Read This If You Have Migraine Disease or Know Someone Who Does

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Migraine awareness month was June but since I have chronic intractable migraine combined with the fact that life happens sometimes, here we are in the middle of the month of July because sometimes things get accomplished a little later than hoped. Migraine awareness is great year-round anyway, so let’s start the conversation to end the stigma.

Migraine Disease: Stats & Facts

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  • Migraine is a complex genetic neurological disease that affects 25-50 million people in the US and 1 billion globally. Of those, 4 million have chronic migraine. 1 in 7 is affected by migraine disease.
  • Having migraines every so often is a completely different thing than having migraine disease. Most people with migraine experience attacks a few times a month.
  • Migraine isn’t treated as valid as other more visible health conditions.
  • Migraine is the 3rdmost prevalent illness in the world and chronic migraine is the 7th most disabling.
  • Migraine is associated with loss of productivity, laziness, excuses, and so much stigma.
  • More than 90% of those with migraine disease struggle to work and function normally.
  • There’s not that many headache and migraine specialists in the US or worldwide. We usually see multiple neurologists and other doctors that are most likely taking a shot in the dark. Worldwide, just 4 hours are committed to headache disorders in formal undergraduate medical training, and 10 hours in specialist training. There are less than 500 certified headache specialists in the US.
  • The two main categories of migraine are episodic and chronic, though there are other types of migraines like vestibular, hemiplegic, and with and without aura. With episodic migraine, a person has migraine headaches less than 15 headache days a month. With chronic migraine, migraine headache days are 15 or more a month. For people with episodic migraine, their symptoms settle down between attacks. For those with chronic migraine, we don’t really get a break. For those in an intractable migraine period, we never get a break.
  • Migraine disease and manifestation is different for every person with it.
  • Migraine disease is progressive- the more headaches and migraines you have, the more you’re going to have if nothing changes. Those with episodic migraine are at risk for it becoming chronic, meaning we should take the power we have and get proactive about our health. There’s no cure but there is hope for healing.
  • Migraines don’t manifest the same way for everyone. Every person with migraine is different. The symptoms vary in frequency and intensity and aren’t all experienced by every person with migraine, but in general the symptoms are severe head pain, nausea, vomiting, sense hypersensitivity, cognitive dysfunction, fatigue, weakness, coordination problems, and more.
  •  Migraine is associated with a hyperexcitable brain and sensitized brainstem.
  • Chronic migraine is one of the most disabling medical conditions. I’m not making that up. The World Health Organization considers it as severe as quadriplegia.
  • Migraine affects women more often than men, but both genders are at risk since it’s a neurological disorder. Unfortunately, much of the sexist stigma and ideas from back then still remain with women and migraine.
  • Although rare, migraine attacks put some people at an increased risk for a stroke. Seek emergency medical care if you have aura that lasts longer than an hour or have new or different symptoms that don’t improve with treatment.
  • Migraine is the least publically funded of all neurological illnesses relative to its economic impact.
  • Healthcare and lost productivity costs associated with migraine disease are estimated to be as high as $36 billion annually in the US. The cost of treating chronic migraine was more than $5.4 billion in 2015.
  • Awareness and education about migraine disease opens up dialogue and reduces the stigma.

*stats from migraineresearchfoundation.org and migrainetrust.org

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Living With Migraine Disease

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  • I have struggled with headaches and episodic migraines since early childhood and chronic intractable migraine since age 13, so a lot of this is based on my own personal experience. I have seen multiple doctors, had the scans and tests done, tried most of the treatments (and working towards trying the last few), and have battled the ups and downs of living with chronic intractable migraine for the last 9 years. I’ve let migraine rule my life and defeat me for most of it, but a while ago I decided to change my approach and live well despite migraine. Although my story is just one, mine is just one of many that are all too common of warriors with migraine disease.
  • Functioning in pain all the time is hard. Can I just say that? It’s a daily challenge to overcome and live life despite migraine disease.
  • We have to try extra hard to focus and concentrate because migraine fog and cognitive dysfunction is too real, and we have to overcome the pain to do anything in the first place. Even simple tasks require more energy and effort than the average person.
  • Going places and doing things are sometimes a huge challenge for us.
  • I try to do one thing at a time and keep my plate smaller with just a few things on it instead of having a whole bunch on a bigger plate. Life just works a little better for me like that with my capacity, and it’s easier to keep up with. Also, lots of sticky notes help.
  • We’re in constant pain and have to think about our triggers all the time while trying to relax and not be stressed or anxious. We still have to live our lives. Managing a disease while managing life and hiding your disease and most of us are just trying to fit in and be normal instead of accepting the way we are. Others around you don’t get you and probably think you’re a little weird.
  • Sometimes you can smile and be okay and sometimes you sit and cry and breathe through the pain because it just hurts too much and nothing seems to work. Sometimes the pain is debilitating and we just can’t push through no matter how hard we try.
  • We try to be in tune with our bodies and do our best, but we can only do so much. We know that if we didn’t push ourselves all the time, we wouldn’t have a life or get anything done and we would basically fulfill all the negative stereotypes that people put on us.
  • Something as simple as staying up too late can send our pain level soaring the next day, or immediately if it’s a trigger such as an unexpected loud noise.
  • We’re hyperaware of sensory stimuli. It’s exhausting trying to manage everything with migraine. We have to consciously think about so much that the average person doesn’t give a second thought to.
  • Migraine is largely a lonely and frustrating and painful disease.
  • We have our good pain days and our bad pain days, and our pain levels and symptoms can change throughout the day. I personally do best in the morning and fizzle out as the day goes on while my pain level slowly increases, so by the end of the day I am done.
  • You constantly feel sick and try not to look or act like how you feel but sometimes it shows anyways and you try not to get all self-conscious about it.
  • It’s difficult to feel like we don’t have to compensate for our disability or feel like we have something to prove.
  • Dealing with doctors and health insurance can be an entirely frustrating challenge on its own.
  • We have to take preventive measures every day and make sure we are managing our triggers. We have to constantly monitor and manage our pain and energy levels.
  • We have fears of the unknown future living with migraine.
  • We struggle to talk about our pain because of all of the stigma surrounding it, so we usually stay silent. It can get awkward or uncomfortable real quick.
  • We don’t like to pull the “I have a migraine” card but sometimes it’s appropriate. A few weeks ago this guy at Winco was blaring his metal music for everyone else to enjoy, but I was not enjoying it since it was actively making my head worse so I politely asked him to turn it down a bit, which he did, before turning it back up later. Sometimes such is life but our pain is valid and it’s not right to always deny our experience.
  • It’s rarely as simple as mind over matter or praying more fervently.
  • We have to do what we have to do to survive, but most of us are struggling in one way or another to function like someone without migraine. We develop our own unique ways of coping and living with migraine.
  • We carry guilt from being inconsistent and having commitment issues. We probably think we’re disappointing you or being a bad friend.
  • Working within our limitations is a difficult thing to do successfully. We usually have to modify things a bit, and that’s okay. We have to take one day at a time and figure out what we can do within each day.
  • We’ve seen a lot of doctors and have a long list of treatments we have tried, and so far we haven’t found the magic pill yet.
  • We occasionally wonder if we’re crazy or what’s wrong with us to be in pain all the time.
  • Migraine changes everything about how we experience the world.

Managing Migraine: From Surviving to Thriving

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  • Create an evolving migraine management toolkit and lifestyle- some good things to include are a plant-based diet, movement, a relationship with Jesus, staying hydrated with water, nature time, a good health care team, cannabis, essential oils, clean and natural living, and living in community.
  • Do what’s within your power to help yourself out.
  • A therapy animal is a wonderful companion.
  • Sugar and gluten are two triggers for pain: try cutting them out for a while to see if you notice a difference.
  • Sometimes you have to focus on the basics. I keep things simple so I can reduce my stress and stay organized. Reevaluate what’s important in life and focus on that.
  • Do what you need to do to live your best life and don’t worry about what others will think.
  • Make good habits that help you and try to break bad ones that don’t.
  • Redefine success. You may not be able to work a full-time job or do whatever else it is you think success looks like, but you’ll be better off when you realize that success isn’t limited to stereotypical societal expectations.
  • Keep praying for this migraine mountain to be moved but also pray for the strength and courage to overcome it and live well despite this disease.
  • Avoid triggers and manage them to the best of your ability, but don’t get so obsessive about it that you let that focus run your life.
  • Press into love- it heals. Love others and let yourself be loved.
  • Don’t be afraid to get help.
  • Find ways to naturally increase your serotonin levels.
  • Be your own advocate.
  • Do what you can with what you have right where you are. Stop focusing on what you can’t do and focus on what you can and get creative with your current capabilities and resources.
  • Challenge yourself to try and learn new things and build your capabilities.
  • Put your energy and focus towards the good things in life- the grass is greener where you water it.
  • Process the pain and have some peace by journaling. Getting it out in writing helps get it off your mind.
  • Find a way to move with the pain.
  • Don’t compare your pain to someone else’s.
  • Prioritize getting enough sleep to make you feel rested.
  • Be strong by resting in Christ. It sounds paradoxical but it’s true. Let Him walk with you and ask Him to show you how to rest.
  • Look at what parts of your body and soul need attention and give it some.
  • Find something that serves as a healthy distraction to refocus attention away from pain.
  • You’re probably used to toughing it out more than you’d like, so make sure you’re not overdoing yourself. Sit back and rest sometimes, your body needs it.
  • Look for and be thankful for the good things in life. There’s always good things, even if sometimes you have to shift your perspective and look a little harder.
  • Learn to deal with your anger, frustration and other negative emotions. Don’t let them fester inside.
  • Choose to be present in each moment.
  • Try the teas and herbal remedies and natural stuff. There’s some truth in it, and it might not be a cure-all, but it’s definitely worth looking into, like turmeric and ginger.
  • Fix nutrient deficiencies- magnesium is a common one associated with migraines and other health issues, so give it a shot if you haven’t already.
  • Consider eliminating things from your diet that may be trigger foods, and play around with what makes your body feel its best.
  • Self-care isn’t selfish- you need it. Take a bath, a nap, or do whatever else it is you like to do to care for yourself. Don’t neglect yourself.
  • Socialize sometimes, even when it’s probably your natural instinct to be a hermit.
  • Pursue your hopes and dreams.
  • Find or create your calm and get in that space whenever you need to. Take deep breaths.
  • Find joy in the journey. Do things that bring you joy.
  • Once you start living your life doing what’s best for you, things get easier over time. You get stronger and find ways to go from surviving to thriving and actually living your life.
  • Consistency is key. Progress over perfection. It’s the little things that add up to make the big changes.
  • Get informed! Do your research and talk to your doctor to get knowledgeable about migraine. Understanding what’s going on with your body gives you peace about it and makes it easier to accept, otherwise you’ll drive yourself crazy wondering what’s wrong with you.
  • Don’t let things you can’t do prevent you from doing things you can.
  • Make color in a dark world.
  • Reframe your thoughts about things- don’t just put a positive spin on everything.
  • It’s not as simple as mind over matter, but using your mind to help manage migraine is essential.
  • Find a healthy way to manage your stress. Stress is always going to be there but how we manage it makes all the difference.
  • Be kind and not so hard on yourself. Give yourself some grace and compassion.
  • Use your pain as purpose.
  • Embrace the struggle as a chance to become stronger.
  • You are a warrior. Keep fighting the good fight. You’re stronger than you think.
  • Intentionally take time to make and maintain relationships. Mend ones that need repair. Learn and keep healthy boundaries.
  • Sometimes you gotta give yourself a pep talk. You got this.
  • Have a flexible routine.
  • Making changes and taking control of what’s within your control is so incredibly empowering and makes a huge difference.
  • Laugh and play! It’s good for you.
  • Anything you can do to support good health minimizes the impact of migraine on your life.
  • Decide that you’re going to live your life no matter what.
  • Find your happy place and go there often. Create it if you need to.
  • Break up tasks, prioritize them, do as much as you can when you can as best as you can. Pace yourself.
  • Manage your medications and take as intended. Keep all medication information and medical records organized in one place.
  • Find a doctor who listens to you and build a healthcare team that is there to support you.
  • Give up the idea of the way things “should be” and be okay with the way things are. Accept what you can’t change and flow with it, and do your best to change what you can for the better.
  • It’s hard not to let migraine rule your life- but you can thrive and not merely survive.
  • Do activities you enjoy to get you moving.
  • A walk with a friend in nature helps manage stress, move your body, connect socially, sleep better, and gets you outside in nature. It’s a 5 in 1 good thing. Go on walks with friends and family, really.
  • Know that you are never alone even when it feels like it.
  • Be prepared for pain spikes- keep snacks handy, water, medications, soothing products. Make a smoothie and lay down for a bit with an ice pack.
  • Look at different areas of your life and see what you could alter or modify for better migraine-friendly living.
  • It’s easy to be a negative Nancy when you’re in chronic pain, but fight it. How we respond has so much power. Pain is there but we can influence how we experience it by choosing how we handle it. You can be a miserable person with migraine or a person moving mountains with migraine.
  • Be mindful and recognize the little things. Be aware of your breath and your surroundings. Noticing the things we usually miss because we’re too busy lets you be more aware and present.
  • Practice gratitude. It’s harder to complain when you’re being thankful.
  • Communicate with your friends and family about how you’re doing. Have the courageously uncomfortable conversations when you need to. Good communication is the lifeblood of sustaining healthy relationships.
  • Surround yourself with those who love and support you. Evaluate your relationships and take responsibility for your part in them, get out of toxic relationships if you need to, and keep healthy boundaries. Connecting with community is crucial to good health.
  • Get a firm foundation and stay grounded in truth. It keeps you anchored in the storms of living with migraine.
  • Sometimes you gotta cry it out. It’s a lot to deal with.
  • Live each moment to the fullest. Sometimes this means pushing yourself and sometimes this means being fully present with your pain and just breathing through it.
  • Migraine is a multidimensional disease, so look at different areas of your life to live better with it. Address barriers to making healthy changes, like experimenting with gentle exercise that works for you if exercise is a trigger.
  • Ditch dirty chemicals and keep things clean and simple.
  • Living well means being able to say it is well with my soul despite the pain and chaos that comes with migraine disease.
  • Know who you are so you don’t let your pain define you.
  • Explore new treatment options with hope and an open mind. I have a friend who eats olives to help her migraines, and she brought me a jar of them. It didn’t work for me, but I felt more loved by the fact that she genuinely cared enough to do that instead of being frustrated that it didn’t work for me.
  • Deal with your past and present problems- the trauma, the brokenness, the messy stuff, that sin issue. Your problems didn’t cause your migraine, but it also won’t help it if you don’t go there and get healing on a soul level for them.
  • Embrace healing in different shapes and forms.
  • Do the best you can to take care of your body so it can function at its best despite migraine.
  • Connect with others who have migraine. Sharing experiences and community makes it a little less isolating and easier to bear the burden together. I’ve met a couple fellow migraine warriors on social media that became real-life relationships and they have been nothing short of a breath of fresh air to relate to someone with the same or similar struggle as you. Be intentional- reach out, follow up, and check in with each other. We are wired to connect with others and we need a strong support system. Find those who get you (or at least try) and don’t worry about the rest. Life with migraine is messy and connection to others is crucial to navigate it.

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Traditional Treatment

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  • Treatment is trial and error.
  • Finding effective treatment isn’t the same as finding a cure. Some people with less severe migraine find something that works for them to manage them better, but everyone is different and we respond differently to various treatments. Sometimes a particular treatment will bring even just one level of relief and that makes a difference.
  • There are lots of prescription drugs that are used to treat migraine. There’s abortive and preventive therapy with multiple subtypes of each kind. Basically there’s a lot of pills out there and we’re all just waiting for the magic one. Talk to your doctor about how to use each medication prescribed properly, as well as do your research so you know about what you’re taking. Make sure you know the side effects and avoid medication overuse, which can lead to more headaches and migraines.
  • Occipital nerve blocks and Botox are effective for many. Talk to your doctor about it as an option and what the process of approval is.
  • Chiropractic care and acupuncture are helpful and worth looking into.
  • Opioid use is a very real danger among chronic pain patients. Opioids create a vicious cycle in the body and have a high risk for abuse, addiction, and overdose.

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Cannabis for Migraine

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  • Cannabis is an effective and safe medication for many. It’s crazy to me that people consume so many chemicals without question, yet are skeptical about medicine from a plant.
  • There are side effects and desired effects with every drug and cannabis is no different, although the side effects are much easier to deal with than a lot of prescription pills. It is important to use it responsibly, but there is no danger of overdose.
  • Cannabis laws are changing for the better. Legalization is bringing standardized safety and regulations to the cannabis industry. More and more states are legalizing medical marijuana, and it is being reconsidered at the federal level.
  • CBD and THC are two main components in cannabis. CBD is usually seen as being the only one with medicinal value, however THC also has anti-inflammatory and pain-relieving properties.
  • If you’re curious about cannabis, start small with CBD alone and slowly work up the dose. If you try that for a few months and it doesn’t improve your pain, add in low doses of THC until you find the right ratio for you.
  • Cannabis can be consumed multiple ways: edibles, smoking, vaping, juicing the leaves, tinctures, topical products, and more.
  • Cannabis is affordable compared to most prescription medications, and you can potentially grow your own at home. It takes some resources and effort, but it’s empowering to be able to grow your own medicine.

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Mental Health and Migraine

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  • Mental health struggles and migraine are often comorbid.
  • Dealing with pain daily or frequently can easily mess with your head. It’s hard not to feel less than human somehow because of migraine disease, which can mess with you if you’re not careful. Don’t let it dehumanize you. You are fearfully and wonderfully made. You are enough.
  • Managing mental health struggles like anxiety and depression on top of migraine can be a struggle in itself, but well worth the effort to get them under control.
  • The mind and body are intertwined and influence each other.
  • Suicide is an increased risk with migraine and not something to be taken lightly.
  • We have the power to recognize and challenge negative thoughts and fight them with truth, and new thinking patterns can override old ones with enough time and intentionality.
  • Please talk to someone and seek out help if you feel suicidal or at a low point where ending it all seems like a better option than dealing with this pain. Take deep breaths and cry it out on the floor, do what you need to do but please don’t give up. You were created for love and belonging and this world needs you. You’ve made it through every dark day so far. This world is tough but so are you my dear. You are so wildly loved beyond what you can imagine.
  • The national suicide prevention hotline is 1-800-273-8255. Call them or call a trusted friend or family member and talk to them about what’s going on. It just might save your life or someone you know.
  • Sometimes it only takes one small act of kindness to keep someone going. Throw it around like confetti because it’s free and usually isn’t hard to do. Everyone you meet is fighting some sort of battle.

How You Can Support a Loved One With Migraine Disease: What We Wish You Knew

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  • If you know someone with migraine disease, don’t be afraid to talk to them about it. Ask questions. It might be awkward or uncomfortable but we need to have those conversations. Listen with the goal to understand.
  • Sometimes just being there and being present with us in our pain is more than enough. Check in with us to see how we’re doing. We don’t expect you to get us, but it’s nice when people make the effort to try.
  • Don’t dismiss migraine as “just a headache”. It’s a serious and sometimes debilitating neurological disease with more head pain than a headache, along with a host of other symptoms. PLEASE stop calling it a headache.
  • It’s not something that can just be easily fixed with the right treatment. Some people outgrow their migraines and some people find their magic pill, but a lot of us are still struggling without relief or answers. 
  • Pray for us, and with us, but don’t tell us that our pain would go away if we would pray more fervently.
  • Migraine disease is NOT caused by stress. Stress can undeniably cause and worsen migraines, but migraine disease would not be eradicated by a stress-free life. Please stop asking if we are stressed out or have tried yoga. There’s a good chance that the answer to both of those is yes, but we still have migraine disease.
  • Don’t shame and guilt us. Ask before you assume.
  • Yes, we know we look fine and healthy and are too young to be feeling this old. We didn’t ask for an invisible illness.
  • Engage in empathy, not sympathy.
  • We’re happy that your great aunt’s friend’s sister’s cousin found what worked for her migraines and we’re open to hearing suggestions, but please don’t make it sound like that must be the magic treatment for us too.
  • We don’t want your pity. We want people to understand us so that we aren’t misunderstood. We don’t want attention. We want to educate people so we can reduce the stigma that surrounds us.
  • Our entire life is basically coping with migraine and there isn’t a single area that isn’t affected by it.
  • We often feel like we’re wearing a mask because sometimes it’s easier to stay silent and hide rather than explaining to everyone what’s going on all the time. As soon as migraine comes up, it usually brings a flood of interrogating questions and we have to explain our disease and medical history and all the things we’ve tried and it’s just not a fun experience to keep repeating.
  • We aren’t using migraine as an excuse. We’re usually trying our hardest to push through the pain to participate in life but sometimes it’s hard. All the pain, fatigue, exhaustion, cognitive struggles, guilt, anxiety, everything all the time gets overwhelming and sometimes we have to rest. When we push ourselves, we usually pay for it in pain that takes a while to recover back to baseline.
  • We have commitment issues because its hard to be consistent and commit to things when you have to live your life one day at a time.
  • Yes, we can smile and really be in that much pain. Yes, we are in that much pain and do things sometimes because we would never get anything done if we let migraine rule us.

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Hope on the Horizon

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  • Aimovig is an anti-CGRP drug that is the first one specifically designed to treat migraines. It was approved by the FDA on May 17, 2018. Talk to your doctor about if it’s an option for you.
  • The brain and central nervous system have the ability to change and repair itself over time, so there is hope of healing no matter what’s going on in there.
  • If you have chronic intractable migraine, something has to break the pain cycle the first time, but after that there is hope of having less migraines and less severity after that. Don’t be fantasizing about a migraine-free life, but dream about managing it better and take the steps you can in the right direction. It takes a while for episodic migraines to become chronic in the first place, so you can’t expect it to reverse overnight either. Others have had years of intractable migraine periods that eventually let up, so there is hope!
  • God is bigger than any challenge we face, including this migraine mountain. Let’s find hope and comfort in that.
  • It’s easy to be hopeless, but there is always hope. Cling to it.

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4 Comments Add yours

  1. Healing the Heart of the Earth says:

    You have blown me away, your information got me in tears for realising I wasn’t alone and someone knew exactly what I was going through and you taught me things I didn’t understand, which I didn’t realise was related to migraine because I was owning it with my personality. And I haven’t even read it all yet. But I will. You have opened up my world and given me hope. I am so sorry and saddened to realise how severe this has been for you and how long it has been in your life, I cannot imagine, my trouble has been nothing like yours. However, I can also see the silver lining it has brought and how it has made you strong and enabled you to give to others, it must be little compensation but I am in awe of the way you conduct yourself and teach others to cope with this difficult condition. Thank you from the bottom of my heart. x P.S. I’m quoting you in my blog tomorrow, I hope you don’t mind.

    Liked by 1 person

    1. ktanderson says:

      Thank you, I am so glad that this was helpful and encouraging for you (: It’s a rough road but there are so many silver linings and it’s freeing to be able to rise above it simply by not letting it get/keep us down and defeated. Stay strong!

      Liked by 1 person

      1. Healing the Heart of the Earth says:

        Thank you, it’s certainly pushing me! I am seeing silver linings and keeping my sunglasses on for more. All the very best with your journey too.

        Liked by 1 person

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