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Food and Migraine Frustrations: I’m All Out of Cope

I’m glad I published Full of Hope About the Future of Migraine Treatment Wednesday because my hope has been stretched thin every day since then. The DAO is still working great, but I keep developing reactions (read: migraines) to foods that were once OK. If I could still take DAO eat the same 10 foods I ate this spring, I have no doubt I’d still be feeling great. But now over half of those are migraine triggers.

I’m definitely doing better than I was pre-DAO, especially on days 3 and 4 of the rotation diet, but I’m still having at least one migraine, usually two or three, every day.  Beyond frustration with having more migraines, I want to know why in the world my body thinks a migraine is the appropriate reaction to most foods I consume — and why something can be OK for months, then becomes a migraine trigger every single time i eat it after that.

I’m not looking suggestions in writing this post, I just need to vent. I’m in the process of scheduling with my dietician, though I expect more speculation and dietary experiments rather than answers. I’m frustrated and exhausted and so sick of not being able to eat normal food. And really not happy to once again be considering Tolerex for some portion of my calories/nutrition because I know I’d feel great if I just didn’t eat.

I’m trying to cope and not doing so very successfully. I apologize for still not getting to blog comments following my time off. I will as soon as I have a little cope to spare.

(“All out of cope” is a phrase I stole from Hart. Isn’t it great?)

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Fluorescent Lights and Migraine Attacks

fluorescent light migraineJust a day after I got caught out without ear plugs, I exposed myself to another migraine trigger common in public spaces — fluorescent lights. I am never without TheraSpecs, but I occasionally take them off for a few seconds when I need confirm an exact color match (like choosing embroidery floss). That’s what I intended to do, but got so absorbed in what I was doing that I left them off for 10 minutes.

Lo and behold, a migraine began with a spate of icky symptoms — dizziness, disorientation, nausea, wooziness and irritability. I was unhappy about the migraine, but was pleased by the illustration of just how effective indoor TheraSpecs are.

Because I wear TheraSpecs all the time, it has been so long since fluorescent lights have triggered a migraine for me that I forgot just how quickly a severe migraine follows exposure. The difference really is astonishing. Of course I knew the improvement was dramatic — Hart and I wouldn’t have started TheraSpecs if it weren’t — but I hadn’t experienced it in so long that I’d forgotten just how big the change is.

So many triggers are impossible to avoid that it’s such a relief to find a way to ward off any of them. With ear plugs and TheraSpecs, I have two of the three major triggers covered… if only I could find something to get rid of smells in stores.

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Exercising Without Triggering a Migraine or Headache

Regular exercise can reduce the frequency and severity of migraine attacks and other types of headaches… unfortunately, it can also trigger them. Finding the balance between enough and too much exertion can be difficult. I’ve tried a variety of ways of getting back in shape without triggering migraines. My current program, Couch-to-5k, is the most successful.

Couch-to-5k (or C25K) uses interval training to move people from being sedentary to able to run a 5k race in eight weeks. Exercising for about 30 minutes three times a week, participants start out walking more than jogging, then inverse the ratio until they can jog for a solid three miles. Even though I’m only walking and have no plan to do a 5k, this program is the most effective way I’ve found to increase the speed and distance of my walks without triggering a migraine.

Following a five-minute warm-up, I spend the next 20 minutes walking at intervals (guided by an app for my phone that tells me when to change speeds), then do a cool-down. Initially, my walking/walking-faster intervals were 2.3 MPH and 2.8 MPH; I’ve worked up to 3.3 MPH and 4 MPH. I now walk almost 2 miles per session in about 35 minutes. That’s my current workout, my goal is to walk at 4 MPH for 3 miles.

The program is intended for three exercise days a week. I’m trying to walk daily, which means I actually do about three times a week. Some weeks I don’t exercise at all and that’s OK, too. That’s life with chronic illness.

Whether you do a couch-to-5k program or your own exercise plan, the key is to increase your exertion v-e-r-y slowly. Say you walk for a mile at 2.5 MPH and you get a migraine or headache — slow down to 2.2 MPH the next time and see how that goes. If that speed is still a problem, slow down even more. When I first started exercising in the spring, I walked at 1.8 MPH, which felt like a crawl. But, even barely exercising was still more exercise than I was getting before and I was building the foundation for increasing the intensity in the future.

People put 26.2 and 13.1 stickers on their cars. I doubt I’ll advertise my 3, though it will be as big of an achievement for me as a healthy person running a marathon. On second thought, I might stick a 3 on my car. Can you imagine the looks on people’s faces when I say proudly that I can walk briskly for 3 miles without triggering a migraine?

Looking for other ways to avoid migraines or headaches while exercising? See these great tips on exercising with headache or migraine from ACHE.

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Rotation Diet for Migraine or Headaches

The cauliflower debacle never really resolved. Even after I stopped eating cauliflower, I began reacting to other “safe” foods I’ve restricted my diet to the last six months. Despair was knocking, so I did what I always do when I need a sense of control — I began to research. Rotation diets were my target.

Rotation diets have come up frequently in my reading on dietary histamine. The idea, as I was introduced to it, is that you don’t eat the same food more than every four days. That’s the preschool version of rotation diets. A true rotation diet involves rotating food “families” every four days. Food families are either botanical families (for fruit, vegetables, grains, oils and herbs) or animal families (fish, bovines, swine, etc.).

The quickest way to understand how this works is this four-day rotation guide (page 7 of the PDF). The belief is that it takes four days for a food to completely clear your system, so that’s why you need to wait. Also, if someone reacts to multiple foods in the same family, they should consider eliminating the whole group (no goosefoot for me). The science behind rotation diets is slim, but I know what’s working for me.

I started it 10 days ago and am thrilled with the progress so far. My migraines are far less frequent and disabling than they’ve been the last couple months (and they’re easy to abort with triptans and/or Midrin). My diet is way more varied than it has been in the last 18 months. I have’t thrown caution to the wind — I reference lists of foods that contain histamine, tyramine and benzoates (the best lists I’ve found are in Dealing with Food Allergies by Janice Joneja). Instead of avoiding those foods completely, I choose carefully which ones I test.

The rotation diet is allowing me to eat foods that were never a regular part of my diet (mangoes, dandelion greens, persimmons, pomegranates). It’s helping me identify more definite migraine triggers (nuts, cabbage, quinoa, beets). I’m also figuring out how frequently I can eat a food and in what quantity without a reaction.

Wondering why I’m so excited about this strict diet? Here’s a recap of the past 18 months: Failsafe; chicken, white rice and oatmeal; feeding tube formula; six to 10 fruit and veg that I ate every single day. I don’t know how many different foods I’m able to eat now — that’s major progress!

Some people are on rotation diets indefinitely. I’m hopeful I’ll be able to figure out what my thresholds are for certain foods and not have to follow the diet rigidly for long. It doesn’t feel like a permanent change to me, more like another part of the diagnostic process. I’m more optimistic about this diet than I have been since I started my current migraine diet journey in January 2012.

Want to learn more? Here are the resources I’ve found most helpful:

I included migraine and headaches in the title because I’m using it for migraine, but I’ve read that it can help with chronic non-migraine headaches as well.

7/17/14: If you have true food allergies, please seek the guidance of a health professional before reintroducing foods in a rotation diet! I only have food intolerances/sensitivities (not allergies) and am not at risk of a life-threatening food reaction.

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Migraine Problems: Haircuts

Thanks to my extreme sensitivity to odors, getting a haircut often triggers a migraine. Here’s how I’ve learned to avoid salon-induced migraine attacks.

1. Avoid salons that do nails. Need I say more?

2. Go to an Aveda salon. While the scent of Aveda’s products is too strong for me to use on my hair, the scents don’t linger in the air of hair salons. Even the hair coloring chemicals don’t bother me (much). I did a sniff test of all the hair salons within a few miles of my house, none of which were Aveda. Most of them had such a strong odor that I didn’t even have to open the door to know it would trigger a migraine. After smelling all those, I decided the extra time to get to an Aveda salon was worth it.

3. Take your own products. Even though I go to Aveda salons (and think their products smell divine), the long-lasting product scents always trigger migraine attacks, so I always bring my own. Some stylists turn up their noses at my homemade products. They’re usually understanding when I explain why, but I recently broke up with a stylist who was snotty about my obviously inferior products.

4. Try to schedule at a time when the other appointments don’t involve hair color. This one can be difficult, but most salons try to accommodate me, especially if I explain the issue.

5. Shower immediately after the appointment. It’s disappointing to wash out a beautifully styled haircut, but my hair and body pick up product odors just from the stylist touching me.

6. Use a neti pot. This is the newest and most ridiculous thing I have to do after a haircut. My current stylist is incredible, but, even though she uses a modest amount, I can’t escape the smell of her perfume. The scent is pleasant and isn’t strong enough to trigger a migraine while I’m at the salon. Still, it stays with me for hours unless I use a neti pot after I shower. Last week, I had to wash my nose out with a washcloth to eradicate the smell! (But I didn’t get a migraine.)

Do you have any tips for migraine-free haircuts? Please share in a comment!