Category: Coping

Coping, Triggers

When Self-Care isn’t Enough

Kerrie Smyres

“I’m doing everything I normally do for self-care and it still isn’t enough.” I’ve said some variation of this countless times in the last month.

My self-care game is normally really good. Through much trial and error, I’ve figured out what works for me and typically prioritize self-care. Even in this wretched year, I’ve managed to do both the self-care that requires effort (like daily walks, regular workouts, and a healthy diet—as long as migraine doesn’t interfere) and the smaller things that I can incorporate into everyday life. That kept me on a relatively even keel. Until about a month ago.

With the election and its aftermath and the surge in COVID cases, I’ve been a bundle of stress. Despite continuing all my self-care activities, it didn’t feel like enough. In fact, sometimes the self-care itself was stressful.

When I told my therapist that all I was doing wasn’t enough and that my self-care was adding stress, she steered me toward radical acceptance. That is, accepting what is for what it is. No matter how distressing it is, no matter how much I want things to be different, to remind myself that what is happening is happening and all the angsting in the world can’t change it. It’s such a simple concept and an incredibly difficult task.

Thinking about human behavior and puzzling through why people do the things they do is a fundamental part of who I am. And it has been working against me. Trying to understand people’s rationalizations and lack of critical thinking when it comes to politics and COVID hasn’t helped me understand the world in a constructive way. Instead, it has broken my heart.

So I’m practicing setting aside a part of what makes me who I am. Just for a while. Because I can’t radically accept what is happening if my mind is in a constant knot, trying to figure out why people are making decisions that I cannot fathom. And trying to fathom those decisions? I’m also working on not doing that.

Acceptance has been critical for me to cope with chronic migraine. And I’ve learned to apply it to many other situations in my life. But I hadn’t thought to apply it to 2020 even though it has the hallmarks of a situation where acceptance is essential—major, life-changing problems that I have almost no control over. (Note the “almost” in the previous sentence. Despite accepting that I have migraine, I never stopped trying to find relief. The same is true for social and political problems. Acceptance and working toward change can coexist.)

In the 10 days since I began working on radical acceptance of the current state of America, I’m doing better. My stress is lower, my angst is less, and even my migraine attacks are more typical. I’m still angry and sad, but I’m not overwhelmed. Right now, that feels like a win.

Coping

How are you holding up?

Kerrie Smyres

We’re six-ish months into everyday life during a pandemic, racial tension is boiling over, and we’re in the midst of a horrible election cycle. It’s an understatement to say that life is hard right now. I’ve heard from countless people with headache disorders and other chronic illnesses who are experiencing an increase in symptoms. Depression is creeping up for many. Even my healthy loved ones are feeling frayed.

I found myself thinking of you all as I listened to Brené Brown’s latest podcast episode, On My Mind: RBG, Surge Capacity, and Play as an Energy Source. She talked about the frustration and despair that’s rampant right now. She referenced an article I read last month and found really helpful for understanding my current stressors, Your ‘Surge Capacity’ Is Depleted — It’s Why You Feel Awful. In addition to explaining the “why,” which I always love, the article has good coping tips.

So how are you doing? How do you feel physically? Emotionally? What coping skills are you using to get through this difficult time? I understand if you don’t want to share in the comments (though you can post anonymously), but you’re welcome to send me an email if you’d like to catch me up.

If you’re curious, I’m doing OK. I’m heartbroken by the number of people who have died because of how the country is handling COVID. I’m disheartened and worried about race relations in the US (while at the same time have some hope for change). I’m anxious about the election and sad about Ruth Bader Ginsburg’s death. And yet, I’m holding up fairly well. Here are the high points:

  • The isolation is surprisingly fine for me. I think that’s because I’ve been housebound before, so I’ve already developed coping skills to manage it. Also, last time I believed it would never end, while this time I think it will.
  • When the weather and migraine attacks allow, I’m getting outside for walks. That’s a huge benefit to my mental health.
  • While my migraine attacks are worse than they’ve been for a few years, I think they’re improving now that monsoon season is over.
  • My husband is my favorite person to spend time with and we’re having fun at home together. We’re able to be in separate spaces during the day, so I don’t even have to listen to him on Zoom at work (which would definitely stress me out).
  • My mom and I are working on an oral history project. We’re having great conversations every week and I’m learning a lot about her and our family.
  • I have regular video chat dates with friends to do puzzles (not puzzles with pieces—more like logic puzzles). I love both the people and the activity.
  • I’m doing more advocacy work and getting excited about writing again. It feels great!

Coping

Being stressed over migraine is a migraine trigger

Kerrie Smyres

I never used to think of stress as a migraine trigger for me, but I’ve discovered in the last few years that my migraine frequency does increase in times of extreme stress. Unsurprisingly, right now qualifies as highly stressful and migraine kicked my butt for weeks this spring.

I tried all my usual tactics—I made sure my sleep and diet were in good shape, stopped reading the news, made exercise a priority, and committed to lots of relaxation. Nothing made a dent in my attacks. They got so bad that I had to take a leave of absence from TheraSpecs and stopped my advocacy work. Still no change.

After three weeks of frustration, I had an epiphany—maybe the stress of the increased migraine attacks was itself triggering more migraine attacks. While I had pulled out all the self-care stops, I had continued to obsess over my triggers and be frustrated every time an attack landed me on the couch for the day.

So all I had to do was stop being stressed! Aiming for that goal is usually a recipe for increasing my stress levels, but this time I managed to let go. I decided to drop all the worry and, for some reason, it actually worked. By the next day, I started to feel better. Within two days, I could definitively say that my attacks we less frequent and less severe, plus I felt better between attacks than I had in months.

I asked psychologist Dawn Buse, PhD, for her thoughts on the stress of migraine as a migraine trigger. She pointed out that it’s impossible to tease out which came first, the chicken or the egg, and explained more about the relationship between stress and migraine. She said:

“The relationship between stress and migraine has many different forms which can change from person to person, and over time and life phases for an individual. Stressful events or periods can contribute to triggering an attack. This can occur during a period of high stress or after the stress level has reduced, which is called the “let-down” effect. Long periods of stress (such as a personally difficult time or the global pandemic) can be associated with increased frequency of attacks. And some stressors such as childhood maltreatment are associated with the onset of migraine disease. Conversely, stress is also a consequence of living with migraine. Migraine can have significant negative impact on all important aspects of life and negatively impact relationships, careers, finances, academics, family, friendships and fun, just to name a few areas-—which can be very stressful.”

Dr. Buse also gave some information on managing stress, which I’ll include in an upcoming Migraine.com article on this same topic. Most notably, she shared a quote from Jon Kabat-Zinn that spoke to my recent experience: “You can’t stop the waves, but you can learn to surf.” My attempt to stop the waves was not only ineffective, it made me feel like I was drowning. When I attempted to surf, my migraine attacks improved within a day.

I’ve been trying to surf for a couple weeks now and am doing well enough that I’ve spent this week on advocacy work and will head back to (remote work at) TheraSpecs next week. I’m nervous, but excited to get back to a life beyond my own health.

I’ve been thinking of you all and hope you’re doing as well as possible. Life is so weird right now.

hand reaching up through surf
Photo by Nikko Macaspac via Unsplash
Coping

Hello There!

Kerrie Smyres

I’ve written countless variations of this post over the last three years, each time deciding to wait to publish it since I’m on the verge of a breakthrough with my health. And each time there’s a new permutation that slows me down. I’m finally ready to share.

For most of the last three years, I’ve been dealing with mysterious health issues that aren’t migraine-related (in fact, I’ve been doing pretty well migraine-wise thanks to the gammaCore). Brain fog, fatigue, joint pain, vertigo, tachycardia, and muscle pain, stiffness, and twitching have been the main symptoms. The symptoms come and go with one or two usually taking the spotlight at a time. I’ve seen a rheumatologist, several neurologists, three cardiologists, done lots of physical therapy, and had plenty of tests. I’ve been misdiagnosed with several conditions, none of which really seemed to fit what I was experiencing. And I’ve been terrified that I was in the early stages of a degenerative neuromuscular condition.

The Gist

I can say with 98% confidence that, ultimately, all the problems can come down to either side effects of supplements or vitamin deficiencies, some of which were caused by an excess of a particular supplement. The two main players have been a vitamin B12 deficiency and excess magnesium, though there have been other factors. I think I’ve found a balance. If you’re curious, the details are below.

Vitamin B12 Deficiency

The B12 deficiency is easiest to explain, so let’s get it out of the way. I became a vegetarian as soon as I went off the ketogenic diet and wasn’t diligent about getting enough B12. After a bout of severe vertigo—during which I spent the majority of three weeks in bed—and being misdiagnosed with Sjogren’s syndrome, I began supplementing B12 in earnest. It went great at first. My symptoms decreased fairly quickly after starting the supplement—the joint pain and vertigo were gone and the muscle symptoms improved, but didn’t go away completely.

Since I still wasn’t getting enough B12 in my diet, I kept supplementing it. Then the supplement became a migraine trigger. So I tried in earnest to eat more foods containing B12, which also became migraine triggers. And both the supplements and foods also seemed to cause my heart to race. It took months to sort out, but I eventually found that an occasional B12 injection did the trick for getting enough B12. After a while, I was able to eat it again without it being a migraine trigger. But the tachycardia remained.

Excess Magnesium

All the while, I continued taking magnesium at high doses, which I’ve done since 2011. I didn’t need it for most of my daily migraine management (the gammaCore took care of that), but it seemed to help with weather-triggered migraine attacks and I was hopeful it could help with some of my muscle-related symptoms. I was taking 840 mg a day. I’d been as high as 1,200 mg, so I didn’t think much of it. Until two months ago when I finally put all the pieces together and realized that magnesium was likely the cause of many of my remaining symptoms.

One of the unexpected benefits of the gammaCore is that I no longer needed medications I’d used for years, like Wellbutrin and cyproheptadine. I figured that out after they started causing side effects. It took literally years to consider that magnesium could also be causing side effects. Stopping the magnesium was another step toward resolving my symptoms (most notably the tachycardia, which was such a relief), but there was more work to be done.

Calcium and Potassium Deficiencies

My doctor said that the excessive magnesium may have caused an electrolyte imbalance that resulted in calcium and potassium deficiencies. Supplements often trigger migraine attacks for me, so sorting out that out has been a challenge. I’m getting close—I’ve found a calcium supplement I can tolerate and am working to get the right amount of potassium in my diet.

Vitamin D and Protein Deficiencies

But wait! I let a couple other things get out of whack. Always afraid of triggering a migraine attack, I haven’t taken my vitamin D diligently. I’ll take it for a while, get a blood test and see that it’s at a good level, then forget to take it until I get a new round of symptoms. Lather, rinse, repeat. I literally cannot remember how many times I’ve gone through that rigmarole in the last three years.

And that vegetarian thing? I really thought I was getting enough protein. I’d calculated the amount I needed when I was on the ketogenic diet and was mostly keeping up with it. Except I weighed 25 pounds less then and was sedentary. Between my long walks each day and the strength training I now do three times a week, I’m now considered quite active, which requires a lot more protein than I was getting.

Then There’s the Life Stuff

In addition to managing my fluctuating health, the last three years have been fairly stressful. I watched a loved one die of ALS and nearly lost another to suicide. I saw the end of a friendship with someone I once considered one of my essential people. And Hart and I have been trying to figure out what our life looks like without migraine horning in on our marriage all the time—it’s a good stress, but something to figure out nonetheless. On top of all that, I’ve worked nearly full time at TheraSpecs for much of the last year. Again, that’s a good stressor, but it’s taken too much time away from the health and self-care practices my body requires to stay healthy.

Where My Health is Now

I’m doing a lot better physically. I still have to get some dietary details sorted out and need to wait a while to be sure my symptoms don’t come back, but I think I’m basically on top of the problem. I’ll see another neuromuscular specialist next month to be sure my symptoms are really due to vitamin and nutrient issues rather than an underlying condition. But I feel like I’ve basically got it under control.

My Mental Space

I flirted with the idea of getting angry with myself for letting basic vitamins and minerals get out of whack and for taking so long to realize that the magnesium was a problem. That’s ridiculous. I’ve been working just as hard at sorting out these mysteries as I did at finding effective migraine treatment over the years. I’ve been to doctors and talked to my therapist/naturopath countless times. I’ve been trying so hard and yet I missed some things. I didn’t fall down on the job; I had a surprisingly complicated situation to figure out.

It’s been tough to have these weird symptoms at the same time as I’ve been feeling better migraine-wise. I’ve spent much time worried that I went from being disabled by migraine to either having another disabling disease or, worse, a horrible disease that would kill me prematurely with much suffering along the way. I’ve managed these emotions as they come and they haven’t been too frequent, but they’re terrifying when they do come.

But right now I’m in a good space mentally with my health and the other life stressors I’ve juggled in recent years.

What’s Next

I can’t predict what’s next, but I know what’s now and what I hope for in the near future. I’ve cut my hours at TheraSpecs back to 20 hours a week to allow more time for managing my health and, I hope, doing more writing and advocacy work. I’ve been making time for regular exercise and now need to get on top of healthful eating again (my diet isn’t terrible, but it’s not as vegetable-forward as I’d like to it be). I’m aiming for at least one post for The Daily Headche and one article or video for Migraine.com each month this year. So I hope to be around more often in the coming months!

P.S. My latest article for Migraine.com is Green Light Therapy for Migraine. The NPR story on green light therapy that circulated in December left me with more questions than it answered, so I interviewed the lead researcher to get a better grasp on the research.

Chronic Migraine, Coping, Treatment, Triggers

Brain Fog, Uncertainty, Excitement, Beauty, and Hope

Kerrie Smyres

brain-fog-gc-minI’ve spend the last six months traveling in the land of brain fog. It’s a weird level of brain fog. I putter around the house as if I’m thinking just fine, then I sit down to write and my IQ plummets. Although my inability to string sentences together has kept me quiet, I’m actually doing remarkably well. My new treatment is working way better than I could have imagined and I’ve determined that the cognitive dysfunction is almost certainly a side effect from a drug I’ve been able to stop taking.

About My New Migraine Treatment

I’ve been using my new treatment since June 23. (I have to keep it a secret just a little longer. I’m told I’ll be able to tell you about it any day and am so excited that you’ll be the first to know when I can. Know that I’m not holding out on something that could help you now—It’s not yet available, but should be very soon.) The first months were full of heartbreaking lows and exhilarating highs, then my migraine symptoms seemed to settle into a slow and steady improvement. After quitting the ketogenic diet six weeks ago, my improvement became astonishingly swift. I can now eat anything I want. (I have to repeat that: I can now eat anything I want!). I still get a migraine attack every time I eat, but the symptoms are barely noticeable when the treatment works.

When the treatment works… that sounds ominous, but it’s really just part of the ongoing adjustment. Balancing the variables of which foods and how many calories I eat with calibrating the treatment just right is a challenge, especially because I keep trying new foods. When the dose is too low, the treatment dampens the migraine attack without fully aborting it. At too high of a dose, I feel great for an hour or two before a rebound migraine attack hits. However, When Goldilocks is satisfied, I’m high with feeling like myself again.

While these variations are tedious and make my day-to-day symptoms unpredictable, the overall effect is wonderful. You see, the treatment is making me less sensitive to food triggers over time. Once I find the right dose for a particular meal, the treatment works perfectly a handful of times. Then the dose becomes too high for that meal and I have rebound attacks. Then I have to guess at how much to reduce the dose and start the process over. (I’m talking in food triggers because that’s my issue, but the treatment can work for other types of triggers, too.)

On Brain Fog

Given the overall success with the new treatment, the persistent brain fog was frustrating. After dealing with it for months, other symptoms starting creeping up, like increased anxiety and ringing in my ears. When dizziness become another frequent companion, I had an epiphany: Wellbutrin has been the source of all the debilitating bouts of dizziness in my life. My new treatment is also used for depression… perhaps in addition to helping my migraine attacks, it was reducing my depression and making me overly sensitive to Wellbutrin’s side effects. I reduced my dose from 450 mg to 300 mg in January and the brain fog, dizziness, anxiety, and tinnitus reduced. Two weeks later, the symptoms began to resurface, so I reduced the dose again. And again. I’ve been completely off Wellbutrin for a week, the brain fog seems to be receding, and the other related symptoms have abated.

What’s Next? Uncertainty Reduction at the Grand Canyon

As I wrestled with my life’s current excitement and uncertainty combined with a loss of innocence brought on by politics and a family health situation, I imagined myself standing on the edge of a canyon. The phrase “precipice of grief” popped to mind immediately, but it’s message was was muddied by the image of a beautiful canyon. The meaning was unmistakable. Life is scary and full of grief. It is also unbelievably precious and beautiful. To root this belief in my heart and body, I’m going to stand on the glass bridge at the Grand Canyon. The thought terrifies me, but I expect seeing the beauty and confronting my fear will make me stronger than before. (At least I hope so, otherwise my metaphor will fall apart!)

After a busy few weeks of doing the Miles for Migraine race in Phoenix (please join me if you’re in town!), attending a conference at the Mayo Clinic and another for Health Union advocates (that’s the company behind Migraine.com), having my family visit, and recording for the migraine video series I mentioned last week, it’s time to think about the future. What matters most to me right now? Where will I be writing and how much? What roles will I play at TheraSpecs? How will I build my local community now that I’m able to be more active in the world? How else do I want to spend my time? I’m not sure what answers I’ll find, but I’ll let you in on the exploration.