By

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.

By

Your 30 Things Headache Disorder/Migraine Meme

Your response to the 30 Things About My Invisible Illness You May Not Know meme from Invisible Illness Awareness Week last year was so enthusiastic that I’ve adopted and adapted the idea for Migraine and Headache Awareness Month. Since not all headache disorders are the same, I’ve come up with slightly different lists for different types. If you fit multiple categories, you’re welcome to respond all those categories. Links to each set of questions are available at the end of this post.

You can submit your responses to be published on The Daily Headache. Each one will have a unique URL so you can share it any way you’d like. Directions follow. I’ll be highlighting some answers through Migraine and Headache Awareness Month, which starts June 1.

Even if you don’t wish to share your answers, answering them is a helpful way to think about how having a headache disorder has affected your life in both good and bad ways. Filling mine out made me cry happy and sad tears. It also reminded me of the incredible feat of living with a headache disorder, which made me feel proud.

To post your 30 things on The Daily Headache…

  1. Follow the link below to the set of questions you wish to answer.
  2. Enter your name and email address (neither will be published and I promise I won’t send you spam).
  3. Fill in the title field—it can be as simple as “30 Things About Mike’s Life With Chronic Daily Headache.”
  4. Read through the questions
  5. Find the submission form at the bottom of each list of questions.
  6. Copy and paste the questions and your responses into that form.
  7. Before clicking “submit post,” be sure you’ve filled in every field. Your post will not be submitted unless every field is filled in.
  8. Within 24 hours, I will moderate your submission (to prove it’s not spam) and it will be published as an individual post with a URL you can share. Check the 30 Things Meme category for your post then click on your post title to get the URL.

Links to questions…

30 Things About Your Life With Migraine

30 Things About Your Life With Cluster Headache

30 Things About Your Life With New Daily Persistent Headache 

30 Things About Your Life With Chronic Daily Headache

30 Things About Your Life With Tension-Type Headache

30 Things About Your Life With a Headache Disorder

I hope I haven’t made this too complicated in the name of inclusivity! Please let me know if you have any questions. Many thanks to Invisible Illness Awareness Week for this great idea.

By

A Health Insurance Rant

health-insurance-rantTearing up over a headline on the cover of People magazine, which I happened to glance at when I walked past it at the pharmacy, was the telltale sign that depression symptoms had returned. I was already pretty sure they were back, it’s why I was at the pharmacy.

Although I was perfectly mostly happy with Wellbutrin, I had to reduce my dose because, thanks to a migraine attack, my brain is now so sensitive to Wellbutrin’s side effects that I am massively dizzy on the dose that manages my depression. Cutting my dose back, the dizziness finally became manageable (though still present) on Monday… at the same time it stopped keeping the depression at bay.

I’m already frustrated by the needs of my ever-changing brain, but I was hopeful a new antidepressant would help me balance all my competing needs. Or I was until my insurance denied coverage. Now my doctor has to jump through constantly moving hoops to prove that, yes, this is the drug I need.

While I wait to see if her appeal will be approved, I can either be so dizzy that I can’t move my head and can’t look at the computer or I can let my depression symptoms build so that I have no motivation to get out of bed and cry at everything. Either way, I can’t work, can’t run errands, and can’t do anything around the house. I could try another yet another generic antidepressant, though I’ve already tried many, and would have to decide which I prefer, potentially gaining a ton of weight or losing interest in sex.

I don’t have much faith in my doctor’s authorization being accepted. Since the first of the year, Hart’s been working on a getting a doctor’s authorization approved for a drug that I was told would definitely be covered under our plan. It’s a drug he’d been taking for months, paid for by the same insurance company, until the rules changed with the turn of the calendar page. Now he’s without a drug he needs. There is a replacement, a replacement that he’s already tried. Last time it increased his migraine frequency so much that I lost sleeping worrying that he was developing chronic migraine.

I miss the days when my doctor and I got to weigh all the relevant medical factors and decide which medication was right for me. Yes, I could pay for these drugs out-of-pocket (assuming I could afford them), but I already pay a small fortune for health insurance each month. Being told a service will cover what I need, tethering myself to that service for a year, and still having to wheedle and cajole to get what that service supposedly includes is absurd. Especially when all that time spent on the phone and submitting paperwork is unlikely to result in me getting the coverage I thought I was paying for. Tell me up front whether the treatment I need will be covered so I can make a fully informed decision, don’t lock me into something then change the rules.

That’s what I’m angriest about. I understand why insurance companies don’t cover certain drugs or treatments. Yet I did everything I could possibly do to make an informed decision, including 17 hours of research, questions for my insurance broker, and hours on the phone with the insurance company. Now I have a yearlong commitment to a health insurance plan that’s not providing the coverage I was assured they would provide.

I get that health insurance is a mess right now. I get that companies are scrambling to make a profit now that they have to provide coverage to people like me. And I am grateful to be able to have any insurance coverage for my entrepreneur/freelancer household. But how is that companies are able to provide only basic information for a consumer to use to choose a plan, give half-truths (or lie outright) when asked questions, then delay coverage for months? I can’t think of another consumer service that operates this way successfully. Certainly not one that requires a commitment to paying thousands of dollars over the course of the year, then telling the customer, “Oh, wait, we’ve changed our minds.”

How is this OK? How can that happen without repercussions?

By

Migraine Research Underfunded

U.S. medical research funding is decreasing and some diseases are horribly underfunded, according to a report published in the Journal of the American Medical Association (JAMA) last Tuesday. When it comes to migraine research, The Washington Post’s headline on the report is telling: How the U.S. Underfunds Research for Migraines, Asthma and Depression. As headache specialist Robert Shapiro, M.D. (@headachedoc) pointed out on Twitter, no major disease is as underfunded as migraine is. It’s “almost off-the-charts.” Literally. Take a look at where migraine appears on this chart.

In a related tweet, Dr. Shapiro notes that although migraine and schizophrenia have the same disease burden, NIH funding for schizophrenia is 12 times higher than it is for migraine.

It’s impossible to read those numbers and not get angry. Especially knowing these numbers:

  • Given current population statistics, nearly 38 million Americans have migraine.
  • As many as 15 million Americans have chronic migraine.
  • Migraine costs the U.S. more than 29 billion dollars a year in medical expenses and lost productivity.
  • Migraine is by far the most disabling of all neurological disorders.
  • Migraine is the third most common disorder on the planet.
  • Migraine is the seventh highest cause of disability worldwide.
  • Severe, continuous migraine is as disabling as quadriplegia, active psychosis, and dementia and is more disabling than blindness or paraplegia, according to the World Health Organization’s disease burden assessment.

Migraine is not a measly little headache. It is not inconsequential. I have lived with the devastation of severe, continuous migraine. I often wondered if it was a life worth living. Too many people with chronic migraine decide that it isn’t. Will lawmakers ever see our desperation and need? If so, will they ever act on it?


References for migraine stats:

 

By

Giving Tuesday: Please Support the 36 Million Migraine Campaign

For Giving Tuesday, please consider donating to the 36 Million Migraine campaign — even $1 donations are extremely valuable. The campaign is to raise money for research, of course, but it’s also about showing lawmakers how many people are affected by migraine. The more people who donate, the more apparent it is that the allocation of research dollars impacts real people whose lives have been altered by migraine.

You can make your donation here. Donations can be designated in honor of a mentor or loved one. You can also donate using American Express reward points. And, if you work for a company that matches donations, you might be able to double your donation. All the details are available on the 36 Million Migraine donation page.

(By making a donation, you will be signed up for a weekly educational email from the American Headache Society. That was a bonus for me, but you can easily unsubscribe if you don’t want to receive it. They’ve never sent me requests for additional donations.)