Skip to Accessibility Tools Skip to Content Skip to Footer
Brain headed figure standing in front of a presentation board pointing at implied writing on the board.

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

  • LindaLew01
    4 months ago

    It’s wonderful that you have been able to come to terms with your new normal. Unfortunately the wreck and subsequent brain injury that “flipped the migraine on switch” was the beginning of the end of my marriage. I became a single parent to four young kids who grew up knowing that on my bad days when I had to stay in my “bat cave” they had to entertain themselves quietly. Here I am 20 years later engaged to a wonderful man who knows that we really can’t plan anything so we make the most of my not so bad days. Still learning that my disease does not define me.

  • Joanna Bodner moderator
    4 months ago

    Hi ther @lindalew01, You are so right! Such an important aspect is not letting migraine disease define you! Major kudos to you for even having that mindset to try & come to terms with that concept! Congratulations on the engagement! How exciting…you deserve it! Have you set a date? Thanks for sharing your journey with us.

  • Kyles113
    4 months ago

    Hi, just want to say that I’ve suffered from Chronic Intractable Migraines for 19 years. I have been a single parent of 2 for the last 10 years and the kids are what kept me fighting to find my new normal. It took 17 years to find a treatment that allows me to function at a level I’m happy with. I found it hard here in Australia to find a doctor who would listen and actually help me. I’m unable to maintain full time work but as long as I can function the majority of the time, I’m content. I know how frustrating and demoralising it can be, but never, ever give up. You’re loved, you’re needed and you can live with this condition. It may not be how you imagined your life, but you’re still worth the fight, We’re all Migraine Warriors. Love to all sufferers. Chronic illness is a terrible thing to live with, but it makes us stronger than people realise.

  • Allyson.Ellis moderator
    4 months ago

    Kyles113 I’m glad you were persistent in seeking treatments to help you function in order to be as present as possible as a single parent. Single parenting can be challenging under the most ideal of circumstances, let alone when also battling migraine. Finding a doctor who will listen and take concerns of living with migraine seriously seems to be a universal problem! Many in the community, from all around the globe, struggle with this reality. Thank you for sharing your experience. Wishing you a gentle day. ~Allyson (Migraine.com team)

  • lucylou
    4 months ago

    antihistamines have Never helped me…just make you tired…….your article is spot on! I feel exactly the same way.. I am still searching for a DR. who cares and understands that I am knowledgeable about my migraines (65 yrs…), thank you for stating our true feelings.

  • Donut
    4 months ago

    Jaime, I read your article, thank you so much for putting down what I’ve been going through for years and years since I had a car accident and now I have chronic intractable migraines do to a head injury. I’ve always had migraine whether they were food-related or hormonal related, even hereditary. But the head injury or head trauma has caused the intractable migraine. I’m in the midst of trying to learn how to cope with it and how to keep working a full-time job. I fall into tons of condemnation from what I have to do daily to try to keep the pain at bay. Both my kids I’ve been very supportive and told me not to feel bad about what I have to do to stay pain free. After I had the car accident because of the headaches I took a lot of Advil like everyday cuz that’s all I knew to do. But like you said had to be my own advocate and find out better relief through going to the doctor’s over and over and over again. I’m going back to see my neurologist in a few weeks. I feel now it’s just a matter of keeping the pain under control everyday and when the flare-ups come that I have the medicine to fight through that. And the huge flare-ups seem to be three times a month at least lasting 3 to 4 days. And then in between those days there just low dull headaches. I had always wondered if it was possible that someone could have headaches everyday huge ones small ones middle ones? I was thinking I wanted to reach out to the migraine community to see if it was even possible that this condition could even do that to a person. And obviously your article cleared that up. Thank you and I hope that anyone suffering in dealing with this condition all get relief, and peace and comfort and their daily lives and their mind their soul and their spirit. That’s the biggest thing that we all have to conquer, is to stay positive stay hopeful and stay happy even battling pain and confusion everyday. Thank you Jamie I hope the battle goes better for you from now on. And I appreciate your husband and your kids for there support and their love for you through this…. Donna❤️

  • Jaime Sanders moderator author
    4 months ago

    Hi Donna,
    Thank you for your response. I’m sorry you have been living with intractable migraine for so long. It is indeed a really difficult beast to overcome both physically and mentally. The challenge is trying to stay positive while being in some level of pain on a daily basis with no knowing of when it will end. I appreciate your honesty and candor and I pray that you start to see some better days and have a productive appointment with your neurologist. All the best!
    Jaime

  • Bilqis
    5 months ago

    This article pretty much sums up my life, except for the fact that i have one daughter but its as if i have five lol. Am in so much constant pain and feeling helpless atimes despite being on medication. I don’t work partly because I feel I can’t handle the pressure of working atleast 5 days a week. I do write articles whenever i can. Its frustrating but am positive things will change for the better. We have to keep fighting though and stay strong. love u all.

  • Karen
    5 months ago

    Hi everyone. I’ve read a few times in the comments that people have found relief for their migraines with antihistamines. Can anyone who has found success with antihistamines PLEASE let me know WHICH antihistamines worked. And if they were OTC or RX? I’ve tried EVERYTHING-preventatives have not worked at all and sometimes my abortives won’t touch a really bad migraine. Would love to try something as simple as an antihistamine and get relief!
    Thanks.

  • Jaime Sanders moderator author
    5 months ago

    Hi Karen! It is very common for Benadryl to be given in ER’s intravenously as part of a “cocktail” of medications to help abort a migraine. It is thought that the antihistamine helps reduce inflammation around the head. You can talk to your doctor about adding an OTC antihistamine to your abortive medication to see if it will help.

  • glassmind
    5 months ago

    I have been given benedryl in the hospital. I was told it was administered for sedative properties and to prevent akathisia and dystonia (restlessness and movement disorder) caused by anti-emetics. Anti-histamines alone have no efficacy for migraine for me.

    If allergies are a trigger for migraine, then I could see taking antihistamine for migraine because one would be treating the trigger source.

    May each of us find the benefial therapies that help us.

  • AZReynolds
    5 months ago

    Jamie, Thanks for your article. You reflected exactly what I have been trying to do with my life. I live with chronic migraine with aura, plus other rare auras like syncope and Alice in Wonderland Syndrome (AIWS) so life with me is always fun. My chronic migraine state leaves me so susceptible to migraine that any sniff of perfume and instantly I am sick. I am so sensitive that I can smell detergents on people’s clothes from 30 ft away. I can even smell people’s deodorants. I can’t walk my dog for fear of dryer sheets on the neighborhood. So I live fairly isolated just to avoid other people’s fragrances that they don’t even realize they are emiting. Yet, I enjoy my life. Yes, I miss interactions with people, but with social networks like My Migraine Team and FibroTeam, I feel like I’m socializing some. Luckily I have one neighbor who also has to avoid perfumes, so we visit each other a lot. But I decided if my life was going to be lived in pain, I had to find joy within it. Crazy? Not really. There are things everywhere that are enjoyable! The color blue…my favorite is the slight rim of blue in the top of the hot tub of water. The moving leaves outside my window. The smell of hot tea or coffee. The sparkle in my dogs eyes when he’s anticipating a treat or toy. Joy is not just having fun. Joy is everywhere no matter if I hurt or not. Kayeff, I think this is what Jamie is relaying. Yes, lying in a dark room in pain sucks. No doubt. But what can we do? Hate ourselves? No. So try to find a way to live in it, inspite if it. I use my special quiet music which is all the quiet movements in my favorite classical pieces. Peppermint oil. Cool rags on my head, and then meditation to rise above the pain. You can learn this through cognitive behavioral therapy. And Jamie, your kids are better people for knowing your pain. They obviously have learned immense compassion that most people will never understand. God bless you all in your journey.

  • Jaime Sanders moderator author
    5 months ago

    You definitely have found great tools and developed coping skills that work for you! That’s half the battle, right? It’s very easy to lean into the pain, isolation, and frustration of migraine. It’s much harder to choose a different path. Thank you for your kind words and for your positive spirit!

  • jmtaylor30
    5 months ago

    Great article

  • Turtledove
    5 months 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.

  • Jaime Sanders moderator author
    5 months ago

    That’s wonderful about vaping working for you! Virginia has not legalized medical cannibis. I’ve only used hemp CBD oil but that hasn’t been very effective. I hope it continues to help you!

  • qohd9r
    5 months ago

    Hello, I have been raying to understand your posting .. because I am living in Australia I am not familiar with certain terms like when you said I was encouraged by a pain RN to a vape Cannabis.. what is that?……and would be available in Australia is my question ….??

  • Jaime Sanders moderator author
    5 months ago

    Hi! What she is referring to is using a vape pen to use cannibis or marijuana. Vaping is the act of inhaling and exhaling the aerosol, often referred to as vapor, which is produced by an e-cigarette or similar device. I’m not sure of whether medical cannibis is legal in Australia. If it is it may be something you can look into. I hope that helps!

  • Kayeff
    5 months 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.

  • Jaime Sanders moderator author
    5 months ago

    I can understand completely why this article doesn’t resonate with you. What works for me in how I cope with migraine won’t work for everyone. I do wish you more pain free days and you are able to find a treatment that will help you live life how you want to. Hugs.

  • Dn2292
    5 months 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
    5 months 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
    5 months 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.

  • Karen
    5 months ago

    Hi CrystalB,
    Can you recommend which antihistamine you find works best for your migraines? Is it an RX med or and OTC drug? I’m willing to try this as it’s one thing of all the zillion things I’ve tried without success. Thanks.

  • lisacooper
    5 months 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
    5 months 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
    5 months 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
    5 months 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
    5 months 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
    5 months 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!

  • Jaime Sanders moderator author
    5 months ago

    I’m sorry you are intractable as well. Staying positive is challenging but possible if we seek it out. Prayers your cycle ends soon!

  • glassmind
    5 months ago

    Thank you for sharing your story so eloquently.

  • Jaime Sanders moderator author
    5 months ago

    Thank you

  • Poll