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Exhausted and Frustrated By Migraine Diets

blank menuI narrowly avoided bursting into tears at a Thai restaurant last night. Hart and I are in San Diego with a dear friend for the American Headache Society conference. I wanted to spend time with them and (inexplicably) thought watching them eat one of my favorite cuisines wouldn’t be a problem. The wonderful smells hit me half a block from the door. I lasted long enough to snag a table while Hart and our friend ordered, then jumped up and nearly ran to get away from the reminder of how much I’m missing with these endless migraine diets.

Similar incidents have become more frequent in the last year, though this was the worst one. I usually stay home to avoid them altogether. After three-and-a-half years on restricted diets, being around food became agonizing. That was a year ago. Now I’ve been on restricted diets for four-and-a-half years and everything I eat or drink other than water has been a trigger for 15 months. Nearly every day I wonder how much more I can bear.

One of my favorite things—which is also required for survival—is a minefield. I worked for years to determine my migraine triggers. I did exactly what doctors and patient advocates and every migraine book say to do. The task felt impossible, but I finally found my very worst trigger. And learned that while my health care providers are compassionate and apologetic, they don’t know how to help. I become overwhelmed by the injustice of this if I allow myself to think about it.

I’m not trying to hold back the grief, but am trying to experience it without increasing my anger and sadness by dwelling on the unfairness. But both grief and a sense of unfairness are always lurking. Thinking about food fills me with dread. I don’t join my friends and family for meals. I rarely bake and don’t enjoy it when I do. I no longer express my love by feeding people. I am sacrificing an essential part of myself (my self) to satisfy the migraine gods. In my most frustrated moments, I am convinced the migraine gods scoff at my offering.

I have felt like I’m on the verge of breaking for months. I want desperately to stop the diet, but feel like I can’t. The ketogenic diet continues to keep me somewhat functional. I want nothing more in the world, so I keep eating this way. For now. I know that every other food-based intervention has eventually quit working. This one will almost certainly expire, too. I haven’t broken (whatever that would look like) because I can imagine the future. I would be furious with myself for throwing away low-migraine days when they were possible.

People often assume the only reason I can stay on these diets is because I don’t care about food as much as they do. I so wish they were right. Food is one of my core values. Figuring that out with my therapist last summer was illuminating. All my grief and frustration aren’t about not being able to eat what I want without having a migraine attack. They are about having an essential part of my being eclipsed. These diets are technically a choice, but the other option is being eclipsed by more frequent and severe migraine attacks. I’d be trading a bad situation for an even worse one.

Tenuous and fragile are the adjectives that have dominated my year. The current incarnation of my diet is allowing me to function somewhat, but for how long? This is the last diet on the list for me to try, so what happens if/when it stops working? (That’s a rhetorical question. Please don’t give me suggestions, they will only inflame me right now.) What treatment is next? Where do I go for guidance when medical knowledge has reached its limit? (That’s another rhetorical question. No suggestions, please.)

Even my parenthetical statements show how fragile I am right now. I know I’ll figure something out. I’ll find more information and more treatments to try. I am not defeated, just exhausted. And so frustrated.

I’m in San Diego for the AHS conference, but am unlikely to be up to attending any of the sessions. I’ll still try, but self-care is my backup plan. I’ll read and enjoy the cooler air. I’ll take a look at the ocean. Maybe I’ll book a massage. I’ll spend whatever time I can with loved ones. As long as it’s not while they’re eating.

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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.)

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Migraine Prevention With CGRP Drugs: Cost, Safety

migraine-prevention-cgrpYou’ve probably heard that monoclonal antibodies that inhibit CGRP are the exciting treatment in development for migraine prevention, but details have been scarce. New Migraine Drugs Promise Relief—But at a Steep Price is a different look at the drugs than has been published thus far. I’ve hit some highlights below and added my own thoughts, too.

Migraine Prevention is Costly & Access is Restricted

  • Monoclonal antibodies are made from living cells and are expensive to produce. They are among the most expensive drugs on the market right now.
  • Experts the writer interviewed gave cost estimates of between $8,000 and $20,000 per year. The CEO of Alder BioPharmaceuticals, which is one company working to develop these drugs, compared them to antibodies used to lower cholesterol. Those cost $14,000 a year when they came out. “I suspect we might be in that ballpark,” said Alder’s CEO.
  • Insurance companies tend to restrict drugs with hefty price tags. Think about the hoops people have to jump through for Botox, which costs insurance companies $6,000 to $10,000 per year.
  • Like with Botox, many insurance companies will likely require patients to fail trials of other medications before approving them for these new drugs. It’s likely that Botox will be one of those drugs that patients have to fail.

My Thoughts on Cost

  • How many insurance policies will simply exclude these drugs? Writing this post prompted me to see what Botox costs with my current insurance coverage (which I’m quite happy with). I assumed I would have to pay 30% of the cost. Nope, Botox is not covered at all. Even if it my doctor says I need it and even if it’s the only drug in the world available for my condition, my insurance will not cover Botox. Will they really cover an even more expensive drug?
  • Although studies are looking at both episodic and chronic migraine, I wonder how difficult it will be to get insurance companies to cover the drugs for people with episodic migraine. Drug coverage restrictions often center around quantity, but what are the rules are for a drug where quantity is always the same? If a drug has FDA approval for episodic migraine, can insurance companies require that a person have a minimum number of migraine attacks per month before they’ll cover it? If so, will this ultimately mean only people with chronic migraine get the drug?
  • On the bright side, these new drugs are likely to bring down the cost of Botox.

 

Drug Safety is Still in Question

  • These drugs are in Phase 2 trials. Half of drugs fail in Phase 3 studies or do not receive FDA approval.
  • When Phase 3 trials test the drugs on thousands more patients, dangerous side effects could be discovered.
  • We don’t know what the long-term effects of inhibiting CGRP will be.
  • CGRP is distributed throughout the body and is involved in many process, including regulating blood flow and wound-healing.

My Thoughts on Safety

  • Thus far, studies have shown a low side effect risk for these drugs. This is encouraging, but studies have had limited numbers of participants. More people using the drugs—both in late-stage trials and, if approved, in widespread use—will be required before we can really know what the side effects will be.
  • The very novelty that makes these drugs exciting also makes them scary—CGRP hasn’t been inhibited before. What will the long-term effects of the drugs be? How will they impact other physiological processes? What will research find after the drugs have been in use five years? fifteen? thirty?
  • I probably wouldn’t be thinking much about the long-term safety if it weren’t for recent studies linking anticholinergic drugs to dementia and cognitive impairment. Anticholinergics have been used widely for at least 70 years, but the first of these studies (that I can find) was published just 11 years ago. How many people were negatively affected by these drugs before the link was found?

I’m still excited about the potential of the drugs, but my concerns weigh heavily. Maybe these worries will shake out by the time the drugs are available in a few years. Right now, I don’t see myself clamoring to try them as soon as they’re available… although if my migraine attacks are back to being severe by then, I’ll probably camping out to secure my place toward the front of the line.

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I Have Given Up

“Research is finding new treatments, but nothing is available to help you now,” my headache specialist said. “You’re the same age as my daughter. I would want her to have relief while she waits for better medicines.” This is how the doctor announced that he’d reached his limit of treatments to try for me. He then prescribed Opana, a long-acting opioid. As kind and compassionate as he was, the prescription combined with the conversation to reverberate through my mind: YOU WILL NEVER FEEL BETTER.

This was in June 2009. It kicked off The Worst Year of My Life. I spent that year in horrific pain and housebound in a city where Hart and I had no support system. When I did get out of the apartment, the weather was miserable, the city was overstimulating, and people were aggressive (especially compared to Seattle’s friendly superficial social interactions). All those factors contributed to a terrible year. But the worst part was that I had given up hope of ever finding an effective treatment.

The future I saw before me was an interminable hell: days of vicious pain with no possible relief, nausea so severe I could barely eat, going to bed in tears each night wondering how I could survive another day. Even reading, which has been my escape since I learned to decipher written words, was impossible. For months, suicide seemed like the only alternative to this future.

I began writing this story after three readers responded to Blindsided By Grief by telling me they have given up hope. My heart aches for them because I know what it’s like to feel desperate and helpless. I’m also worried that I inadvertently made them feel worse. What I should have written was “I will never, never, never again give up trying to feel better.” Because I have given up before. My hopelessness multiplied already terrible physical symptoms to the point that they became nearly unbearable.

I don’t see my determination to never again give up as a sign of some superhuman strength. When my options came down to die, live in misery, or believe in a better future, the latter felt like my only reasonable option. If I stop trying to get better, I stop wanting to live. I will do everything I can to avoid feeling that way ever again. I must believe in the possibility of a better future—and that it’s my job to find the most effective treatment for me—to keep the helplessness and hopelessness at bay.

I did not realize until today what a pivotal role my former headache specialist played in my loss of hope. I have never faulted him before. He was truly sorry he could not help. But he didn’t say *he* was out of ideas, he told me that nothing existed that could help me. He told me to hang on until science caught up with me. It’s as if he took lessons in how to destroy a patient’s spirit. And to think that I found relief three years later with cyproheptadine, one of the oldest migraine preventives available.

Telling someone else to have hope won’t automatically instill it in them. Instead, I’m sharing my story to show that it’s possible to find hope again even when it feels lost for good. For me, hope came back even stronger and more realistic than it was before. Sometimes hope doesn’t feel like enough, sometimes it feels like the despair will gobble me up. But most of the time, it’s a life preserver that I cling to so I won’t drown.

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Would you donate your brain to research?

I imagine that migraine has worn grooves into my brain, creating a map that will help researchers explore the wilderness of migraine. Although I know the changes are not so literal and visible, I’ve talked about donating my brain to migraine research for at least a decade. I want the agony I have endured to be used to further the understanding of migraine. I know my work does that to some extent; I want to do more. I want to impact the science. The American Registry for Migraine Research, which is getting up and running this year, will provide a place to do that. (Not only by donating brain tissue, but donating blood and saliva samples as well as data.)

I was interested in donating my body to science since well before chronic migraine disabled me. Then I started to read Stiff: The Curious Lives of Cadavers. It was so disturbing that I didn’t get beyond learning that cadavers are used for all sorts of science, including cosmetic surgery and crash testing cars. To me, donating my body to science is a way to advance medical knowledge. Having someone practice a nose job or tummy tuck on my dead body is less idealistic. I know those procedures are not always for cosmetic reasons, but the vast majority are.

I remain undecided about donating my entire body to research. Fortunately, this is not a decision I have to make. Not only because I don’t plan to die soon, but because the migraine registry will allow me to donate brain tissue to migraine research without committing the rest of my body to science.

Would you donate your brain to research?