gotten more frequent and have never gone away, even through 3 pregnancies, multiple treatments, and menopause. I do rely on Zomig and pain medication. I was struck by your craving for salt, as that happens to me too, but I never thought it was connected. I am lucky, as my husband of 46 years is very understanding! I have mainly toughed it out through the attacks, although that is not an easy way to live. I don’t know now if I would relate to a pain-free life! The one thing left for me to try, when it is legal in my state, is medical marijuana, without the buzz and sleepiness. I have been riding and training horses for 35 years, and for some reason, being on them can ease my migraines.Barometric changes are my worse trigger, followed by bright lights, strong noises and smells,driving,red wine and chocolate, and crying. Best of luck to you on your journey and thanks again for your insightful post!

  • Michelle Rudder
    4 years ago

    Thank you so much for sharing this. I have been chronic for 15 years now. I went chronic at peri-meno. They told me the migraines will stop at meno. They haven’t. They did stop for my mom’s friend, but haven’t for my aunt who is now 70. I suspect I will take after my aunt. I had a bad string last week. They were accompanied by hives; I have also developed chronic hives so my migraine elimination diet as been expanded to include total histamine elimination now and I can no longer take Codeine; not that it helped much anyway.

    I have learned to live the best that I can with this. I am happy that I can still play my piano most days, and that I can ‘work from home’ when they affect my ability to drive.

  • DarkAngel6
    4 years ago

    Hey, Katie! You remind me of me in a way. Although, my chronic migraines started when I was 8 years of age and I rarely get an aura, they are still quite similar. Now, just like you, I get a mild migraine just about everyday, which always has the potential to get worse and I can’t think straight a lot of the time. Brain fog is a major thing and it embarrasses me because I’ll stutter and use certain words over and over again because my mind can’t come up with a synonym, which makes it look like my vocabulary range is very slim when in reality it isn’t and never has been. Over the years I’ve been unable to find any medicine to really help me. An abortive that helps me is Relpax and another that helps in every area is illegal. Yes, I’ve found marijuana to be very helpful for my daily headaches along with every symptom that I get. Please don’t judge me too harshly for that haha. I’m happy you have found some things to tone down what you go through everyday though and that you are able to look at things more positively. Being 19 and just beginning to start my life alone I’m starting to struggle and barely even know where to start. No one in my family has migraines so most of them don’t understand, but I can also thank my boyfriend of 3 years now, just as you can yours, for being the one person who understands what I go through the most and helps me. I hope things continue to work out well for you and your migraines. Thanks for sharing your story because it helps others more than you think! 🙂

  • Lisa Frei
    4 years ago

    My 17 year old son had chronic migraines for 1 and 1/2 years. I say had, as he took his life in Feb. of 2014. He could not stand the pain any longer. 3 months before his death and during one of his many infusions, I told him that everything that happens in our lives teaches us something. I asked what he thought his migraines had taught him. I find it interesting that in your article you use two of his terms. He said they had taught him patient (to wait for meds or new protocols to work) tolerance ( to be tolerant of the pain and folks who did not understand how debilitating these migraines were.) Finally empathy (because no one can understand another persons depth of pain and he felt most people were trying to do the best they could. That he would always have empathy for people who were suffering) My son had always strived to his best at school and all his other activities. He was falling woefully behind. He really had wanted to become an Eagle Scout. He thought these three word would be a great addition to the scout laws and was planning on using them in his speech and to talk about the migraines. We greatly miss him. The only peace I can find in this is that he no longer suffers from what I watched to be an incredible amount of pain.

  • Tammy Rome
    4 years ago

    I just read your comment while researching for my next article. Your son’s comments about patience, tolerance, and empathy as part of the Scout law brought me to tears. My son is an Eagle Scout and we are planning his Court of Honor now. With your permission, I would like to ask my son (also a Migraineur) to say a few words in his memory and share his thoughts about these three words.

    Blessings

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