10 Things I’m an Expert on Because of Migraine Disease

10 Things I’m an Expert on Because of Migraine Disease

  1. Napping- I have been called a world-class napper. When my body says it’s had enough and the pain is unbearable, I’ve been known to fall asleep in the car, on the floor of the airport, on the sofa with 10 other people in the room,or on the floor of my apartment because I just couldn’t walk one more step and the floor seemed like the perfect place. My body needs a nap at least once a day. There were times when it would be a two to four hour nap as I completely shut off my one hour alarm clock. I have gotten better about sleeping only one hour during the day, unless I’m in a really bad attack. Consistency is key with sleep patterns.
  1. Faking It– I’m really good at faking being well. I think most of us are. When I have to get through an important event, a conference or meeting, I can turn on the charm and seem competent. But sometimes as soon as I walk out of the room my entire body falls into itself and you can see the exhaustion and migraine all over my face.
  1. Giving Myself Shots– In order to avoid the ER at all costs, I have Toradol and DHE to inject into my thigh. For the first few years I would fill the syringe and sterilize the area, but preferred someone else to do it. Now, I can probably do the entire process for one of the injectible drugs within 90 seconds.
  1. Asking for Help– I wrote an article a while back called “Help Not Wanted,” because I didn’t know how to ask for help as my life was being turned upside down. I’ve made good strides in either asking for help or being honest about not feeling well without feeling guilty. I’m sure there are even more ways I can improve in this category.
  1. Being More Aware of Other’s Needs– I’m a pretty compassionate person to begin with, but I find myself mindfully giving people the benefit of the doubt. It could be a mother with a bunch of screaming kids in the store or a perfectly normal person parking in a handicap spot. I recognize that I have no idea what their stories are. You never know where they are in their life or health journey.
  1. Knowing When to Educate or to Walk Away– Another situation that often arises is when I tell someone I have chronic migraine attacks and they think they are an expert because their cousin eats kale shakes that stopped her headaches. Good for her. In both cases, I assess the situation and decide when it’s the right time to put my professor of health hat on and educate them or simply say, “Thank you,” and move on.
  1. Interpreting Doctor Speak– A large majority of patients who have chronic illnesses often say that they know more than their doctor. If they aren’t seeing the right specialist, this can be very true. Through my struggles of finding the right doctors and treatments, I can fall back on all of the medical rabbit holes of the internet I find myself in at 1am to learn all I could about my disease. I use every single minute of my appointments to get my questions answered and provide the doctor with the most pertinent information in changing a treatment plan. I’m pretty good at interpreting the special language that only doctors have and be able to translate it into layman’s terms, so that I walk away knowing we are on the same page, even though we speak different languages.
  1. Spending Time on Hold with Insurance-No stone goes unturned until I fully understand why I owe any money from getting blood work to an in-patient hospital stay. On more than one occasion, the billing department has been wrong. Dealing with insurance and billing can feel like a full-time job, but I’ll stay on hold for 45 minutes if it means I don’t have to pay a $500 bill.
  1. Enrolling in the Affordable Care Act– Whether or not you agree with the politics of the ACA, I would be screwed due to a pre-existing condition. After countless hours of research to understand the system, my friends come to me to help them navigate the process. It actually brings me joy to know that they are getting quality healthcare because I spent a few hours making sure to find a plan that fit their needs. (No, you can’t call me to do this for you! LOL!)
  1. Finding Ways to Enjoy the Little Things– I can’t always go to a BBQ, go to a concert or even have the energy to have a lengthy phone conversation. But in the times where I am out of my vampire cave, I find beauty in the street art, I stop to pet a friendly dog, I take video I’ll never watch of the tiny little birds that scatter around the shore line at dusk because I think they are hilarious.

What are you on expert on?

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 (26)
  • Ronan
    1 year ago

    Naps are a wonderful thing. I have power naps during the day and schedule around self-care. Here in Canada I can be on long-term disability, and I am thankful for that.

    But as I’ve gotten older I’ve noticed I am not as compassionate as I use to be. I only give my nearest and dearest the benifit of the doubt. But I have learned to walk away when needed. I don’t have the energy anymore to educate strangers. Now I can give them this site instead.

    What I have learned above all is that I am still living. Mlgraine hasn’t ruined anything. I’ve needed to learn to adjust to the way my life is now. I wouldn’t wish Migraine on anyone, but it has taught me to be gentler with myself and to live my life the way I need to. Others will adjust to it

  • Deb
    1 year ago

    Katie M. Golden, I am interested in #3, giving yourself the Ketorolac shot. I have been able to get Ketorolac in tablet form for migraines lasting three days or more. I was told the shots are given at ER or doctor’s office only. I am going to see if my Headache Specialist will prescribe shots to have at home for those times the headache persists beyond my ability to tolerate it any longer. Are you located in the States or have a special medical status tgat is required? Thanks for sharing.

  • k_nelson
    1 year ago

    Oh how I agree. My migraines are one of my worse enemies. It ruins school, family time, friends time, and the like.
    I have had to learn at a young age (17) to not listen to everyone’s advice. Way too often someone will tell me that their second cousin three times removed has the cure to migraines and swears by jumping up and down ten time, drinking celery juice or something crazy like that. For me, I have to turn off all these ideas. I know that I cannot try everyone of the crazy things people suggest. Though every time someone tells me they have found the solution, part of my heart lights up. I hope that the same solution will work for me, but it never does.
    Napping is my best friend. I am currently in highschool though am taking college classes to gain extra credit hrs. After I get home from school each day I take a nap. I try to nap in the 10 minute breaks between classes, or any spare time that I can find. Napping doesn’t usually take away the pain, but at least I don’t have to think about it if I am sleeping.
    I hope one day, I will be able to find my cure. Though somewhere deep inside, I know it will not be any time soon. I know that at the age of 12, I had to learn to deal with chronic pain. I know that no one in my family can truly know the pain I experience daily. I have a sickening feeling that this is the lot that has been given to me, and at some point I will learn to deal with the combination of cluster headaches and migraines daily.

  • Katie M. Golden moderator author
    1 year ago

    @k_nelson, Naps are my best friend too. It helps me to manage the pain. With a little meditation, I can distract myself from the pain and fall asleep for a few hours. It’s my respite. I know exactly how you feel !
    -Katie
    Migraine.com Team Member

  • katdan1026
    2 years ago

    I am a nurse and a person with migraines. Today I had the privilege of telling a young lady with a new migraine diagnosis to ignore all the people who would try to give her unsolicited advice. What works for some doesn’t work for all. Trust your own experience and instincts, and work with your doctor!

  • Katie M. Golden moderator author
    2 years ago

    That’s the best advice you could ever give her!!
    -Katie
    Migraine.com Team

  • Loricouture
    2 years ago

    Hello, for the past 23 days I have had migriane attacks!!! Nothing outrageous about that as I have been dealing with them since I was 15 years old. Normally they don’t attack for days like this. I found a product on Amazon its called migraine stop it’s an all natural mostly magnesium but they have found a way for it to breech the blood brain barrier allowing more of the magnesium to get into your blood stream!! I am hopeful the last couple of days I have been shall I even say it Migraine free, hard to even type that out. I have only used the product for 6 days so not entirely sure but hey it’s worth a try!!! Check it out Amazon they have money back guarantee and NOOOOO I do not sell product or get paid to endorse product I just want to help others that are in extreme pain!!

  • Judy H
    2 years ago

    #6 is the biggest challenge. Everyone means well – well maybe – and sometimes it is very hard to be patient with this type of person. I have had migraines for 4 decades +. I think I have a better idea of what works, what doesn’t -and- I absolutely know what my food triggers are. Just about everything that I have seen on lists of migraine triggers are off limits. The worst are people who also have migraines and give me paperwork that their doctor shared with them. One person that I know drinks wine a lot, and shared recipes that her MD gave her to help her migraines. One recipe contained pork and orange juice! WTF! Those 2 are classic food triggers. It is hard to keep silent, especially when those people assume that you are obviously doing something wrong. Sigh.

    #7 is hard too. I had a doctor once who insisted that I never ever take naps. Really? My body makes me take a nap. In fact, I have such a high pain threshold that sometimes I first realize that I have a migraine coming on because I am yawning a lot.

    #5 is probably the “best” thing about being a migraineur. I have become way more empathetic over the years because I know what it is like to be utterly miserable. I am willing to give the other person the benefit of the doubt.

    Thanks for your article. =)

  • Katie M. Golden moderator author
    2 years ago

    Judy H,
    Thanks for your feedback.
    I had a doctor too that told me to stop napping. Then it became clear that it helped me. I just needed to be consistent with my sleep schedule including my naps.
    When someone asks me what my triggers are, I tell them “the fact that I keep breathing is a trigger for me.”
    Best Wishes!
    -Katie

  • autumn999
    2 years ago

    I am posting this as I sit here with my third consecutive day I have a migraine, and the meds not helping me… but I digress. I get them about 21 days a month with hallucinations, nausea, dizziness and the works. ( The hallucinations are super fun by the way, ahem, sarcasm.) I am quite adept at most items on this list; especially the faking it and the learning when to walk away versus “schooling” somebody. If something works for you it doesn’t mean it’s going to work for me and vice versa. That’s why when I talk to somebody else and explain what I’ve gone through I always tell them “but check with your doctor”. Regarding the faking it, it’s almost as if you have to because what are you going to do? Just live your life balled up in a corner? So when people ask me why am I out or why am I doing this or that when I feel so bad that’s pretty much the answer I give (unless of course it’s one of the extremely bad days with the hallucinations, which means I’m not driving). On a sidenote, my favorite thing is when I say something about having a migraine and somebody says “oh I have/ get one/ those too” and in my head I’m thinking “no you don’t; you might have/get a headache but you definitely don’t have/ get a migraine… I KNOW the difference”. Anywho, great article – definitely sharing!!

  • Loricouture
    2 years ago

    Just found a product on Amazon called migraine stop feeling hopeful last few days of taking it i have been migraine free

  • Katie M. Golden moderator author
    2 years ago

    Autumn,
    Thanks for the feedback. It’s nice to know we’re in it together!
    -Katie
    Migraine.com

  • DonnaFA moderator
    2 years ago

    Hi autumn999, thanks so much for being here and for sharing your thoughts. I’m with you on the sarcasm, it is my middle name 🙂 We’re glad you enjoyed the article and are happy you’re part of the community. -All Best, Donna (Migraine.com team)

  • Rowena
    2 years ago

    How can you nap with a migraine?! I’m jealous. My migraine pain gets so excruciatingly bad that it blocks out all other senses except hearing. It’s just PAIN, PAIN, PAIN, background noise, PAIN etc…and when I try to sleep it’s like the pain is emphadised. Most times I have to take Panadol Extra and Zomig to start getting better.

  • Ronan
    1 year ago

    Rowena, I’m so sorry to hear that. I have sleep problems at the best of times. When I say I nap, it’s when I don’t have a migraine. Otherwise, putting pressure on that side of the head by laying on that side sometimes feels soothing. But napping during a migraine means I am falling asleep out of exhaustion. Don’t really have a choice. Either lay down or fall down.

  • Katie M. Golden moderator author
    2 years ago

    Rowena,
    Like Anne says, I nap because my body gets so exhausted from fighting the pain. I’ve been known to just stop in my tracks, fall to the floor and sleep even though the bed is a few feet away. But don’t get me wrong, I have plenty of nights where I can’t control the pain and I’m up until 5am. So frustrating!
    -Katie
    Migraine.com

  • Rowena
    2 years ago

    *emphasised

  • Anne
    2 years ago

    Yup – I nap whenever I get the chance. I think being in pain so much strips your body of energy and I need to recover whenever I get the chance. I used to take just aspirin and a cup of tea and sleep for an hour when I first starting getting migraines at age 12 and that did the trick, but 35 years later, I’m on preventatives and Relpax. It makes me nuts, too, when someone says that ‘not eating this or that cured their migraines.’ We’ve ALL tried cutting everything out of our diet. I’ve even gone on a pilgrimage to bath in holy waters (no joke), so chances are, whatever your mother’s cousin’s brother did to ‘cure’ his migraines, I’ve tried.

  • Kara
    2 years ago

    You nailed it. Shared this on Facebook to help my friends and family to understand what it is really like to have migraines. Unfortunately, they probably won’t read it. BUT! I still put on my “nurse’s” hat and try to educate, as that old job has a bad habit of sharing information & educating.

  • David
    2 years ago

    My dad (back in the 60s and 70s) got the aura type. As soon as he saw the aura, he’d take about a tablespoon of salt and wash it down with a cup of coffee. Well, that self-medication helped, he reported, and probably for good reason. Both salt and coffee are vasoconstrictors. Of course, it didn’t eliminate the headache but reduced it by about 50% which is about as good as some Triptans for some folks.

  • David
    2 years ago

    I agree, Katie, when people comment on medicine. I have arthritis, too, and some folks tell me that this or that OTC does the trick. Well, they have a very mild case. Perhaps some folks have mild cases of migraine, but I’m always suspicious and am getting better at saying what you do. “That’s wonderful, because they can be so bad.”

    Are there any differences in pain between migraine with aura and migraine without aura?

    Dave

  • Katie M. Golden moderator author
    2 years ago

    Dave,
    For me I notice a huge difference in the intensity and duration of pain when I get an aura. I doubt there’s any study that proves this to be true across the board. It could also be a little in my head (no pun intended). I can get myself worked up when I have a visual aura, just knowing that no matter what I will be useless for 3-5 days. There’s no borrowing energy to get through the day.
    -Katie
    Migraine.com

  • Luna
    2 years ago

    I’m an expert at being told ….

    “When I come across someone who says they have migraine and an over the counter medicine helps them, I suppress the urge to roll my eyes and tell them they have no clue what I go through. ”

    I have more than a clue as to what an extreme migraine attack is like. Some people, like myself, have tried rx drugs (preventatives and abortives) that worked for awhile then quit or caused side effects or reactions that were impossible to live with. Fortunately I can still use generic excedrin and back & body. Without going into a big explanation or rant I will just say please be careful how you judge others that live with migraine. We each are individual.

  • Falcon6
    2 years ago

    Luna, Excedrin Migraine used to work for me, even after I became chronic it gave me at least a little relief by taking the edge off. I was NEVER without a bottle of it on me. Then, it stopped working. : (

    I became a pro at faking that I am ok and at smiling at people when they give me some remedy someone they know used and “cured” them of migraine disease. One lady told me I need a hysterectomy. I tried to smile but it was hard to cover the “are you crazy” look on my face. I am terrible at asking for help and I am terrible at not feeling guilty for the days I just cannot fake it.

  • Luna
    2 years ago

    OTCs are all I am able to take. And I have noticed that excedrin and any brand with the same inert ingredients causes a strange reaction.
    Courage to us all.

  • Katie M. Golden moderator author
    2 years ago

    Luna,
    Thanks for your feedback. Today I was talking to a woman whose daughter has migraine and can control it by Excedrin Migraine. I told her that I was so happy she had something that worked for her. I’m honestly a bit jealous. I wish that worked for me and for all of us.
    -Katie
    Migraine.com

  • Poll