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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.

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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 Migraine.com about rationing triptans, which I wrote before I knew about this study. If I’ve missed anything, I’ll add it to that article.

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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.

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American Migraine Foundation’s Blog a Day

The American Migraine Foundation (the group behind the 36 Million Migraine campaign) celebrated Migraine and Headache Awareness Month with daily featured posts from five different migraine bloggers. It was a ton of great information and I was honored to be chosen to participate. The other bloggers who participated were Lisa Jacobson from The Daily Migraine, Sarah Hackley from The Migraine Chronicles, Michelle Tracy from The Migraine Warrior, and Anna Eidt from Brain Storm. (Check out their great blogs!) If you didn’t get a chance to see all the posts, they’re worth a look. Here’s the lineup:

  1. Moms and Dads With Migraine (Lisa)
  2. Early Second Trimester Migraines (Sarah)
  3. Dehydration as Migraine Trigger (me)
  4. Chronic Caregiver (Michelle)
  5. On chronic pain and depression (Anna)
  6. Migraine-15 Steps to Create and Environment Conducive to Wellness (Sharron)
  7. When in Doubt, Nap: 64 Inspirational Quotes from Chronic Pain Sufferers (Lisa)
  8. An Open Letter to My Pre-Migraine Self (Sarah)
  9. Migraine Hangover (aka Postdrome) (me)
  10. A Vanilla Cupcake and a Whisper (Michelle)
  11. Cures (Anna)
  12. Migraine: ‘I am a Person, Not a Diagnosis’ (Sharron)
  13. TMJ and Migraine (Lisa)
  14. Coping With Occipital Neuralgia Without Medication (Sarah)
  15. Sleep, Schedules, and Migraine (me)
  16. Chronically in Love: The V-Day Edition (Michelle)
  17. Migraine ≠ Headache (Anna)
  18. Migraine: What’s Stress ‘Let Down’ Got to Do With It? And Did Someone Say Stress-Management (Sharron)
  19. Heat+Glare+Sun=Migraine (Lisa)
  20. no post today
  21. Managing Your Migraines in the E.R. (Lisa)
  22. I’ve Always Depended on the ‘KID’-ness of Strangers — Talking to Children About Chronic Migraine (Michelle)
  23. On Thriving With Chronic Migraine (Anna)
  24. Effective Use of Medications for Migraine Relief — 5 Ways to Overcome Unmet Needs and Improve Our Treatment Outcomes (Sharron)
  25. Are You a ‘Spoonie’? (Lisa)
  26. 32 Bizarre Migraine Treatments (Lisa)
  27. Sunny Weather = Fewer Migraines? The Everlasting Hunt for Triggers (me)
  28. From Migraine to Mygraine (Michelle)
  29. On Pondering Parenthood With Chronic Pain (Anna)
  30. A Role for Integrative (Complementary) Therapies in Preventing the Progression of Episodic to Chronic Migraine, and Remittance (Sharron)

 

 

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30 Things Contest Winner!

Of the 129 contest entries, the randomly chosen winner is: 30 Things About My Headache Disorder. (Winner, check your email for instructions on how to claim your prize!) Thank you all for participating. Reading your responses and getting to know you has been a pleasure during a particularly difficult month for me.

Some responses from the winning entry that caught my attention:

The most frustrating part about having a headache disorder is: There is no cure for me right now. I have to wait for science to catch up. My doctors assure me I’ll be a wonderful, active grandmother.

Having a headache disorder causes me to worry about: Not being a good enough mother, wife, sister, daughter, friend; that my best is not good enough

My best coping tools are: Staying connected to my people. I isolated myself for years. Now I know that loving and being loved is the best medicine. Also, pushing myself to go out and keep my connections alive even when I just want to be safe in bed, very still, watching terrible tv to keep my mind off the pain.

I find comfort in: People that know me, warts and all, and still love me. People that believe me/in me. Fellow sufferers. Doctors that are pissed that they haven’t been able to help me yet and are never going to give up on me.
18. I get angry when people say: Judgemental things about people that have chronic headaches or migraines, or any chronic condition that is hard to understand, and as if they know what that person is going through. I’ve found that chronic pain from cancer is the only pain that people seem to accept as real. But Morrissey said it best: “It’s easy to laugh. It’s easy to hate. It takes guts to be gentle and kind.”

The best thing a doctor has ever said to me about having a headache disorder is: Make an appointment for a hug if you need to. We’ve maxed out what’s available now, but I’ll always have time to comfort and cry with you.

The hardest thing to accept about having a headache disorder is: Mourning the life your thought you would have. Accepting your new limitations. Having to re-evaluate your purpose in life.

Having a headache disorder has taught me: That I don’t know everything. I was quite judgemental before, didn’t realize how much because I thought I wasn’t, about so many things. I had it so physically easy, I couldn’t imagine that having a headache everyday, all day was even possible, that losing weight could be hard, that there are some things doctors can’t fix. I’ve been humbled, thankfully. For this I’m grateful beyond belief.

The thing I most wish people understood about headache disorders is: No one wants it. It’s not fun to not work when you can’t. I may go to the pool or beach, but I force myself every damn time because I can’t let my kids see me in bed all day, which is honestly where I always want to be. It worries them. You will never see me without a headache and if I’m out, it took A LOT to get there. My fellow headpain people push themselves like you wouldn’t believe! We are Sisyphean. Every day, we are pushing that boulder, but for us, we wake up never knowing how big that boulder is going to be.