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Runnin’ for Research: Raise Money for Headache Disorder Research

runnin-for-researchOctober 8 is the date to participate in Runnin’ for Research! Three cities will host a 5K run and one-mile walk to raise money for research into headache and migraine disorders.

Runnin’ for Research was established as a 501(c)(3) nonprofit in 2015. It’s mission is to further “research, awareness, empowerment and advocacy in all areas of headache and migraine disorders.” The organization raised donated $17,434 to the American Migraine foundation in 2015 and $6,313 to AMF in 2014. Dr. David B. Watson, Teri Robert, and Dr. Brian Plato lead Runnin’ for Research.

Here are the details on this year’s races:

Date: Saturday, October 8
Sign-in Time: 8 a.m.
Walk/Run Time: 9:30 a.m.
Registration: $20 (T-shirts are guaranteed for everyone who registers for an in-person race before October 1.) To register, click on the city names below.

  • Kansas City/Parkville, Missouri: English Landing Park, Parkville, MO, 64152
  • Morgantown, West Virginia: Cheat Lake Park, Morgan Run Road Morgantown, WV, 26508 (The course is a packed limestone trail that is largely flat and shaded. It runs along Cheat Lake.)
  • Louisville/Jeffersontown, Kentucky: Sky View Park, 10416 Watterson Trail Jeffersontown, KY, 40299 (The course is a mostly flat asphalt trail.)
  • Virtual Race: Sign up as a virtual runner if you’re unable to attend a race (use any of the registration forms linked to above). You can run or walk in your hometown that day or just donate your registration fee to support this great cause. Virtual runners will not receive T-shirts.

Questions? Visit Runnin’ for Research’s website or email RunninForResearch@yahoo.com for more information.

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Quick Survey on The Daily Headache

survey-on-the-daily-headacheCan you help me with something? I’m trying to figure how to best sum up what I write about. Everything I come up with sounds flat and academic. I have a couple questions:

  1. How would you characterize what you read about on The Daily Headache?
  2. What topics do you most enjoy reading about on The Daily Headache?

You can leave your comments below, on social media, or by emailing
kerrie[at]thedailyheadache[dot]com. Answer either or both. Thank you!

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30 Things for Migraine and Headache Awareness: Share Your Story!

Share your story! 30 Things Migraine and Headache Awareness MemeRaise migraine and headache awareness by sharing your 30 Things! Here’s how: Instructions and Submission Form for 30 Things for Migraine and Headache Awareness

Curious about other readers’ stories? Here are all the 30 Things posts (in reverse chronological order) from this year and last.

30 Things posts have been coming in even though I haven’t promoted the project this year. Since readers are obviously eager to share their stories, I’m publishing this as a new call for submissions. I’ve updated the questions some from last year. All responses are welcome—whether you’ve never answered the 30 Things or did in 2015 and would like to take stock again this year. Here are my 2016 responses (and my 2015 ones):

Kerrie’s 30 Things About Life With Migraine

1. My diagnosis is: chronic migraine

2. My migraine attack or headache frequency is: daily (every time I eat unless I eat snacks that are 90% fat, no more than 270 calories, at least two hours apart, and contain a specific set of 10 foods)

3. The first migraine attack or headache I remember was: in class in the fifth grade. The teacher’s workroom off my classroom smelled of rose potpourri. I probably had attacks before that, but that’s the first one I know was a migraine attack. That smell still makes me panic nearly 30 years later.

4. My pain levels range from: Currently they range from a 2-4, with the very occasional 5. This is with a cocktail of preventive medications and supplements, continuous hormonal birth control, severe diet restrictions, and digestive enzymes. Before I found this regimen, the pain was regularly a 7-9 with some level 10 attacks (though I’m reluctant to label any of them a 10 for fear of tempting fate)

5. I was diagnosed in: 2002

6. My comorbid conditions include: depression, otherwise I’m remarkably healthy.

7. I take 21 pills (three different supplements/drugs) each day for prevention and 3 or 4 pills (two or three different drugs) to treat an acute attack

8. In addition to pain, other symptoms I experience include: fatigue and cognitive dysfunction are the worst; the list of other annoying, but not disabling symptoms is too long to tackle—it includes tooth pain, ear aches, cold feet, and frequent urination.

9. Treatments I have tried include: four dozen preventive meds and supplements, dietary changes, Botox, acupuncture, occipital nerve stimulator, Cefaly, Spring TMS, nasal surgery, TMJ surgery, a mouthguard, essential oils, organic food, acupressure, massage, Reiki, Chinese herbs (including scorpion tea), yoga, digestive enzymes… if you’ve heard of it, I’ve almost certainly tried it.

10. During a migraine attack or headache, I: have no energy and can’t think clearly.

11. My migraine attacks or headaches are triggered or get worse when: I eat or am exposed to odors. Currently, I get one almost every time I’m in a public place.

12. The most frustrating part about having migraine or a headache disorder is: not being able to function at the level I know I’m capable of.

13. Having migraine or a headache disorder causes me to worry about: every single thing I eat or drink (sometimes I even worry that water in a different city will be a trigger).

14. When I tell someone I have migraine or a headache disorder, they usually assume or say: “I’m sorry, me too” or “My friend/cousin/partner has migraine—it’s way worse than just a headache.”

15. When I see ads or articles about migraine or headache disorders, I think: the misinformation seems to be increasing exponentially.

16. My best coping tools are: mindfulness.

17. I find comfort in: reading, writing, my loved ones.

18. I get angry when people say: “It’s just a mindset” or “Think positive.”

19. I like it when people say: “You don’t have to talk about it if you don’t want to.”

20. Something kind a person can do for me during a migraine attack or headache is: ask me if I want company or to be left alone, and not ask a thousand times how I’m feeling.

21. The best thing a doctor has ever said to me about having migraine or a headache disorder is: “I will never give up on you.”

22. Having migraine or a headache disorder has affected my work/school life by: changing it entirely. I can only work sporadically, which is frustrating. But I’ve been pleased to discover that writing, which was a peripheral skill in my pre-disability world, brings me great joy.

23. The hardest thing to accept about having migraine or a headache disorder is: not having control.

24. Having migraine or a headache disorder has taught me: experiencing an emotion is a lot easier than running from it.

25. The quotation, motto, mantra, or scripture that gets me through hard days is: I’ve done the impossible before, I can do it again.

26. If I could go back to the early days of my diagnosis, I would tell myself: try a wide range of treatments before even considering surgery.

27. The people who support me most are: my awesome husband, family, friends, and readers

28. The thing I most wish people understood about migraine or headache disorders is: it’s nothing like getting an occasional headache.

29. Migraine and Headache Awareness Month is important to me because: the social stigma (from friends, family, coworkers, supervisors, teachers, and even health care providers) magnifies the physical symptoms.

30. One more thing I’d like to say about my migraine or headache disorder is: finding a therapist I click with has been invaluable. I have learned to get through a migraine attack without hating the fact that I’m having one, or stressing about everything I’m unable to do, or obsessing about what I could have done to trigger it.

 

 

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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.