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Out of Comission

My health has been on a steady slide since June. I’ve spent the last six weeks mired in horrendous fatigue. I cannot think and can barely function. My frustration is high. I’m scared of what’s to come and grieving for what I’ve lost. Overall, I managing to stay relatively optimistic and present in the moment, but I have some bleak times.

There’s more to tell you than I’m able to write. I’ll leave you with the best news I have right now: a gastroenterologist has finally agreed to see me. There has to be a reason I get a migraine every time I eat; whether or not that reason can be found remains to be seen. My appointment is on October 6 and I see my headache specialist on October 7.

 

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An Update

I’ve been away far longer than I expected. Since I know you worry, I wanted to let you know that I seem to be improving v-e-r-y s-l-o-w-l-y. Eating is back to triggering migraine attacks (this is not a failure of DAO; another treatment I tried went haywire). Tolerex (the feeding tube formula) seemed like the perfect short-term solution… then it started triggering attacks, too.

Since the max dose of naratriptan (Amerge) is two tablets a day, for the last week, I’ve been eating two meals each day and take a naratriptan and two Midrin after each one. (Please don’t double up on a triptan and Midrin without talking to your doctor first—it could increase stroke risk. My doctor said it was OK for me, but his nurse freaked out when I told her about it on the phone.) This is not a solution, it’s only a bandaid. One I’m grateful to have, but a temporary fix nonetheless. My doctor and I have determined that I am not prone to medication overuse headache, so that’s not a concern, but these drugs are too harsh to take twice a day indefinitely. More significantly, it helps with the eating-triggered attacks, but leaves me without effective treatment if any other triggers come along.

The other problem with the current regimen is that it doesn’t help like it used to. Three months ago, a naratriptan and two Midrin would stop migraines within a couple hours even when I’d eaten way off the diet. Now, the drugs leave me in a low-level migraine almost all the time even when I eat foods that were once fine. The pain is a little worse than typical, the brain fog is little bit less, and the fatigue is considerably less. It’s like it has averaged the highs and lows that have been typical for me in the last year, so that now I’m in a constant state of mild-ish migraine. Turns out I prefer the highs and lows.

Today I am hopeful that I’ve found something else that will help. I’ve been taking probiotics since August. When I stopped them for a week in Septemeber, foods that had been OK became triggers. Going back on them let me eat those foods again, but hasn’t allowed me to reintroduce any more foods, even at higher doses. The probiotic I’m taking now, VSL #3, has one less strain than the one I originally took. I tried adding that strain individually a while ago, but it triggered migraine attacks. Four days ago, I opened up the capsule and only took a sixth of it. No migraine ensued and I’m now up to taking a third of the capsule each day. My reactivity to foods seems to be lessening. Maybe this is the probiotic, maybe it’s just time. The improvement could be a fluke or short-term, but it feels like more progress than I’ve had in the last few months.

This has been frustrating and scary. And I don’t even get to eat whatever I want—foods that were moderate triggers before are now major triggers that require more triptans and Midrin than I can take in a day. I’ve been catastrophizing some, but can mostly keep it at bay by reminding myself that I have no idea what the future will bring and that the past cannot predict it. Still, thoughts that I might never feel as good as I did six months ago aren’t far from the surface.

Thank you for your kind comments and emails. It helps a lot to know I’m in your thoughts. I’m thinking of you, too, and am sorry I’m unable to respond to comments right now. You’ll hear from me as soon as I’m able. Today I’m cautiously optimistic that it won’t be another month between posts.

(For an unrelated feel-good moment, take a look at these beautiful illustrations of love. They’re not flashy, romance novel-worthy moments, but the quiet, consistent moments of love. They brought me to (happy) tears.)

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Food Sensitivities: What I Miss and Crave

“I could never give up X.” That’s the response when I mention my diet to someone new.

And I think, “You could if it meant the difference between spending all your time in bed and getting to do the normal things of life.” At least that’s the case for me.

I was surprised to discover that I miss foods I never expected to miss and crave foods that I don’t particularly miss.

Toast is what I miss the very most. This is entirely unforeseen. I like toast, I don’t loooove toast. I won’t go so far as to say I could normally take it or leave it. Warm, slightly crispy bread with yumminess on top is hard to resist. But it’s not something I made frequently. I was more likely to let the last half of a loaf languish in the freezer than think to turn it into toast. Now I see a loaf of bread and immediately think of a perfectly toasted slice of bread topped with melty butter. The butter is absolute, the other toppings depend on the day: strawberry jam, honey, peanut butter. That’s another oddity — I don’t have a particular affinity for strawberry jam over any other kind, but it’s the only one that tops my imaginary toast. Despite missing toast so much, I only crave it when I see a loaf of sliced bread.

I crave Golden Grahams a lot. A lot. I have eaten them far less than toast in my lifetime, but I can’t shake the thought of Golden Grahams. This is definitely a craving, not a missing. I don’t think, wistfully, “Oh, how I miss Golden Grahams,” like I do with toast. Instead, I think about how delicious Golden Grahams would taste and the craving grows increasingly fierce. I finally gave in and got a box. They were as delicious as I expected.

At the grocery store, I crave graham crackers and animal crackers. I don’t think of either one any other time, but both call to me every time I’m food shopping. Again, neither have been staples in my diet, except for brief period when I worked late a lot and animal crackers were the most healthful option in the vending machine.

There are five restaurant dishes I crave, mostly from chain restaurants. That in itself is odd, since I used to choose local restaurants over chains almost all the time. The chain restaurant meals that I daydream about are Pei Wei’s honey seared chicken and crab wontons (my migraine comfort foods of choice), fish tacos from Rubio’s, and a burger and fries from Hillstone (formerly Houston’s). I’ve enjoyed all three of those a few times in the last year since the migraines that result from them respond very quickly to triptans. The two local foods I haven’t yet tested are the amazing tomato-mozzarella sandwich made with bread fresh from a wood-fired oven and the best waffle I’ve ever had. I suspect those will be indulgences soon.

There are many other things that I miss and/or crave with less regularity. Boston cream doughnuts have been high on the list recently, as have ginger scones. At first, I craved my homemade cookies a lot, particularly chocolate chip and shortbread. I’ve eaten them several times and they’ve been delicious, but no longer crave them as often anymore. I wish I could figure out how I stopped craving them.

Are you bored to tears by this foray into foodie blogging? If you haven’t given up reading yet, thanks for sticking with me. It’s been surprisingly cathartic to write about the food I wish I were eating. And I’ve realized that the one commonality of all these foods is wheat. Like there was any doubt I loved wheat.

I won’t lie and say I’m OK with the diet. I dislike having so little variety and not being able to cook with herbs or spices. I have to eat way more meat than I’d like. It takes an absurd amount of time to shop and prepare food. Sometimes I have to work really hard to finish the swiss chard, bok choi or fish (and other times I just give up, knowing that if I force myself to eat something I’m really not into, I’ll gag and it will be even harder to eat in the future). Day 2 of the rotation diet was unequivocally terrible until a couple weeks ago and day 3 is full of pungent food that’s hard to eat if I have a migraine. Still, the benefits continue to outweigh the frustrations. Most of the time.

 

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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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DAO and Diet: Does One Work Without the Other?

The short answer is maybe. The options in order of efficacy: 1. DAO and diet combined, 2. Diet alone, 3. DAO alone. There’s a very good chance the enzyme won’t be effective unless you also restrict your diet.

For me, diamine oxidase (DAO) has been very helpful only in conjunction with a low-histamine diet. From my experience trying to reintroduce foods, I am now positive that DAO alone would have done nothing for me. My dietician confirmed that. On our last call, she said “Even with DAO, you just can’t eat foods that are high in histamine. You just can’t.” Don’t panic, she was talking about me specifically, not everyone, and I’m an extreme case. (The link above will take you to a comprehensive Q & A on histamine intolerance and DAO. This one takes you to everything I’ve written about DAO.)

I’ve heard of a few people benefiting from DAO alone, but almost everyone who finds relief is also on a low-histamine diet. I know it’s a downer. Restricted diets can be a burden, especially at the beginning. It should tell you something that despite being frustrated and annoyed with my diet, I’m still sticking to it. Having times without migraine is just too precious and that only happens for me on the diet and taking DAO.

A few readers have told me DAO has been a magic bullet for them, but most who try it without diet modifications have no success or inconsistent results. Even with the diet and DAO, you may not get relief. If histamine isn’t a major trigger that sets migraine off in your body or gives you headaches, avoiding histamine or taking an enzyme that processes it won’t be of any use. Unfortunately, there’s no blood test or other quick, definitive way to figure out if this is the case for you.

I wish DAO were an easy answer and that the supplement could take the place of a restricted diet. Unfortunately, that’s just not the case for most people. And, unfortunately, it may not work at all for you — that’s just the nature of headache and migraine treatments.

Looking to buy DAO? You can get Histamine Block and Histame from Amazon. (I’m an Amazon affiliate, so I’ll get a small portion of the sales if you purchase through one of those links. I have no relationship, financial or otherwise, with any company that manufactures or sells DAO.)