Category: Symptoms

Coping, Symptoms

Mindfulness for Managing Non-Pain Symptoms

Kerrie Smyres

This is the fifth post in a series exploring the topics covered in the book You Are Not Your Pain [Amazon affiliate link]. See You Are Not Your Pain: An Introduction to learn more.

You Are Not Your Pain is, unsurprisingly, focused on pain. But the concepts in the book, which are those of mindfulness-based stress reduction, can apply to all sorts of physical symptoms (and to life well beyond illness). In the book, Vidyamala Burch mentioned that she uses mindfulness to reduce fatigue. While I employ mindfulness for managing pain—and in all other aspects of my life—I had never tried to experience fatigue mindfully. I was so intrigued that I asked Vidyamala to explain. 

Kerrie Smyres: I saw in an interview that you used to have severe fatigue. Did your fatigue decrease as part of your mindfulness practice?

Vidyamala Burch: Yes my fatigue has massively decreased over the years in which I have practised mindfulness and compassion. Really to a remarkable degree. I now have a lot of energy, in fact more than a lot of my able bodied friends! This is partly because of what I have learned about myself through meditation and awareness. There is so much less inner conflict. Also, I have learned to manage my energy in daily life much better through pacing myself. I used to go at things hammer and tongs and then have a big flare up, but I am now more balanced in my approach. I use the slogan “take a break BEFORE you need it” rather than keeping going at an activity until I am completely shattered. That’s made a big difference.

Coping, Symptoms

Migraine Mood Changes: Depression-Like Symptoms

Kerrie Smyres

migraine-mood-changesI was standing in the bedroom alone with my eyes closed, taking deep breaths. I didn’t know Hart had entered the room until he asked, “What’s up?” “I’m nervous about you leaving,” I said, and the tears I’d been keeping at bay burst forth.

Even though I don’t have an anxiety disorder, I have subclinical levels of anxiety in two situations: sleeping when I’m home alone all night and when Hart travels long distances. The Fourth of July brought both of those. During a migraine attack. It led to one of a handful of full-blown panic attacks I’ve ever experienced. It was horrible, but made a lot of sense in retrospect. For the few weeks prior to that night, migraine attacks were going straight for my mood.

I first noticed it during a migraine attack on Father’s Day. I had to stop looking at Facebook posts because they made me miss my dad too much. This isn’t abnormal in the realm of grief, but I also cried when I realized that the attack would keep Hart and me from enjoying our day’s plans. Even that’s an understandable reaction to the situation. Becoming racked with guilt when the precarious stack I’d built in the freezer caused Hart to drop a container is not normal. Instability in the freezer is a common occurrence in our household and it’s usually my fault. The container didn’t break and Hart wasn’t upset, but I felt like an utter failure. These are all indications of depression, but my mood returned to normal with that particularly intense migraine attack cleared.

Migraine attacks bring major mood changes for me maybe a dozen times a year. The experience is unpleasant and unpredictable, but never enduring. Until this summer. During many, but not all, of my migraine attacks over a three-week period, I cried at song lyrics that wouldn’t normally make me cry and was quick to anger in low-stakes situations, like not being able to find the pen I wanted to use. These are telltale symptoms of clinical depression for me. So much so that my doctor wanted me to start another antidepressant.

I held off on the meds for a week because it just didn’t feel right. It didn’t follow the pattern for depression. Then again, it didn’t follow the pattern for migraine mood changes, either. Still, I watched and waited. By the time that week was up, mood disturbances were no longer regularly part of my migraine attacks.

Migraine symptoms are so weird. (I swear I say that at least once a month.) They’re both predictable and unpredictable. I expect to have associated mood changes occasionally, but this is the first time I can recall three weeks during which many attacks were accompanied by depression-like symptoms. I’m wondering if the uptick was caused by a short-term change in my brain similar to what my doctor described when I suddenly became sensitive to Wellbutrin’s side effects:

The brain you have after a migraine attacks is not the same brain as you had before it. Any medication that acts on the central nervous system, like antidepressants, could interact with this new brain in a different way than before, causing an increase in side effects. My dose hadn’t changed, my brain had.

The changes to your brain after an attack are not permanent, so please don’t let this scare you. It’s more like a storm with high winds came through and there’s still dirt and debris in the street. The street sweeper will get to it eventually, but it may take some time.

This explanation makes intuitive sense. The Father’s Day migraine attack that kicked all this off was particularly intense and odd. My thinking was way off. Despite being drug-free, I was thinking as if I’d smoked marijuana. That’s never happened in quite this same way before. Perhaps the celery that triggered the attack was genetically modified to have a psychedelic effect.

Whatever the explanation, the problem seems to have subsided for now. My mood has been stable for about a month. I’m grateful for the increased empathy that came from my tiny glimpse of insight into what panic attacks can be like. And I will be grateful if I never have to experience one again.

 

(In case you’re curious, the grief I’ve been wrestling with this summer has been entirely independent of migraine attacks and migraine mood changes.)

Chronic Migraine, Symptoms, Treatment, Triggers

“Congratulations,” a Dietary Wake-Up Call

Kerrie Smyres

“Congratulations.” Of all the responses I anticipated before publishing An Almost Normal Life Thanks to an Extremely Unhealthful “Diet,” being applauded never occurred to me. When that congratulatory email arrived in my inbox, I was floored. Having had a prior email correspondence with the sender, I knew they were coming from a place of desperation. To them, any sort of improvement, even at the cost of malnutrition, was a tremendous gain. To me, it was reminiscent of people who made jealous remarks about my weight loss when I was gaunt from such severe nausea that I could barely eat. In both cases, the outcome—whether fewer migraines or (unwanted, unnecessary) weight loss—the price is too high.

Serendipitously, I saw my therapist/naturopath the afternoon I received that congratulatory message. She listened as I expressed my dismay that my malnutrition could be a reason to celebrate. She let me rant about how frustrating it is to track down food triggers when Every. Single. Thing. I eat seems to be a trigger. She handed me tissues when I cried about how much I miss food, baking and cooking, and sharing meals with my loved ones. She recommended a bunch of lab tests to check the nutrient levels in my blood. She got the ball rolling on metabolic testing. She explained the hormonal impact of starving my body.

Starving. That was the first time anyone had spoken that word aloud. I’m getting enough calories, so I’m not technically starving, but I’m getting about as much nutrition as I would drinking soda all day. I am starving myself nutritionally so I can pretend to live an almost normal life. The body needs high-quality fuel to run efficiently, and I’ve been running on fumes for months. It’s no wonder I’m in a constant brain fog and my limbs are so heavy it feels like my bones have been replaced with sandbags.

“Congratulations” was intended as a show of support and, in a roundabout way, that’s exactly what it was. It was a wake-up call—no, more like a slap in the face. Starving myself of nutrition relieves the migraine symptoms temporarily, it does not eliminate them or their cause, and it has potential for long-term harm. These months of operating at 50% much of the time have been amazing, but I will no longer trade my overall health for temporary relief of migraine symptoms.

Please cross your fingers, send good vibes, pray, or whatever it is you do that I’ve gathered enough information from this absurd “diet” that my dietician, naturopath, and doctors can investigate some previously unexamined issues, like food chemical intolerances, enzyme deficiencies, and mast cell and metabolic disorders. My greatest hope is that I will not only find some answers for myself, but that my discoveries will help others with headache disorders find the missing pieces of their treatment puzzles.

Coping, Diet, Mental Health, Symptoms, Treatment

The Disappointment of Failed Treatments & Rallying to Try Again

Kerrie Smyres

I’m really struggling with the migraines right now, both physically and emotionally. It has been eight weeks since I got Botox injections and I’ve seen no improvement in the migraines. They are actually more frequent and more severe than before the injections, though I can’t say whether the Botox made them worse or if it is coincidence. It is always disheartening when a treatment that seems miraculous for many people, like Botox or Topamax, fails. I spent January grieving for the loss of yet another potential treatment.

“Intractable does not mean untreatable; it means unruly or difficult (but not impossible) to treat.” It has been five years since I wrote those words. Five years of worsening migraines and countless attempts at treatment that have all been ineffective. Clinging to the promise of finding an effective treatment sometimes feels like an exercise in self-deception.

Yet, here I am, cheered by the thought of a new drug I’m going to try and the treatment possibilities I’m going to talk to my doctor about. I’ve been talking with Hart about my plan to schedule appointments with my headache specialist for every two months and the journal articles I plan to take him on my next visit. Just as the severity of the migraines is cyclical, so is my hope for treatment and the enthusiasm with which I pursue new avenues.

The nature of migraine symptoms contributes to my wavering dedication. Fatigue, lethargy and brain fog make research and phone calls difficult. Sometimes I’m too sick to keep appointments (I’ve canceled three in the last week alone). The accompanying emotional upheaval, including irritability, anxiety, and depression-like feelings, can cause the search for relief to feel fruitless.

So, ten years after a doctor first took my migraines seriously, I continue to search. Here’s what’s next on my plan of attack:

  • Diet: I’ve been following an extreme migraine diet for three weeks. In addition to avoiding tyramine and tannins, as I wrote about, I haven’t been eating any other suspected food chemicals, such as nitrates/nitrates, sulfites/sulfates, caffeine, phenylethylamine (in chocolate), MSG, and aspartame. I’ve noticed no improvement on the diet and my skepticism of food triggers remains. I’ve recently reread ACHE’s excellent article that questions the validity of food triggers and am going to reevaluate my plan.
  • Preventive medication: My headache specialist is sending me a prescription for Sibelium (flunarizine), which is a migraine preventive commonly used in Canada that doesn’t have FDA approval for use in the U.S. (presumably because the company doesn’t want to spend the money necessary to get approved). With side effects of weight gain, lethargy, and depression, I’ve been reluctant to try it. Having spent the vast majority of the last two months in a migraine, I finally decided that if it helps, the benefits to my mental health will outweigh the potential risk. I’m still nervous, though knowing I can just stop taking it (unlike the Botox, which I have to let wear off) gives me a helpful sense of control.
  • Platelets: I know so little about this that I’m a little reluctant to even mention it. Someone on the Migraine Research Foundation Facebook page said that her doctor told her of a patient whose migraines subsided when he donated platelets. I’ve also read anecdotal evidence of people’s migraine attacks stopping when they were on Plavix, a blood thinner. What I’ve learned is that some people have too many platelets, which can cause headaches, and also that platelets “tend to become sticky and release serotonin which is intimately involved in the migraine process.”

In the first draft of this post, which I wrote last week, I said, “I am tired. Tired of being sick, tired of having to claw my way out of bed every morning. I don’t feel depressed in the clinical sense, but being sick is wearing on me.” Since then, I’ve determined that I definitely was depressed, but I also had a migraine reprieve. Over the weekend, my pain reached the low of level 3 and I spent eight hours at a level 4. I was reminded that I don’t always have a horrendous headache and that I’m not always in a migraine attack. A little relief goes a long way in bolstering my spirits. Don’t worry, Mom, I’m once again happy and motivated!

Chronic Migraine, Diet, Symptoms, Triggers

Diet Update: Beyond Frustration; Debilitating Chronic Migraine Looms

Kerrie Smyres

After my eagerness to meet with a dietician, you might have expected an update on how the appointment. I intended to write one. It was to be about the foods she recommends people with headache disorders avoid (histamine, tyramine and benzoates) and her interesting schedule for reintroducing foods. I was so excited to tell you all about it… until I tested my first food and the frustration returned threefold. Since then, I haven’t been able to talk — or even think — about my diet without crying.

Frustration is no longer even close to an adequate representation of my emotions. I can’t sort out if a food is a trigger or not, if my symptoms are connected to a particular food or to eating in general. I can’t tell if I would have gotten a migraine if I hadn’t eaten a certain food or not. I can’t identify how much of a role other triggers are playing in all of this. It’s like I’m constantly banging my head against the wall.

What I do know is that I always feel worse on days I test foods. That eating ANYTHING, even my “safe” foods of chicken breasts, white rice, and oats usually makes me feel worse. That the issue doesn’t seem to be certain foods, but food itself. My naturopath’s hypothesis that I have a inherited metabolic disorder is sounding more and more plausible. I won’t if that’s the case until I get the results of genetic tests. (Check out WebMD overview of inherited metabolic disorders for an excellent short introduction to the topic.)

I also know that I feel trapped. Trapped between getting good nutrition and feeling horrible all the time. Testing foods has already increased the frequency of my migraine attacks as well as the severity of all my symptoms. My head pain is back to a level 5 or even 6 almost daily. Violent bursts of nausea shock me out of sleep at night. My equilibrium is distorted enough that I have trouble standing up and walking straight. I’m weak and shaky. My knees occasionally collapse when I walk. The effects are mitigated somewhat by only testing foods every other day, but the severity of the symptom is steadily increasing. I wonder how much longer it will be before the drenching night sweats and nightmares, which accompany my severe nighttime migraine attacks, return.

I fear the enormity of the pain and discomfort that are creeping up, preparing to overtake me. Malnutrition appears to be the only way I can keep them at manageable levels, but that’s taking too great of a toll on the rest of my body. I don’t want to give my life back over to chronic migraine, but I can’t continue starving my body of nutrition.

Debilitating chronic migraine’s return appears imminent. It’s breaking my heart. These last few days, it feels like it’s breaking my spirit, as well.