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.




Steroid Withdrawl? DHE/Methysergide Side Effects?

angry_kerrieCourtney at 1-800-Contacts dealt with an irrationally angry customer yesterday. This customer was furious that after the wrong contacts were delivered on Monday, she was promised a replacement pair would be delivered by 10:30 a.m. Wednesday, then found out that the person who made that promise couldn’t actually guarantee a delivery time. The customer demanded an explanation for what happened and complained about the terrible customer service. The customer was me.

But that’s not me at all. I’m understanding and easygoing with customer service. Mistakes happen. I realize the person I’m talking to is not responsible for the problem and does not deserve to be dumped on. I err more toward being a doormat than being the attack dog. Unless it’s Courtney from 1-800-Contacts.

I didn’t stage this interaction as an example of how I’m not myself this week, but it’s a perfect illustration. I ask Hart for his opinion, then get annoyed when he offers it. I’m irked that the farmers’ market was open when the website said it wouldn’t be. I’m mad I’m unable to be at the American Headache Society conference this week. My messy house feels so oppressive and agitating that I’m ready to haul everything out to the curb. I blew up at poor Courtney. Although the depth of my unexpected sorrow on Sunday was shocking, it’s far more familiar than this anger.


  1. I’m going through steroid withdrawal after my last dose Friday night. Steroids are notorious for causing mood changes, so this seems the most likely. Anecdotally, people who have IV steroids for MS report similar issues. They also report fatigue, which I have this week, too.
  2. The DHE-45 and/or methysergide has caused some bizarre lingering side effects. DHE doesn’t have recorded mood effects. Methysergide does, but they’re vague and rare. I did find a case study of someone who had “psychiatric side effects” with methysergide, though they were different than mine and he was on it for weeks, not a day. From the literature, this seems an unlikely explanation. But my response to methysergide on Sunday keeps me from dismissing it.
  3. The exceptionally mild migraine attacks I’ve been getting when I eat are altering my mood in addition to making my feet cold and causing slight fatigue. I tested this by taking naratriptan (Amerge) and Midrin after I ate, but had no change in any of my symptoms. (Which makes me think maybe it’s not migraine at all, but something else. I got tested for anemia today.)

I’m going with a combination of steroid withdrawal and a wild reaction to methysergide. My symptoms are improving each day and I continue to take it easy. This means not being very involved in Migraine and Headache Awareness Month or sharing as many 30 Things on social media as I’d like. It’s strange to have being sick interfere with a job that relies on being sick, though I should be used to it by now.

By the way, I apologized to Courtney. I’m not happy that my contacts were not delivered until 10 hours after they were promised, but it wasn’t her fault.

P.S. Taking a picture of my angry face resulted in far more pictures of me smirking and laughing than growling. This is a good sign.

7/18/15: I asked my doctor about this last week. He thinks the steroid was to blame. He said he’s never seen a reaction like this to DHE or methysergide, but has to steroids.