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Your 30 Things Headache Disorder/Migraine Meme

Your response to the 30 Things About My Invisible Illness You May Not Know meme from Invisible Illness Awareness Week last year was so enthusiastic that I’ve adopted and adapted the idea for Migraine and Headache Awareness Month. Since not all headache disorders are the same, I’ve come up with slightly different lists for different types. If you fit multiple categories, you’re welcome to respond all those categories. Links to each set of questions are available at the end of this post.

You can submit your responses to be published on The Daily Headache. Each one will have a unique URL so you can share it any way you’d like. Directions follow. I’ll be highlighting some answers through Migraine and Headache Awareness Month, which starts June 1.

Even if you don’t wish to share your answers, answering them is a helpful way to think about how having a headache disorder has affected your life in both good and bad ways. Filling mine out made me cry happy and sad tears. It also reminded me of the incredible feat of living with a headache disorder, which made me feel proud.

To post your 30 things on The Daily Headache…

  1. Follow the link below to the set of questions you wish to answer.
  2. Enter your name (or a nickname, if you prefer).
  3. Fill in the title field—it can be as simple as “30 Things About Mike’s Life With Chronic Daily Headache.”
  4. Read through the questions
  5. Find the submission form at the bottom of each list of questions.
  6. Copy and paste the questions and your responses into that form.
  7. Within 24 hours, I will moderate your submission (to prove it’s not spam) and it will be published as an individual post with a URL you can share. Check the 30 Things Meme category for your post then click on your post title to get the URL.

Links to questions…

30 Things About Your Life With Migraine

30 Things About Your Life With Cluster Headache

30 Things About Your Life With New Daily Persistent Headache 

30 Things About Your Life With Chronic Daily Headache

30 Things About Your Life With Tension-Type Headache

30 Things About Your Life With a Headache Disorder

I hope I haven’t made this too complicated in the name of inclusivity! Please let me know if you have any questions. Many thanks to Invisible Illness Awareness Week for this great idea.

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An Update

I’ve been away far longer than I expected. Since I know you worry, I wanted to let you know that I seem to be improving v-e-r-y s-l-o-w-l-y. Eating is back to triggering migraine attacks (this is not a failure of DAO; another treatment I tried went haywire). Tolerex (the feeding tube formula) seemed like the perfect short-term solution… then it started triggering attacks, too.

Since the max dose of naratriptan (Amerge) is two tablets a day, for the last week, I’ve been eating two meals each day and take a naratriptan and two Midrin after each one. (Please don’t double up on a triptan and Midrin without talking to your doctor first—it could increase stroke risk. My doctor said it was OK for me, but his nurse freaked out when I told her about it on the phone.) This is not a solution, it’s only a bandaid. One I’m grateful to have, but a temporary fix nonetheless. My doctor and I have determined that I am not prone to medication overuse headache, so that’s not a concern, but these drugs are too harsh to take twice a day indefinitely. More significantly, it helps with the eating-triggered attacks, but leaves me without effective treatment if any other triggers come along.

The other problem with the current regimen is that it doesn’t help like it used to. Three months ago, a naratriptan and two Midrin would stop migraines within a couple hours even when I’d eaten way off the diet. Now, the drugs leave me in a low-level migraine almost all the time even when I eat foods that were once fine. The pain is a little worse than typical, the brain fog is little bit less, and the fatigue is considerably less. It’s like it has averaged the highs and lows that have been typical for me in the last year, so that now I’m in a constant state of mild-ish migraine. Turns out I prefer the highs and lows.

Today I am hopeful that I’ve found something else that will help. I’ve been taking probiotics since August. When I stopped them for a week in Septemeber, foods that had been OK became triggers. Going back on them let me eat those foods again, but hasn’t allowed me to reintroduce any more foods, even at higher doses. The probiotic I’m taking now, VSL #3, has one less strain than the one I originally took. I tried adding that strain individually a while ago, but it triggered migraine attacks. Four days ago, I opened up the capsule and only took a sixth of it. No migraine ensued and I’m now up to taking a third of the capsule each day. My reactivity to foods seems to be lessening. Maybe this is the probiotic, maybe it’s just time. The improvement could be a fluke or short-term, but it feels like more progress than I’ve had in the last few months.

This has been frustrating and scary. And I don’t even get to eat whatever I want—foods that were moderate triggers before are now major triggers that require more triptans and Midrin than I can take in a day. I’ve been catastrophizing some, but can mostly keep it at bay by reminding myself that I have no idea what the future will bring and that the past cannot predict it. Still, thoughts that I might never feel as good as I did six months ago aren’t far from the surface.

Thank you for your kind comments and emails. It helps a lot to know I’m in your thoughts. I’m thinking of you, too, and am sorry I’m unable to respond to comments right now. You’ll hear from me as soon as I’m able. Today I’m cautiously optimistic that it won’t be another month between posts.

(For an unrelated feel-good moment, take a look at these beautiful illustrations of love. They’re not flashy, romance novel-worthy moments, but the quiet, consistent moments of love. They brought me to (happy) tears.)

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A(nother) New Normal

Hi there. Sorry for the silence. It’s been a rough month migraine-wise. My attacks have gone from happening immediately after being exposed to a trigger to building slowly over hours. I’ve had trouble keeping up with the change, which has meant the migraine attacks are more frequent and last longer. Also, my symptoms appear to be changing. The pain location has changed and fatigue has been my primary symptom. I think I’m getting things sorted out now, but it’ll take a while to settle into this new sense of normal. And please don’t worry—the attacks don’t appear to be getting any worse, they’re just different. Different is strange and uncertain, but not necessarily bad.

I’m sorry for falling behind on writing and responding to comments and emails. I know you understand, but hate leaving anyone hanging. I’ll be back as soon as possible.

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Transcranial Magnetic Stimulation for Migraine: Spring TMS Study

SpringTMSAre you eager to get your hands on a transcranial magnetic stimulator to treat migraine? The Spring TMS, which received FDA approval last May, won’t be available to patients until the completion of a post-approval study to determine how to use the Spring TMS most effectively. And the study can’t be completed until more participants are recruited. You can try the Spring TMS for free and help bring it closer to availability to others by participating in the study.

The study is being conducted at six locations throughout the United States, but the exact locations are not listed on ClinicalTrials.gov. If you’re able to travel, it might be possible to participate even if you don’t live in one of those locations. If you’re interested in participating, take a look at eNeura SpringTMS Post-Market Observational US Study of Migraine (ESPOUSE) for details and criteria for participation. If you’re still interested, contact Cynthia Harris at (775) 392-2970 or cindy@clinregconsult.com with your questions and to get location details.

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ChronicBabe Book Kickstarter

ChronicBabe has been an incredible resource for me, particularly in my early days of trying to figure out how to live well with chronic illness. And a book is on the way! Jenni Prokopy, ChronicBabe’s founder, has spent the last two years creating a book and multimedia resource that sounds incredible. The 10 key concepts she addresses are:

  • Embracing acceptance
  • Kicking bad habits to the curb
  • Turning around negative thinking
  • Establishing healthy boundaries
  • Practicing self-acceptance and love
  • Building a solid support team
  • Strengthening personal relationships
  • Exploring school and career options
  • Boosting your communication skills
  • Organizing your complicated life

Jenni running a Kickstarter to help her through the final push of editing (both to cover her salary over the next few months and to hire a professional editor) and book marketing, among other things. People are so excited about this book that Jenni has met all her funding goals three days early! Now everyone who who donates $1 or more to the Kickstarter will receive a free ebook.

ChronicBabe has been a labor of love for Jenni for 10 years. If the website been helpful resource for you or you’d like to get your eyes on all the goodness the book has to offer, you have until 11:30 a.m. ET on Friday, March 27 to make your pledge. She’s offering lots of goodies depending on pledge level, but $1 will get you the ebook. Watch the video below and check out the Kickstarter details for more information.