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.


Comfort Plan

Comforting me during my post-DHE/methysergide freakout was almost impossible. I refuted everything Hart said to try to soothe me. In wondering what might have comforted me then, I came up with the idea of a comfort plan. It’s more of a list, really, of things that might calm me down when I’m freaking out (or when I feel particularly bad during a migraine attack). Not everything on the list will work at all times, but it’s at least a guide when things feel out of control. It’s for me and also for Hart, since he’s the one who is usually with me when I need comfort.

I’d love to hear if any of you have something similar. If so, what’s on your list? Is a mental list or have you written it out? Have you shared it with others who could help you in times of physical or emotional crisis or is it for yourself?

Here’s mine.

cat_comfotMy pet: If I had a pet, it would be second only to having Hart hold me. I bet this is a major reason people domesticated animals in the first place—to cuddle with a warm, soft, non-judgemental, non-talkative being in times of stress, a being who can lick your tears or purr until your heart swells.

Music: A couple days after the aforementioned freakout, I was in the car when my favorite acoustic Dave Matthews show came on. I relaxed immediately and wished I’d thought to turn it on that Sunday night. Then I thought better of it. Many of his lyrics are about living in the moment and seizing the day… exactly what I was lamenting being unable to do. As much comfort as his music provided me in my sickest years, I was often conflicted about my inability to live life to the fullest when I couldn’t even get dressed without resting. Maybe Dave wasn’t the answer. I considered other bands I love, including some afrobeat and funk. While both genres make me smile, they also make me dance, which would likely have added to the downward spiral I was in that night. I was left with a particular Bob Marley show and a certain Jack Johnson album, both of which Hart knows to put on when I say, “I want to listen to music I can chill out to.” I’d mention neither if you asked me my favorite bands, but both hit the spot when I’m stressed. And that’s the reason I took you through the details of my music-related musings: sometimes the music that would normally be your first choice might not be right for the moment.

Nature pictures: Being in nature would probably be ideal, but can be hard to come by in the middle of the city. I came across the power of nature pictures during a difficult phone therapy session. My therapist emailed me a list to look at and I left my computer open afterward. As I was crying, the screensaver of National Geographic pictures came up. My tension lessened immediately. This is something I think I’d have to seek myself. I doubt I’d respond positively if Hart said, “Hey, let’s look at your screensaver” when I was sobbing.

Nature sounds: If I were in nature, the ideal place would be watching (and listening to) a creek or river. That’s hard to come by in Phoenix, but audio of river sounds or rainstorms might be a great balm. I’ve actually never thought of this before. Next time I need comfort, I’ll cue up one of my Sleepmaker apps and let you know if it works.

A warm bath: Need I say more?

Splashing cold water on my face: This one’s less intuitive, but it’s a suggestion from my therapist who claims it takes you out of fight-or-flight mode. That would have been an excellent technique to remember on that horrible Sunday.

A dark room with white noise: This is my standard migraine setup, but Hart’s the one who thought of this during my recent freakout. It, plus Hart holding me, is ultimately what calmed me down

I’m really into this idea of individualized plans we can offer other people. At first it seems contrived to provide loved ones with lists like: things that are usually helpful for me during a migraine attack, ways to approach me when I’m showing signs of depression, how to soothe me when I’m beyond reason (all with the caveat that not all things will work at all times). But how can we expect others to know what we need if we don’t tell them? Sure, some people will pick up on certain things, but others’ perceptions of what you need may not actually be what would help in that situation.

Hart and I are celebrating our 17th wedding anniversary this week. He knows me well and has a lot of experience at this caregiving thing. Still, having a list of strategies to try to soothe me would have been really helpful that night. Because, honestly, he was barely holding it together himself. He had to take care of me at the same time he was also terrified that life as we’d come to know it had changed irrevocably. My needs took precedent because I’m the one who is sick, but, even as I was caught up in my own grief, I was thinking how unfair it is that he had to take care of me when his life was changing, too. Contrived or not, a guide would have been useful for both of us.