Chronic Migraine Awareness

Chronic Migraine Awareness, Inc. would like to thank Marianne for sharing these resources with us.

Chronic migraines are more than 15 migraines a month.

This is a long post and certainly not for everyone. But if it only helps one person to find a help for their migraine and or opens the eyes of one of those who didn’t know much about it, the work put into this list was well worth it.

I know people mean well but if it helped your neighbor’s aunt’s dentist’s daughter’s teacher’s cousin, I probably have heard about it already and also tried it with no success.

However, as a person living with migraine, I am always interested in finding a solution or at least talk about what might and might not help. Therefore, I created a list in 2011 with links to anything that could be helpful for a sufferer like me. Even though I updated it constantly, there were so many new websites and article that I added another one in 2014. And here we are again, so many new articles that I’d like to share with my friends, and so many old ones that disappeared. Therefore, here is a new list that I will update from time to time. You can still go back to the old ones (2011 here, 2014 here and 2016 here) but I have not included any of the links here that don’t work anymore.

Migraine and related Quotes:
“And if you gaze long enough into an abyss, the abyss will gaze back into you.” Friedrich Nietzsche
“Chronic pain is just that … CHRONIC. It never goes away, never cuts you a break and it changes EVERYTHING.” N.N.
“Diagnosing a migraine involves analyzing the symptoms, conducting medical tests, and eliminating other possible causes of the headache.” Chronic Pain Info
“I see myself as a migraine who sometimes gets to be a person.” @thedailymigraine
“Having an invisible illness is like being a duck on a pond: On the surface everything looks normal, but what you can’t see is how hard we are working just to stay above the water.” Migraineur Misfits
“If you know someone who’s depressed please resolve never to ask them why. Depression isn’t a straightforward response to a bad situation, depression just is, like the weather. Try to understand the blackness, lethargy, hopelessness and loneliness they’re going through. Be there for them when they come through the otherside. It’s hard to be a friend to someone who’s depressed, but it is one of the kindest, noblest and best things you will ever do.” Stephen Fry
“Just because a person smiles all the time, doesn’t mean their life is perfect, that smile is a symbol of hope & strength.” Lauryn Hill
“Migraine is atrocious torment, one of the worst in the world, weakening the nerves, driving one mad, scattering one’s thoughts to the winds and impairing the memory. So terrible are these headaches that I can do nothing but lie on a couch and try to dull the pain by sniffing ether.” Guy de Maupassant
“Migraine is difficult to treat because symptoms are hard to evaluate and can change from one attack to the next.” Migraine Research Foundation
“Pain comes in all forms: the small twinge, a bit of soreness, the random pain, the normal pains we live with every day. Then there’s the kind of pain we can’t ignore: a level of pain so great that it blocks out everything else, makes the rest of the world fade away until all we can think about is how much we hurt. How we manage our pain is up to us. Pain. We anesthetize, ride it out, embrace it, ignore it… And for some of us, the best way to manage pain is to just push through it.” Grey’s Anatomy * (Suggestions like this are okay but once people tell me I should see the hundredth doctor who specializes in something I’ve tried already but this one is supposed to be the only one who can help and I only need to go there three times a week for a year and he only is three hours drive away and their mother’s neighbour’s cousin’s daughter’s teacher’s aunt’s hairdresser has tried it … uhm, I see red!!!!)
“People who experience migraines feel, see, touch and hear the world differently all the time, not just during an attack.” New Scientist
“The loneliest people are the kindest. The saddest people smile the brightest. The most damaged people are the wisest. All because they do not wish to see anyone else suffer the way they do.” N.N.
“We grieve what we were and mourn what could have been.” Nikki at Brainless Blogger (see below)
“With chronic illness, we mourn who we used to be. We mourn who we might have been. We grieve lives lost and lives never fulfilled.” Nikki at Brainless Blogger

Quotes by my Pain Pals *:
“A migraine is not a headache, it’s more like a HEADQUAKE.“

“Are you a vampire or migraineur?
1. Do you have an aversion to sunlight? *hisss, sun be gone*
2. Does raw garlic make you sick? *i do feel a migraine coming on*
3. Do the site of crosses make you flee? *not that I noticed*
4. Does Holy water burn your skin? *are you saying I need a bath*
5. Does the taste of blood excite you? *I do like my steaks very rare*
If you answer mostly YES, you may have a bigger problem than migraines.” A funny note but it shows what we have to deal with

“I couldn’t sleep, couldn’t move or it would get worse, plus making the vomiting start up again, it was agony! … I wish I could do things that normal healthy people take for granted and not have to pay for it later by getting sick! I wish there was a cure for all invisible illnesses!! I wish there was more empathy! This isn’t what my life is suppose to be like! I am scared my daughter will grow up not knowing how to be empathic towards me or people like me! I hate what this disease takes from me! I am tired of fighting this battle only to get treated poorly when I finally do feel better! It feels like my body can’t take much more! And if I push too hard after I ‘think’ I am better it just comes right back. But what choice do I have? I don’t ask for this pain, I don’t want this pain, and I sure as hell don’t want pity because I get sick. I want understanding, caring and knowledge about migraines! And yes I want help, I NEED help! I can’t do this alone anymore!”
“Please say a special prayer tonight for the man who still goes to work every morning with a smile on his face and comes with a laugh to share. For the man who picks up the pieces when I can’t and doesn’t complain about all the dirty laundry, dishes etc. that aren’t getting done. This man runs errands to pharmacies, to fetch children and dinner and does it with his well known good attitude. He still believes in me, even when I forget to. He never tells anyone his problems, so none of you probably know that he has been single parenting A LOT. If you see him, shake his hand and tell him he is doing a good job. Thanks.”

“Just because you see me posting online doesn’t mean I am feeling better. I am in a ton of pain, but my choices are to sit and cry or try to distract myself. Posting encouragement for others or being encouraged myself is how I face one minute at a time when everything hurts.“

“Migraine: All the side effects of getting drunk but with none of the fun.“

“Migraines don’t kill you.They just torture you enough to wish they did.“

“PAIN is a four letter word!“

“Real happiness is painfree time.“

About unsolicited health advice:

“So, why don’t you go to that doctor that I recommended. It’s only about twice a week for a year, my mother’s neighbour’s cousin’s friend’s daughter’s teacher’s wife did it and it helped her tremendously. And you only have to drive four hours every time. One way, that is …” We’ve all heard this way too often.

“This experience w/ pain has made me waaaay more empathetic. i feel like i understand a world not many ever see or experience. like knowing an alien language.”

“Oh, you have some unsolicited health advice? How about this? I challenge you to 24 hours with my Chronic Illness, while I sit back and observe, I could use the break … and you could CERTAINLY use the lesson!!!“

If you know someone who has chronic migraines and never experienced one yourself, read this:
“I have a migraine attack 28 days a month. I tell you this not for pity or shock value, but to beg for a smidgen of your comprehension. I want you to understand that migraine is not a bad headache, but a neurological disorder that affects every system of the body. You see, the unbearable head pain that migraine is known for is only one symptom of the illness.
When I say “I have a migraine,” I mean that I am horribly nauseated, dizzy, weak, and have flu-like lethargy and fatigue. My legs tremble so much my knees buckle. I cannot think clearly enough to write a coherent sentence, common words elude me, decision-making is nearly impossible. I am overwhelmed by mood swings, including suicidal depression. Light, sounds, smells and touch are magnified beyond annoyance. And the head pain is so severe that even moving my legs while lying in bed causes me to moan in agony. These aren’t all my symptoms, just the most notable. Nor does the list represent all possible migraine symptoms someone can experience  –  I am fortunate in that I don’t have endless vomiting or diarrhea,numbness and tingling in my limbs, temporary paralysis, or loss of vision.
The misunderstanding that migraine is just a headache that can be treated with over-the-counter painkillers and a nap or avoided entirely by not eating chocolate or not getting stressed is not only wrong, but disregards the enormous suffering of the more than 37 million migraineurs in the US. Sure, some people could have a radical reduction in the frequency and severity of their migraine attacks with awareness, preventive medication, and lifestyle and behavioral changes. Many others, like me, strive tirelessly to improve their health to no avail. Chronic migraine, defined as 15 or more headache days a month, at least eight of which are migraine, has its grip on 2 percent of the world’s population. And that’s the bare minimum, some migraineurs have an attack every single day. In addition to the excruciatingly painful migraine days, every migraine also have a recovery day that can put alcohol hangovers to shame.
Again, I do not want your pity or even your sympathy. I want you to have even the tiniest grasp that migraine is not a headache. That your sister isn’t just trying to get out of Sunday dinner. That your coworker isn’t taking the day off to go shopping. That your wife isn’t a whiner who doesn’t want to do housework. Migraine is a real, systemic and debilitating neurological disease that no amount of positive thinking can cure. In fact, there is no cure at all; modern medicine doesn’t even know the full extent of the causes of migraine.
June is National Migraine Awareness Month and today is Chronic Migraine Awareness Day. I’ve been doing a lot this month to raise awareness, but I realized I’ve been preaching to the choir on migraine-focused blogs, websites and Facebook pages. So I’m writing this letter to all of those without migraine. Though you may not personally suffer from the illness, there’s no doubt you know someone who does. If this letter had touched you at all, please let them know that you understand migraine is not just a headache. They may brush you off  –  that’s what you learn to do when you have an illness that’s so often viewed as an excuse  –  but I guarantee they will take your words to heart. And I hope you will, too.”

Migraine related conditions:
1. Prodrome Phase (hours or days before the headache). Irritability. Depression. Euphoria. Fatigue and/or sleepiness. Yawning. Cravings. Stiffness and/or pain in neck. Dizziness. Changes in elimination
2. Aura Phase (minutes to an hour before the headache). Blurred vision. Clouded vision. Tunnel vision. Flashing lights. Dazzling zigzag lights. Eye pain. Numbness and/or tingling (esp. in arms and face). Ringing or roaring in ears. Decreased hearing. Vertigo (imbalance or spinning sensation). Olfactory (smelling) hallucinations. Difficulty finding the right word or words to say. Oversensitivity to being touched
3. Headache Phase. Pulsing, throbbing, or pounding headache. Often on one side only or worse on one side. Can start as a dull ache and get worse. Lasts from a few hours to a few days. Nausea with or without vomiting. Sensitivity to light or sound or both. Pale skin. Prominent blood vessels in temple. Neck stiffness. Vertigo. Tinnitus. Chills and/or Sweating. Difficulty thinking or concentrating
4. Postdrome (lasting up to several days) Impaired thinking. Difficulty concentrating. Less severe head pain. Muscle weakness. Neck stiffness. Fatigue and/or sleepiness. Euphoria. Depression or malaise.
(Headache and Migraine News)

Books:
Baxter, Blodin, Betsy “Migraine Expressions: A Creative Journey Through Life With Migraine”

Bernhard, Toni “How to be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers”
Bernstein, Carolyn & McArdle, Elaine “The Migraine Brain: Your Breakthrough Guide to Fewer Headaches, Better Health” (highly recommended)
Brink, Martin “The Migraine Revolution” Scientifi Guide to Effective Treatment and Permanent Headache Relife. What the current regime does not want your brain to know.
Bush, Catherine “Claire’s Head“

Buchholz, David “Heal Your Headache: The 1-2-3 Program for Taking Charge of Your Pain”
Chino, Allan F., M.D.; Dille Davis, Corinne, Ph.D. “Validate Your Pain!: Exposing the Chronic Pain Cover-Up”
Cowan, Robert “Keeler Migraine Method: A Groundbreaking, Individualized Treatment Program from the Renowned Headache Clinic”
Davis, Stefanie M. “Through the Eye of Migraine”
Fontebasso, Dr. Manuela “Migraine and Other Headaches. Answers at Your Fingertips”Frances, Marian “Migraine: Pain of the Body, Cry of the Spirit”
Frith, Alison “Coping with Headaches and Migraine” 
Greenberg, Lynne “The Body Broken: A Memoir”
Griffin, Shelly L. “The Migraine Deliverance Planner”
Grossinger, Richard “Migraine Auras: When the Visual World Fails”
Hatak “Guided Tour of Hell In the Words of Migraine Sufferers” 
Hutchinson, Susan “The Woman’s Guide to Managing Migraine: Understanding the Hormone Connection to find Hope and Wellness”
Kabat-Zinn, Jon “Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness” 
– “Mindfulness Meditation” **   
Kamen, Paula “All in My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache”
Lane, Russell; Davies, Paul “Migraine“
Levy, Andrew “A Brain Wider Than the Sky: A Migraine Diary“
Lynne, Jean “My Life With Migraines”
MacGregor, Ann; Frith, Alison “ABC of Headache“
Marcus, Dawn A. Bain, Philip “The Woman’s Migraine Toolkit: Managing Your Headaches from Puberty to Menopause”
McCleary, Larry “The Brain Trust Program: A Scientifically Based Three-Part Plan to Improve Memory, Elevate Mood, Enhance Attention, Alleviate Migraine and Menopausal Symptoms, and Boost Mental Energy”
O’Shea, Kathleen “So Much More Than a Headache: Understanding Migraine through Literature”
O’Sullivan, Susan “It’s All In Your Head: True Stories of Imaginary Illness”
Nicholas, Michael; Molloy, Allan; Beeston, Lee; Tonkin, Lois “Manage Your Pain:
Practical and Positive Ways of Adapting to Chronic Pain”
Peterson, Christina “The Women’s Migraine Survival Guide: The most complete, up-to-date resource on the causes of your migraine pain–and treatments for real relief”
Podoll, Klaus “Migraine Art: The Migraine Experience from Within”
Sacks, Oliver “Migraine“
Sepp, Maia “The Migraine Mafia“
Servan-Schreiber, Dr. David “Healing without Freud or Prosac“

Thomas, Pat “Under the Weather – How Weather and Climate Affect Our Health”

Turk, Dennis C. & Winter, Frist “The Pain Survival Guide: How to Reclaim Your Life”

Turknett, Josh & Jenny “The Migraine Miracle: A Sugar-Free, Gluten-Free, Ancestral Diet to Reduce Inflammation and Relieve Your Headaches for Good“

I have not read any of these, yet, but hope to get my hands on one or more of them soon.

Suggestions for more books about this topic are always welcome.

There are so many websites and blogs about migraines, I try to list a few and will add more over time:
“The Spoon Theory” – someone with a chronic disease explains how it feels to someone who is always healthy.
How to understand someone with Chronic Pain.

If you would like to share your migraine journey on our blog, please email your story to kristen@cmaware.org