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Reintroducing Foods, Reintroducing Migraines

After reading The Post I Never Thought I’d Get to Write, you may think I’ve been gallivanting around town, throwing parties, and having a grand old time this week. I wish. I’ve been testing foods… and having migraines.

There’s no way I was going to waste all the work to eliminate food chemicals from my diet without reintroducing them slowly and methodically. Testing was going great until the day I stopped drinking the elemental formula completely. So now I’m playing around.

“Playing” sounds like fun. It’s actually tedious and frustrating. Here are some of the variables I’m investigating:

  • Do I need more DAO than I’ve been taking?
  • Would I feel better if I took one Histamine Block before eating a small meal, rather than taking two and eating a larger meal?
  • Are the foods I’m eating too difficult to digest?
  • Would juicing fruits and vegetables ease digestion and, thus, not trigger migraines?
  • Am I sensitive to salicylates (the food chemical I was testing)?
  • Am I reacting some other food chemical that I wasn’t on the lookout for?
  • Do I need to rotate foods? (If so, how in the world can I do this with only a few sources of protein and mostly vegetables, which won’t meet my caloric needs for a day?)
  • Is just one food in the group I reintroduced problematic?
  • Does overall sugar content matter?
  • Does not drinking water with a meal reduce the possibility of a migraine? What if I drink a lot of water with a meal?

The food details are even more complicated because I no longer have reliable indicators for when a migraine is coming on. Tooth sensitivity can come on part way through a meal, last for two hours, then stop without a migraine ever developing. Fatigue can come on and then abate after an hour. I don’t want to waste a triptan or drug myself up unnecessarily, so I don’t take anything.

So, I’ve had a migraine every day for the last week (I had one when I was writing last Thursday, I just didn’t realize it), but the pain has only reached a level 5 once. When a migraine hits a level 4, it doesn’t stay that high for long. Much of my days are still spent with pain levels at a 2 or 3. Fatigue is generally short-lived and brain fog is not severe. For me, this is Disneyland.

I am not discouraged. I knew reintroducing foods would increase the migraine attacks and that sorting out all the dietary variables would be messy. I still believe DAO and histamine are valuable pieces of my puzzle. Exactly how they fit into the picture is still unclear, but you can be sure I’m going to find out.

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An Almost Normal Life Thanks to an Extremely Unhealthful “Diet”

In April, my migraine frequency and severity finally decreased enough that I began to feel like I had a normal life again for the first time in more than a decade. The pieces have been falling into place for a while: the move to Phoenix, wearing TheraSpecs, starting a high dose of magnesium, taking cyproheptadine, attempting a low-histamine and low-salicylate diet, starting Ritalin. I’ve been feeling better than at my worst for a while now, but it wasn’t until April that I began to feel like I could have a consistently almost normal life. The change? I took my diet down to nothing but gluten-free oats, chicken breast cooked in safflower oil, and unenriched white rice. I felt even better after cutting out the chicken and safflower oil a few weeks ago.

I haven’t written about this “diet” — what I eat isn’t healthful enough to constitute an actual diet so I have to use quotation marks — because it is unhealthful and I do not recommend it to anyone. It is an untenable solution and I worry about my nutrition all the time. Yet, I can’t let go of the life that eating this way has given me.

On this limited “diet,” I wake up each morning and know I can probably do what I have planned, rather than knowing I’ll be lucky to mark two items off my list. It enables me to have engaged and interesting conversations with my husband, make plans with friends actually be able to follow through, write regularly for Migraine.com and The Daily Headache, make meaningful decisions for TheraSpecs, exercise most days, go to yoga classes, attend therapy appointments…. In other words, subsisting on oats and rice is the difference between living a fuller life than I have in more than a decade and spending most of my time on the couch, in the unpredictable throes of a migraine.

I know I need nutrition and I don’t plan to eat this way indefinitely. It has yielded some important clues that I hope will further my treatment — I have an appointment with a dietician experienced in food sensitivities in a couple weeks and my naturopath is going to test me for metabolic disorders. While waiting for those appointments and results, I’m slowly testing high nutrition foods to see how I react. I do so with great caution. It’s hard to willingly return to the migraine cage I’ve lived in for so long.

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Trusting Myself With the Failsafe Diet

Have I lost my mind? This is what I wonder daily when I consider this low amine, low salicylate, and additive-free diet that I’m still on. I mean, seriously. I’ve severely restricted what I eat based on guidelines from one hospital in Australia, which uses the diet to treat behavior problems in children, not migraine or headache. I rely on The Failsafe Diet Explained for accessible, concise information about the diet, a website written by someone only known as alienrobotgirl who doesn’t share her background or credentials.

“Trust yourself” is the best migraine (and life!) advice I’ve ever received, and it is what I’m trying to do with this diet. Trusting that I know what I feel like on a baseline diet of chicken, unenriched white rice, and gluten-free oatmeal. Not just an overall pain rating, but where the pain is located and what it feels like, how much energy and stamina I have, how dizzy and nauseated I am not. And trusting that I can identify how those things change when I test foods that don’t agree with me.

Last week I tested short grain brown rice. Within 24 hours, I had the most painful migraine I’ve had in months. While it seems impossible that brown rice could trigger a massive migraine, there were no other obvious variables at play, not even weather. This is insufficient evidence for any scientific trial, but I know how I felt. I’m not going to swear off brown rice forever, nor am I going to preach to the world that it is evil. I’m simply going to be aware of how my body seemed to react and avoid it for now.

This diet is a wacky experiment with variables that are impossible to isolate. Part of me wants to say it is all crap and move on. But I cannot deny how much better I have felt on it. I’m a poster child for intractable chronic migraine. If something decreases my head pain and isn’t going to hurt me (once I improve my nutrition), then I’m going to stick with it and slowly reintroduce foods to test them, rather than ditching it all and eating whatever I want.

I’m not going to declare that the Failsafe diet is be the solution for everyone (nor am I sure it is the solution for me), but maybe there’s something to it for some of us with refractory migraine. Scientific studies show that some people have trouble processing lactose or gluten. Is it too far-fetched to believe that other components of our food could be difficult for some bodies to process?

I’m still skeptical, but I’m also still on the diet. I’m the only one who knows how I feel — that makes me the expert here. I have to trust myself on this one.

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2012: A Year of Remarkable Personal Migraine Progress

Exactly one year ago tomorrow, I had a massive breakdown. Sobbing, I proclaimed that I wanted out of this life. I didn’t want to fight anymore; I didn’t want to live with chronic migraine any longer. I even wished for cancer so that I could choose to not treat it, thus dying without technically committing suicide.

Today, my head pain is at a level 4, which is the highest the pain has gotten in a week. In the past four months, the pain usually topped out at a 5, occasionally a 6. Still far from comfortable, that’s way better than daily pain that hits a level 7 or 8, where I was last January. I don’t know how these pain ratings appear to anyone outside my body, but to me, pain reduction of even a single number is cause for celebration.

In the 11 years that chronic migraine has been the focus of my life, last year was the first in which I made significant progress in reducing the severity of attacks. I tried more than three dozen medications in that time and countless other Western and alternative treatments and diets, none of which had any effect. To see any progress is amazing to me; to now be at a place where I expect even more improvement than I currently have experienced is astonishing.

Though you’ve read about my progress through the year, here’s a summary of what’s working for me:

Magnesium: Although I had been on magnesium before with no success, I noticed an improvement  increasing the dose to 700 mg. After trying IV infusions to see if they would be more effective (they weren’t), I ultimately pushed my daily oral dose to 1,000 mg.

Cyproheptadine: The starting dose of 4 mg was enough for me to feel a bit better. Each 4 mg increase brought additional relief until I hit 16 mg, which didn’t seem to be any better than 12 mg. I’m back at 12 mg, though will probably try increasing it again, to be sure that I wasn’t just having a bad week the first time I tried 16 mg.

Diet: It has been a year since I started an extreme version of a traditional migraine elimination diet. Until a month ago, the diet was horribly frustrating. It seemed like both nothing and everything I ate were triggers. I wondered if there were other aspects of foods that I was unaware of that could be triggers. Then a reader mentioned that she feels better when she avoids foods with histamine. This started major research and an even more drastic diet to cut out amines and salicylate.

The initial improvement started to look like a fluke as the migraine attack severity returned to previous levels. A week ago, I switched from ground dark turkey meat to skinless chicken breast as my main protein source and the migraine severity dropped to a level 4. I’m still tweaking the diet and waiting to see a nutritionist. It will be a long process as I test out foods I’ve been avoiding, but I really think histamine and salicylate content in foods and body/beauty products is a major component of my debilitating migraine attacks.

I have so much more to tell you! There’s a detailed post about the diet coming later this week. First I needed to write this overview to remind myself of the massive improvements that 2012 brought. Sure, I still feel worn out and discouraged at times, but every little bit of progress shows me that chronic migraine is necessarily not a life sentence. A year ago, I was convinced I’d never escape that prison.

I was basically the prototype of chronic intractable migraine. (In a bizarre sort of way, that sounds like bragging.) Ten years with no improvement. Countless doctors, naturopaths and all manner of traditional and alternative health care providers have given up on me. I had given up on me. If I can see improvement, so can you. The struggle may be long and arduous, but there is always, always hope. Hang in there.

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The Constant Questioning of a Chronic Migraineur

These migraine attacks are kicking my ass. One after the other and, while not terribly painful, they are persistent and exhausting. Two weeks ago I was sure my new diet was helping; now I think I was unreasonably optimistic.

So I’m in the constant questioning of a chronic migraineur: Can I identify a trigger of my current migraine spell? The stormy weather? Food chemical “withdrawal”? This mild cold that’s dogging me? All of the above? None of the above?

Then come the questions of a woman who has been obsessed with food triggers for the last year. If the current attacks are food chemical withdrawal, will I feel better soon? Is the diet doing anything? Am I on a path toward any relief?

As so often happens, I make a change to diet, sleep, exercise, where I live, etc. and notice an improvement at first. Then the gap closes and I’m back to debilitating migraines. Magnesium and cyproheptadine are the only variables that have brought sustained relief.

I operate as if chronic migraine is a puzzle I can figure out if I just get the right pieces in place. No matter how hard I work, the solution continues to evade me. I refuse to give up, but I have to wondering if I’m wearing myself out on an unsolvable riddle. Beating one’s head against a brick wall can’t be good for a migraineur.