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What kind of help during a migraine attack do you want?

help-during-a-migraine“I’m really worried about her and wonder what I can do to better support her before, (especially) during, and after an attack.” The boyfriend of a woman with migraine sent me this. Since different people want different kinds of help during a migraine attack, I recommended asking her directly. But it prompted me to create a list of the kinds of help that people with migraine actually want during an attack.

I need your help. Here are the questions I’d like to address. Please leave your responses in the comments (or respond to this message if you receive posts by email). Answer as many or as few as you’d like.

  • What can someone do to help you in the early stages of a migraine attack?
  • During a migraine attack, do you want someone with you or to be left alone? If someone’s with you, what do you want them to do? If you’re alone, do you want someone to check on you?
  • What would help you when you’re recovering from a migraine attack (postdrome)? Do you need to take it easy for a while or do you resume life as if the attack never happened?
  • Between migraine attacks, is there any way someone could help you make your next attack easier?

In my dual migraine household, we have a different routine depending on who is having the attack. When Hart has one, I put water, ear plugs, an eye pillow, and the remote control for the light/fan beside the bed while he takes his meds. I smooth the bedding, arrange his pillows, and turn on the air filter for white noise. I make sure he has his phone and that my ringer is on so he can reach me if I’m out of earshot. Then I leave him alone. After the worst of the attack, I make sure he’s fed and we usually do something low-key, like watch TV or a baseball game.

My migraine attacks are so varied that we take a case-by-case approach. Sometimes I only need help getting my meds. Sometimes I need help to bed, with gathering my migraine supplies, or finishing up something I was in the middle of doing (which usually means having Hart put food away). Depending on how severe the attack is and if I can sit up, I either spend it alone or watching TV. If I can think clearly (which is rare), we play a game. Same goes for postdrome.

I’m looking forward to hearing your thoughts!

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Talking About Migraine at Work: Your Thoughts?

migraine-at-workWhat’s your take on this statement?: “The key to managing migraines and work is communication. It’s important to let coworkers and managers know about your condition and educate them about it.”

That comes from Migraine at Work on UCLA Health’s migraine information page. The article’s recommendations for “initiating effective communication” include (paraphrased):

  • Educate your coworkers—because they don’t know what migraine is, they don’t know how disabling an attack can be. The article recommends getting pamphlets from your doctor to share with coworkers.
  • Talk to your manager—to reduce triggers by modifying your work environment and gain access to a dark, quiet room during an attack.
  • Be honest—say that migraine attacks can be disabling and you hate to miss work. Tell coworkers that you miss out on fun activities, too, not just work.

I haven’t worked in an office in 13 years, but these recommendations strike me as idealistic and tone-deaf. Other than the suggestion to be honest that you don’t like to miss work because of a migraine attack, this advice raised more questions for me that it resolved: Is it really a good idea to tell your coworkers and manager that migraine attacks can be massively debilitating? Is a person with migraine responsible for educating coworkers? Will pamphlets be fodder for gossip? Do coworkers even listen to attempts at awareness-raising? Are managers receptive to requests for accommodations? Do coworkers care if your migraine attacks prevent you from enjoying leisure activities?

I’d love to know what you think. Please leave a comment below (or if you get posts by email, reply to the email with your response).

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Migraine Stories: Chronic Migraine, Pain Without Suffering

In this beautiful essay, John Ptacek describes how he’s learned to live with the pain of chronic migraine without suffering. Want to share YOUR story? Submit it here.

Walking the Line Between Pain and Suffering

We We learn to avoid pain, but who teaches us to deal with it?learn to avoid pain at an early age. We are taught that hot irons, sharp objects and electrical outlets portend danger. Parents counsel children about such dangers, but sometimes the most effective teacher is pain itself. Pointed lectures are no match for a bright purple bruise. Incident by painful incident, we learn to sidestep misfortune through increasingly observant behavior.

We learn to avoid pain, but who teaches us to live with it? I, along with a billion and a half other people in the world dealing with chronic pain, could have benefited from a lesson or two on this subject.

We can all avoid trips to the emergency room by treading carefully on icy sidewalks and tucking in our fingertips when speed chopping carrots, but preventive strategies are of little use to people experiencing ongoing physical pain. People dealing with fibromyalgiaLyme diseasemigraine and a long list of other chronic conditions understand that their pain cannot be outwitted. They are chained to it, and probably forever.

The urge to resist pain is instinctive. What could be more natural than to hate hurt? One of my earliest memories of pain was the electric jolt of a bumblebee sting. I wailed hysterically as my mother patted a wet baking soda mixture around my throbbing thumb. I wondered how something so horrible could happen to me. All I did was touch a flower! This isn’t fair, I decided, unknowingly adding a layer of emotional distress to the mix. Soon, the pain went away, and along with it my existential uncertainty.

This rapid recovery cycle would repeat itself in coming years as I endured broken bones, concussions, pinched nerves, kidney stones, shingles and other assorted agonies. A “why me?” inner narrative often accompanied these events, but the pain passed too quickly for me to perceive that such mental resistance came with a price. That is, until the headaches showed up at my door.

Sometime in my fourth decade I started getting frequent headaches. At first I shrugged them off to my highly stressful job. Rather than seek medical attention, I started meditating, exercising and eating healthier. None of this put the slightest dent in my pain. In subsequent years, I sought the help of every traditional and alternative health care provider who might have even a remote chance of helping me. They gave it their best shot, but nothing helped. My headaches continued unabated. The lack of progress shuttled me off to a cold dark place familiar to chronic pain sufferers, a solitary space that is all but impossible to describe to outsiders for whom pain is a just passing affair.

Frustration at having to drag my evil friend around with me nearly every day compounded my painful existence. My mind had gotten in on the act, and now I had two fires to put out. Here’s the kind of nonstop chatter I had to endure: How much more of this can I take? If it gets any worse, how will I be able to work? Am I always going to be in pain? What’s the point in living? Why can’t these damn doctors do their jobs?

Anyone experiencing chronic pain knows what it’s like to be tuned in to this unnerving frequency. My unanswerable questions pitched me further and further into an unknowable future.

Even if someone would have counseled me early in life that embracing pain, rather than resisting it, was a winning strategy, I probably wouldn’t have known what to do with it. Wisdom can be baffling at first, and brilliant only later. And anyway wisdom can’t be taught. Moments of great anguish served as my bright purple bruises, and one day, I can’t say exactly when, I got wise to the voices in my head that were the cause my suffering. I achieved a degree of separation from them. I could still hear them, but it sounded like they were coming from the next room. Without really looking for it, I discovered that there was a dividing line between pain and suffering, and depending on how I walked that line, my situation could be either bad or much worse. Who knew bad could sound so good?

This dividing line can look awfully blurry when pain pins me to the mat. Because I am not at my rational best during such moments, I keep a note in my sock drawer reminding me not to push myself and to refrain from making important decisions. I also have a secret password to pull me up when I feel myself slipping into the pit of suffering: Allow. I allow the pain, and immediately suffering leaves the room. Without resistance, suffering cannot exist. That leaves just two of us in the room, me and my constant companion, locked in an uncomfortable but tolerable embrace.

Let me be clear. Pain is a rude and abusive house guest. No secret password will put it out on the street. I will be forever forced to cover its rent. But knowing this relieves me of my duty to resist it, and in that simple act of surrender, I know that I am opening myself up to all the goodness that life will allow.

chronic-migraine-john_ptacekRead more of John’s writing on his blog, On Second Thought, where he explores “the unquestioned assumptions that limit our capacity for happiness.” His writing is thoughtful and insightful.

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Ketogenic Diet for Migraine: Is it Working?

ketogenic-diet-for-migraineBut is the diet helping??? I inadvertently edited out the answer to the question many of you were wondering when I wrote about the ketogenic diet for migraine last week. The answer is a resounding maybe. I have not achieved my primary goals—eating or drinking anything but water still triggers a migraine attack and I still eat only once a day. But small improvements are increasing my quality of life.

  • More responsive to migraine abortive meds: I still take Amerge and Midrin after every meal, but they are more effective than before starting the diet. I can usually function through the slowdown of early migraine symptoms that follow eating and sometimes barely feel the symptoms at all. One dose of Amerge and Midrin also manage some trigger foods that used to knock me out, but only if I eat them infrequently. I will soon experiment with taking Amerge sans Midrin after I eat.
  • Decreased pain levels: My migraine attack pain is a level 3 most of the time. It still reaches 4 occasionally, but not as frequently as before. I’ve had one 5 since starting the diet. Five years ago, this would have felt miraculous, but pain hasn’t been my worst migraine symptom since 2013. Before the diet, level 4 pain was the norm and 5 was a little more frequent, but not substantially.
  • Decreased fatigue: I am more functional during some migraine attacks. The improvement is minor. But I’ll take it given that the fatigue used to knock me flat. I also have less overall fatigue, which I’m guessing is because Amerge and Midrin are more effective.
  • Improved cognitive function. Again, this improvement is minor but noticeable. A migraine attack no longer means I can’t write or read somewhat complex information. I can only write rough drafts and can’t translate journal articles. I can, however, get the gist of journal articles and have no problem with information for the general public, like press releases.

Are you wondering why I’m staying on a diet that is causing me to lose too much weight and become malnourished, but is only kinda working? It’s because I’m not fully settled into the diet yet. Here’s why I’m sticking with it a little longer.

Three months for a full metabolic shift

The metabolism fully shifts from burning carbs to burning fat after three months of ketosis, according to my dietitian. Cellular and mitochondrial changes that happen at three months could impact my migraine attacks (for better or worse). April 15 is my three-month mark. I started the diet January 3, but wasn’t consistently in ketosis until the 15th.

Diet side effects

I’ve had a variety of issues implementing the diet and won’t be confident I’ve given it a good try until I’ve resolved them. The major nausea six hours I’ve gotten after eating every day for more than four weeks has been a huge burden. After working with two dietitians and my naturopath and trying numerous remedies, I think the issue is dehydration. Drinking 96 ounces of water a day is not enough; it looks like I need 128 ounces to stay hydrated on this diet.

Then there’s malnutrition. My blood work keeps coming back with levels that are way off in different areas. In January, my liver enzymes were alarmingly high. They looked good in February. Now they are high again, but not as high as in January. That’s just one example, but any of these extreme fluctuations within my body could be triggering migraine attacks. Many of these things can be supplemented, but that’s another problem, which I’ll explain in the supplements section below.

Drug and supplement side effects

Zofran: The nausea has me taking 8 mg to 16 mg of Zofran a day. Normally I take 4 mg or 8 mg sporadically. It’s unlikely, but that increase could be increasing my migraine attack frequency.

Adderall: When I tried increasing from 10 mg of Adderall to 20 mg in February, I became even more reactive to food. My migraine attacks lessened in severity and became more responsive to meds when I went back down to 10 mg. Last Monday, I stopped taking Adderall altogether. For the first few days, I thought my food reactivity decreased, but then it seemed to increase. After a few rough days, I resumed taking 10 mg yesterday. I’m still not sure what the ultimate verdict on Adderall will be, but I need to make it before I determine if I’ll stay on the diet or not.

Supplements: Starting supplements to counteract malnutrition is likely an ever bigger factor than either Zofran or Adderall. Most supplements I try, even in very small doses, trigger migraine attacks that are unresponsive to medication. Another problem is that the preferred supplement to manage elevated homocysteine (my current blood work red flag) is 5-MTHF. That’s the supplement that triggered pretty severe depression the last time I took it to manage elevated homocysteine caused by malnutrition.

Managing wildfires

Managing a ketogenic diet for migraine feels like trying to contain a series of wildfires. As soon as I think one fire is under control, another part of the forest goes up in flames. Or the wind shifts and the fire I thought was contained flares up again. In a few weeks I’ll have to decide whether to keep fighting the fire or just walk away. So far, the improvements aren’t substantial enough to risk further malnutrition. But I keep hoping that after some of the fires are under control, I will feel better enough that the improvements are worth the risk.

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Ketogenic Diet for Migraine: Too Much Weight Loss

ketogenic diet for migraine weight lossElementary school is the last time I weighed this little. I’m not bragging, I’m worried. I was at my ideal weight when I began the ketogenic diet for migraine in January. My dietitian wanted me to lose a couple pounds at first to kickstart ketosis. 17 pounds disappeared in two months. I knew I was too thin, but the weight loss seemed temporary and manageable. Until I lost three more pounds in the last couple weeks and crossed from too thin to frighteningly so.

You may be thinking I’m lucky or that this is a problem you wish you had. I expect you’d reconsider if you saw me without a shirt on. My sternum is pronounced and my ribs are clearly countable. I look sick. I do not feel lucky. I feel sick.

Talking about unintentional weight loss is a strange thing. I used to think it was the same as unintended weight gain, just in the opposite direction. Then I gained weight on cyproheptadine and discovered how different the two are. Weight gain is almost always reviled in this culture; weight loss is typically celebrated. I see a skeleton reflected back at me in the mirror, but people keep telling me how good I look.

I am on the ketogenic diet for migraine—that is, I’m on the diet to become healthier. Yet I keep losing weight that I’m trying to keep and am likely malnourished. Neither of these things is entirely unexpected. A less extreme version of the diet is popular for weight loss and it’s well known that ketogenic diets are not nutritionally complete. The surprise is in how much difficulty I’m having managing the diet. I didn’t expect so many different, complex variables. I certainly didn’t expect to drop to a pre-puberty weight.

P.S. I’m working with my dietitian and naturopath to increase my weight and correct nutritional deficiencies. The problems I’m having with the diet are solvable. Right now I’m feeling overwhelmed by how quickly the issues escalated and expect I will be on edge until the numbers on the scale increase.