By

Unending Brain Fog (aka Where I’ve Been)

I wrote the following post last May and didn’t post it because I needed to edit it. I still haven’t edited, but finally decided it was more important to post that to have it be finished.

May 27, 2017

“I’m so happy to see all of these activities that you’re doing!” When my third friend commented on all the activites I’ve expressed interest in on Facebook—and assumed I’d actually done them—I knew it was time to follow up.

When a chronic illness blogger goes silent, readers generally assume one of two things happened: the blogger is so sick that they can’t keep up or is doing so well that they’re out having fun instead of writing. It’s rarely that simple or straightforward. Given my recent posts, I think most of you have assumed the latter.

I don’t want to worry you. I am doing remarkably well. But that brain fog I attributed to Wellbutrin is actually a side effect of my new treatment. It’s a constant low(ish)-level fog that keeps my mind functioning at about 90% all the time. I can do the normal things of life and carry on conversations pretty well. I feel mostly normal, until I sit down to write and it becomes abundantly clear that I’m not all here. After so many years of cognitive dysfunction, I thought I’d figured out how to work around it. I had as long as it followed the pattern I was accustomed to. That brain fog had peaks and valleys. I rarely become as incoherent now as I did in previous years; I also don’t have the same high-level of functioning that I used to enjoy in the my clearest moments of previous years.

So I don’t write. I think about writing. I try to write. Then I stop because I get so frustrated that I’m not all here. Instead, I spend my time feeding myself (and reading recipes gleefully) and trying to walk five miles a day and practice yoga. Back pain—a result of increased movement in an out-of-shape body—means my schedule now includes weekly visits to a physical therapist and about an hour of special stretches and exercises each day. I actually feel kind of lost right now. “Adrift” is the word that comes to mind.

I’m not sure how to organize my days (and my life) when I can’t think well enough to work and don’t have migraine looming over me all the time. Well, that’s not entirely true. Migraine does loom over me al the time, it’s just a smaller shadow than usual. How I respond to my treatment is still fairly unpredictable. While I do have more good hours in a day and even my migraine hours aren’t as debilitating as they used to be, I still have down time most days and I never know when it will be.

Everything I wrote in May is still true, though I feel less lost than I did. Unfortunately, beginning in June, I’ve also had several significant bad migraine spells. The treatment is still mostly working, but it’s incredibly finicky and unpredictable. I am working on a post about the treatment and promise to publish it even if it needs a lot of editing!

By

Migraine World Summit Starts Sunday!

Imagine hearing from 36 different migraine experts, from physicians and researchers to patient experts, all in one week. That’s what you get with the Migraine World Summit, a free online event that runs from Sunday, April 23 to Saturday, April 29.

The Migraine World Summit will address topics like:

  • The best migraine treatments
  • What do do when you feel like you’ve tried everything
  • The most effective non-drug treatments
  • Coping with anxiety, judgment, and social stigma of chronic migraine
  • New treatments on the horizon
  • Migraine myths (and what the truth really is)
  • Hurdles that people with migraine face

Peter Goadsby, MD, David Dodick, MD, and Richard Lipton, MD, are just three of the renowned physicians interviewed for the summit. Joanna Kempner, PhD, (author of the fantastic Not Tonight: Migraine and the Politics of Gender and Health) will talk about changing perceptions of migraine. Vidyamala Burch, who book You Are Not Your Pain, I highlighted in last summer’s series on mindfulness-based stress reduction, will speak about using mindfulness for chronic pain. And I just finished my interview about creating good doctor-patient relationships. The full lineup of Migraine World Summit speakers is impressive.

New videos will be posted each day of the week and are available for free for 24 hours. You can purchase permanent access to the videos (and get audio-only recordings and transcripts) for $79 until April 22 ($99 after that date). This is an affiliate program, so the referrer gets a portion of that fee. I’ll donate whatever I earn to the American Migraine Foundation.

Here’s the link to sign up for the Migraine World Summit. Then poke around on the website for the full schedule and speaker bios. It’s a great lineup.

By

My First Migraine Fundraiser Race!

Miles for Migraine logoHart: “Is this what people normally do on weekends?”

Me: “Right? It feels like we’re on vacation.”

We were walking to get coffee on a Saturday morning. It’s a walk Hart’s taken many times in the six years we’ve lived here, but I’ve never been able to join him. Until a few weeks ago.

Spending time with friends and family, working, exercising, cooking, cleaning my house, eating whatever I want… After 14 years of disability during which I have lived and breathed migraine, being able to do the normal activities of life feels like I’m on constant vacation. The indescribable joy I feel is one reason I will be walking in the two-mile portion of the Miles for Migraine race in Phoenix this Saturday. This is the first walk I’ve been healthy enough to participate in, so I will be celebrating the pleasure of having a body that is now capable of walking a couple miles without keeling over.

I’m also walking for the millions of people whose lives have been rendered unrecognizable by migraine. Far too many of us have spent years buried under this illness. I would still be housebound and nearly bedridden without programs that fund migraine research.

If you’re in town and able to join me, I’d love to see you on Saturday, March 18 (here’s the registration form; March 16 is the last day to register). And if you’d like to donate migraine research—even $5 is a huge help—here’s my Miles for Migraine pledge page. If you work for a company and would like them to match your donation, you can donate through that link and then email shirley[at]milesformigraine[dot]org for details on the follow-up paperwork.

Thank you for being a part of my life. Even if we’ve never met (or even emailed), the support of The Daily Headache readers has been vital to me through these difficult years.You’ll be on my mind during the walk. I wish relief for every one of you and believe that through efforts of programs like Miles for Migraine, it’s possible we will all find a reprieve.

By

Brain Fog, Uncertainty, Excitement, Beauty, and Hope

brain-fog-gc-minI’ve spend the last six months traveling in the land of brain fog. It’s a weird level of brain fog. I putter around the house as if I’m thinking just fine, then I sit down to write and my IQ plummets. Although my inability to string sentences together has kept me quiet, I’m actually doing remarkably well. My new treatment is working way better than I could have imagined and I’ve determined that the cognitive dysfunction is almost certainly a side effect from a drug I’ve been able to stop taking.

About My New Migraine Treatment

I’ve been using my new treatment since June 23. (I have to keep it a secret just a little longer. I’m told I’ll be able to tell you about it any day and am so excited that you’ll be the first to know when I can. Know that I’m not holding out on something that could help you now—It’s not yet available, but should be very soon.) The first months were full of heartbreaking lows and exhilarating highs, then my migraine symptoms seemed to settle into a slow and steady improvement. After quitting the ketogenic diet six weeks ago, my improvement became astonishingly swift. I can now eat anything I want. (I have to repeat that: I can now eat anything I want!). I still get a migraine attack every time I eat, but the symptoms are barely noticeable when the treatment works.

When the treatment works… that sounds ominous, but it’s really just part of the ongoing adjustment. Balancing the variables of which foods and how many calories I eat with calibrating the treatment just right is a challenge, especially because I keep trying new foods. When the dose is too low, the treatment dampens the migraine attack without fully aborting it. At too high of a dose, I feel great for an hour or two before a rebound migraine attack hits. However, When Goldilocks is satisfied, I’m high with feeling like myself again.

While these variations are tedious and make my day-to-day symptoms unpredictable, the overall effect is wonderful. You see, the treatment is making me less sensitive to food triggers over time. Once I find the right dose for a particular meal, the treatment works perfectly a handful of times. Then the dose becomes too high for that meal and I have rebound attacks. Then I have to guess at how much to reduce the dose and start the process over. (I’m talking in food triggers because that’s my issue, but the treatment can work for other types of triggers, too.)

On Brain Fog

Given the overall success with the new treatment, the persistent brain fog was frustrating. After dealing with it for months, other symptoms starting creeping up, like increased anxiety and ringing in my ears. When dizziness become another frequent companion, I had an epiphany: Wellbutrin has been the source of all the debilitating bouts of dizziness in my life. My new treatment is also used for depression… perhaps in addition to helping my migraine attacks, it was reducing my depression and making me overly sensitive to Wellbutrin’s side effects. I reduced my dose from 450 mg to 300 mg in January and the brain fog, dizziness, anxiety, and tinnitus reduced. Two weeks later, the symptoms began to resurface, so I reduced the dose again. And again. I’ve been completely off Wellbutrin for a week, the brain fog seems to be receding, and the other related symptoms have abated.

What’s Next? Uncertainty Reduction at the Grand Canyon

As I wrestled with my life’s current excitement and uncertainty combined with a loss of innocence brought on by politics and a family health situation, I imagined myself standing on the edge of a canyon. The phrase “precipice of grief” popped to mind immediately, but it’s message was was muddied by the image of a beautiful canyon. The meaning was unmistakable. Life is scary and full of grief. It is also unbelievably precious and beautiful. To root this belief in my heart and body, I’m going to stand on the glass bridge at the Grand Canyon. The thought terrifies me, but I expect seeing the beauty and confronting my fear will make me stronger than before. (At least I hope so, otherwise my metaphor will fall apart!)

After a busy few weeks of doing the Miles for Migraine race in Phoenix (please join me if you’re in town!), attending a conference at the Mayo Clinic and another for Health Union advocates (that’s the company behind Migraine.com), having my family visit, and recording for the migraine video series I mentioned last week, it’s time to think about the future. What matters most to me right now? Where will I be writing and how much? What roles will I play at TheraSpecs? How will I build my local community now that I’m able to be more active in the world? How else do I want to spend my time? I’m not sure what answers I’ll find, but I’ll let you in on the exploration.

By

Migraine Information and Advocacy Video Series: Call for Participants

A national news anchor is putting together a five-part video series on migraine for a major health website and is looking for people who have migraine to participate in several segments. In addition to talking about basic migraine information and treatment, the series will also share what migraine is really like and how it affects our lives (and our loved ones). They want to hear the stories of people with a broad range of migraine experience (chronic or episodic) and of different ages, genders, and life circumstances. Travel may be required, but not necessarily.

I’ll be participating and would love for you to join me! If you’re interested, please fill out the form at this link and submit it by midnight Pacific time on Sunday, March 12. The questions are to help the producer find participants best suited to different videos and figure out where filming will take place. I will forward the information onto to her and she will contact you directly if you fit what they’re looking for.

Speaking with the producer has me excited about the project. They are genuinely interested in educating people about migraine and are earnest about these videos being used for advocacy. They also clearly want to get it “right”—to portray migraine and its impact accurately. I believe the videos will a great tool for spreading the message about migraine.