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An Unexpected Pep Talk (Following Some Reflections on Wellbutrin, Migraine)

After crying over the royal family, I knew I needed an antidepressant sooner than it would take to convince my insurance company to cover Viibryd. Since the dizziness had almost subsided and I didn’t want to wait to get a prescription for yet another drug, I tried increasing my Wellbutrin dose to what it was before the four-day migraine attack in January. No additional dizziness. In fact, it finally stopped the residual dizziness that had kept me unsteady. I’ve been back at my pre-migraine dose for two weeks and am doing fine.

I’m frustrated with the constantly moving target that is my health, but I’m also fascinated by it. The migraine attack changed my brain and, through my reaction to an unrelated medication, I was able to see my brain change back to it’s pre-migraine state. I knew that would happen, but being able to observe it was unusual.

It’s just one of the many changes I’ve been able to observe in my body now that I don’t have a migraine all the time. I can feel fine, but if my feet are freezing, I know I’m in the early stages of an attack. I can be writing for hours and thinking at full capacity, then notice that constructing sentences has suddenly become difficult. Even when eating doesn’t trigger a migraine attack, it can hint at one for a while and I’ll have to stop working until it resolves, which is usually does within an hour without medication. These are just a few examples of the many new reactions I can see in my body.

It would seem like someone who has had chronic migraine for as long as I have would have figured these things out by now. That was impossible, though, because the migraine attacks never stopped. I didn’t have a clear idea of my prodrome symptoms because I never knew when a migraine was ramping up again. I had experienced the metal fading before, but only recognized it when I was already deep into the attack. Now I notice within a few minutes after the cognitive dysfunction begins.

Despite knowing that identifying triggers and prodrome symptoms would be crucial to managing attacks, it seemed like an elusive, if not impossible, goal for most of my time with chronic migraine. I kept trying, even though it was terribly frustrating and I had a lot of misattributions along the way. I’m glad I did. It’s even more valuable that I imagined it would be. I’m more able to avoid migraine attacks now that I was even a year ago and I can take triptans at the earliest possible moment, which reduces the total time I spend in a migraine attack. At least once a week, I take a triptan and only slow down for 30 minutes before I’m fully functional again. I had a “bad” one yesterday—at least really bad for how they get these days—the pain hit a 6 and I was down for six hours. That’s a Sunday drive compared to how they used to be.

I still credit DAO with most of my improvement and my diet is second, but the benefits of knowing triggers and prodrome symptoms continue to increase. With 40 foods in my diet still and only adding two new foods in the last seven months, I often feel like I’m stuck. Then I remember how much shorter my attacks have become and that my cognitive impairment has decreased so much that I’m able to write through more migraine attacks than I’ve been able to in at least eight years. I’ve changed nothing treatment-wise since September, yet, on average, each month is a little better than the last. It’s a slow, slow climb, but I’m still climbing.

I always worry that I sound like I’m bragging or showing people up when I write about my improvement. I share it so you can know that improvement is possible and that even when if feels like you’re totally stuck, you could be making progress that you can’t yet see. When you feel terrible physically, it can seem like you’re failing yourself by not actively searching for and trying new treatments. Sometimes holding on is the best you can do for a while. I know that’s terribly clichéd, but it’s meaning is exactly what I wish to convey. Know that it won’t always be this bad. Instead of criticizing yourself, try to give yourself some love. You need it and deserve it.

That turned more “rah-rah” than I expected. I won’t delete it because it’s something I wish I’d come across five years ago. Since I’m a cheerleader baring my heart, I want to add this: I may not know you by name, but I do think of you all and wish the best for every one of you. I haven’t been in the exact place that you’ve been in, but I’ve lived through years that I have no idea how I survived. I believe you can do it, too. It may not feel like it, but you can.

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Progress is Not Linear: Arrrgggh!

I fall for it every time. One good week and I assume every week thereafter will be exactly the same: low pain, little fatigue, high energy. Two weeks ago I went to four yoga classes, cleaned, ran errands, and wrote like crazy. The next week was only two yoga classes, a little writing, and one massively productive day around the house. This week? Nada. Well, I made it to yoga Monday, but have otherwise done very little. My mind, in its unhelpful negative self-talk mode, says I’m being lazy. My body, with its bone-deep fatigue, nausea, and aching head, says I need to rest.

Not only do I assume each week will be the same as (or better than) previous weeks, but if it isn’t, my default belief is that I’m doing something wrong. I’m not sleeping at the right times or eating the right food or doing the right amount of exercise. With the amount of emotional energy I spend trying to do everything right or following up on all the “shoulds,” you’d be hard-pressed to know that I’m rather a free spirit. Attempting to keep migraine at bay has turned me into a rule follower. That there’s an infinite number of rules, none of which apply all the time or to everyone with migraine, makes me exert even more effort toward perfection.

I cannot think that the diet isn’t working wonders. I won’t let myself believe that I’m not making continual progress. Which is totally absurd. I have had chronic daily headache for 25 years and debilitating chronic migraine for more than a decade. Assuming that improvement will be linear is illogical. There will be ups and downs, steps forward and steps back. I know all this. Now how do I believe it?

Time to back off, breathe deeply, and just be. Be without scrutinizing, judging, or attempting to change. These are the big lessons in life that I embrace in theory. Applying them is the challenge.

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Breaking the Fast: A New Headache Pattern

Breakfast may be the most important meal of the day, but I’ve come to dread breaking the fast. No matter what time I eat my first meal of the day, anywhere from 5 a.m. to 1 p.m., it kicks off a downward spiral.

For the last two weeks, I have little head pain and a lot of energy before breakfast, then I eat and slowly fade over a few hours: my head pain increases, my mind gets muddled, I get so sleepy. The changes are barely noticeable at first, but this migraine or headache (not sure which it is) makes it difficult to push through the day. Eventually I succumb to a nap for a couple hours in the early afternoon. I awake refreshed, with only minor head pain (level 2 or sometimes 3) and am able to think, stay awake, and be productive for the rest of the day.

Breaking an overnight fast seems to be the trigger. Whether I have chicken and rice, rutabaga, or cabbage at breakfast*, the slow onset of headache, brain fog, and fatigue is inevitable. Eating these same foods after the afternoon nap doesn’t bring on a headache or migraine.

Medication seemed a plausible factor, especially because antidepressants are thought to exacerbate Failsafe food sensitivities and Cymbalta is the one drug I only take in the morning. I’ve tried taking it and waiting a couple hours before eating, once even stretching the gap to four hours with a yoga class in between. On those days, I don’t feel bad (just hungry) until after I eat, then I feel worse quickly instead of having a slow fade. The nap doesn’t have the same reviving effect on those days, though.

The new pattern is actually nice. Instead of reading at the end of the day, like many people do before bed, I do it after breakfast because I’m too fatigued to do anything else. I’m energized in the late afternoon and evening, so that’s when I go to yoga, write, and do chores. (Bonus: I get a fantastic energy boost following evening yoga and the pain drops to a level 1 until I eat again.)

Although having some sort of schedule for the first time in forever is fantastic, eliminating these crashes would be even better. Does anyone else experience a similar pattern? Please let me know if you have any clues as to what might be going on — and how to deal with it!

*Wondering why I choose such odd breakfast foods? Read about the Failsafe diet I’m trying for migraine and chronic daily headache, starting with the last post first. I really think it’s working!

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The Everlasting Search to Pinpoint Migraine Triggers

It never fails. I return home from a trip* and a migraine hits within a few hours. As always, there’s the urge to figure out what went wrong, what triggered the migraine. I could blame it on insufficient protein in my breakfast and lunch, restless sleep, not drinking enough water, or the mere fact that I was on an airplane for three hours. Or I could use the commonly cited trigger of stress — the stress of travel, the stress of returning to the demands of normal life, the stress of leaving friends, or the stress release upon being home. (Whether stress is actually a trigger is debatable.)

Practically anything, whether it is positive, negative or neutral, could be a trigger. Eating a particular food? Not eating enough? Eating too much? Inadequate sleep? Excessive sleep? Weather changes? Schedule disruption? Flying? Any of these could be a trigger. This is the trouble with migraine. (Well, actually, there are many troubles with migraine, but this is the one that ignites most of my fruitless worry and unfounded self-flagellation.)

Not only is the field of potential triggers wide open, they are additive. Something might not be a trigger in isolation, but add on a couple more triggers and the attack begins.

What most triggers have in common is that the migraineur can be blamed for causing them to happen. “You have a migraine? Well, if you had taken care of yourself by sleeping/eating/breathing correctly, you wouldn’t have gotten it.” This seems to be the attitude of the general public. And we migraineurs are pretty quick to judge ourselves, too. Of course we don’t want to have migraine attacks and changing our behaviors or diets is one potential way to feel like we have some control over this illness. More importantly, it could reduce the frequency of attacks, which must be a universal goal among migraineurs.

Triggers are absolutely real. But they are also different for everyone. And sometimes you can follow all the rules and still have a migraine attack. That’s the case for me 95% of the time, yet I still have a migraine nearly every day. I feel like I must be doing something wrong, but have no idea what it is.

*I wrote this last week after returning from a wedding in Minneapolis. It devolved into a rant, so I let it sit a while before editing and posting.

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Migraine Diet: Five Months and Counting

Remember that extreme migraine diet I mentioned in January then never spoke of again? Normally, my silence would indicate that it was a passing fad that I gave up on quickly. This time it is because talking about the diet — really even thinking about it — makes me unhappy. The only way I’ve been able to stick to it was to put my head down and plow ahead as blindly as possible, eating because my body needs fuel, but not getting much pleasure from food.

You may have guessed that I haven’t noticed much of a difference in the frequency or severity of migraine attacks. If limiting my food choices had caused the migraine attacks to decrease in severity or frequency, I’d gladly eat sawdust for the rest of my life. Instead, the migraines are still so frequent that I’m afraid to add food back in because I won’t be able to tell if a food triggered the migraine or if it was bound to happen anyway.

The Diet
I don’t do much halfheartedly and this diet is no exception. I’ve cut out all food on the tannins and tyramine lists — both those that are high in the substances and those that are on the OK-in-moderation list. The older a food is, the higher the tyramine content, so I try to cook food the day I buy it, then freeze it. Grocery shopping takes a lot of energy, so this is more often the goal than the reality.

I’ve also cut out everything in Heal Your Headache, the unofficial migraine diet handbook, including monosodium glutamate, aspartame, caffeine, fresh yeast, beta-phenylethylamine (in chocolate), nitrates/nitrites and sulfites. Again, I’m avoiding anything that has been anecdotally implicated in migraine and anything the author says may be a problem for some people.

To make my diet even less interesting, I ditched dairy in April and gluten in early May.

The Results
I began the diet the second week of January, but it was a couple weeks before I eliminated all the potential triggers. Other than constant hunger and an increased vegetable intake, I didn’t notice any changes after starting the diet. However, I confounded variables — February 7 is the magic day I increased my magnesium dose to 700 mg, which kicked off the biggest decrease in frequency and severity of my migraines that I’ve ever had. I continued to increase the magnesium over the next few months and am now at 1,167 mg a day. I attributed all the improvement to magnesium, but food restrictions may have also played a role.

Reintroducing Foods
Here’s the hard part. Actually, the diet had been really hard — here’s the tricky part: The migraines are still so frequent that I’m afraid to add food back in because I won’t be able to tell if a food triggered the migraine or if it was bound to happen anyway. Sources vary on how long it can take for a food to trigger a migraine attack, but many say it can take up to three days. Three days? I usually have three migraine attacks in three days, how in the world can I connect an attack with a food?

So far I’ve tested peaches (tannins) and bread (yeast, gluten and (in the malted barley flour added to some wheat flour) tannins). Twice after eating peaches there’s been no discernible difference, once, six hours after eating the peach, I had my first level 9 migraine since December. Within two hours of eating bread last Sunday, I had my first level 8 migraine since late March and was out of whack the whole week, during which I had a migraine every day. However, I already had a migraine coming on when I ate the bread (yes, I know that was a mistake).

Conclusions
Ha! Like I’m anywhere close to a conclusion. I was much more cynical about the diet when I drafted this post, which was before I began reintroducing foods. After last week’s migraine attacks and with traveling to a wedding this weekend, I’m afraid to deviate from the diet at all. Then there’s a basket of triggers on the horizon as Phoenix is on the verge of the summer monsoon season, which means wind, clouds and thunderstorms. I’m having trouble imagining testing any more foods until September, but I can’t imagine I’ll wait that long.

In addition to the fear of food I’ve developed by being on this diet, I’m concerned that the diet is not nutritionally adequate, that worrying about the diet itself is increasing my overall stress, and that my reluctance to eat bland food is disrupting my eating schedule and increasing my vulnerability to migraine attacks. In other words, I wonder if the mere fact of being on the diet is causing more problems than it is solving. I’m stuck in fear, fear of migraine attacks and fear of food. This can’t be healthy.