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 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, 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 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.


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.


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.


Effective Migraine Treatments for Me

migraine-treatmentsKeeping up with the ketogenic diet and coordinating a new treatment (more on that soon) are taking all my energy right now. But I wanted to share my response to an email from someone who asked what my migraine attacks were like before I started DAO and what other migraine treatments I have tried. The list is too long to compile; instead, I summarized the migraine treatments that have helped me since finding the first somewhat effective one in January 2010. It’s an interesting snapshot.

I’ve had a gradual lessening of the pain since adding various treatments over the last six years. Before that, the pain rarely dropped below a 7 and regularly reached an 8-9. I also had a handful of attacks with level 10 pain, though I am very reluctant to rate my pain as a 10.

January 2010: Began using the NuvaRing continuously. Didn’t affect my baseline pain levels, but stopped the level 10 pain that came with menstrually associated migraine attacks.

November 2010: Moved to Arizona from Boston (weather was a major trigger for me). Made the migraine attacks a little more manageable, but I can’t quantify the improvement. The biggest part is that it freed up some of my energy to began researching and trying different treatments.

January 2012: Began taking about 700 mg of magnesium a day. After that, the pain ranged from 4-7 and occasionally got higher than 7 (maybe several times a month). I ultimately pushed the dose to about 1,000 mg a day.

August 2012: Began taking 12 mg of cyproheptadine. Pain ranged from 4-6 and hit a 7 an average of three times a month.

January 2014: Began DAO (diamine oxidase) in conjunction with a heavily restricted diet. My pain typically ranged from 2-4, but hit a 5 at times. This is when triptans (Amerge) were first effective for me, so I was finally able to abort migraine attacks before they got bad.

March 2015: I once again began getting migraine attacks every time I ate. The pain is usually 2-4. It sometimes hits a 5, but doesn’t get above that. Amerge is not longer a reliable acute medication. Fatigue and cognitive dysfunction are now far more disabling for me than the pain.

January 2016: Began a ketogenic diet. In the last month, I’ve been able to eat 250 calories without always triggering an attack. I typically still have at least one attack a day. (In addition to eating still triggering some attacks, I am much more sensitive to other environmental triggers and can’t go out in public without having an attack.) Amerge helps inconsistently. My pain ranges from 2-4. I can’t remember the last time it was a 5. The cognitive dysfunction is a lot better, but the fatigue is still disabling.

(I followed up with another email clarifying that I have particularly intractable chronic migraine and that this man’s wife will likely find an effective migraine treatment far more quickly than I did.)


Ketogenic Diet and Hypoglycemia

ketogenic-diet-and-hypoglycemiaGrief had me wide awake at 3 a.m. on Saturday, I was trying to figure out which chores I could cram into the 14 hours before I returned to the land of migraine disability. I had admitted defeat with the ketogenic diet. One more meal was all I had left on the diet; dinner would take me back to migraine as usual.

Ketogenic Diet and Hypoglycemia: Cause and Effect

Frustratingly, even though the ketogenic diet reduced my migraine attack severity and enabled me to be more functional, it also caused hypoglycemia—which is in itself a migraine trigger. Despite a month of various fixes, I couldn’t get it under control. (I’ve actually been wrestling with it for two months. That awful nausea I attributed to dehydration was actually hypoglycemia. The wrung out feeling I woke up with each day was the fallout from hypoglycemia-triggered migraine attacks that came on while I slept.)

How I Discovered Hypoglycemia Was the Problem

After increasing to 2500 calories to gain some weight back, I woke up each day ravenous and shaky. This seemed odd—how could I be hungrier than when I ate 1700 calories a day? Knowing that a ketogenic diet could cause hypoglycemia, I began researching. Not only did I discover that it was likely I had hypoglycemia, but the nausea and accompanying symptoms of the previous month fit the pattern of reactive hypoglycemia perfectly.

Reactive Hypoglycemia

Reactive, or postprandial, hypoglycemia occurs two to four hours after eating. It’s usually a crash after eating a meal high in carbohydrates. Although I wasn’t eating many carbohydrates, my blood sugar was so low the rest of the time that I’d crash after my meal each day. It would start two hours after the meal, but I’m so used to ignoring vague physical symptoms that I didn’t notice until they got bad. Which they did like clockwork six hours after eating every night.

Treating Hypoglycemia

The treatment of mild hypoglycemia is relatively easy: eat small, frequent meals and eat a dose of carbs whenever your blood sugar dips too low. The latter was obviously out (it’s hard to dose up with carbs when you are limited to 15 grams a day). The former didn’t work for me either, since I still had a migraine attack every time I ate, so I could eat no more than two meals a day.

Desperately Searching for Fixes

I spent a month trying every possible fix I could imagine: increasing from one to two meals a day, eating the same ratio with less protein and more carbs, a lower ratio, 100 calorie snacks that didn’t seem to trigger migraine attacks (they did, the attacks just built slowly), eating more in the morning, 1 gram doses of sugar, more calories… Nearly everything worked for a day, then became ineffective. I tested my blood sugar so often that my fingertips developed callouses.

Magical Thinking

An idea came to mind a couple weeks ago that sounded like pure magical thinking: What if I increasing my ratio to 4:1 (that’s 90% fat) made the diet more effective and enabled me to eat small meals without triggering migraine attacks? I ran it past Hart and my naturopath. They both agreed with the magical thinking hypothesis.

Going for Broke

I didn’t give up on Saturday. I was clinging so desperately to the good hours that I decided to give the 4:1 ratio a shot before calling it quits. I began yesterday by cutting my protein in half so I could keep a relatively high carbohydrate content for the transition period. By evening, I felt remarkably good. I managed three 114 calorie snacks in less than three hours without a migraine attack. A migraine attack didn’t even come on in the night.

Today’s meal plan increased the protein and decreased the carbs some. Four 114 calorie snacks later, no migraine attack ensued and my blood sugar was fine (still on the low end, but manageable). Things went downhill when I ate an actual meal—it triggered a migraine attack and my blood sugar tanked. Several small snacks helped me recover and I’m up and thinking again.

Research Soothes My Worries (a Bit)

Today I learned that a person’s blood sugar range tends to be lower on a ketogenic diet than it normally is. Anything below 70 mg/dL is typically considered hypoglycemic, but 55-75 mg/dL is typical on a 4:1 ketogenic diet. This isn’t a cause for concern as long as the person doesn’t have hypoglycemia symptoms. Also, it can take a full week for one’s blood sugar to stabilize when starting on or changing a ketogenic diet. That means all my dietary tweaks have probably done just the opposite of what I intended. (I am not a medical professional—PLEASE don’t take my word for any of this information. If you’re struggling with a ketogenic diet and hypoglycemia, work with health care professionals to determine the best approach for you. I’m being very careful and consulting with doctors and dietitians as I attempt this unorthodox experiment. Still I worry my low blood sugar is causing long-term harm to my brain. I’m seeing an endocrinologist next week and am going to try get yet another opinion from a neurologist at an epilepsy clinic. Maybe then I’ll find peace of mind.)


Obviously, there are a lot of kinks to work out, but I feel like I’m getting closer to getting them sorted. Although most of my earlier fixes didn’t last long, they were all focused on increasing my carbohydrate content. Eating more frequent meals is a far more sustainable option—and one that seems like it could work. I’ve come close to admitting defeat countless times in the last two weeks. I have shed so many tears that I’m distrustful of possible indications of success. But the signs are promising, so I’m still hopeful.


Updates to Post on Migraine Drugs & Cognitive Dysfunction, Dementia

I accidentally published an old draft of the post on migraine drugs and cognitive dysfunction and dementia is older adults. Here’s the substantially updated version.