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Migraine Stories: From Chronic Migraine to Advocate & Fundraiser

migraine-fundraiserKatie has turned living with chronic migraine into a chance to help others and raise awareness about the disease. In addition to starting a support group for people with migraine called Migraine IDAHO, she is hosting the second annual Haturday for Heads fundraiser. Haturday for Heads has already raised $740 for the Migraine Research Foundation through online hat sales (sorry, they’re sold out!) and will be hosting an in-person event in Boise this Saturday, April 23. The Boise event will be from 2 to 4 p.m. at BBQ4Life, which will donate a portion of food sales to migraine research. You can also enter to win some great raffle prizes at the event. If you can’t attend in person, Katie encourages you to share your story on social media (tagged #haturdayforheads2016) or donate to Haturday for Heads on CrowdRise.

Get to know Katie and learn more about Migraine IDAHO and Haturday for Heads in this interview she kindly did with me:

Katie’s migraine story

I remember my head hurting as a young kid, especially in the summer time and having to lay on the couch. But I don’t think I had true migraines until my teen years. Around 15 then got to a point that I decided I need to see someone. We (my parents and I) started with the eye doctor to rule out any vision issues, when my vision ended up at 20/20 we moved on to a neurologist. When I had my fist visit he asked me a question I will never forget, “When was the last time I did not have a headache?” I could not answer, I thought about it and could not remember the last day that I did not have some form of head pain.

He strapped the diagnosis of chronic daily headache with migraines on me and decided that we were going to shock the daily headaches into stopping. I spent a day at a outpatient facility having some drugs pumped into me with an IV. I do not remember what it was all I know is it made me nauseous and I vomited multiple times. It was such a terrible experience that when he asked me if it worked and my headache had stopped, I lied and said yes so that I would not have to do it again. From there over the years I tried different things, other neurologist with preventives, chiropractors, digestive health. Nothing has yet to work well.

I have had a few years here and there where my migraines and daily headache have been better and I managed without any medication. Now I have my baseline headache everyday, around a 2-4, with migraines anywhere from 3-7 days a week. I don’t get an aura, I do have sensitivity to light and noise. Most of the time my migraine is on both sides, but can be more intense on the right. I rarely get nausea, which is good because the few times I have, I ended up in the ER because the nausea was uncontrollable. Fatigue is also a big symptom for me.

What Katie wishes people understood about migraine

I wish that people understood that I did not choose this. That I am not lazy, that my house is messy sometimes because I am exhausted and it hurts to bad to move. I want people to realize that this is a disease and there is not a cure, I may find something that provides relief but I still have this disease/illness, it will not magically go away.

The motto that helps Katie cope with chronic migraine

One day at a time.

About Migraine IDAHO

Migraine IDAHO is a community, a group for sufferers to have support. A group to help raise awareness and provide education and resources on migraines. Right now there is a closed support group on Facebook. It started after I had found some national migraine support groups on Facebook. I always had felt like I was alone with migraine growing up. I felt like I was the only person who was experiencing this kind of pain. Once I got on Facebook and found others like me, it really helped learn more about my disease and accept it. So I wanted to create in Idaho a group that I never had, a place where that young girl, and all sufferers, were not alone. Eventually I hope the Migraine IDAHO can hold in-person support groups, do educational talks at school and businesses about migraine, and continue to raise funds for research.

About Haturday for Heads

Haturday for Heads is a migraine awareness and fundraising event. All the proceeds go to the Migraine Research Foundation. This year there was an online design contest for the hat design, hats that could be purchased on worn on April 23, and then an in person event at BBQ4Life. [Hat sales are over for this year, but follow Migraine IDAHO on Facebook so you can be sure to get one next year.]

For the last 4 or 5 years I have wanted to do some sort of event for that would help raise awareness and educate about migraines, raise funds for research, and strength the migraine community. I had communicated a few times with some of the folks at Miles for Migraine about getting a race here in Boise. The manpower needed and the logistics have not lined up yet, and I say yet because having a Miles for Migraine race here in Boise is still a goal for Migraine IDAHO. Anyways, I had the desire and want to do a event, I just needed a catalyst to make it happen.

I was back in school at Boise State University to finish up my bachelor’s degree and one of the last classes I took was Communication in a Small Group. We were put into small groups and our semester project was to do something that make a change in the community. When I heard what our assignment was, I instantly knew that this would be my opportunity to do an migraine event. It took some persuasion on my part, but I was able to get my group on board with the idea.

We only had two months to organize and our event in class so we keep it pretty simple. We had it at BBQ4Life and had a few silent auction items and a few of us made silly hats to wear. We raised around $200, which was great. After the event last year I had someone tell me that they were asked, “When are we going to have a Haturday for Heads in our city?” That got me thinking that I needed to make this a national if not worldwide event, and why not, migraines are all around the world. So I thought a good way to be able to include people everywhere would be to have a hat designed just for Haturday for Heads and people could wear it the day of the event and post pictures online. This way anyone anywhere, even the ones of us in bed with a migraine could participate.

I have already surpassed a lot of my goals for this year. We had some great designs submitted that were voted on. And then when the hat was available to purchase, we ended up selling 42 and raised $720. We still have the in person event at BBQ4Life, if would be great if we raised some more money, but for me the big goal there is to have awareness in the local community increased.

I have big dreams and goals for future years. This year we had people across the nation purchase a hat, next year I would love to see people internationally involved. In following years I would like to see some in person events happen in other cities. Also, if the Haturday hashtag became one of the top used tags, that would be awesome!

How you can participate even if you don’t live in Boise

Anyone who purchased a hat can post pics the day of the event with #haturdayforheads2016 to all social media sites. If you didn’t get a hat purchased in time, you can donate to the Haturday for Heads CrowdRise page. Also, if people comment, share, and post about Haturday for Heads they can be a part of it and help spread awareness. It would be great to see the internet explode with #haturdayforheads2016. Be it post in their hats, or just post about themselves and how migraine has affected them.

I am hoping I can do a live video post on Facebook at BBQ4Life, if so it will be on the event page.

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Readers Speak: Reflections on Acceptance

Thank you for your thoughtful responses on acceptance! I’ve loved seeing your thoughts on a topic so close to my heart.

Only three of you balked at the idea of acceptance. For a couple of you, it was seen as as giving up the search for effective treatment.

Debbie: “I’m not there yet after 35 years. I can’t accept this is going to be the rest of my life! I search regularly and often for answers.”

Rowena: “I’m also going on 30 years with chronic migraine and I refuse to accept that this is how my life will always be.”

The third dissension also defined acceptance as resignation, but believes that her anger about migraine is what motivated her to find relief.

Bibi: “Not accepting my migraines—being innerly infuriated about how much good time was stolen from me made me motivated to change my lifestyle, diet and how I arrange my work life. It can be hard to accept once in a while, that I have to maintain this healthy lifestyle to stay free of the migraines for longer stretches. Like a diabetic I have to avoid things, else my body gets totally out of balance. This was hard to accept in the start, because I felt sorry for myself not being able to eat chocolate and a lot of other foods or to binge on computer watching at night. I try to treat myself with different ‘goodies’ now, when I want to have a good time now. Perhaps saints can accept the crippling, depressing attacks—I couldn’t.”

While our motivators may be different, I don’t think those of us who accept migraine are saints, nor do I believe we are complacent about the “crippling, depressing attacks.” In fact, everyone who wrote about embracing acceptance also said the continue to try to find relief, either by trying new treatments or managing triggers.

Newfoundlander: “I, too, have found that acceptance has been very important to my life quality. It has allowed me to grieve deeply about the life I don’t have. Unloading that heavy grief has lightened my emotional load, so life is better, even if the daily migraines are not. Simultaneously, I keep one foot in the door of hope. Hope for medical advancements, hope for new insights, hope for miracles for us all. That keeps me researching new possibilities. This balance of acceptance and hope is the best approach for me so far.”

Natali: “My most recent and potentially final liberation from the torment of migraines is exactly the same statement of acceptance. That doesn’t mean that I don’t (still!) try new medications or new treatments, it doesn’t mean that I have lost hope and have totally surrendered to a life of doom and gloom…. Acceptance of some short shifts the power back to the individual, you are no longer at the mercy of migraines…. [it] is not about defeat, pessimism or giving up. It is the start of rising from the ashes like a phoenix. It is a very spiritual and pragmatic means of reclaiming one’s own inner strength. I only wish, I had embraced the idea of ‘just accept it’ earlier in my life, to save myself endless days and nights of hellish desperation and pain.”

Lisa: “I think acceptance can easily live next to still being open to what may help…. Well maybe not easily. It takes work, but it’s possible.”

Dawn: “Yes. This has been the biggest help in my life. I still keep my ears open for ideas, but my life isn’t about the search anymore.”

Trish: “I agree that it is a healthy place for me to be when I can accept that I will always have migraines…. If there comes a day that a cure is found or something else works for me, hallelujah!!! Until then, I do have them, I just need to get on with this thing I call life.

Alicia gives a great example to differentiate acceptance from resignation:

“Eckhart Tolle in The Power of Now makes an important distinction between acceptance and resignation. Acceptance is where you are right now in the present moment. He gives an example of being stuck in the mud. If you’re stuck in the mud, you don’t necessarily have to like it or resign yourself to being stuck in the mud. But until you acknowledge that you’re stuck in the mud, you really can’t take necessary steps to get out of the mud. I think that I can accept that migraines are a part of my life. But I don’t necessarily resign myself to them. In the present moment, even if I have a migraine, I try to accept it and then do the necessary things I can do to abort it or prevent one in the future. Acceptance means not adding extra suffering to the physical pain of the migraine, such as resisting it with phrases such as “I wish this weren’t part of my life”,” this will be my life forever,”” I hate this pain, etc.” Changing the way I think about it has given me a lot of relief—after all the psychological aspect of having migraines can be just as devastating as the physical aspect.”

This response is in a similar vein to Acceptance, Not Resignation, a Migraine.com article I wrote, which several readers mentioned in their responses. I still agree with what I wrote several years ago:

I will never be migraine-free.

You may read that sentence as resignation or giving up on trying to improve my health. For me, it represents acceptance and it feels a world away from resignation.

I haven’t given up on finding an effective treatment—I’m always trying new options and constantly tweaking my regimen—but I have given up on the idea that my life can only be good if I’m migraine-free. And by accepting that I will always have migraine, I have lessened its control over me.

The reader who asked the question about Larissa’s comment emailed me after reading some of your responses. He said he thought that maybe the difference was semantic, so I pointed him to the Migraine.com article. After read it, he agreed that we were using different words to describe the same approach.

This is only a sampling of the responses. You can read more in the responses to On Accepting Migraine: Your Thoughts? and in the Facebook discussion.

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Migraine Moments Short Film Contest

Do you want to share your perspective on migraine with health care providers (including headache specialists), research scientists, and patient advocates? Migraine Moments, the American Migraine Foundation’s short film competition, is your chance to do just that. According to AMF’s website, the goal of the films is to “convey many powerful and complex ideas about migraine and people with migraine—the pain and burden of course, but also the struggles and triumphs in finding relief and help from treatments and doctors, family and friends.”

Entries, which are due by April 1, can be any sort of original video you’d like to create: documentary, music video, animation, simulations, visualizations, fiction, performance art, interpretive dance… whatever feels like the best way for you to convey your experience with migraine. Be as creative as you like, as long as the video is a finished work of your own creation that’s no longer than five minutes. Entries will be judged by members of the American Headache Society’s electronic media committee and board of directors.

The first place winner will receive $2,500 and a trip to San Diego to present their work at the American Headache Society’s meeting on Friday, June 10, 2016. The second place winner will receive $1,000 and the third place prize is $500. Winning entries will also be promoted on social media and AMF’s website.

Check AMF’s website for the Migraine Moments official contest rules and entry form.

Don’t fret if you don’t have time to get your entry together by this year’s deadline. AMF plans to turn this into an annual event.

(Wondering why the winners will be presenting at the American Headache Association’s meeting when the contest is sponsored by the American Migraine Foundation? The two groups are part of the same organization. The American Migraine Foundation is the fundraising branch of the American Headache Society. AMF is the force behind the 36 Million Migraine campaign.)

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Showing Others What Migraine is Like in a Game

14 DaysWe’ve all wished we could place someone else in our migraine shoes so they can see what it’s really like to juggle the demands of the illness. 14 Days, a tabletop game, is attempting to do just that. In this two-person game, players try to manage their time and responsibilities in a two-week period never knowing when a migraine will strike. When a migraine hits, they then have to decide if it’s worth taking meds from a limited supply and what falls through the cracks.

14 Days is a narrative game. The Kickstarter description explains it as: “On migraine days, the other player will ask you a question about how migraines impacted your day. Something like, ‘Who felt let down by you today?’ ‘What promise did you make to yourself today?’ and ‘What new ‘cure’ did someone share with you today?'” Reading that description, I thought, A game that requires me think about how I let people down? No thanks, I already do that every day. But my gut reaction was overshadowed by the games tremendous potential for awareness-raising.

The game provides the chance to really talk about the difficulties of managing migraine (or many other chronic illnesses) and to let someone experience, to a small extent, the daily frustrations we face. Then it encourages players to talk about the impact of migraine and how we cope. In an interview I did with Hannah Shaffer, the game designer, she said that playtesting the game has helped her talk about migraine in ways she never could before.

All that and the game looks like it will be fun, the artwork is gorgeous, and it helps support another person with migraine who is doing great work to raise awareness.

Learn more about the game and hear more from Hannah in my writeup on Migraine.com: Putting Others in Your Migraine Shoes… With a Game. The Kickstarter campaign for 14 Days runs through July 28—just four more days. Pledging $8 will get you a PDF copy of the game when it is released; $25 will get you a full boxed version. With 259 backers, Hannah and her team have met their initial goal; now their stretch goals are within reach. Even if supporting the game isn’t in your budget right now, it’s worth taking a look at this creative approach to raising awareness about the impact of migraine.

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American Migraine Foundation’s Blog a Day

The American Migraine Foundation (the group behind the 36 Million Migraine campaign) celebrated Migraine and Headache Awareness Month with daily featured posts from five different migraine bloggers. It was a ton of great information and I was honored to be chosen to participate. The other bloggers who participated were Lisa Jacobson from The Daily Migraine, Sarah Hackley from The Migraine Chronicles, Michelle Tracy from The Migraine Warrior, and Anna Eidt from Brain Storm. (Check out their great blogs!) If you didn’t get a chance to see all the posts, they’re worth a look. Here’s the lineup:

  1. Moms and Dads With Migraine (Lisa)
  2. Early Second Trimester Migraines (Sarah)
  3. Dehydration as Migraine Trigger (me)
  4. Chronic Caregiver (Michelle)
  5. On chronic pain and depression (Anna)
  6. Migraine-15 Steps to Create and Environment Conducive to Wellness (Sharron)
  7. When in Doubt, Nap: 64 Inspirational Quotes from Chronic Pain Sufferers (Lisa)
  8. An Open Letter to My Pre-Migraine Self (Sarah)
  9. Migraine Hangover (aka Postdrome) (me)
  10. A Vanilla Cupcake and a Whisper (Michelle)
  11. Cures (Anna)
  12. Migraine: ‘I am a Person, Not a Diagnosis’ (Sharron)
  13. TMJ and Migraine (Lisa)
  14. Coping With Occipital Neuralgia Without Medication (Sarah)
  15. Sleep, Schedules, and Migraine (me)
  16. Chronically in Love: The V-Day Edition (Michelle)
  17. Migraine ≠ Headache (Anna)
  18. Migraine: What’s Stress ‘Let Down’ Got to Do With It? And Did Someone Say Stress-Management (Sharron)
  19. Heat+Glare+Sun=Migraine (Lisa)
  20. no post today
  21. Managing Your Migraines in the E.R. (Lisa)
  22. I’ve Always Depended on the ‘KID’-ness of Strangers — Talking to Children About Chronic Migraine (Michelle)
  23. On Thriving With Chronic Migraine (Anna)
  24. Effective Use of Medications for Migraine Relief — 5 Ways to Overcome Unmet Needs and Improve Our Treatment Outcomes (Sharron)
  25. Are You a ‘Spoonie’? (Lisa)
  26. 32 Bizarre Migraine Treatments (Lisa)
  27. Sunny Weather = Fewer Migraines? The Everlasting Hunt for Triggers (me)
  28. From Migraine to Mygraine (Michelle)
  29. On Pondering Parenthood With Chronic Pain (Anna)
  30. A Role for Integrative (Complementary) Therapies in Preventing the Progression of Episodic to Chronic Migraine, and Remittance (Sharron)