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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.

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It’s Hard to Believe These Are Migraine Symptoms (But They Are)

Working on an Migraine.com article about all the migraine symptoms that most people have no idea are related to migraine reminded me of the list of symptoms I made for my internist in 2008. The list of all the weird things happening in my body that seemed to have no explanation was more than a page long. My doctor had no idea what they could point to. Now I know that, except for cold sores, they were all migraine symptoms.

I’m a little uncomfortable sharing such a private list, but I think it’s important to show some of the possible varied and strange migraine symptoms, as well as how severe migraine can be. Most of them are direct migraine symptoms, but some were a result of migraine symptoms (like tingling arms, which was part of a cascade of physical reactions due to constant neck pain that ultimately resulted in pinched nerves). Certain symptoms were so normal that I didn’t even think to include them on the list, like tooth sensitivity, earaches, eye irritation, or neck pain. Others were such common migraine symptoms that I didn’t mention them. Still others I was embarrassed to reveal, like hallucinating sounds.

It’s odd to think that we can be in our bodies and still not be able to figure out what’s going on or dismiss the signals that something’s not working right. But we do it all the time. I have lived with chronic migraine for the vast majority of my life and have been writing about it for nearly 10 years. Still, it’s only been in the last year that I’ve been able to connect the last of these weird symptoms to migraine.

This list doesn’t represent all of my symptoms or even the worst I experienced, but they came shortly after the turning point when my illness went from bad to terrible, in June 2007. My symptoms continued to worsen for another 2.5 years. I lived it and still have trouble believing how incredibly sick I was. It’s no wonder people without migraine have no idea how severe this illness can be.

Symptom Summary for Kerrie Smyres, 4/7/08

ACUTE

Nausea

  • Current biggest concern
  • Increases over first hour each day
  • Food usually decreases for 1-2 hours

Feeling faint, lightheaded, blacking out (also chronic)

  • Worsened by standing up, exercise
  • Blackouts (either last less than 30 seconds or until I wake up)

Vertigo

  • Usually mild; moderate
  • Diagnosed with Meneire’s without hearing loss, 2000

Sensitivity to exertion/exercise

  • Walking a half mile = feeling faint, lightheaded, exhausted
  • Gentle yoga triggers pounding headache

Fatigue

  • Bones feel heavy and tired
  • Nap 3 hours/day at least 5 days/week (from 2 hours a year ago)

Meltdowns

  • Become unreasonable, irritable, exhausted
  • Get lightheaded, woozy
  • Often no obvious trigger; sometimes triggered by hunger, bright lights, crowds

Other

  • 15 lb. weight loss since June 2007
  • Night sweats, chills, shivering
  • Hands, arms tingle 3-5x/night
  • Can’t get workspace bright enough when lighting was once fine (in kitchen, at desk)
  • Whooshing in ears, like blood pulsing; worse during migraine
  • Vision bounces/pulses always; worse during migraine
  • Sudden decreased hearing & ringing in left ear; my voice echoes
  • Canker sores, cold sores
  • Heat intolerance
  • Hand tremor
  • Constipation
  • Nasal congestion
  • Constant thirst, drink 100-150 oz water/day

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Food Sensitivities: What I Miss and Crave

“I could never give up X.” That’s the response when I mention my diet to someone new.

And I think, “You could if it meant the difference between spending all your time in bed and getting to do the normal things of life.” At least that’s the case for me.

I was surprised to discover that I miss foods I never expected to miss and crave foods that I don’t particularly miss.

Toast is what I miss the very most. This is entirely unforeseen. I like toast, I don’t loooove toast. I won’t go so far as to say I could normally take it or leave it. Warm, slightly crispy bread with yumminess on top is hard to resist. But it’s not something I made frequently. I was more likely to let the last half of a loaf languish in the freezer than think to turn it into toast. Now I see a loaf of bread and immediately think of a perfectly toasted slice of bread topped with melty butter. The butter is absolute, the other toppings depend on the day: strawberry jam, honey, peanut butter. That’s another oddity — I don’t have a particular affinity for strawberry jam over any other kind, but it’s the only one that tops my imaginary toast. Despite missing toast so much, I only crave it when I see a loaf of sliced bread.

I crave Golden Grahams a lot. A lot. I have eaten them far less than toast in my lifetime, but I can’t shake the thought of Golden Grahams. This is definitely a craving, not a missing. I don’t think, wistfully, “Oh, how I miss Golden Grahams,” like I do with toast. Instead, I think about how delicious Golden Grahams would taste and the craving grows increasingly fierce. I finally gave in and got a box. They were as delicious as I expected.

At the grocery store, I crave graham crackers and animal crackers. I don’t think of either one any other time, but both call to me every time I’m food shopping. Again, neither have been staples in my diet, except for brief period when I worked late a lot and animal crackers were the most healthful option in the vending machine.

There are five restaurant dishes I crave, mostly from chain restaurants. That in itself is odd, since I used to choose local restaurants over chains almost all the time. The chain restaurant meals that I daydream about are Pei Wei’s honey seared chicken and crab wontons (my migraine comfort foods of choice), fish tacos from Rubio’s, and a burger and fries from Hillstone (formerly Houston’s). I’ve enjoyed all three of those a few times in the last year since the migraines that result from them respond very quickly to triptans. The two local foods I haven’t yet tested are the amazing tomato-mozzarella sandwich made with bread fresh from a wood-fired oven and the best waffle I’ve ever had. I suspect those will be indulgences soon.

There are many other things that I miss and/or crave with less regularity. Boston cream doughnuts have been high on the list recently, as have ginger scones. At first, I craved my homemade cookies a lot, particularly chocolate chip and shortbread. I’ve eaten them several times and they’ve been delicious, but no longer crave them as often anymore. I wish I could figure out how I stopped craving them.

Are you bored to tears by this foray into foodie blogging? If you haven’t given up reading yet, thanks for sticking with me. It’s been surprisingly cathartic to write about the food I wish I were eating. And I’ve realized that the one commonality of all these foods is wheat. Like there was any doubt I loved wheat.

I won’t lie and say I’m OK with the diet. I dislike having so little variety and not being able to cook with herbs or spices. I have to eat way more meat than I’d like. It takes an absurd amount of time to shop and prepare food. Sometimes I have to work really hard to finish the swiss chard, bok choi or fish (and other times I just give up, knowing that if I force myself to eat something I’m really not into, I’ll gag and it will be even harder to eat in the future). Day 2 of the rotation diet was unequivocally terrible until a couple weeks ago and day 3 is full of pungent food that’s hard to eat if I have a migraine. Still, the benefits continue to outweigh the frustrations. Most of the time.