Diet, Meds & Supplements, Mental Health, Treatment

Dietary Outlook Far Brighter After Discovering Supplement-Induced Depression Symptoms

All that gnashing of teeth about my diet? Turns out it was fueled by depression-like symptoms caused by a supplement called 5-MTHF (methyltetrahydrafolate), which I started six weeks ago. Yes, the diet still sucks. It sucks that I continue to feel worse whenever I introduce a new food. And it sucks that I have to choose between malnourishment and having more severe, more frequent migraine attacks. But, since stopping the supplement, I’m no longer reduced to tears thinking about it and I no longer fear I’ll forever be trapped in this dietary mess. Even better, I have hope for the data gathered through this experiment and the possibilities of treatments that are on the horizon.

Depression of any provenance is miserable, but being able to stop the depression symptoms just by not taking a supplement is better than the best gift I’ve ever received. Depression that stops within days of stopping a supplement, no antidepressants or their side effects necessary? That feels like a miraculous recovery.

P.S. I’m working on a post about 5-MTHF and my reaction to it — which is particularly relevant because it is part of the vitamin combination Australian researchers are testing as a treatment for migraineurs with a certain genetic mutation — but I don’t have the mental ability to edit it right now. That’s mostly due the the nasty migraine that struck last night… only a few hours after I finally got a reprieve from a six-day-long migraine. The great news is that despite these migraines, my mood is good and my outlook is positive.

P.P.S. Speaking of fabulous gifts, check out these bear rug coasters Hart gave me for my birthday. Perfect for anyone in need of a smile. It helps to say “splat!” whenever setting a glass down on one.

Chronic Migraine, Coping, Favorites, Friends & Family, Mental Health, Society

True Strength

“Pretending to be happy when you’re in pain is just an example of how strong you are as a person.” A migraine group shared this on Facebook this morning and I’m so upset that I’m shaking. I’m not dissing the group, they’re doing great work and share a lot of helpful information, but I completely disagree with the idea that putting on a happy face is a sign of strength. Having the courage to be vulnerable, showing people how much you’re struggling, being honest about what you’re going through is the truest show of strength.

I’m very experienced at putting on a happy face and pretending like everything’s OK when I’m in massive pain. I did it for years, thinking it was the only way I could survive life with chronic migraine and not be labeled a complainer. Those were the loneliest, scariest, hardest years of my life. This pretending was a five-foot thick wall separating me from everyone in my life — I couldn’t connect with anyone, even my husband, because I wasn’t being honest about the greatest struggle in my life. I wasn’t even honest with myself.

Believing that putting on a happy face would make everything better constantly invalidated my everyday experience. I questioned my own fortitude and perseverance and the severity of my symptoms. I lost my identity, not just to illness, but because I couldn’t see my true self underneath all the pretending I did. I never allowed myself to process the tremendous grief that came with the quality of life I lost due to migraine. I sunk deeper and deeper into depression.

Only by acknowledging the depth and breadth of my illness to myself and others, have I begun to rise out of depression. I didn’t actively choose to show others how sick I was, but became too sick to function without the help of loved ones and too sick to pretend that I was OK. It’s been a slow process and I’m still learning the appropriate level of openness (see Migraine & Empathy for suggestions on how to gauge disclosures). Sometimes I overshare and worry that others will think I’m weak or complaining, but most of the time I’m able to say “I have chronic migraine” as if it were just another demographic fact, like that I grew up in Phoenix or lived in Seattle for six years. I am continually surprised that people do not think I’m weak, but are awed by what I’ve been able to endure and accomplish.

Our culture’s denial of the realities of illness teaches us that pretending you’re happy when you’re in pain is strength, but it’s actually cowardice and fear. True strength comes being your authentic self and acknowledging all the complex, messy intricacies of real life. It’s not easy, especially considering all my years of cultural conditioning and buying into misguided beliefs about illness, but I’m learning that living a rich, authentic life with strong connections to others is far more rewarding that hiding behind masks of artificiality.

Coping, Exercise, Favorites, Mental Health

Making Room for Restorative Activities

Baking. Attending yoga classes. Dancing to live music. Traveling with Hart. These disparate activities have a vital common thread: they restore me. How bad the migraines are, money, time, concert schedules, and even which migraine diet I’m on influence how often I do each thing, but at least one of these activities has to be a constant in my life for me to remain emotionally stable. They’re so crucial that I prioritize them unwittingly. Until this summer.

After I went off antidepressants, I was feeling off-kilter. I kept trying to pinpoint why. Was it because I’d stopped the drugs? Was it the weather? Was I homesick? Missing Hart? Bored? Lonely? Grieving my migraine losses? I finally figured it out this past week when, after returning home from Seattle, I went back to yoga for the first time since April and felt a deep calm that’s been elusive: I’ve barely engaged in any of my restorative activities in months.

How I Got Off-Kilter
In April, my yoga studio moved to a newly remodeled building. Even though they used eco-friendly materials to create the beautiful new space, the outgassing was too overwhelming for this sensitive migraineur. I looked for other studios, but couldn’t find another within a 30-minute drive that had frequent gentle classes.

Part of the reason I love to bake is that I love to eat baked goods. There are no “safe” baked goods on my current diet, so I haven’t been baking much. I still bake for others occasionally, but instead of being a relaxing endeavor, it feels fraught with danger.

Funk, world music, and jam bands are pretty rare occurrences in the Phoenix area. Having a band in town on a night I feel up to dancing and playing early enough it won’t wreck my migraine-dictated sleep schedule is even rarer. Hart and I have traveled to shows and festivals in the past, but that’s on hold while we’re launching TheraSpecs.

In fact, all travel is on hold while we’re living on an entrepreneur’s shoestring budget and dedicating all our time to TheraSpecs. Hart did spend a great week with me in Seattle, which was our first vacation in a couple years. Yay for frequent flier miles and friends who let us stay at their houses!

Prioritizing Rejuvenation
When I was desperately ill, I managed to work at least one of my necessary activities into my life. Now that I’m feeling better and more functional in years, I let them slide. This seemed ironic at first, though it makes sense upon further reflection — I’m no longer constantly craving rejuvenation. But, whether I’m aware of it or not, I still desperately need it. In fact, it may be even more important now that I no longer focus all my energy and attention on taking care of myself.

Unless tickets for this weekend’s Phish shows in Colorado fall out of the sky, yoga will be my revitalizer for the foreseeable future. I’m hoping to rejuvenate and get back into shape. Thankfully, the yoga studio has aired out enough to no longer be a migraine trigger.

What About You?
What activities restore you? Does your headache disorder interfere with them? Do you have to make time for them or do you do so without even realizing it?

Community, Coping, Mental Health

Suicide & Migraine: Thoughts From Someone Who’s Considered It

Another migraineur has taken her life. I have few details, but those I do have paint a heartbreakingly common picture: She wasn’t taken seriously by doctors and did not receive proper care despite being in massive pain. She’s the second person I know of who has taken her life because of migraine in the last two months. I have to wonder how many others have done the same, but their deaths haven’t made the migraine news circuit.

I could rail against the medical system that knows so little about migraine, the lack of funding for research into this disabling condition, the majority of society who thinks we’re faking migraines to get out of making dinner, the stigma of migraine, people who can’t open their minds enough to even consider migraine as a debilitating illness….

There are plenty of reasons to be angry, but right now I’m just sad. Sad for all the people who are so desperate in their struggle with chronic migraine to consider or attempt taking their lives. It is such a lonely, terrifying emotional place to be. I know because I’ve been there myself.

There are a few things I want everyone with chronic migraine to know:

You are not alone. Connect with migraineurs on a forum like Migrainepage.com or the one on Migraine.com. Forums are the best place to find people who who understand the toll of chronic migraine and can help you cope with it. Talking with people who understood this lonely and stigmatized illness helped me through my worst days.

There’s always hope, hope for better health and hope for learning to live well despite chronic illness. I tried more than 36 preventives before finally finding some effective ones. I still have migraine attacks most days, but the pain is so mild that it feels like an entirely different illness. I am not “cured,” but I am grateful for every single day. Mindfulness techniques were a tremendous help in coping while I was still mired in daily pain of level 7 and higher. Start with How to Be Sickby Toni Bernhard; if you want more, see my recommendations in Migraine & Mindfulness on Migraine.com.

If you aren’t getting adequate treatment or feel like your doctors are dismissive, see a headache specialist. General neurologists get mere hours of training in headache medicine; you have the best chance of finding someone who truly understands migraine and its impact by seeing a headache specialist. Find specialists on the Migraine Research Foundation’s list of doctors certified in headache medicine, the National Headache Foundation’s physician finder, or the American Council for Headache Education’s provider search.

A therapist is a necessary health care provider. Chronic illness is a drag and migraine has its own infuriating stigma. This is a hard life to live and no one should have to navigate it on their own, nor should any romantic relationship or friendship have to bear the weight of it alone. Ask your doctors for recommendations, ask for suggestions on forums, or check Psychology Today’s therapist finder.

If you are considering suicide, contact the National Suicide Prevention Lifeline at (800) 273-8255. Trained staff will receive your call and help you sort out what’s going on. Even if you’re not at immediate risk of suicide, they will help you create a safety plan to keep you safe in case you ever reach that point.

Hang in there. The bad spell will not last forever. It may not feel like it right now, but you will get a break.

I fear that advice is oozing cliches, but each one is abundantly true. Keep in mind they’re coming from someone has had such severe, unrelenting chronic migraine that death has sometimes seemed a better alternative. Someone who is thrilled to be alive and experiencing what every day has to bring, both good and bad, after finally finding helpful preventive medications.

As my husband once told me, life with chronic migraine is way harder than any life should be, but that doesn’t mean it’s not worth living.

Books & Products, Chronic Migraine, Coping, Mental Health

Identity & Strengths Finder 2.0

After writing about the loss of identity that I experienced with chronic illness, I wanted to give some suggestions for rediscovering one’s sense of self. Most of the recommendations are time-intensive and arduous — like finding a good therapist, practicing mindfulness, and learning about Buddhist psychology — but there’s one little gem that brought me rewards far greater than it’s $15 price tag.

It’s called Strengths Finder 2.0and is marketed as career guidance, but that’s beside the point. It’s a book, but it’s mostly a personality quiz that you access online using a code in the book. As the title indicates, the quiz results focus on a person’s unique strengths, something that I had trouble doing after years of migraine and depression. Instead of reminding me of the weaknesses I’d spent years dwelling on, the quiz refocused my attention on my strengths, which was invaluable in regaining a sense of my true self.

I took the Strengths Finder quiz two years ago, when I was too sick to put the findings into any practical use. I still haven’t applied them directly to my percolating career goals, but I have benefited enormously from the reminder of my core characteristics, which remain untouched by chronic migraine. The peace of mind of remembering who I am was well worth $15.