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Ketogenic Diet Update: Six Months of Ketosis

Six months into a ketogenic diet is a sort of milestone among dietitians. It’s when the body really adjusts to the change—cholesterol settles down and other blood levels that have been out of whack do, too. Here’s where I am after six solid months of ketosis.

Hypoglycemia

My blood sugar has finally stabilized and the hypoglycemia appears to be under control! I think it’s from a combination of time for my body to adjust to the diet and eating so many calories in a day that I can get in enough carbohydrates. I’m eating 13.8 g of carbs each day; at the lowest, I was getting 3 g. It has stabilized enough that I can eat only two meals a day and can exercise without a blood sugar crash.

Migraine

I am less reactive to foods than I was before I started the diet, but everything I eat is still a migraine trigger. Certain foods are less bad than others and I’m slowly adding in more foods. Now that I’m back to two meals a day, I can take abortives after both meals and remain functional most of the time. (Someone will read this and inevitably be concerned about medication overuse headache/rebound headache. My doctor and I are on top of it.) Sometimes I barely feel the migraine attack at all. The last couple days, I’ve basically been back to where I was before the DHE infusions last summer—I still have a migraine attack every time I eat anything, but they mostly respond to medication (though I have fewer foods than I did then).

Weight

The weight loss seems to have stabilized, too. I’m remain at about 18 pounds below my ideal weight even though I try to eat 2,100 calories a day. I don’t know if I just need more calories on a ketogenic diet than I normally do or if I haven’t been hitting my calorie target. My guess is a bit of both. It’s easier to get in all my calories now that I’m on two meals a day, so we’ll see if I gain any weight.

Ketogenic Diet Ratio

When I noticed that I was no longer having hypoglycemic episodes, I increased my ratio from 3.75:1 to 4:1. It was too much—I went considerably deeper into ketosis, my migraine attacks became more frequent, and I lost weight. I also tried to decrease the ratio to 3.25:1 and a significant migraine attack ensued; it was too little. My sweet spot appears to be 3.75:1.

(I’ve learned that a 4:1 ratio is normally verboten for adults who aren’t in imminent danger of death because it’s impossible to meet protein needs within our calorie constraints. Since I have an extra 400 or 500 calories to play with, this doesn’t apply for me right now.)

Vitamin & Nutrient Deficiencies

So far, the diet has caused me to be deficient in iodine, potassium, sodium, chloride, and various B vitamins. I’ve been able to supplement (and use more salt) for everything except the B vitamins. A bad history with multiple different B vitamin supplement has me reluctant to try one. I think today is the day I’ll be brave.

Unexpectedly, my vitamin A is too high. It happens that the least migraine-triggering vegetables for me all happen to be high in vitamin A. Plus, vitamin A is fat-soluble and I always eat it in conjunction with a ton of fat.

Erratic Blood Work

My labs have been all over the place in the last six months. A level will be way high one month and back to normal the next without any change on my part. Almost every level that had been out of whack is back to normal or close to normal as of July 13. I won’t have my cholesterol checked for another couple weeks, but I’m actually hoping it will remain on the high end. One of the preventives on my list to try is a statin, which lowers cholesterol.

My Current Thoughts on the Diet

In summary,

  • I’m not hypoglycemic
  • I no longer have to eat more frequently than my meds can keep up with
  • I’ve stopped losing weight
  • My vitamin deficiencies are minor and so far manageable
  • My labs are pretty good

Obviously the ketogenic diet hasn’t been a slam dunk for me, but it is helping. After spending May and June thinking I would have to abandon it any day, it no longer seems untenable. It’s not ideal and can’t be my final strategy, but it’s getting me through. Now my goal is to maintain the diet long enough to support an aggressive trial of five or six different preventives (not simultaneously). Realistically, that’s probably at least until the end of the year.

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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.