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4 Things Intractable Migraine Has Taught Me

I have had chronic migraine for twelve years. Most of those years were spent being intractable. Intractable migraine, or status migrainosus, is a debilitating migraine that has lasted for more than 72 hours (three days). Being in pain almost every single day for so many years is emotionally and physically draining.

My normal includes some level of discomfort, disability and impairment. Life is completely different for me and how I approach it differs depending on how I feel from day to day. Through navigating my new normal I have learned several life-changing lessons that have shifted how I see myself.

I am not my migraine

For many, many years I identified myself through the eyes of my disease. I felt less than, weak, invalidated and unimportant all of the time. My pain and associated symptoms dictated what I saw myself as, which was someone who was incapable of being or doing much of anything. Migraine has a way of making you interpret the disease as a manifestation of your personality. The external and internal stigma surrounding migraine also played a role in how I saw myself.

It wasn’t until I had gone through an extremely dark and challenging time that I began to realize that who I am was separate and apart from my disease. My life is not a reflection of having migraine. I just happened to be born with a migraine brain. The core of who I am has never changed or been diminished. I can achieve whatever I choose to within my new normal. I have migraine. It doesn’t have me. Changing my perspective on how I see myself and migraine has made coping with it that much easier.

It’s okay not being okay

As a wife and a mother living with chronic migraine, I always pushed myself beyond my limits to prove that I am just as present and capable as any normal, healthy wife and mother. Guilt would eat me up alive whenever I spent days in bed due to severe attacks. Trips to urgent care or spending days in the hospital for infusions made me feel like a burden. I felt awful most of the time!

So, whenever I could I would push through the pain just to show up for my husband and kids because so much time was lost to migraine. I would suffer through preparing meals, school activities, field trips, girl scout meetings, basketball games and musical concerts because that’s what any mom would do. My husband would always tell me that it’s okay not being able to do everything. That the kids are happy, healthy and loved and he is perfectly happy with the woman I am, migraine and all. Eventually, everything he told me started to sink in and I realized that if he is okay with me not being okay then so should I. The world is not going to fall apart because I am sick and most importantly, my family will never think less of me because of it.

Cherish the small things

Having chronic intractable migraine means spending a lot of time confined to my house. I don’t have much of a social life and none of my extended family live near me. So it’s just the five of us – me, my husband and three children. They have only known me to have migraine and have seen it take over my life. My new normal had to become theirs as well. So we all adjusted. Thankfully, my husband has always been the kind of person who liked to do something special because it’s Tuesday. He never waits for holidays or special occasions to celebrate us.

And since so much of these past twelve years have been spent at home, we made the best of it. Every week we have family night where we watch a movie together. We’ll have game nights and impromptu slumber parties in the family room. My sons will help me cook dinner and we will be laughing the entire time. Or the kids will just lay in bed with me and snuggle on my lap when I’m feeling sick (mind you they are now 20, 18 and 17 and still do these things!). I love those moments and I wouldn’t have had them without intractable migraine.

Be your own advocate

For a long time I would just go along with whatever the doctor told me and not question anything. Even if something didn’t sit right with me or I wasn’t sure about a treatment, I kept quiet. In my mind, the doctor knew more and what was best. As migraine started to become more aggressive and difficult to treat I had to begin listening to my body. That also meant learning how to vocalize what I thought my treatment plan should look like.

Oftentimes, we forget that the relationship we have with our health care professional is a partnership. We have to work together in order to achieve the same goal, which is having less pain and a better quality of life. What I embraced is my role in my health and how I wanted to show up for myself. It can be scary and intimidating, but it is more powerful, validating and rewarding being the leader of my own cause.

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

View Comments (12)
  • Turtledove
    9 hours ago

    I suffered intractable migraine for 45 years. With a husband and 4 kids. Last April I was in hospital for 5 days. I was encouraged by a pain RN to vape Cannabis. I had been trying a sublingual oil with a little success. I’m in my 10th month of great relief!!! I only use Imitrex 1or 2 times a month. I was using it 20 or more times. I use the dosage of THC/CBD ratio of 1:18. So I get mainly the pain killer. I only have to vape 1or 2 times You know in 5 mins if you need a 2nd or 3 or ? Vape And it works! No side effects. My migraine daughter is my coach. I hope your state allows this effective miracle solution.

  • Kayeff
    12 hours ago

    As much as I wish I could take positives from this article, there’s too much I disagree with. I’ve had a constant vestibular migraine for 2 years, and have spent most of that time bedbound. Medications increased my symptoms rather than minimise them, and all lifestyle changes have brought no relief at all. I feel hopeless. I have no control over this condition. I’m 30 years old and life just passes me by.

    “I can achieve whatever i choose to within my new normal” – i cannot relate to that at all. I can’t do a single thing in life that I want. I can’t even read a book, or sit up most days. I don’t want to accept having to spend the rest of my life bedbound, it’s simply not worth living, I will not accept this as my ‘new normal’. I will keep trying whatever treatment I can until something works, because there must be something that makes life livable. There has to be.

  • Dn2292
    22 hours ago

    I have been sick with 24/7 chronic severe migraines for a very very long time but I have got to give props to you women!! I could not imagine going through a migraine even just a few times a month WITH KIDS!! The noise, the stimulation! HOLY SMOKES I know mom’s in general have super powers but you moms and dads with migraines you are WAY more powerful than me! I just had to give credit where credit is due. I mean yes to the avearage person we blow their minds what we go through but what I just expressed, I bow to you moms and dads, My hats off to you!

  • jennyren
    1 day ago

    What a wonderfully positive and uplifting story. Thank you so much for sharing this. You are an inspiration. I have had intractable migraine for 2 years and with 2 kids, being a single mum and working full time, it can be tough. But you have shown that it is possible to live a fulfilling life and that our illness does not need to define who we are. Thank you, I really needed that lift today 🙂

  • CrystalB
    1 day ago

    Hi there,

    Right now I am going through a rough time. I have been sick for 7 years. I have an intractable migraine with a prolonged aura. I have chronic fatigue syndrome, interstitial cystitis… spots in my field of vision which I feel is totally different from the aura. Constant pain.Etc. But I would like to say some else on here said they take antihistamines and it helps so do I. if I don’t I get really sick. I still feel like I have the flu everyday, but this helps tremendously.
    Anyways it is nice to read about a parent like me. I was just thinking how weird it was that my kids have really known nothing but this. I mean they were 5 and 7 when I got sick. It is so sucky. I don’t know what else to say. But I too have an amazing husband who will bend over backwards for me. It is pretty awesome. He tells me to just take it easy a lot but I feel so guilty.
    And I was at the eye doctor the other day and he was going through everything (like he is my physician) asking if I eat right, know my triggers, exercise…blah blah blah. Duh like I haven’t heard it, done it…doing it. I don’t drink alcohol, I don’t drink soda (once in a while) I do not drink caffeine. However, he insisted I take a shot of coffee during my migraines.
    Should I go back and explain my situation to you again, Doctor?
    So I told him about rebound headaches…he almost rolled his eyes.
    My dad taught me always figure things out for yourself. Do not rely on the doctors. I trust the doctors to a point, but if my gut tells me otherwise and I also find research I bring it up.

    Thank you for your post and making see there ARE people a lot like me out there.

  • lisacooper
    1 day ago

    Jaime, it sounds like your children have turned out fine. Which is better than a lot of healthy, involved moms can say. We mothers tend to beat ourselves up over things which are beyond our control and usually everything turns out alright in the end.

  • JRain
    1 day ago

    Excellent article. So hard dealing with chronic pain…and so hard for anyone who hasn’t dealt with to understand.
    I just wanted to post what has finally helped me with my own chronic migraines: antihistamines. Specifically if I take an H1 blocker (like benedryl), as well as an H2 blocker (like Pepcid AC), I can generally knock back a migraine – even once I’ve experienced visual “aura” symptoms. Just wanted to mention for all those who have not yet found anything that helps them–might be worth bringing it up with you doctors. Best wishes to all–hope you all find relief.

  • AKkitmara
    1 day ago

    Jamie, you wrote this for me! After 11 years of feeling like I was barely treading water in the ocean of migraine waves! I rarely leave the house. My mind has such a fog that I hardly remember much about things I have done. Thank you for sharing this!

  • SapphireDream
    4 days ago

    I’m currently coming up on year 6 of intractable migraine and have as of this month been classified as completely disabled. I really really really needed to read this. Thank you so much for sharing!

  • Tom Picerno moderator
    3 days ago

    @SapphireDream I’m so sorry to hear that you’ve been battling intractable migraine for 6 years! I am in month 10 of an intractable attack and it’s hard. I’m glad you found a benefit to this story. I wish you the best on you journey and know we are here for you always. Tom ( migraine.com team)

  • Tom Picerno moderator
    6 days ago

    Jamie I too am in a nasty cycle of intractable migraine. I appreciate you laying it out there for others to see and hopefully have a better understanding of how it effects your entire life and lifestyle. Thank you for reminding me that there are times I have with my family that wouldn’t take place without migraine! Never lose that positive attitude!

  • glassmind
    6 days ago

    Thank you for sharing your story so eloquently.

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