Despite the severe pain of this migraine lasting far longer than it has in recent months, I’ve spent the last couple days in a curious sort of gratitude. I wanted to be somewhere other than my body, somewhere I couldn’t feel the pain. At the same time, I rejoiced that this is no longer the norm.

It is always difficult to answer when people I haven’t talked to in awhile ask how I feel. I am better for sure, but am far from well. With a constant headache and at least five days a week where the pain hits at least a level 6, I’m still on the “very sick” end on the continuum of people with migraine. And am thankful to have improved this much.

Advocating for folks with migraine doesn’t require a fancy degree, having a blog, or devoting tons of time to the cause. All it takes is for people with migraine — and those who love us — to speak up about what migraine really is whenever the opportunity arises. This means not dismissing a migraine as “no big deal” and not shrugging off when someone says migraine is “just a headache,” but explaining that this is a neurological disorder that affects the entire body.

Explaining that the autonomic nervous system — which is responsible for all the processes the body does without obvious input from the brain, like breathing and digestion — goes haywire and that all five senses are on super-high alert are illustrative for non-migraineurs. The list of little-known migraine symptoms and weird migraine symptoms help, too.

How do you talk about migraine to raise awareness of the disease?

The last week of April I had a cold, a mouth full of cold sores, and storm-triggered migraines. A down week. Last week I felt great even though I discovered I had an indomethacin-induced ulcer. The migraines were mild and I had a ton of energy. I went to the dentist, the doctor, yoga and physical therapy, had coffee with an old friend, got a magnesium infusion, cleaned the house, hosted a Cinco de Mayo party, was swamped with TheraSpecs work, and more I won’t bore you with. I was exhausted by the end of each day, but woke up the next morning ready to go. Clearly an up week taking loops at high speeds. This week I’m struggling to keep my head up through severe migraines. And the roller coaster plunges back down.

Maybe I’m now paying for overexerting last week. Or maybe this is a new week with unrelated migraine triggers. The amount of time I spend second-guessing my health-related decisions is dramatically less than it was, say, a year ago. Still it feels like far too much time and energy. Balance continues to elude me. Not just in deciding how much to do and when to rest, but also in how I think about migraine and my role (if any) in exacerbating the illness.

In theory I know migraine is a disease and I am not at fault for having it. In practice, though, when “stress” is a commonly cited trigger for an illness, the patient is inherently blamed for worsening their own health. So I always wonder what I did wrong and what I can change next time.

I’m stuck on a ride I can’t get off of even though I didn’t want to be on it in the first place. I never did like roller coasters, but am willing to make the most of the ride since I’m already here. If only I could figure when to throw my arms in the air and scream with joy and when to hunker down and hold on tight.

The clocks at my yoga studio are curious. Sometimes they are completely silent. Sometimes they demand I pay attention to their continual work. In reality, of course, the clocks tick at a perfectly consistent volume. Whether my brain is in migraine high alert determines if I hear them or not. Phonophobia is not subtle.

After a severe migraine yesterday, I spent today not knowing if I was being haunted by a hangover or if another migraine was coming on. Hearing TICK! TOCK! as I tried to settle into a yoga class this evening put an end to my questioning. Another migraine it is.

In light of recent news reports about the growing use of surgical intervention in migraine, the American Headache Society^® is urging patients, healthcare professionals and migraine treatment specialists themselves, to exercise caution in recommending or seeking such therapy.

In our view, surgery for migraine is a last-resort option and is probably not appropriate for most sufferers. To date, there are no convincing or definitive data that show its long-term value. Besides replacing the use of more appropriate treatments, surgical intervention also may produce side effects that are not reversible and carry the risks associated with any surgery. It also can be extremely expensive and may not be covered by insurance. Most importantly, it may not work for you at all.

Since the occipital nerve stimulator I had implanted in 2003 proved ineffective, I swore I wouldn’t try to find a surgical solution again. (The nerve stimulator was my third migraine-related surgery, including TMJ surgery in 1997, sinus surgery in 2000.) The nerves of a migraineur are so sensitive that anything that mucks with them seems a bad idea.

That resolve lasted until earlier this spring when I found myself wishing for a hole in my heart (which I do not have). In a comment on that post, Drew shared his story of being diagnosed with a PFO and considering having it closed as a treatment for his NDPH (new daily persistent headache). Drew wrote,

“The research on this subject has led me and my doctors to one simple reasoning of thought. The proceedure is just not worth it. There is no garantee that closing the pfo will stop the headaches in the short term or long term over your life time. There is also the very possible chance that you could suffer even more complacations from the surgey, by no means is this surgey a fix it. Remenmber it still intails your heart and messing with the bodies system.”

The wisdom of Drew’s comment resonated when, days later, I saw the stories about plastic surgery for migraine. I must admit that initially my hopes were raised as I read about the surgery — I felt pretty bad and was wooed by the thought of relief. Then I remembered Drew’s comment and my own resolve and saw the AHS’s statement. No surgery for migraine has good evidence for efficacy and any surgery has potential complications and impacts the body in many ways.

I have re-resolved to avoid any surgical “fix” until it has strong support from scientific studies. The potential problems just aren’t worth the risks. What do you think of surgery for migraine? Have you had any (and was it effective)?

Whether you write a lot of poetry or have never attempted it before, please enter. You could surprise yourself — one year’s first place winner had never written poetry before. This year’s judges will be migraine patient advocate extraordinare Teri Robert and the Migraine Research Foundation.

Learn more about the contest and find the entry form and see last year’s entries at Help for Headaches and Migraines.

I stayed home because I was feeling “off” and a storm was rolling into town, which is a pretty reliable migraine trigger for me. Usually I’d go anyway, especially if I’d been doing OK most of the day, like I was Friday, but the tickets were expensive and I loathed the thought of fighting through the crowd to leave and then riding in the car for 30 minutes with a migraine.

I’d done the math and the dithering all afternoon and made what I thought was the right decision. When the migraine didn’t come Friday night, I felt like I’d cheated myself out of a great time because of fear. I wanted to embrace my choice with confidence, but the doubt remained: Maybe I was taking care of myself and being appropriately cautious, maybe I missed out by giving into fear.

I’ve been running my mind in circles, trying to figure out how I could have made a better decision Friday (and by “better decision” I mean one that would have gotten me to the music festival). Then Tuesday came along and I felt pretty good, so Hart and I went to a baseball game. At the game I realized that I had used all the available information to make the best decision I could on Friday. There’s no way to make perfect decisions with an unpredictable illness.

Sometimes I’ll got to the show and get a migraine, sometimes I’ll feel just fine. Sometimes I’ll stay home and feel OK, sometimes I’ll have a migraine. Sometimes I’ll go to the game and catch my first foul ball, like I did on Tuesday.

“Like” The Daily Headache on Facebook to see a picture of Hart and me with my foul ball.

TheraSpecs, the company Hart and I have started, is now open for business selling precision-tinted therapeutic glasses! Clinical research shows they can reduce the frequency of migraine attacks, relieve sensitivity to light during a migraine, protect you from light-triggered migraines (especially from fluorescent lights and CFLs), and reduce headaches and eyestrain. They are available in both an indoor tint and a darker polarized tint for outdoor use.

Learn more or order your own pair at TheraSpecs.com.

Migraine didn’t keep me away this time, at least not directly. Instead, I developed joint pain as a result of my sedentary life. After a year of taking only gentle yoga classes, I moved to all-levels classes. I felt like I’d developed some stamina and was ready to start building some muscle. I expected a lot of muscle aches — the good, I-can-tell-I’ve-been-working-out kind of soreness. It never came even though I was going all-out in class. It turns out that my natural flexibility (which hasn’t waned) was working against me. My muscles aren’t strong enough to support me when I’m splayed out in a pose, so my joints took the brunt of my workouts. I kept going to classes for awhile, thinking I’d work through it. Nope. So I tried only gentle classes, but the pain persisted. I had no choice but to stop and heal.

I bought an ancient treadmill so I could exercise without leaving the house. I’m one of those weird people who doesn’t mind exercising on a treadmill, but “exercise” and “yoga” are not synonymous experiences for me. Walking on a treadmill and listening to podcasts is fine; yoga classes are a time of (almost) pure enjoyment for me. I’d rather follow my bliss. Engaging in a third space, which is a meaningful activity outside of work or home, can reduce stress and social isolation. In A Third Space for Migraine Patients, headache specialist William Young writes:

I think that finding a good third space can be very hard for a person with bad migraine, but that finding something is truly important. I think it works best when it requires interacting with people outside of work or home and consumes someone in such a way that it becomes very hard to focus on pain.  I don’t think it needs that much time, and if an hour a week is all you can find, that is fine, if you have found a true sanctuary. Find something, try it on and if it doesn’t fit, keep trying until you find something meaningful. Fight for one tiny, special activity that takes you away from the places in your life that the pain resides. Keeping a seed of contented normalcy somewhere in one’s world is critical, and provides hope in the darkest times.

I will spare you the poetic waxing. Suffice it to say that classes provide me with much pleasure, which I have missed. While I don’t talk to a lot of people at the studio (how outgoing I am depends on how migrainey I am), I appreciate seeing different people than my friends and family. The studio I go to has a strong community feeling and I like the support implicit in that. People notice when I’m gone and ask how I am when I return.

I have described yoga as a lifeline before. Until this forced hiatus, I didn’t know how true that was. I’ve been back for a few gentle classes and have felt great emotionally and migraine-wise afterward. My joints were OK with one class, but they are complaining a bit after classes on consecutive days. Next week I will get suggestions from a physical therapist/pilates instructor/massage therapist for improving muscle tone and protecting my joints.

The work required to regain muscle strength is daunting, especially knowing that migraine will continue to interrupt my attempts to exercise. I fear that I will never come out ahead. At which point I have to remind myself to be mindful of the present moment, not lost in the past or anticipating the future. One step — whether forward or back — at a time.

Upon arrival from Italy, the frames were held up in customs for a few days. After they were finally delivered at noon on Friday, Hart took them straight to the optical lab that makes the precision-tinted lenses. We hope they will be ready sometime this week. The website and shop will be up and running as soon as they are!

So exciting! So scary!

Don’t do imaging for uncomplicated headache.
Imaging headache patients absent specific risk factors for structural disease is not likely to change management or improve outcome. Those patients with a significant likelihood of structural disease requiring immediate attention are detected by clinical screens that have been validated in many settings. Many studies and clinical practice guidelines concur. Also, incidental findings lead to additional medical procedures and expense that do not improve patient well-being.

This recommendation makes logical sense and my rational mind agrees with it. However, I don’t know how well it will go over with patients.

There’s no scan or blood work that will prove you have migraine, which can be terribly unsettling. When someone has severe pain in their head, the immediate fear is that they have a brain tumor or aneurysm — you know, something scary and life-threatening. Getting a diagnosis of migraine without having any tests leaves people wondering if something was missed and if their life could be in danger. Negative MRIs and CT scans give patients peace of mind that migraine is the correct diagnosis. (I have no empirical evidence for this analysis, just eight years of interacting with terrified people who have headaches.)

Choosing Wisely’s guidelines do not tell doctors to refrain from testing in all cases, but provide “specific, evidence-based recommendations physicians and patients should discuss to help make wise decisions about the most appropriate care based on their individual situation.” The key here is that physicians and patients discuss the options.

I wonder if any conversation would have calmed my fears sufficiently for me to forgo my first MRI (or CT scan or MRA or spinal tap). I would like to think so, but before I became steeped in the migraine and headache world, practically all my encounters with headache were in movies, TV shows or books, where head pain almost always means brain tumor. Though the gigantic majority of all headache disorders are not life-threatening, society’s general take on headaches falls into two categories: no big deal and big, huge scary deal. For someone to see a doctor about headaches, they usually believe they fall into the latter category.

Tell me about your experience. Have you had imaging done for your headaches or migraines? Could you have accepted your diagnosis without the imaging?

Wondering what in the world a PFO is and how it relates to migraine? Here’s what I wrote about it in 2008:

The hole, called a patent foramen ovale (or, more commonly, PFO), is an opening between the upper chambers of one’s heart. Some migraineurs who had PFOs closed for another reason reported that their migraine attacks stopped or were much less frequent after the surgery.

The hole is present in fetuses to allow blood to pass from one side to the other. In most people, the gap closes at or after birth. For an estimated 25% of the US population, it doesn’t close completely and the PFO forms. This remaining tunnel functions as a valve. Normally the valve is shut, but sometimes remains open, sending blood that’s supposed to go to the lungs off to the brain and other parts of the body.

Are Migraines Linked to a Heart Defect? is a helpful Q & A in the New York Times from 2010. I can’t find any recent stories on it. What I understand from talking with my headache specialist is that PFO closure has been helpful for migraine with or without aura (most early reports focus only on migraine with aura) and — though I have a hard time believing I heard this correctly — 80% of migraineurs who have PFOs closed report some degree of migraine relief following the surgery.

My fingers are crossed until I get the test results tomorrow.

These glasses have a precision tint called FL-41 that research shows can help with painful sensitivity to light (photophobia), fluorescent light/CFL sensitivity, eye strain, and even reduce the number of migraine attacks wearers get. One FL-41 study showed participants went from an average of 6.2 to 1.6 migraine attacks per month — that’s 74% fewer attacks.

The tint was suggested by my headache specialist who was concerned that I was over-sensitizing my eyes by wearing sunglasses indoors. I ordered standard eyeglasses with the tint. While helpful for computer time they let in way too much light, which means the glasses didn’t effectively manage general photophobia or protect me from fluorescent lighting, which is a big trigger for me.

After hearing me complain about them (and seeing me always wearing them with a baseball cap) Hart set out to see if he could do better. He wanted to to create FL-41 glasses in frames that would better protect my eyes. He worked with an optical lab and talked to countless different companies before finding just the right lightweight, flexible, wraparound frames — in short, the perfect glasses for a migraineur. The flexibility of the frames and their light weight mean that they don’t put pressure on a head that’s already sensitive from migraine and they also fit a wide variety of faces with no pinching or squeezing.

Wearing these glasses, I no longer fear fluorescent lights at grocery stores, friends’ houses, or doctors’ offices. (I can even go to Ikea without a meltdown!) I also wear them around the house whenever I have a migraine and they really cut down on the pain. At the risk of sounding cheesy, what these glasses really give me is freedom from fear and a sense of control over migraine triggers and symptoms.

The glasses were great for me, but we wanted to be sure they would work for other people, too. We sent some pairs out for feedback and waited nervously. The response was overwhelmingly positive, with testers reporting many of the same benefits that I did. Besides photophobia relief, testers found the glasses especially useful for blocking fluorescent lights and for screen time in front of the computer or TV. Some of the feedback was so touching that it brought me to tears. Once we knew the glasses could help a lot of other people, we also knew we needed to make them available.

Hart is hard at work putting the final pieces of the business into place and getting the glasses made. We hope to have them available for sale in a few weeks. If you’re interested in learning more, enter your email address below so we can contact you when the new company’s website is up. (We promise not to sell or share your email address.)

I’ll post again to let you all know when they are available, too. We both hope these glasses can help you as much helped me!

For about 10 years years, this was the pattern whenever I’d make plans: My excitement would build as the dinner/concert/play/party approached. I’d spend the day resting, hoping to build energy reserves, and give myself a couple hours to shower and dress. The migraine pain/exhaustion/dizziness/nausea would persist despite my best efforts to supplicate it. I’d push myself and become distressed, and worry and panic would fuel the migraine. Angry, I’d crawl into bed (or sometimes collapse on the floor) and ask Hart to call our friends to cancel.

After years of disappointments — and lost friendships — from last-minute cancellations, I stopped making plans. The pattern was just too painful to repeat. I withdrew further into the isolation of chronic illness, dragging my husband in with me.

Moving back to Phoenix, where my friendships are long-established, I began making plans again, knowing my friends would understand if I had to cancel and that, if we had couple plans, they’d welcome Hart even if I couldn’t come. So now I make plans with an asterisk. I’ll come to your party, meet you for tea, go to a mini high school reunion, as long as I’m up for it. I still don’t like rescheduling and am reluctant to buy tickets for events that I’m not sure I can make, but I am no longer ashamed or embarrassed when I have to stay home.

Shame or guilt were only part of the problem. If I couldn’t go out, I felt like I was letting migraine win. Like my default mode was healthy and deviance was an anomaly. Truth is, my default mode is migraine (“chronic” might have been the first clue). I’d been too stubborn to see and too ashamed to admit that I was too sick to live a “normal” life. Coping with chronic illness isn’t a matter of winning or losing, but of being honest with myself. And that may be the biggest challenge of all.

After 48 hours of level 3 pain after my magnesium infusion, the pain increased with the onset of three-day storm on Saturday. I did not panic because I knew that a storm was likely to trigger a migraine even if I was overall improved. Sunday and Monday were a little better, but still mediocre. Another migraine hit Tuesday, right after the storm cleared. I soothed myself by remembering that many headache specialists say that weather changes are triggers for most migraineurs. (I mentioned this to Hart to reassure him — he was telling himself the same thing!) Today, though, I can no longer blame the weather. So the constant questions resume — Am I in postdrome? Will the magnesium infusion only last one week?

Over the weekend, I hadn’t begun to consciously worry about the magnesium infusion wearing off too quickly or not being as effective in the future; the concern was apparently below my consciousness. While napping Sunday in an effort to recharge myself to visit friends in the afternoon, I had a new kind of anxiety dream. It had something to do with getting to the end of the semester without attending or dropping a particular class, which is how anxiety usually manifests while I sleep. This time, I missed classes because the magnesium infusions were no longer able to bring the pain down to a level 3.

Usually I awake from anxiety dreams and am able to calm myself knowing I’m not currently a student. I know I’m probably worried about something, but am reassured that whatever got my heart racing in the dream was not real. This time the source of anxiety in the dream was not only a possibility, but culled directly from one of my greatest fears. I have elaborate, bizarre dreams that provide an amusing respite from my daily life. I’m unhappy that reality intruded, though so far I’ve only had the dream once.

I believe I’m finally recovering from the long weekend of migraines and am hoping, hoping, hoping that tomorrow I’ll again see the benefits of last week’s magnesium infusion. I can’t put into words how much I want this to work. I’ve gotten a glimpse of what life might be like with less pain and more energy and I want more of that. Please, migraine gods, please let me have some more.

I know I am better because I can usually shower without having to rest afterward. When I do have to take time to recuperate, like Wednesday night, it seems that 10 minutes of rest is sufficient for me to then put on lotion (a huge chore when I feel bad) and get dressed. It has been more than a month since I’ve had to drag myself straight to bed post-shower. This is a major quality-of-life improvement for me, though not one that really leads to increased productivity.

The numbers from my headache diary show major improvement. The headache specialist looked the diary over and also remarked on the improvement. I have only hit a level 8 once since increasing the magnesium and it was for 10 very long hours. In an average week, I reach level 7 three times and it stays that high for about three hours. Compared to level 8 at least once a week and level 7 six hours a day, five days a week, the improvement does qualify as “major.” Unfortunately, when the baseline is “feeling-like-hell-and-can-barely-get-off-the-couch,” even major advances don’t take me very far.

Though the pain levels have improved, I’ve been struggling with significant nausea, fatigue and lethargy. The nausea may be the magnesium or it may be coincidence. The fatigue and lethargy may be migraine or the effects of Amerge, a triptan that I’ve started taking a lot more now that I’ve identified an occasional visual aura. Sorting out symptoms of the disease from side effects of the medications used to treat the illness is so complicated!

I took all this information to my headache specialist and his first reaction was, “Let’s give you an infusion of 1,000 mg of magnesium and see if that’s really what’s helping you.” I was thrilled and a little afraid: What if the magnesium, which I’ve regarded as magical, isn’t actually helping and my improvement is an unexplained fluke? On the other hand, maybe magnesium really is what my body needs and going in for weekly infusions will be the trick to getting my life back. With every new treatment, I try to keep myself from getting overly excited about the possibilities, though the secret hope is always that this will be “the one.”

Though getting an appointment at my headache clinic involves waiting lists, phone tag, and sometimes months of waiting, treatments move quickly. I was in the ambulatory infusion clinic an hour later and Marian the nurse was wrapping her lucky tourniquet around my arm. She claimed to sacrifice a chicken every morning to make the luck hold, but perhaps the ritual went awry yesterday. The first attempt at putting in the IV didn’t work and, following descriptions of my vein rolling under the needle (ick!), she had to try a second time. Once it was in, all I had to do was lie back in the cushy recliner, pull up the heated blankets (I seriously wonder how much a blanket warmer would cost), and play Words With Friends for an hour.

At the start of the infusion, the pain was a level 5 and I was tired and nauseated. We’d left the house at 8:20 a.m. and I had awoken with a migraine. I had managed to eat a few crackers so I could take my morning meds, plus I’d taken an Amerge and a Zofran, both of which make me sleepy. At the end of the infusion, the pain was down to level 4, but I was even more tired and had added grumpy and hungry to the list of complaints. I wasn’t sure if the magnesium infusion had done anything and was too scared of the potential ramifications to think much about it.

My sweet husband drove me home so I could eat and nap. As I fell asleep, I imagined the magnesium coursing through my veins, spreading out into my cells and improving their function. The cells, wearing party hats and throwing confetti, were drunk on mineral fortification. I woke from the nap with my pain at a level 3, where it stayed until 9 p.m., at which point it dropped to a 2(!). Today, I’m back to a 3, even through another aura (and Amerge and nap).

Could magnesium be the white knight who sweeps me off my feet and makes my dreams come true? Are my expectations too high this early in the relationship? If I let myself fall head over heels, will I pay the price in heartbreak?

OK, Kerrie, take some deep, soothing breaths and let go of the “what ifs.” I’m going to enjoy this respite for what it is, however long it will last. On the agenda: Prepping for a barbecue and making ice cream with friends tomorrow, drafting a blog post on the business Hart and I are starting, exercising, showering, enjoying the delightful smell of orange blossoms, and whatever fun activities strike my fancy.

You must include your full name (not just initials), email address, mailing address and ZIP code for Congress to accept your signature to be valid. Only your first name, last initial, city and state will be posted publicly and your information will not be shared or sold.

Please, please take the time to sign this and share it with friends and family and on Facebook. It is long past time that these debilitating disorders be taken seriously.

I am claiming The Daily Headache as MINE. I’m done being a headache blogger solely focused on her audience. It is time for me to embrace the title of writer. A writer who happens to have chronic migraine, but who writes about whatever is on her mind. It may be that everything I have to say is headache-centric. Maybe not. We’ll have to see.

Readers, though my initial plan was to blog for you, I have received more than I have given. I still care about you, but have learned that I need to write for myself, not for you. I hope you stick around and enjoy The Daily Headache’s new incarnation.

I have no control over these crazy migraines, but I do have control over my career. Goodbye, headache blogger — Hello, WRITER.

Thanks to Sue for the perfect title to this post.

I blamed myself because I didn’t include details about magnesium and its potential dangers in the post. I resolved to not post (much) until I had written a thoroughly researched piece on magnesium. Hence the dearth of posts for the last couple weeks. As much as I want to, I simply don’t have the energy to research and write the post. Because I have chronic migraine, I spend a lot of time feeling too brain dead to write. When I feel good, sitting at a computer is the last place I want to be. I love writing and research and, yet, I spend so much time on my butt that I want to be cooking or cleaning or talking with friends when I feel OK, not isolated at the computer.

Since I began blogging again in November, my posts have been more my personal experience and less about what’s in the news or researched headache or migraine information. Being on the computer is no longer a trigger — I have special glasses that help with that — but what I’m interested in writing about is different than it was seven years ago. People tell me that my own stories are actually the most useful to them, but I struggle with feeling like all I care about is myself. Now that one of my personal posts has lead to people taking medication without further research, I’m conflicted.

So now I’m wondering: How do I balance sharing personal experience without being self-centered? Should I restrict the topics that I write about if I’m not up to doing research about them? What should this blog be? Do I write about what I’m thinking about or what I think readers want to read? What do you think?

Those of you who don’t want to go to the doctor may deduce that you can pop a couple Advil and avoid the headache. Please don’t! The headache or migraine may be triggered by benign causes like a tightening of the head and neck muscles or a response to increased blood pressure and heart rate during orgasm. However, it could also be the sign of a brain hemorrhage,  stroke, heart disease, glaucoma, or other disorder. Instead of attempting to treat it yourself, please see a doctor to make sure there’s not a serious background cause.

Several trustworthy online sources say that taking a triptan an hour before sex is an effective treatment for orgasm-induced migraines. I asked a headache specialist about this and was told that that this could cause a stroke. The specialist said that because both triptans and orgasms constrict blood vessels, the blood vessels could constrict too much during an orgazm. I’m not sure which source is correct here, but I stay on the side of caution and only take a triptan after an orgasm has triggered a migraine.

More information:

• Orgasm, Headache and Migraine: Does the “Big O” Affect Headaches and Migraine?
• Mayo Clinic: Sex Headaches

Saturday brought the worst migraine I’ve had in awhile. It was a level 8 when it woke me up at 4:30 am and still an 8 when I awoke at 10. It remained at that intensity until 3 pm, then slowly tapered down to a 5 by 10 pm. Sunday, I was tired, dizzy, woozy and headachey. I wasn’t sure if I was experiencing the prodrome of another migraine or the postdrome of the previous day. I was pleased to discover that it was the latter, as we had people coming over in the afternoon for a barbecue. I felt decent and social from 3 pm to midnight, at one point even wondering if my pain was at a level 1! Then another migraine in the night and now, at 3 pm the next day, I am groggy, exhausted, nauseated, anti-social, and semi-brain dead and my head hurts.

I want to do some work — either respond to comments, input health expenses into a spreadsheet for taxes, or make chicken broth — but sitting on the couch, staring into space seems like my greatest capacity at the moment. Postdrome/hangover is so frustrating. I think I should feel fine because I’m not actively in a migraine, but I still feel like crap. Though technically I am still in migraine, it is just the post-raging headache phase of migraine. It is one of those times where I’m blown away by how complicated this illness is and frustrated that so few people have any idea that a migraine is not just a bad headache.

Part 2
The need to be productive overcame me, so I forced myself off the couch to start laundry and fill the dishwasher. After 30 minutes of being upright, I am shaky and dizzy in addition to my other complaints from earlier. I’m now wondering if this postdrome is turning into prodrome for another migraine or if I simply did too much too soon.

This constant wondering is frustrating, but also fascinating. I’m so interested in better understanding the process of this illness that regularly overtakes my body. Now that the migraine attacks aren’t constant, I’m experiencing what an individual migraine episode is like for most people. I’m also getting a better grasp on how incredibly debilitating my degree of chronic migraine has been.

I spoke with someone last week who has chronic migraine, too. She mentioned The Day-to-Day Life of a Chronic Migraineur, a post in which I chronicled my life over several days. Though she has five migraines a week, she also has a lot of pain-free time. We are both diagnosed with chronic migraine, which is defined as 15 or more migraine days per month, but the reality for each of us is vastly different.

Part 3
It is now Tuesday afternoon. I was indeed in prodrome for another migraine, then spent this morning in postdrome. Another migraine came on just after noon, but I was able to abort it with Amerge, so I’m out of the migraine-rinse-repeat cycle for now.

I feel a bit sorry for myself at the moment: I tell everyone that I’m doing so much better — and I am much improved from four weeks ago — but I also have to acknowledge that I’m still in some stage of migraine all but a handful of hours each week. I am thrilled to be doing as well as I am, just as long as I don’t pay too much attention to the fact that I still have chronic migraine that’s on the severe end of the spectrum.

*Sigh.*

The Postdrome: Migraine’s Silent Sister is an interesting article I came across while writing this post.

When I awoke around 5 a.m. yesterday to a level 5 migraine, I felt not exactly relieved, but sort of comfortable. Like, after a week of the uncertainty of different head pain and unusually low migraine levels, I was in a familiar place again. Not that I was happy to be there, just that there’s comfort in a well-known situation.

But even that comfort wore off as I realized I didn’t know what to expect from the migraine. Will it worsen? What symptoms will I experience? Will pain be a major factor? These are not questions I typically ask, but I have felt so much better the last few days that I was acutely aware of every aspect of the migraine and concerned what it might mean. The most worrisome question plaguing me was: Am I back to the place where migraine is my default state?

Before I began the mindfulness for health course I took four years ago, I met with the instructor privately for biofeedback. She mentioned that she had just gotten good news on medical test results, but didn’t want to get swept up in thoughts about the results. She said she “didn’t want to be tied to that outcome.” I was puzzled by this and didn’t really understand what she meant. As I have become more familiar with the practice of mindfulness, I have revisited that conversation, never more so than the last week as I attempt to grasp magnesium’s effect on my migraines. The idea is that the teacher could celebrate that she’d gotten good news, but didn’t want to assume that the news would always be good in the future or that her happiness was dependent upon the news always being good.

Not being attached to the outcome relates to the Buddhist idea of impermanence — a concept that I was heavily invested in just last month when the migraines and depression were wearing on me. I kept telling myself that although it felt like the misery would never end, it would eventually lessen. I reminded myself that my migraines had been better as recently as November and that they would lessen again. Now I’m working with the flip side of impermanence. Just because magnesium is helping me now, it may not always help. The fact that my migraines have lessened significantly in the last nine days does not mean I am out of the woods forever.

A friend asked if I was floating around the house in bliss when my pain was at a level 2. Well, I was cooking and dancing and marveling at how little pain I was in, but I was doing so with great care. I don’t trust that I’m going to continue feeling this good. I’m still afraid I’m going to discover that this good spell is an unrelated fluke and the magnesium isn’t really helping at all.

Please don’t think I’m ungrateful or that I’m not thoroughly enjoying this respite. I am uncertain is all. I’ve learned to live with severely debilitating migraine. The possibility that it might no longer limit me so much is overwhelming and seems a but suspicious. I don’t want to get too excited for fear of being let down. Though I dread being wishy-washy, the phrase “cautiously optimistic” captures my attitude exactly.

Studies show that sham acupuncture is as effective as true acupuncture, and Dr. Dodick concludes from this that both work. The proper scientific interpretation of this result is that the treatment (acupuncture) is no different than placebo (sham acupuncture) and therefore has only a placebo effect.

Novella’s argument is sound and I agree with his conclusions. What intrigues me is why the American Headache Society and its president (and my headache specialist), David Dodick, are touting the benefits for acupuncture when the science is weak. Is it that there are so few effective treatments for migraine that even those without strong evidence are considered worthwhile?

It reminds me of when I was considering Botox injections and was surprised to find that studies only showed minor reductions in headache days of participants. From headlines, you’d think Botox had eradicated migraine, but studies have had only modest results.

The paltry options for treating migraine and the lack of funding for migraine research are disheartening. Urge Congress to take notice by signing the Alliance for Headache Disorders Advocacy’s petition.

 Thanks to reader C. Peterson for sharing NeuroLogica Blog’s post.

I’m kinda afraid that acknowledging the improvement will somehow negate it, but a friend pointed out that if I could have a mental or cosmic affect on the migraines, I would have done so by now. So, I’ll take a deep breath. . . and shout MAGNESIUM! Magnesium is the difference. Last Tuesday I increased my magnesium dose from 500 mg to 700 mg per day and I’ve noticed a change in how the headaches feel as well as their severity.

I’ve still had headaches, but they feel different. The pain is more of a tight band of pressure around my head and moving doesn’t worsen the pain. Stretching under a warm shower and massaging my neck often relieves the pain. These factors add up to tension-type headaches, which, considering how tight my neck and shoulders are (something I was only vaguely aware of when the migraines commanded all my attention), makes sense.

The migraines aren’t gone altogether. Last week I had a couple I’m convinced were triggered by muscle spasms (I was experimenting with pillows) and spent Thursday as a couch zombie. I’ve also aborted a couple migraines when I noticed prodrome symptoms of feeling overheated, trembling, or ice-cold hands and feet.

I haven’t been absent from the blog because of this newfound relief. January was a rough month for me with both migraines and depression. The depression got pretty scary and really pulled me down the last couple weeks, though the last few days have been better. There appears to be a strong connection between how severe the migraines are or how long they last and my degree of depression. I’m not saying I’m depressed because of the pain, but I think something happens in the brain during a migraine that kicks up the depression. I don’t know if there’s any scientific evidence to back this up; I intend to ask my headache specialist about it.

I’m thrilled that my head pain is better, though still not convinced it will last. I am trying to enjoy it in the moment without assuming I will continue on an upward trajectory. This is a new challenge in my mindfulness practice — a challenge I am grateful to pursue!

Enough about me. Could magnesium help you? In addition to headache specialist Christina Peterson’s article Should You Be Taking Magnesium?, look into The Magnesium Solution for Migraine Headachesby Jay Cohen. This short, inexpensive book is my preferred resource on magnesium and migraine. I’m working on a summary of the information I’ve gleaned from it, though don’t know when it will be ready to post. If you decide to try magnesium, it is important note to note that different types of magnesium supplements have different absorption rates and side effects. I am using Bluebonnet’s buffered magnesium glycinate chelate with no problem. It is more expensive than other kinds, but doesn’t make me nauseated.

American Headache Society Supports the Use of Acupuncture in Migraine Treatment: Both Traditional Acupuncture and “Sham” Acupuncture Provide Relief

Mt. Royal, NJ (February 1, 2012) – When it comes to treating migraine, so-called “sham” acupuncture (where needles are inserted only to a superficial depth in the skin and not in specific sites) and traditional acupuncture where needles are inserted in specific sites, both are effective, according to the American Headache Society (AHS).

Citing publicity surrounding a recent Canadian study comparing the effectiveness of the two types of acupuncture, David W. Dodick, MD, AHS president, said both types of acupuncture, particularly when electrical stimulation is involved, may work to release endorphins that are important in controlling signals of pain and inflammation.

“How much of a benefit sham acupuncture can have on the release of these chemicals is unclear,” he said. “This suggests the benefits of treatment may not depend on the exact technique of acupuncture and needle positioning.”

There is ample evidence supporting the value of acupuncture in migraine treatment, Dr. Dodick noted, including four studies that compared acupuncture to standard migraine preventive medications. Acupuncture was found to be at least as effective and produced fewer side effects.  Further, he noted that a randomized clinical trial study published in November comparing acupuncture to topiramate in chronic migraine prevention showed that acupuncture was more effective than topiramate. Topiramate is an anticonvulsant often used in epilepsy.

Dr. Dodick said that needle positioning may be less relevant than acupuncturists believe, and acupuncture should be offered to patients as part of their options for migraine management.  “Further, the long-lasting effects of acupuncture, given that subjects continued to experience a reduction in migraine frequency two months after treatment, is also noteworthy and not a point to be ignored,” he said.

“Along with biofeedback training, cognitive-behavioral therapy, and lifestyle changes, acupuncture provides some migraine sufferers with a safe, non-pharmacologic treatment choice, and one that can also be used during pregnancy,” Dr. Dodick said.