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.)


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.


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 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.


8 Ways to Manage Insurance Triptan Limits

insurance_triptan_limitsAs expected, none of you were surprised that people with migraine don’t take triptans for every attack. Although there are many reasons for this, insurance triptan limits keep most of you who commented from getting enough meds to last the month. If you’re in the group whose doctors would prescribe more*, but your insurance company won’t cover them, here are some ways you might be able to increase the number of triptans you get each month. The first four can be done at no additional cost to you; the last four will cost additional copays or have an out-of-pocket cost.

1. Try filling a higher quantity prescription: Not all insurance companies have limits. On an old insurance plan, I was able to get 60 tablets a month for the cost of two copays. Coverage like this appears to be more common with company insurance plans, rather than individual ones, but it’s always worth a try.

2. File an insurance appeal: Insurance companies have a process for doctors to request on override on medication limits. Call the company to find out exactly what information they need and provide it to your doctor. Your best bet is to only ask for a small increase in the number of meds each month. My doctor requested 30 and my insurance company told me they would probably have approved 12, but 30 was way too many.

3. Split pills: Some triptans can be split. Whether or not this will work for you depends on the drug itself, your dose, and your other health requirements. Do not do this without first consulting your doctor!

4. Use tablets: Injections, nasal sprays, and dissolving tablets cost insurance companies more than tablets and are often more limited in quantity. If triptan tablets work sufficiently quickly for you, check to see if your insurance company will allow you more tablets than other forms.

5. Double the copay: Ask your insurance company if you can get the same prescription twice with two different copays. If you normally get six triptans for $15, you might be able to get 12 for $30.

6. Use two different triptans: If you can’t get the same prescription twice, you might be able to get two different kinds of triptans with two copays. In my information survey, this seems to be the most common allowance that insurance companies make. (Talk to your doctor about dosing. Most say to not take two different triptans within a 24-hour period.)

7. Use two different delivery methods: A reader said that her insurance will cover prescriptions for both Zomig tablets and Zomig nasal spray each month. The same would work for others with multiple delivery methods, like Imitrex (sumatriptan) injection and tablets or Maxalt (rizatriptan) ODTs and tablets.

8. Pay cash (with a discount): If your insurance company won’t budge and it’s within your budget, you can pay cash for additional triptans. You pay per pill and price depends on which drug you get and which delivery method you use. I use a drug discount card (GoodRx) or go through for the lowest prices. Sumatriptan (Imitrex) tablets are by far the least expensive at $1.44 per pill on and $1.60 per pill through GoodRx (as of today, prices fluctuate). You can check prices for both online. Readers have also recommended Costco.

How do you manage insurance triptan limits?

*Medication overuse headache (a.k.a. rebound headache) is a serious risk that can increase attack frequency and make migraine even harder to treat. Only an extended period without the problematic medication and close consultation with a knowledgeable doctor can determine whether you are at risk.


Falling Short Still Hurts

I’m generally quiet when meeting more than one new person. I like to observe for a while before jumping into the fray. My entire life, this has led to people to assign me to one of two categories: mysterious or, more often, snobby/standoffish/bitchy. Being perceived as mysterious is fun (because I actually an open book), but the snob label caused me a lot of distress when I was younger. Fortunately, being called names has lost its importance as I age and the associated upset has dissipated.

In recent months, a similar distress has reappeared from a strange source: social media. I feel bad for not engaging with readers. I’m sorry I’m not promoting the great work of other bloggers. I hate that tweets and comments sometimes sit for days before I can respond to them. These are legitimate reasons to be unhappy with lackluster attendance to social media, but the anxiety took me by surprise.

My preoccupation isn’t about the names the kids at school call me. I highly doubt anyone is saying, “Kerrie didn’t retweet me. What a snob.” It’s that I very much want to participate, but am struggling to even do the bare minimum. That leaves me feeling like I’m letting people down and failing at my goals. Like I’m once again a kid who is falling short of expectations. Except this is worse because it’s my own expectations that I’m not living up to.

Feeling like I was falling short was once my default mode. It was particularly true in my early years of being disabled. The shame of being sick enveloped me and I constantly criticized behaviors that I thought I should have control over (but didn’t… because I was sick). After some intense self-compassion work last year, I thought I was over that. Wrong. The difference is that last year I felt well enough to keep up with almost everything I needed to do. When I couldn’t, catching up didn’t take long. Also, my expectations were much lower. It’s not like I was better at social media a year ago; beyond a cursory involvement, it wasn’t even on my to do list.

That I’ve started to call 2014 my good year is an indication of my current mental state. The temporary backslide that started this spring has begun to feel permanent. It has reignited all sorts of issues I’d thought resolved. Turns out it’s easy to resolve something when you’re not feeling it acutely. Fear, grief, shame, disappointment… they weren’t gone for good, they were just on an extended vacation.

I’m still committed to being kind to myself and avoiding harsh self-criticism, but it’s a lot harder to manage when every day brings several new reminders of ways in which I’m falling short. I can tell myself I didn’t do X because I was sick (and not because of some personal failing), but the fact remains that I didn’t do X. Whether I’m at fault is irrelevant; the outcome remains the same.


Why People Don’t Take Triptans for Every Migraine Attack

triptans_to_takePeople with migraine do not treat an attack with triptans 43% of the time despite significantly more disability when they do not take a triptan than when they do. This finding, from a study presented at the American Headache Society conference in June, was not news to me and probably isn’t to you. Of course people with migraine don’t always take triptans—they’re expensive, we’re afraid of running out before the month is over, and we fear medication overuse (rebound) headache (and that’s excluding people for whom triptans are ineffective or contraindicated).

The surprising part was the clueless explanations Medscape offered for why we don’t take triptans for every attack. I was angry with the doctor they interviewed for the article before noticing that the direct quotes from the doctor are all technically correct (though perhaps a bit out of touch). It’s the information attributed to the doctor but not directly cited that’s particularly problematic. Having incorrect information published is never good, but I’m less angry about a reporter being clueless than a certified headache specialist being so. Here are some excerpts and quotes from the article and what I understand to be true for patients. If you have any additional thoughts, please leave a comment.

“[A]lthough formulary restrictions and/or insurance coverage may be playing a role in the nonadherence, the situation now is not nearly as bad as before many triptans became generic, when insurers would limit the number of allowable pills per month.” [excerpt from the article, not a quote from the doctor]

Insurers limit the number of generic triptans they’ll cover in exactly the same way they limit name-brand triptans. I’ve never heard a single person say they get a higher quantity of a generic triptan than of name-brand drugs. Do you get more triptans if you choose generic over name-brand?

“People will wake up at night with a screaming headache and, instead of getting out of the bed and taking their medication — which is what we tell them to do — will often lay there desperately trying to go to sleep for hours. I’ve often wondered if that isn’t some sort of confusional episode related to the migraine.” [direct quote from the doctor]

I have lain in bed and not taken medicine because it hurt too much to get up to get the pills or a glass of water. (I also wait to go to the bathroom until I’m on the verge of wetting the bed.) One of my most vivid migraine memories is dragging myself across the wood floor on my stomach to get to my medication in the next room. It took 45 minutes to go 20 feet because I had to stop to rest so frequently. Another possibility is that we’re told triptans aren’t as effective when the pain is already bad, so it seems like a waste of a precious triptan to take one when you awake with your head already screaming. The idea of a confusional episode being responsible is interesting, though. Do you think there’s merit to that idea?

“[Y]ou’d be surprised at how many patients wait to see how bad it’s going to get before they do anything. It’s almost like they’re hoping it won’t do what it did the last 50 times.” [direct quote from the doctor]

Triptans are expensive and we’re limited in the number we get each month. By using up this supply too early in the month, there’s always a risk of getting stuck with a horrendous migraine and not being able to treat it. We’re also warned of medication overuse (rebound) headache everywhere we turn—if we’re told taking medication could make our migraines worse, we’re going to be very careful about when we take the medication. And someone who has a lot of side effects from taking triptans is going to wait until it’s absolutely necessary to take the drug.

“Others may be trying to avoid a condition known as a ‘post-drome,’ Dr Ward said, in which taking a triptan at the first sign of a migraine can move the patient straight from pain to a feeling of sleepiness or unease.” [excerpt from the article, not a quote from the doctor]

What? I can’t make sense out of this one. Postdrome follows the pain phase of a migraine attack whether or not a person takes a triptan. Taking a triptan and jumping to postdrome is preferable to waiting through the pain phase to get there.

Did I miss anything? Are there other reasons you don’t take (or delay taking) triptans? I have an article pending for about rationing triptans, which I wrote before I knew about this study. If I’ve missed anything, I’ll add it to that article.