Goodbye, Chronic Migraine?!?

What I tried, and what worked for me.

By Kathleen Coffee

Shhh … but, I think my chronic migraines are … not so chronic anymore.

I’m afraid to say it. I’m afraid if I say out loud that I’ve found my “cure” – however incomplete, however temporary it may be – I’ll jinx it. Cross my fingers, knock on wood, throw salt over my shoulder, whatever it takes, but … for today, migraines are not the boss of me.

I suffered intractable, near-constant migraines starting in 2011. They affected everything: my job, my parenting, all of my relationships (note to self: call friends and ask if they remember me). I thought this “new normal” would define the rest of my life. But certain therapies, which I discuss below, seem to have forced the clouds to part. I am starting to see a rainbow. I know that this disease could come roaring back, but for months now, I have been able to function like a person without serious disability. I’m sharing my story in case you, or someone you love, suffers chronic migraine. Maybe you’ll want to talk to your doctor about one of the therapies below; or maybe they have all failed you. But the most important point is: I am proof the cycle can abate. THERE IS HOPE.

A caveat: My migraine treatment hasn’t been a careful, scientific endeavor to suss out what works. I begged my neurologists to throw everything at the wall, to see what sticks. It’s impossible to know if my half a decade lost to migraine would have resolved without intervention. Disease processes can regress to the mean. But I think I noted some significant improvement after the introduction of a couple of key therapies. (The most useful ones are toward the end of the list).

Morphine and Phenergan

ooo, look at you, morphine

This was Day 1 stuff. I had never had a migraine, and did not know what it was. I could only report to the ER docs that my head was broken and that I was seeing things. Elaborate, colorful things. Additionally, I assured them, I planned to vomit shortly. They dosed me up, took some blood, and took all sorts of images of my broken head. The morphine helped, but only for short periods. The Phenergan helped my nausea, but put me to sleep. Helpful stuff; but you can’t take it daily and go put in a good day’s work. And morphine is horribly addictive. Not good long-term solutions.

            Amitriptyline and Magnesium

My “little yellow pill” was the first thing my neurologist tried, along with magnesium supplementation. This combination seemed to reduce the frequency of headaches a little, so I have continued taking them. As you may have read, however, a study in JAMA showed that drugs like Amitriptyline, called anticholinergics, have been shown to cause brain atrophy. That study looked at older adults (a mean of 73 years old), but it made me nervous. My neurologist agreed to reduce my dosage to 25 mg., and I have not noticed any increase in migraine activity.

            Butalbital (Fioricet)

This combo of acetaminophen and caffeine with a barbiturate seemed to make my headaches worse. Maybe because caffeine is a trigger for me? I tried a version of this medication without the caffeine, and it helped some as an abortive med, if only to help me fall asleep. In the early days, all I could really do to come out the fog enough to partially function was to sleep it off. I used it enough that rebound headaches became an issue, and it made me too sleepy to work. Definitely not a good long-term solution for me.

              Sumatriptan

Triptans make me feel like my scalp is crawling with icy ants. The feeling is strange enough when I take the pill, but when I use a faster delivery method, like the auto-injector, it hits me really fast, as if I’m performing an ice-bucket challenge. But they sometimes seemed to help me wake up more functional. Again, triptans are only abortive, so they didn’t help with the ultimate goal: preventing migraines from starting.

            The one that makes you lose your words

How appropriate that, even now, I have trouble coming up with the word “topiramate.” At this point in my treatment, I was still losing a couple of days a week to migraine. My doctor was starting to talk about Botox, but first we had to satisfy my insurance company that I had failed one more drug. So my doctor, somewhat reluctantly, put me on topiramate, asking, “Just how important is the use of language to your job?” It turns out that topiramate causes "language disturbances" in a fairly large number of migraine sufferers. Well, I am an attorney who at that time was clerking for federal judges who would, it turns out, quite like their orders to be coherent. Using the word “squirrel” when “statute” would do was a nonstarter. I’m not sure I did experience language disturbances, but the stress of possibly sending a judge a word salad – and not being able to recognize it – terrified me so much it gave me migraines. (Note: I’ve read that side effect abates after a month; maybe I should have given it more time).

            Botox

Thank God for Botox. It is painful as hell, and once made a terrible fool out of me, but it works. I can feel it blocking the migraine as the pain spreads across my scalp. It’s like the pain hits a wall and can’t go any further. It reduced the number of migraine days by half, and reduced the severity of all the migraines. Once upon a time, I always felt like I had some degree of the illness active every moment. The Botox changed my life.

            Butorphanol

 Though the Botox helped a lot, I continued to suffer some knock-me-on-my-butt headaches. In frustration, I asked my current neurologist for something to just put out the migraine fire, something more powerful than butalbital. She gave me a nasal inhaler which delivers a synthetic opioid, butorphonol. I feel like I’m snorting a line of morphine up my nose … because I basically am. I have found that if I use it in conjunction with a triptan, I can wake up without a migraine. It is no long term solution, of course; we have an opioid crisis in this country, and I personally can’t function on the stuff. It makes me simultaneously high and agitated. Yuck. I appreciate the danger of this kind of addictive drug, and use it only on the rare occasions that I can’t function anymore. Thankfully, I have not needed it in months, due to the addition of the SPG to my regimen (below).

            B Vitamins

My neurologist said there is some evidence that certain B vitamins can help prevent migraines. I am currently using L-methylfolate and hydroxocobalamin (B-12) after she suggested that I use 23andme to determine my MTHFR gene mutations, in case that could help us identify the right supplements for my body. I did the test, then looked up which B vitamins worked best for my compound heterozygous C677T and A1298C genes. I’m not sure I got it right, but so far, so good.

            Sphenopalatine Ganglion Block

The SPG, a/k/a the Holy Freaking Grail, is simple: the doctor uses a device called the Tx360 to thread a little tube up my nose, and squirts some non-narcotic medication up there that, somehow, calms down my migraine machinery. IMMEDIATELY. The only side effect is a slight bad taste in my mouth. My neurologist used the SPG at first to abort a few acute migraines. They worked. So she entered me in a study in which she used it three times a week for six weeks, to see if SPGs could retrain my migraine machine. This was months and months ago, and it seems to have done the trick. Not only have migraines become very infrequent – there have even been thunderstorms I rode out unharmed, and those are usually my biggest triggers – but I don’t have the extreme sensitivity to light and odors that I had developed, with such acuity my daughter insisted I must be some sort of vampire.

            My experience is purely anecdotal, and definitely does not constitute medical advice. There is no telling if the same interventions will work for you. But I hope that this chronology is useful to someone, if only to make your journey feel less lonely. Questions, concerns, suggestions? Hit me up on Twitter @MadMigraineMom or on the blog at katcoffee.wordpress.com.

Use This Word 3 Times Today

I learn something new every day from the good people of the Beautiful Voyager Slack channel.

Today’s learning was a word. It was so good, I had to create this little illustrated definition to share it. Cwtch is a word I definitely want to start incorporating into my vocabulary. I what Urban Dictionary says about this word: 'There's no literal English translation, but its nearest equivalent is "safe place". So if you give someone a cwtch, you're giving them a 'safe place.'"

Thanks to my new Welsh friend for sharing this great word with me. I will be using it regularly and enjoying the nice warm dose of love that simply thinking about a cwtch gives me.

How to use it in a sentence:

• Jewish grandma-style: "Get over here and give me a cwtch."
• Happy-hour style: "I only want to go to a bar with a cwtch. I'm tired and want to lounge around."

How Thinking Can Be Like Moonwalking

Something my husband said sparked the insight. 

It happened in the middle of a difficult conversation. Not a fight. More of a How-do-I-make-you-understand-me talk. I was stuck, fixating on the details of how one thought led to another. Then suddenly, something he said unstuck me.

"Remember the story Forever Overhead by David Foster Wallace?" he asked. "Remember how the whole thing took place in just two minutes?"

(I did remember. It's a great story from Brief Interviews with Hideous Men. You can hear DFW read it himself here.)

My husband continued,

A person can fill any amount of time with an unlimited amount of thoughts.

That's when the insight struck in a felt way. The difference between The Stuckness and The Glide.

The times I've been happiest, my thinking glides. I'm not overly-self conscious in those moment. I don't try to track every thought. I'm not living in the DFW story.

I know what the glide feels like.  

I realize now: everyone can get hung up in stuckness. It comes and goes.

Getting stuck in your thoughts does not make you unusual.  

The key is to focus on the glide. Remember what it feels like. Look for it again, and reinforce it when it happens. 

Build on the glide, and you'll be good. 

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This was originally published on Oct 16, 2016 in the Bevoya newsletter. Subscribe here. I'm publishing it on the blog in response to a post I just read on Medium that reminded me about this insight. How quickly we forget!

Anxiety and People Pleasing

I've never been conflict avoidant (I could do a one-person Mortified of my stands taken at the wrong time). But being diagnosed with GAD has shown me how uncomfortable I am with personal discord.

View fullsize

Knope-like behavior.

I'll go out of my way to make sure that the people close to me—particularly boyfriends, best friends, and bosses—are happy with me. It's like seeking approval, but as it's the daily baseline, it's really making sure the status quo is intact. If things aren't the way they're supposed to be, I hone in on what needs to be fixed, and either get active to fix the problem, or ruminate at length (all of my twenties) on all of the possible things that could be wrong and possible outcomes.

So what's wrong with being a pleaser? People like a pleaser. Knope gets elected (doesn't she? I didn't watch the show after Season 2).

Outwardly, there's nothing wrong with it. But the problem is that working too hard to keep things status quo at all costs can mask deeper problems. They can keep a person from tuning in from what they're really feeling, or changes they may need to make. For me, they've led to big disruptions that happen when I finally "wake up" to what's really happening, as if from a crazy dream.

Not good.

I don't have the answers. But I think it starts with tuning in. If, like me, you've found yourself in similar patterns in the past and found that it's really, really important that the people around you not be mad at you, you might want to ask yourself why that is.

This part is easier for me to write than to believe: you can't always please the people you want to. They are going to be upset with you at times. Allowing that to happen, and seeing where it leads without trying to "solve" it immediately, might help you down the line.

(Meredith, you should listen to this person, seems like she knows what she's talking about...)

Originally published Jan 07, 2016. Updated March 13, 2017.

All About Mindfulness

By Alice Arthur, age 7

Mindfulness is fun. It is paying attention to the minute. Be aware of your feelings because if you are mad or sad you could act like hitting or yelling at he or she but if you take it

pictured: the hitting person who isn’t aware of their feelings

slow you will feel better. Just tell he or she or say please stop. A good way to do it is sitting down in a quiet spot and listen to what is around you.

pictured: tears of telling someone to please stop, someone who is laughing

Riddle. Mind full or mindful?

But mindfulness is not just sitting. You could be mindful walking, eating, breathing, reading, or even playing! All you have to do to be mindful is pay attention to the minute.

pictured: girl and dog. girl is being mindful, aware of the moment she is in.

Instructions. Pick from 1.

Find chocolate chips. Put them 1 at a time in your mouth. Let them melt in your mouth before you swallow.

Instructions.

Put glitter in a jar. Shake it up. Pretend your mind is the glitter. When it is crazy your mind is crazy.

Collect them all!

Books by Alice

All About Pets. All About Spatula Fights. All About Birds. All About Dogs and Cats. All About Ninjas. How to Make Friends.

About the Author

Alice Arthur lives with her mom and dad in San Francisco, California. She loves to rock climb, dress up in costumes, and make funny faces.

Everyday Strength and Confidence

How Love Lives on After Death

Last week, my mom texted to ask if we could talk in the middle of the day at work. This was unusual, and I was immediately worried. I called her from my office's small "meditation" room.

She told me that she had just spoken with my dad's old law firm. They needed to make a change to their name. It was just getting too long. My heart seized up. My dad died in 2013, and had been sick for years before that. I couldn't blame them for removing him from the masthead, could I?

"I thought the same thing, Meredith. I was scared too," said my mom. " But they were calling to tell me they were dropping all of the other names instead. That they would now be called Arthur Law Firm Co LPA. They feel that name best represents what they fight for every day."

I don't know how to express in words what it means to me that in Defiance, Ohio, there is a law firm that my dad started so long ago, and it still bears his name, and it's filled with people standing up for "the little guy" (dad's phrase) in this rough and inhospitable climate.

It gives me an extra daily shot of strength and confidence to think of this firm and the people in it. Thank you for this gift,  Arthur Law Firm. And thank you dad throwing some extra confidence my way in 2017.  I miss you.

Note that my shirt says "bad pig" on it. This makes me laugh while I'm crying.

---

Rodney Arthur was a pretty incredible man. Read about what he valued and fought for in his career. Donate to Cure Alz in his name and make me smile from ear to ear.

Mindful Dirt Balls

Still taken from video by Jenna Close and Jon Held.

Unexpected Transformations and the Art of Hikaru Dorodango

This was once a pile of dirt.

I came across this post on thisiscolossal that blew me away. It describes an entire Japanese art form I've never heard of before. It's called hikaru dorodango (which translates to "shiny dumpling"). 

What you're looking at above is a shiny perfect sphere...of dirt. Hikaru Dorodango is the art of making dirt into extremely fragile, incredibly beautiful sculptures. It's an art of process, not outcome. Can I say that again?

It's the making of the spheres, not how long they last or the outcome, that is meant to be focused on.

In other words, hikaru dorodango is a mindfulness practice. I find this an inspiring and stunning testament to the act of creation. Check out the dorodangos on the shelf:

Hours of work have gone into these simple globes. Still taken from video by Jenna Close and Jon Held.

Hours of work have gone into these simple globes.

And yet, if someone were to turn on a strong hose, they would all disappear. But in the process of adding fine layer after layer of dirt, something is created, and it's not just the perfect ball. It's a sense of peace, calm, and connection with the earth.

Creativity is part of the core foundation of Beautiful Voyager, just like meeting other people is. The act of creation, and appreciation of creation, is a natural vaccine against stress. Use it when you can. I find just looking at these shapes—these rounded shiny globes made by human hands—very soothing. I hope you do too.

See a very cool video of Bruce Gardner's process of creating dorodangos here.   

Originally published March 28, 2016. Updated February 18, 2017.

Watch Out! Your Brain is Listening.

When you say things like,

"This sucks."
"I don't think I can do this."
"If only life were different in this way."
"I hate this."
"Everyone always does this."
"I don't want to do this project/work/school."
"I'm not in the mood."
"I can't."

Your brain is taking notes. 

That's why it's important to keep an ear on how you talk to yourself.

Keep the cortisol out of your system. Reform positive neural pathways. Watch your words.

We are only now beginning to understand the impact of language in forming cognition (and emotion). Here's a line from an insightful piece on combatting stereotypes:

"It is the form of the sentence, not exactly what it says, that matters to young children."

 When my daughter says, "I don't want to go to school today. I don't like school." or "I can't read this book. I can't do it," I always say to her, "Watch out! Your brain is listening!"

"This isn't so bad.."
"I think I can do this."
"There's no such thing as 'if only.' There's only what is."
"I'm not comfortable with this. Might be a good idea to meditate before I do it."
"Sometimes people do this."
"Let's see what happens today in this project/school/work."
"I'll try."
"I can."