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A Neurologist’s Gifts of Skill and Compassion

Reader Joanell Serra wrote this thoughtful essay about her neurologist as a guest post for The Daily Headache. 

Injection-able Moments

By Joanell Serra

If you met my doctor in a coffee shop, you might guess he’s a bartender, or a school teacher. Not a renowned neurologist. He lacks the arrogance and aloofness of a typical top specialist.

Dr. M greets me like a friend in the waiting room, jokes as he hands me a three page patient release form, and chats as he fills an enormous syringe with toxins, steroids, and other potions. Today, he’s attempting to block my occipital nerve, the apparent culprit for my migraine.

The first time I came here, he asked me why I was switching doctors.

“My old neurologist doesn’t like immigrants,” I said. “He told me Trump was the only one who could save us. We needed to build a wall to protect ourselves from the Latinos, and throw the Muslims out too. I couldn’t go back to him, regardless of his medical expertise.”

“That’s terrible.” Dr. M commiserated. After a moment’s pause, he added. “I’m an immigrant you know.”

He explained his long history of migration, from the middle-east, through Europe, all the way to UCSF.

His fingers probe my scalp, until he locates a spot at the base of my neck. The needle goes in, pain waves coursing from my spine to my face, radiating from my jaw to the outer edge of my eye.

I try to be still while cursing quietly. This pain means he’s on track. He has the right spot.

“Keep breathing.” He says. “Think about a moment in your childhood.”

“Are you kidding me?” I blurt out. “That won’t help me relax!”

We stop while we both laugh, and catch our breath. We are temporarily joined in this partnership: he administers pain. I weather it. Together, we might beat this thing. Although the odds are against us. Most chronic migraineurs get worse over time, not better.

My headaches cause bizarre symptoms, but Dr. M consistently reassures me.

“Is it normal that it’s worse when it rains?” I ask him.

“Yes.”

“And that words move on the page if I try to read?”

“Absolutely. Common problem.”

“And my teeth hurt, my hands go numb, and I can smell onions cooking in a house around the corner?”

“Typical.”

He doesn’t offer me false hope, or an instant cure. But there’s healing in knowing I am not alone.

In a time when our politicians demonize immigrants, and threaten to expunge them from our midst, my health relies on the skills of this one. And I’m glad it does.

I’m so grateful Dr. M crossed the world to be here, in this moment, my doctor. Whatever made him immigrate—probably very challenging reasons—I’m better off for it, as are his many patients.

Dr. M brought with him not only a passion for medicine, and surgical skill, but warmth, a sense of humor, and an eagerness to partner with me in this difficult process. These are all gifts. I appreciate them. Even his skill with a very long needle.


Joanell Serra MFT lives and writes in Northern California. An award winning playwright, and short story writer, she has published stories in Eclectica, Blue Lake Review, Black Fox Literary Magazine, Poydras Review and LimeHawk.  She attended the Santa Barbara’s Writer’s Conference as a prize winner, and belongs to the Squaw Valley Community of Writers and the California Writers Club. Her story, Night Swimming was recently chosen and performed by Wild Sound Festival (June 2016).  She plans to publish her novel, Tangled Vines, in 2017. You can read more of her work and find links to many of her stories at www.joanellwrites.com.

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres.

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When Migraine Grief Refuses to Be Ignored

Migraine grief: Chronic Migraine keeps calling Grief and inviting it over to visit.Grief barged in at 3:18 a.m. It wasn’t too surprising—I’ve been slamming the door in its face for a week.

Facebook shows me Spanish tortilla with red peppers and peas. I want to read how the Cook’s Illustrated staff iterated to create the perfect dish, but know it will fill me with unbearable longing. I do not click through. Slam!

A character in a book mentions traveling to Ireland. Unbidden images of rolling green fields and castles fill my thoughts. Slam! The door is closed before I even realized it had opened.

But Grief keeps pushing its way in. Australia, New Zealand, Patagonia, Iceland—all the places I long to go, all the places I’ve been trying to avoid thinking of—scroll through my mind. Slam!

I throw my back against the door to prevent it from opening again.

Still, scones, chocolate chip cookies, and multigrain bread work their way into my thoughts. Slam! I cannot staunch these visions quickly enough. Not only can I not eat these foods, I cannot bear to bake them. The double loss threatens to invite Grief to become my roommate.

My efforts aren’t enough, so I erect a more permanent barricade in front of the door.

My therapist asks me to rate how severely I am grieving on a scale of 0-10. “Seven, when I let it in,” I say. After some back and forth, she tells me I am responding to my emotions skillfully. That to see Grief pounding on the door and choose to leave it on the doorstep because I can’t deal with the imposition is a healthy reaction.

The barricade works. What a relief.

Grief slips in through the forgotten crack at the bottom of the door.

Attempting to add pomegranate to my foods-I-can-eat list, I am rewarded with six hours of a migraine attack. I go grocery shopping when the attack lets up. Grief climbs into the cart and fastens the seat belt.

I try to push Grief aside as I fill the cart with the foods I can eat: romaine lettuce, butter lettuce, asparagus, red peppers, green peppers, watermelon, chicken breast, cream, butter. That’s it. Grief laughs. It reminds me over and over how fucking unfair it is that eating is my migraine trigger. It tells me I will never again eat peaches without paying in pain. It says that all my work to determine my triggers won’t actually result in fewer migraine attacks.

Grief hangs out for several hours. I feel boring and needy as I register the same old complaints with Hart. I have nothing new to tell him on this front. Grief keeps coming back for the same reasons it did last month, last year, last decade. No matter how much great work I do in therapy, Chronic Migraine keeps calling Grief and inviting it over.

Talking to Hart makes me feel better. I choose to change the subject and toss Grief to the curb again. Slam! I put the barricade back up and shove a towel in the crack under the door.

I find Grief lying in bed beside me when I roll over at 3:18 a.m. I’m too tired to try to kick it out. We talk for a couple hours, then Grief lets me go back to sleep. I suspect the reprieve will be short.

I awake in the morning to see the door hanging by its hinges. I can no longer deny Grief entry into my home. It is adamant that I entertain it right this second.

Grief and I have spent so much time together that I know exactly what to expect. Grief will detail everything I have lost to migraine, it will predict a future based on past scenarios, it will remind me that my actions have been futile thus far. I will cry until I am spent. Grief will ignore my exhaustion and overstay its welcome. (To do otherwise would be impossible; we both know it was never welcome.)

After Grief has its say and I regain some strength, I will tell it to leave. I will have to repeat myself multiple times before Grief finally complies. I will rehang the door and shut it gently. I will sigh in exhaustion and relief, hoping to have at least a few days of peace before Chronic Migraine summons grief to my door again.

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Miles for Migraine Raises Awareness, Research Funding

Miles for Migraine logoThrough Headache on the Hill, patients and healthcare providers lobby members of Congress each year to increase NIH funding for research into headache disorders. The first year, participants were told that they would have to raise “big noise” in their own communities to see a change. This is something people who advocate for more research funding hear often: lawmakers must believe that the people they represent care about migraine and other headache disorders. That is, we won’t get research funding until we raise awareness about the impact these illnesses on people’s lives.

Miles for Migraine Raises Awareness, Research Funding

In 2008, Eileen Jones decided to make big noise by founding Miles for Migraine. After attending the first Headache on the Hill in 2007, Eileen, a nurse who has migraine, founded Miles for Migraine to raise both funds for and awareness about migraine. Since the first race in San Francisco, Miles for Migraine has raised $79,000 for migraine research and advocacy. Their goal is to fund 30+ fellowships to train new doctors to become headache specialists. Prior funding recipients include:

Race Locations

That $79,000 is just the start. Last year, the race expanded to Philadelphia; this year, a race has been added in Chicago. Depending on the city, races range from one-mile walks to a full marathon. If you’re unable to participate in or attend a race, you can still get involved through Miles for Migraine’s virtual race.

Virtual Race

When Miles for Migraine comes up, people inevitably say that exercise is a migraine trigger, they’re too sick to exercise, or migraine makes their lives so unpredictable that they’re unlikely to be able to attend an organized event. I get this—all have been true for me at different times in my migraine life—and the people at Miles for Migraine get it, too. That’s where the virtual race comes in. You can recruit others to run for you, collect donations for a run/walk you do on your own (a short trip on the treadmill counts!), or you can fundraise without running at all. All those options raise both awareness of migraine’s impact on people’s lives and money for research and advocacy. Donations of at least $100 will get you a T-shirt and race goody bag. See Miles for Migraine’s virtual race on Crowdrise for more information.

2016 Miles for Migraine Races

  • San Francisco on Sunday, July 31: San Francisco Marathon (Mission Street & The Embarcadero); 5K Walk/Run, Half Marathon, Full Marathon
  • Chicago on Monday, September 5 (Labor Day): Naperville Last Fling (440 W. Aurora Avenue, Naperville, IL 60540); 1 Mile Run, 5K Run
  • Philadelphia on Saturday, October 8: Valley Green/Fairmount Park (120 W. North Western Avenue, Philadelphia, PA 19118); 2 Mile Walk, 5K Run, 10k Run

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Getting into a CGRP Drug Study for Migraine

Getting into a CGRP drug study for migraineThe logistics of finding a CGRP drug study are relatively simple—the hard parts are meeting the study criteria and living close enough (or being able to travel) to a location that needs trial participants.

Finding Clinical Trials

ClinicalTrials.gov is a registry of medical studies around the world. You can search for studies on any condition you’re curious about and can narrow the list by location. It’s the most detailed search, but can be overwhelming.

CenterWatch is another database of clinical trials. You can search studies and research centers by condition and/or geographic location. It has less information than ClinicalTrial.gov, but the format is easier to follow. CenterWatch offers a free email notification service of new trials.

The Center for Information and Study on Clinical Research Participation will search trials for you. Call 1-877-MED HERO or complete the online search request form to receive search results by email in about a week. (The trial search function on the website searches CenterWatch’s database.)

Current CGRP Drug Studies for Migraine

My search for migraine CGRP on ClinicalTrials.gov turned up 29 studies, many of which have already been completed. The ones that are currently recruiting are:

Don’t take this list as the only options—doing your own search with your own terms might turn up something I missed. You can save time by limiting results to the state you live in. New studies are added all the time, so be sure to check back for ones that you might qualify for. Or sign up for CenterWatch’s email alerts.

Study Eligibility

To really know how a drug or treatment works, researchers need to compare similar patients to each other. To do this, they must limit participants by certain eligibility criteria, which vary from one study to the next. Read through a study’s eligibility requirements closely—you may meet all the criteria except one (that’s usually the case for me). Frequency of migraine attack is a major criterion; how many preventives you have tried, drug allergies, recency of Botox injections, or having an uncommon subtype of migraine are some examples of other criteria.

Study Contacts

Depending on the study and where you’re searching, the contact may be a specific doctor or hospital, company that runs clinical trials, or a general contact phone number or email address. If you see the name of the center, but no phone number, Google the name and go from there. I’ve never had a central contact respond to email or phone calls, so I recommend trying every other possible avenue as well.

Talk to your doctor, too. They may know about trials in the area or have information on upcoming studies. This is most likely if you see a headache specialist at an academic headache center, but it’s worth a try even if you don’t.

What You Need to Know About Clinical Trials

Having the option of clinical trials is great for patients who need relief and want to try a new treatment, but they are still experiments. You may get a placebo. You may get the active drug, but at a lower dose than is effective. You may experience side effects that are not yet known. These risks are worth it to some people and not acceptable to others. If you are chosen for a study, ask every question you have and don’t agree to participate unless you are satisfied with the answers. Try to view the risks as objectively as possible to make the most informed decision you can. People can die during drug trials—that’s exceedingly rare and the CGRP drugs have had mild side effects in studies so far—but it’s important to try to keep your eyes wide open. It’s so easy to be blinded by a desire for relief (I speak from experience).

Learn More About Clinical Trials

If you’ve participated in in drug studies and would like to share your experience, please leave a comment or email me at kerrie[at]thedailyheadache[dot]com.

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Spring TMS: A Patient’s Experience

Spring TMS device imageOf all the new treatment roller coasters I’ve been on, the Spring TMS brought the most emotional ups and downs. I anticipated its release for 10 years, which means I’d stored up a decade of expectation. Nothing but a complete cessation of my migraine attacks could have lived up to that much hype. Here’s how the trial went for me:

Week 1

I still had constant head pain, but little fatigue and not much cognitive dysfunction. The reduction in fatigue and cognitive dysfunction brought enormous improvement to my quality of life. The pain was a 5 or 6, which is worse than my baseline pain level. It felt more like a headache than a migraine attack, though the pain was far more migraine-like than usual. It was centered around my left eye and temple (instead of an all-over throbbing pain). A couple ibuprofen took the edge off when the pain began to interfere with my ability to function.

Week 2

The migraine pain from the previous week was lower, but still present. I was fully functional with little fatigue or cognitive dysfunction, so I had no complaints. I celebrated by emptying the shed and reorganizing the entire house.

Week 3

I was still doing better than before I started using the Spring TMS, but my fatigue increased as the week wore on. Then I started getting slow-build migraine attacks (that’s my term, nothing technical, but I’m pretty sure the meaning is obvious). They seemed totally random, with no identifiable triggers. Then food that’s normally OK started being a trigger. Then the act of eating itself became a trigger (even with DAO). All the while, the fatigue kept increasing.

In this week, I noticed that I’d use the device and the migraine attack would let up, but return a few hours later. The length of this reprieve reduced steadily until I’d feel worse immediately upon using the Spring TMS. It’s like the device caused an instant rebound headache.

After spending two days laid up with moderate pain and major fatigue and cognitive dysfunction, I decided to stop the treatment.

Week 4

After I stopped using the Spring TMS, the fatigue slowly decreased as the week progressed, though some cognitive dysfunction remained. I wasn’t worried. It took a week to get over the initial side effects, so I figured it would take a week to return to baseline. I still thought I’d be able to use the device again when things settled down.

When a migraine attack struck an hour before an appointment and wasn’t responding to triptans. I gave the Spring TMS a try. I felt worse instantly and spend the rest of the day in bed.

Week 5

I was still spending more time laid up than before I started using the Spring TMS. I tried to keep the worry at bay, but the thoughts keep creeping up: “What if this is my new normal? What if I never go back to how well I was doing before I started the treatment?”

I kept reminding myself of an escapade with dizziness last February. My doctor said that a four-day migraine attack temporarily changed my brain, which made me more sensitive to the side effects of bupropion (Wellbutrin, a drug that has always made me dizzy unless I’m very careful with it). My brain didn’t normalize after that for two weeks. I used the Spring TMS for three weeks and my brain clearly reacted to it. I told myself that maybe it would take three weeks for my brain to settle down. Or three months. Either way, I told myself that there was no reason to think I’d feel this way forever.

Beyond

It has been many months since I stopped using the Spring TMS. Eating and drinking anything but water continues to be a migraine trigger. My overall pain levels returned to baseline, but I spend more time at higher levels of pain than before I tried the device. My fatigue and cognitive dysfunction did not improve beyond the fifth week (though the ketogenic diet has improved my cognitive dysfunction.)

I suspect it’s a coincidence that I became more reactive to food (and eating) while using the device, though determining cause and effect is impossible. My doctor said he’s had patients become worse while using the device, but I’m the only one who has had a permanent change. A friend also tried it and got worse, but she returned to baseline within a week of stopping it.

Parting Wisdom

Perhaps surprisingly, I would still encourage people to try the Spring TMS. Just be aware that your migraine attacks could worsen. Before you try it, talk with your doctor about that possibility and find out what they recommend—tough it out and hope the attacks will improve or stop altogether? Based on my discussion with my doctor, I would do the latter, but only you and your doctor can determine the right approach for you.