Welcoming a New Year

Here we are at the end of another year and, boy, was 2017 rough. I don’t want to rehash it in specifics, but I left my job, moved from Boston back to my rural hometown, and had to establish care with all new doctors. There were a lot of bumps and 2018 could – no, will – bring more, but I feel more ready than I did a twelve months ago.

Plus, I like even numbered years. Is that weird? Something about a nice, round, even year makes me feel like it is going to be good to me. So with that in mind, I’m thinking about what 2018 will look like. I’m not calling these resolutions, just things that will happen.

  1. Try new treatments: I see my migraine specialist in three days, so I’m really starting out the year with a fresh take on my treatment plan… hopefully. I say ‘hopefully’ because at my last appointment, it felt like she was giving up on me. I’m not ready to give up by a long shot, though. I just need her to be a better collaborator, because I have a lot of ideas.

First, I want to tweak my preventive meds a bit. For the time being, I’m reliant on medications designed for other diseases like high blood pressure, depression and anxiety, and epilepsy. I’ve tried medications in each of those categories, but I haven’t tried all of them in every combination. At my last appointment, my doctor didn’t think it was worth trying any others since I’d already failed the “best” option in each category, but I’m thinking, “What is there to lose?”

I’m also going to make sure we even have my diagnosis right. This is based on the pattern – and evolution – of my ‘migraine’ symptoms. So we’ll see where that leads. My main obstacle will be that my doctor has been reluctant to collaborate or even acknowledge that I have valid suggestions about my treatment. She’s my only option, so I need to find a way to work with her this year.

My biggest hope for 2018 is that the new class of drugs, the first designed specifically for migraine in many years, will gain FDA approval. The clinical trials for these drugs, called CGRP antibodies or anti-CGRPs, have shown them to be more effective than placebos at reducing the number of migraine days for both episodic and chronic migraine patients (for example, some phase 3 results). So far, there have been few side effects. I’m keeping my expectations in check. There will be hurdles to clear, like ensuring that these drugs are priced fairly and that insurance companies will cover them for the neediest patients (like me). But needless to say, I’m still hoping to have a chance to try them soon.

There are other little things (or not so little) things I’m also resolving to be better about: (1) drink my water, (2) exercise at least a little even on bad days, (3) test more foods and rule out triggers so that that I can bring more enjoyment back to eating, and (4) work with what will likely be a new insurance company to get my sleep apnea mouth guard covered (ugh, deductibles).

  1. Do more. Be more resilient. This leads me to the idea of making my world a little larger. I’ve been struggling with this notion of how to be more active, more resilient, more like other chronic migraine patients I see “doing more” or “living more.” One thing I realized that they possible realized sooner is that once our attacks fall into a kind of pattern, we’re going to be in pain whether we do activities or not, so we might as well do more. My world has gotten pretty small in the last two years. My goal in 2018 is to – as my new therapist would say – start to push out the boundaries a bit more. I’m going to have to put myself out there. Maybe doing more will make my symptoms worse. Maybe it will be a trade-off I’m willing to make. Maybe it won’t. I won’t know until I do it.

Recently, I saw a blog post that listed some social activities we could suggest to friends if going out for drinks or dancing just isn’t in the cards. Truth be told, I haven’t had a drop of alcohol in almost two years and can’t remember the last time I went out at night. My pain often increases as the day goes on and my special diet means it is really hard to eat at restaurants. Anyway, this post suggested things like crafting, running errands, or trying out a new recipe together. So I’m hoping to find a way to connect with more people in 2018, doing some activities that my sensitive brain can handle.

The reality is, though, I don’t get a lot of invitations. I don’t make a lot either. My symptoms are unpredictable and many times, I have to cancel. When that happens, it feels like I have wasted my friend’s time. I expect them to be upset with me. I haven’t even given people a chance to understand, though. I’m just assuming they won’t. I’m not sure why I think so little of my friends. I know I’m not giving them enough credit. I’ll put myself out there more this year and see what happens.

  1. Become an advocate: I’m still unable to hold a regular job. I just can’t be a reliable employee anymore. However, as my migraine attacks have settled into a pattern, I’ve come to have a certain amount of acceptance toward my situation. This has freed up some energy to think about other things I might be able to do with my “good” days. One thing I’ve noticed is that migraine patients can easily fall through the cracks. This is in large part because of the stigma that migraine is ‘just a headache,’ that it is a woman’s disease, and it’s all in our heads. We should just be able to get over it.

I left my job with a well-respected research center only six months after earning my PhD. I’m not saying this to brag, I’m saying it because it underscores why I feel like migraine has taken so much from me. I’m not the only one. Migraine is the sixth most disabling condition worldwide and has a major economic impact because of its tendency to strike during a person’s most productive years.1

I want to use my “good” days and my research training to be an advocate for other migraine patients: those who don’t have time to fight, those like me, and, especially, those who are even worse off. I had hoped to be a representative at Headache on the Hill, but that didn’t work out. Instead I may have the opportunity to help with the inaugural Miles for Migraines Burlington (VT) race/walk. I’m excited that there will be an event just two hours from my hometown! I also plan to reach out to a few organizations and see if I can help with any survey work or data analysis needs they might have.

  1. Grow my blog. In the meantime, I’ll continue to blog. I’ll aim to write more often. I’ll also aim to not be so wordy. (Thanks to any of you who regularly read through my long posts!) I still haven’t shared my blog widely. I’ve relied on my Twitter following and WordPress to spread my content (feel free to retweet). Maybe this year I’ll be brave enough to post it more widely.

 I honestly feel lucky to have the skills I have. I may not be the most eloquent writer, but I feel like I’m doing a good job as a patient staying abreast of the current research in migraine and headache medicine. If I can do more to spread that information to migraine patients who otherwise wouldn’t see it, then I’ll feel I’ve made a difference.

If I can make tweaks to my treatment plan that lower my average baseline pain and improve my symptoms, if I can make my world a little larger with the help of friends, and if I can use what I learn to be an advocate for those of us most affected by migraine, then I’ll call 2018 a success.

1 http://migraineresearchfoundation.org/about-migraine/migraine-facts/

Food: Triggers or Triggered?

It is hard not to mourn the life I had before chronic migraine. There are so many things that I miss: my career, going on outings with family or friends, traveling, and food.

Food. Oh, how I miss food. What I wouldn’t trade for a day of uninhibited gorging on everything I’ve been craving lately. I’m on a pretty strict migraine diet. Before the migraine diet I had started a diet to manage my irritable bowel syndrome. Now I try to balance both, leaving little variety in my diet. I can pretty quickly tell when I’ve eaten something that upsets my GI system. It’s a lot more complicated with migraine attacks. The dietary restrictions never seemed to lessen my attacks; so I still have daily pain. That makes it hard to tell if food is the source of any given attack. Sometimes I have a spike in pain and wonder, “what did I eat?” But part of me also wonders if I’m being too hard on myself, blaming myself because I want the attacks to be due to something controllable. Or maybe I’m creating the attacks from just being anxious about food. Maybe if I could just put mind over matter, I could eat like I used to. I mean, nuts, cheddar cheese, and yogurt didn’t used to be trigger. It must all be in my head!!

But I’ve soldiered on with both diets. There’s the everyday struggle. A friend comes to town – you want to go out for lunch. You visit friends or family – you don’t want to be a bother with special requests. Trips to the grocery store become torture, literal torture. I look longingly at all the foods I used to buy and think of the recipes I no longer make.

It is especially hard to follow my special diet around holidays. I have such strong associations between holidays and food; sharing a meal together with the chance to catch up, laugh, and reminisce. Going out to dinner on my birthday or picking my cake. Having Memorial Day and Fourth of July bar-b-ques. The Thanksgiving turkey and Christmas roast. Plus, all the desserts. Oh, the desserts! There is the fun of picking a special recipe or making something together with a loved one. For as long as I can remember, I’ve helped my mom make her famous buttermilk donuts at Christmastime. We keep some, share some, but the process is a chance to bond.

I’ll be honest. It is hard to be at a gathering and watch others eat without second thought to whether an ingredient will trigger pain or other symptoms. I dream of compiling a list of all the foods I miss the most and binging them on one day. (A then probably ending up in the ER.) In the meantime, I’ll continue to be careful about what I eat and find reasonably satisfying substitutes for some of the things I miss. For tomorrow’s Christmas feast, since I eat only fresh meats, I have a piece of beef to roast from family friends’ farm. We’ve picked out some “safe” veggie sides that everyone can have. I’m (hopefully) making a gluten-free apple tart later today.  The one thing I want to try, but haven’t eaten in months, is shrimp. We always start our meal with shrimp cocktail, but I’ll have to see how I’m feeling…..

Sigh, someday I hope my trigger threshold will be high enough that I can eat like I used to.

Wishing you all a Merry Christmas. If you can, eat all the things for me!