The Migraine Chronicles Is Now a Proud Partner of the American Migraine Foundation!

It’s been a while since I’ve written (more on that later), but I have some exciting news to share with you all. The Migraine Chronicles has joined the American Migraine Foundation to fight debilitating head pain together!

As part of my ongoing commitment to providing meaningful information, resources, and support for those living with migraine, I’m thrilled to announce my new partnership with the American Migraine Foundation.

The American Migraine Foundation is the official resource for millions of Americans living with migraine who are seeking reliable information about diagnosis, treatment, and advancements in research. Launched in 2010 as a patient support and advocacy effort of the American Headache Society, AMF’s mission is to mobilize a community for people living with migraine and their support networks and to drive impactful research into the third most common and sixth most disabling disease around the globe.

“The Migraine Chronicles is a cornerstone organization in the migraine world. It is truly an honor to work alongside them as we #MoveAgainstMigraine,” says American Migraine Foundation Executive Director Meghan Buzby. “We look forward to continuing to make an impact together.”

Like I am, the American Migraine Foundation is dedicated to helping people with migraine live meaningful and pain-free lives. I’m excited to join forces with AMF to provide continual support, advocacy, and treatment innovations to people living with this disabling disease.

The American Migraine Foundation supports people living with migraine by providing free, comprehensive information sourced directly from headache specialists; by maintaining a searchable database and map to improve access to headache specialists; by investing in research efforts toward new, innovative treatments; and by creating support networks and communities where people with migraine can support and learn from each other.

I couldn’t be more excited about this collaboration. Be on the lookout for additional resources and enhanced communication from me in the very near future.

Together, we are as relentless as migraine.AMF_Partner_Logo-04

Moving + Holidays = Not a Great Idea

Living with chronic illness uses up a lot of spoons. As does moving. As do the holidays.

Putting them all together then isn’t a good idea.

And yet I did it anyway.

I do a lot of things anyway (like saying “yes” to “one more” project when my plate is already incredibly full, going to concerts, drinking beer, and staying up way too late on occasion) because life is too short to let a couple of diseases run how I live it, but this one may not have been my best call. Moving at Christmas is simply not an easy task. It takes a lot of spoons.

Calling to set up new services. Calling to cancel old ones. Packing. Reserving, picking up, loading, unloading, cleaning, and returning the U-Haul. Unpacking. Setting up. Decorating the tree, twice. Buying a fridge and food to fill it. Making said food.

It’s a lot of spoons, y’all. Just. A lot. 

Add the fact that both of my kids were out of school and underfoot in a new neighborhood with no friends, and I believe I must have been temporarily out of mind to agree to such a thing. Surely.

I did take ten days off of work to accomplish the task, which made me optimistically believe I could survive the month of December without triggering a migraine flare. Of course, that didn’t happen. I ran out of spoons on about the third day and spent a great deal of my vacation trying to do everything I needed to do while feeling nauseous, dizzy, and like I wanted to bash my head in with whatever was close at hand.

Thankfully, this has passed. We’re settled now, and things — including my brain — are starting to regain some sense of balance. Mostly.

One of the things that happen when I experience a severe migraine flare is that my right arm acts up. It gets weaker and sometimes chooses to ignore the tasks my brain assigns to it. It also hurts.

Thankfully, I found something that helps the nerve pain: the Salonpas products. A while back, the company sent me some free samples for my review on this blog (full disclosure). I don’t generally put too much stock into such items because I’ve been duly unimpressed with almost as many free trials as I’ve been given, but these were different. These — especially the lidocaine cream and patches — worked.

I’m still using the products because my migraine hasn’t completely returned to baseline yet, and my hand and arm are still wreaking havoc on my ability to type, cook, and bathe. Since I also gave a sample to a relative with fibromyalgia (who says it’s helping her, too) and I’m almost out, I’ll be ordering some soon to add to my migraine toolkit. You know, for when I — inevitably — run out of spoons.

How Much Should #CGRP Treatment Cost? Weigh In! #migraine #advocacy

We’ve all had those moments when — even armed with an insurance card and/or a prescription savings card — we’ve had to walk away from a pharmacy without our prescriptions or decline an infusion at our doctor’s office or clinic because the price for treatment was simply too high. Today, we have the opportunity to make sure the new CGRP treatments for migraine aren’t priced out of reach.

Right now, the Institute for Clinical and Economic Review is reviewing erenumab, the first CGRP submitted for FDA approval, to determine if it is cost-effective. Its review and final report will have an enormous impact on the day to day lives of many of us living with migraine.

“Insurance companies will use ICER’s final report (as well as other information) when determining if they will cover this medicine (and other medicines in this class that are expected to follow), what tier the medicine will be in on the plan’s formulary, and what types of prior authorization or step therapy will be required. All of this will heavily impact the access migraine patients have to this new class of medicines.” – The Headache and Migraine Policy Forum, Patient Guide for ICER Review of New Migraine Medicine

The ICER is asking for patient input to accompany the droves of information it will be  receiving from biotech companies, health economists, health plans, and medical providers. If you live with migraine, this is your chance to step in and explain what it is like to live with this disease every day and to shed a light on the disability experienced from migraine’s wide-range of symptoms. That information is vital to ensuring we all have affordable access to something that may significantly improve our quality of life.

Patient reports must be received by the ICER by November 30, 2017. This is a short deadline, but your input is crucial! Please consider submitting a response today. The link to the submission form is here: https://icer-review.org/patient-guide-to-open-input/.

If you aren’t sure what to say or how to say it, The Headache and Migraine Policy Forum has some tips and suggestions. They’re also hosting a free teleconference for patients on Tuesday, November 28 at 3:00pm ET, which will address the input period and how to make your voice heard. (Register here.)

It sometimes feel scary or overwhelming to define our experiences with chronic migraine, but now is the time to be heard. Please act now! United as one voice, we can make a difference.

Want to learn more about the CGRP drugs? Check out these posts on Migraine.com:

CGRP Drugs for Migraine: A Patient’s Experience

Questions for Your Doctor Regarding CGRP

CGRP Clinical Trial Update

Migraine and My New Love/Hate Relationship with Flying

Another_Airplane!_(4676723312)
Attribution: Photographs by xlibber

Like most ENFPs, I love to travel. The novelty of a new place (with its new sights, new people, new smells, and new adventures) never gets old. Yes, every big city is similar in many ways to every other big city (just as most small towns are similar in certain ways), but the differences between them – no matter how small – thrill me. I am happiest, in fact, when I have a trip scheduled for sometime in the next six months. As long as I know I am going somewhere soon, the normalcy of my everyday routine doesn’t get me down.

You can understand my disappointment, then, when I realized that I may soon have to change either the frequency at which I travel or the way in which I do it. Flying, it turns out, makes me dizzy, dizzy, dizzy. I’m talking days of dizziness. Weeks of constant vertigo. And it took me until this year to realize it.

Earlier this year, I flew to Philadelphia for a four-day trip. Though I was slightly dizzy the day we arrived, the vertigo quickly dissipated and I had a wonderful time at my conference and touring the city. Once I arrived home, however, I had the worst vertigo of my life, and it lasted for three weeks. 

Once it eased, I wrote it off as an anomaly. (As I am wont to do with most of my weird migraine symptoms.) Until, that is, I traveled to San Diego last week for another conference.

Once again, the flight there wasn’t too big of a problem. Though I almost passed out from vertigo at one point during the first day,  a two-hour lunch break in bed restored me for the rest of the trip. Arriving home, however, was an entirely different matter.

It’s been five days, and the room is still spinning. I ran into a couch on the way to the kitchen this morning, and I had to cancel a doctors appointment because I couldn’t trust myself to drive. I’ve been working primarily in bed instead of at my desk all week, and I haven’t been to the gym once.

I’m also about to leave on another trip, this time for five days to Florida.

I haven’t had two long-distance trips so close together since my vertigo worsened, and I’m truly wondering how it will go. Apparently, vertigo after flying isn’t uncommon for those of us with vestibular migraine and/or migraine associated vertigo, but I’d certainly never heard of it before. Now, all I can do is refill my Valium (which my neurologist gave me for vestibular symptoms) and hope for the best. Oh, and make a promise to myself to never again schedule back-to-back air travel, of course.

 

 

 

Vacation Lessons and Wellness Wednesday

PaloDurobackyardview

I recently spent a week with my husband doing little but looking at this view of the Palo Duro Canyon from our rented patio, stargazing from the outdoor hot tub, and relaxing. We unplugged completely. No news. No work. No social media. No other people.

It was heaven, and I didn’t have a severe migraine attack the entire time we were there.

The low-level pain, nausea, and vertigo of the ongoing disease are almost always present, but that’s where they stayed. At low levels, in the background. No major attacks. No big flares. It was the most peace I’ve had in months.

When we came back, I immediately had to do what we all have to do when we get back from vacation: I had to make up for being away. My first day back at work was a “regular” Monday. I clocked 13 hours, made my family three meals (plus snacks), cleaned here and there, served as partial entertainment for a four-year-old boy, and kept my ears tuned to the TV and social media for updates on Harvey, my city, our (flooding) surrounding areas, and our friends (many of whom were evacuating.)

By 1 p.m., my pain level and other symptoms had increased with a vengeance.

While I expected this, it still got me thinking. What can I do to reclaim a little of that Palo-Duro peace for myself during the regular week? How can I take care of myself, and my health, like I did over the course of those blessed and restful days?

I recently read a post from another writer talking about reclaiming Wellness Wednesday as a day for health. She said she was going to spend each Wednesday, taking the entire day off and nurturing her body and her mind. This idea intrigues me.

I’m not sure I’m capable of making that kind of commitment right now, as I have so many other commitments already. But I’d like to try. At the very least, it will remind me that I need to prioritize myself and my health just as much as I prioritize everything else. We women, especially those of us who are moms with chronic illness, tend to need that reminder.

What about you? Do you do anything on a regular basis to prioritize your well-being and your health? What is it? 

Migraine Presents Differently For Us All

The online world is full of articles, infographics, and stories from those of us with migraine about things we wish those without migraine knew and understood about the disease. There is much less such information written to others with migraine, but I think there should be.

The disease presents so differently for each of us, and we’re all at such different stages of living life with migraine. That’s why I recently wrote a piece for Migraine.com about what I wish others with migraine knew about my disease. Read more here: https://migraine.com/living-migraine/the-differences-among-us-what-i-wish-others-with-migraine-knew/.

What about you? What do you wish others with migraine knew about how the disease presents for you? I’d love to hear what you have to say.

The Meds of Medusa

This is a wonderful post from a friend of mine who also writes for Migraine.com. Like my friend, I have walked an arduous path with my migraine disease. Like she has, I have tried nearly everything ever recommended to me. Like my friend, my disease still cycles through periods of near hell. Those of us who have been walking with migraine for a long time do what we can to survive – and thrive – through those toughest times. Thank you for sharing your story, Lady Migraine! I applaud your bravery.

lady migraine 365

As my neck is still horribly stiff and painful in a way that feels connected to the 9 day old migraine that was finally obliterated on the second floor of Wood County Hospital Friday morning at 10 am, I am sitting here thinking of the amount of medication it took to truly break it. In a way, this isn’t the most accurate way to think of it – 1 headache, 29 doses of medicine. Many with chronic pain will never feel a “0” on the pain scale again in their lives, but I do, and often. My migraine attacks are still able to be identified as individual episodes. The seven days prior to my first ER visit Wednesday, I was able to keep the pain low enough most of the time with Imitrex or Fioricet and Zofran tablets and over the counter helpers like Dramamine and Benadryl and Sudafed to…

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