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Out of Comission

My health has been on a steady slide since June. I’ve spent the last six weeks mired in horrendous fatigue. I cannot think and can barely function. My frustration is high. I’m scared of what’s to come and grieving for what I’ve lost. Overall, I managing to stay relatively optimistic and present in the moment, but I have some bleak times.

There’s more to tell you than I’m able to write. I’ll leave you with the best news I have right now: a gastroenterologist has finally agreed to see me. There has to be a reason I get a migraine every time I eat; whether or not that reason can be found remains to be seen. My appointment is on October 6 and I see my headache specialist on October 7.

 

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Crowdsourcing: Migraine Aura While Asleep

Hart dreamed he had a visual migraine aura and woke up with a migraine. My guess is it wasn’t just a dream, but he was seeing the aura while asleep. Since an aura originates in the brain, not in the eyes, this seems logical to me, but I can only find one article about it. Based on two case studies, the authors say that geometric patterns from visual auras can be incorporated into dreams. I assume that dreaming you have an aura is a literal, direct incorporation into the dream, rather than the more abstract idea the article mentioned.

I’m really curious about this and can’t test it out on myself (since I have, fortunately, not had an aura outside of that terrible weekend). I have vivid dreams and nightmares during migraine attacks, but don’t think they usually precede attacks, and I don’t have a visual aura at all. So I’m crowdsourcing. Do you have auras in your sleep, either like the typical visual auras you get when awake or bad dreams?

 

 

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Soaring Prescription Drug Prices: Pharmaceutical Companies Pressured to Justify Pricing

Drug Prices Soar, Prompting Calls for Justification

prescription_drug_pricesWhat a welcome headline from the New York Times. The cash prices of prescription drugs have always seemed eye-poppingly expensive, but in recent years, the pricing is closer to heart-stoppingly exorbitant. (Obviously that’s hyperbole, but it feels close to the truth. I’ve been researching triptan costs this week. Treximet, a combination of a (relatively) inexpensive generic triptan and an OTC painkiller, costs $71.10 per pill! That’s with a discount with a prescription card.)

Pressure is mounting for pharmaceutical companies to disclose drug development costs, profits for specific medications, and how prices are set, according to the New York Times article. It’s coming from a wide range of sources: doctors, patients, patient organizations, state and federal politicians, the U.A.W. Retiree Medical Benefits Trust, and even Bill Clinton. At least six states have introduced bills in the last year to require drug companies to justify pricing.

More than 100 prominent oncologists call for a grassroots movement to stop the rapid price increases of cancer drugs in an article that will be published in the journal Mayo Clinic Proceedings tomorrow. “There is no relief in sight because drug companies keep challenging the market with even higher prices. This raises the question of whether current pricing of cancer drugs is based on reasonable expectation of return on investment or whether it is based on what prices the market can bear,” they wrote. Although the focus is cancer drugs, these problems apply to all prescription drugs.

Unsurprisingly, pharmaceutical and biotech companies are balking. You’ve heard the explanations: research and development is expensive, something has to cover the cost of all the drugs that don’t make it to market, and  drugs can lower health care spending in other areas. That’s not the whole story, of course. This anonymous comment from the director of a multiple sclerosis drug developer is telling: “We all look at each other and keep pace with each other. Honestly, there is no science to it.” There’s also the fact that Medicare is legally barred from negotiating drug prices—they must pay whatever drug companies charge.

I’m probably more sympathetic to pharmaceutical companies than many patients are. Drug development is expensive and some drugs have a narrow market limited by a small number of patients with a disease. Publicly traded companies have to earn profits.

And yet. How much of pricing is determined by the fact that the person recommending the drug and the one taking the drug usually don’t even know how much it costs? How much of it is price gouging simply for the sake that it can be done? This article only addresses brand name prescription drugs; generic drug prices are also ridiculously high (and rising).

The media has been covering high prescription drug prices with increasing alarm over the last few years. This coverage and awareness-raising are critical first steps, but what do we do next? How can patients fight back? We can sign this petition, which is focused on cancer drugs, and email our state and federal representatives. But what else? I want to DO something, not wait for lawmakers to maybe, hopefully fix the problem. Boycotting the drugs feels like our only potential source of power. Even the most principled of us are unlikely to forgo medication we need to function or live to make a point. I feel trapped and powerless… which, for pharmaceutical companies, is the perfect place for patients to be.

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14-Year-Old Raises $12,110 for Migraine Research

Daisy Griffin, a 14-year-old who has chronic migraine, raised $12,110 for migraine research by sailing alone across the Long Island Sound. She will donate 100% of the money raised to the Migraine Research Foundation.

Daisy’s Migraine Story

Daisy has had severedaisy_griffin_sail migraine attacks since she was four, which have progressed to chronic. Like so many of us, she has tried a slew of treatments, from medications to supplements to yoga to biofeedback. She’s had two in-patient hospital stays to treat migraine. Thanks to a couple preventive medications, she’s feeling better now, but still has a headache every day and migraine attacks at least a few days a week.

When I asked what she wished people understood about migraine, she said, “I really wish that people would get that I’m not just having a headache. I have a headache all the time and a few times a week it becomes a severe migraine. A lot of times people tell me how lucky I am that I miss school all the time. I actually feel lucky when I can make it to school, or even when I can get out of bed.”

Sailing for Migraine Research

Daisy has been sailing avidly since she was eight years old. It’s one of her great passions and she fears chronic migraine could force her to give up. Since she’s been feeling better, she sees this sailing trip across the sound as “sort of like me saying: Take that migraines! I can still do what I love!”

Daisy sailed an 18-foot spinnaker, the largest boat she’s ever sailed by herself. The sailing itself was much easier than she expected because the wind wasn’t very strong. But little wind also made for, in Daisy’s words, a “loooong” trip.

Having chronic migraine meant that Daisy’s trip could have be derailed by the ever-present threat of another attack. She was hopeful that even if she had a migraine attack, sailing would distract and relax her, as it usually does. To prepare, she made sure she got enough sleep and drank a lot of water before the trip. It worked! Daisy’s head hurt a bit, but she didn’t have a migraine attack. (Her father trailed at in a motorboat, so she could radio him for help if she had an attack. But she didn’t need to.)

Fundraising

In addition to the sailing trip, Daisy has raised awareness and donations through a booth at local fair (where she hosted a migraine trivia game) and a lemonade stand with her siblings and cousins. She wrote to groups and individuals to solicit donations and publicize her trip. A generous donor agreed to double the amount that she raised, which brought the total to $12,110.

You can still donate to Daisy’s campaign and the Migraine Research Foundation through CrowdRise.

Way to Go, Daisy!

I’ve never met Daisy, but I’m tearing up as I write about her accomplishments. Much of her young life has been dominated by migraine. Instead of trying to forget about migraine as soon as she felt better (as most of us would have done whether 14 or 57), she threw her newfound energy into raising awareness and funding for research. Her efforts took remarkable dedication and resourcefulness. It’s an impressive feat at any age.

Learn more about Daisy and her trip on her website, Sail for Migraine Research.

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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.