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.


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)




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.


Migraine & Headache Bloggers’ 30 Things

Bloggers who have shared their 30 Things About Life With Migraine on their own blogs:

Fellow writers who have shared their 30 things:

Did I miss someone? Please leave a comment with the URL and I’ll add it to the list! (These are links to responses posted on other websites. If you’ve submitted your response on The Daily Headache, you can find it here.)


Tipsy Turbulent

While responding to a email about a post I was scheduled to do this month, I tried to say it was unlikely to happen because my health was still topsy turvy. My phone autocorrected to tipsy turbulent, which I may like even better. Though tipsy implies fun, which this has not been.

The short version: my migraines are different than they were before the infusions, but still come on every time I eat. I thought I had them figured out, then got a doozy. Then I thought I found a medication that helped, but it made things worse. I’m recovering from that medication now.

I move from optimistic to panicked to OK-maybe-I-can-figure-this-out, usually multiple times each day. I told a friend that I couldn’t get together because of a health crisis. This scared her. When I said it wasn’t life-threatening, she responded that she was glad it wasn’t serious. Except that it is. It’s not going to kill me, but it is serious. It could completely change what my days look like, moving me from writing and working and taking care of myself to a lump on the couch. It could mean that the freedom I enjoyed for a year will once again disappear. My drug-related freakout last Sunday made it all too clear that I’m terrified to go back there.

I told my doctor before the DHE infusions that if I got back to eating 40 foods without them triggering migraine attacks, I’d be thrilled. Now, I’d be thrilled to go back to being able to eat those 40 foods and controlling the ensuing migraine attacks with naratriptan and Midrin. It’s not a long-term solution, but it would be better than feeling like I’m in freefall.

So, yeah, things are topsy-turvy… tipsy turbulent… incredibly scary. I hope I’m headed in the right direction, but won’t know for at least a few more days.

P.S. Blurry vision is a new migraine symptom I developed this spring. It comes and goes; it has been in full force this week. I’m adding your 30 Things each day (we have more than 100 now! plus more on other blogs and, but that’s all the screen time I’m getting in. My spirit is with Migraine and Headache Awareness Month and I will highlight your stories, even if it’s long after June is over. Thank you all who have shared. I love learning about you and seeing your optimism, perseverance, and strength. If you haven’t had a chance to read these stories of fellow readers, please take a look at 30 Things. Want to share your story and enter to win a pair of TheraSpecs or a coaching session with me? Take a look at these instructions and be sure to submit before midnight Pacific time on June 29.