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Hello There!

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.

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Brain Fog, Uncertainty, Excitement, Beauty, and Hope

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.

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Gratitude and Love Amidst the Pain

celebration-of-friendsTurning 40 has been unexpectedly difficult for me. It’s not aging so much, but the recognition that I have spent the last 15 years in service to migraine. While I don’t normally worry about the future, somehow moving to a new decade has me projecting the past 15 years onto the next. I’ve written more about my churning thoughts, but they don’t feel worth sharing. I don’t want to spend more time thinking about grief and fear right now. Because even though these days have been difficult, my heart is also swelling with gratitude.

A friend was over last night and she, knowing how much I love my birthday, asked what my plans are. I explained that it’s been tough making plans because I can’t celebrate with food (which is how I used to celebrate everything), the weather is still too hot to do anything outside, and I’ve been getting migraine attacks every time I’m indoors in a public space. That led into a conversation about how scared I am that my life will always revolve around my health, how I panic whenever my migraine pattern (and responsiveness to treatment) changes, and how tired I am of exerting so much effort just to remain barely functional. As I cried, so did she. When I told her I just want to eat cake for my birthday, she told me she wants that for me, too.

I’m always grateful for this friend, but the cake thing took it over the top. She knows how much food means to me and how momentous eating cake would be. It was a reminder that she always sees me for who I am and listens to what I have to say. She doesn’t have migraine, but she totally understands what I am going through.

Having a friend like this feels like such a gift, but this is just one story of one friend. She’s not all that different from the rest of my friends. They understand that when I talk about migraine, I’m telling them about my life, not complaining. They listen with concern and love. They also get that sometimes I don’t want to talk (or think) about migraine at all. They aren’t put out when I have to reschedule or when I retreat from the world for months at a time. They see who I am underneath migraine and recognize how hard I try to get better. They love me.

I’m turning 40 after a very difficult year with my health. I am sad about the past and fearful of the future. I am also amazed by the beauty and joy in my life. I have the support of so many amazing people. Even on the hardest days, I never doubt that I am loved. That’s what I am going to focus on today, not the loss and longing that has filled this year or fretful thoughts of a future I cannot predict. As I celebrate my birthday, I’m also celebrating the abundance of love in my life.

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Sarah Hackley: Staying in Tune with the Body When Life Gets Hectic

Happiness with Migraines by Sarah HackleyIn this guest post, Sarah Hackley shares tips for keeping migraine attacks at bay by staying in tune with your body. Sarah is the author of Finding Happiness with Migraines: A Do It Yourself Guide. Win a free copy of her book by leaving a comment on this post or emailing kerrie[at]thedailyheadache[dot]com by 11:59 p.m. Pacific on Friday, September 23. (The contest has ended. Congratulations to Brian for winning the book!) 

Life gets hectic, and there are times when it becomes downright overwhelming. This is particularly true for adult women, who too often feel the pressure to be superwoman. Unfortunately, it is these same women who make up a significant portion of the migraineur demographic, and it is these overwhelming times that are most likely to push us into an escalating series of migraine attacks. One way to help combat this cycle is to stay in tune with our bodies.

What does that mean, exactly? What does it look like?

Being in tune with our bodies is largely about self-trust. Trusting our body to tell us what it needs, and trusting ourselves to hear those messages, understand them, and respond to them. Our bodies will always do their jobs. They will send those messages. That’s what bodies do. It is up to our minds to do the rest.

Cultivating the body awareness needed to respond appropriately to our bodies takes time and attention, but it is something we can all do using a variety of methods, exercises, and intuitions. One great exercise for beginners involves a kind of mindful meditation known as a body scan.

For the body scan, position yourself flat on your back, either on the floor, your bed, or a mat – whatever feels best and most natural to you. Then, gently close your eyes and breathe. Once you are present in the moment, move your attention to your feet, noticing any sensations in the toes, the heels, the soles, the ankles, and the tops of your feet. Invite curiosity to the practice, as if you are paying attention to these sensations for the first time.

Once you are sure you have experienced each sensation in your feet, move your attentions slowly up to your calves, attending to each part and sensation in the same manner. From there, move to your thighs, then your hips, then your torso, then your arms, and finally your neck and head. This exercise can take anywhere from three minutes to half-an-hour, depending on your personal preferences. When you are finished scanning, remain still and return to your breath. Finally, open your eyes, and slowly bring yourself to a sitting position.

Regular practice of this technique will strengthen the bond between your mind and your body, thereby ensuring you notice the body’s quieter messages. This gives you the tools necessary to act to protect yourself before major problems arise. Other ways to keep in tune with the body throughout the day:

  • Be mindful of any aches and pains that crop up and try to ease them with self-message or gentle stretching.
  • Watch your posture, and realign when you start to slump or hurt.
  • Pay attention to your energy levels, especially peaks and slumps, to see if you can uncover a daily cycle to work within (also ask yourself what foods or activities, if anything, may be contributing to that cycle).
  • Go to bed when you are tired and eat when you are hungry, without regard for the clock.

Deep body awareness takes time, but tuning in at any level will dramatically improve the connection between mind and body, which will help prevent small problems from becoming large ones. This will also help you receive your body’s subtle clues that a migraine attack is coming on, hopefully well before any of the overt signals make themselves known. And advance notice always makes prevention and treatment easier – especially in the midst of hectic times.   

For additional self-care tips on how to live well – and joyfully – with migraine, please check out Finding Happiness with Migraines: A Do It Yourself Guide by Absolute Love Publishing.

To keep up with and reach out to Sarah directly, here’s where to find her on social media:

Win a free copy of Sarah’s book by leaving a comment on this post or emailing kerrie[at]thedailyheadache[dot]com by 11:59 p.m. Pacific on Friday, September 23.(The contest has ended. Congratulations to Brian for winning the book!)

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Buddhist Teachings for Pain Management

This is the sixth and final post in a series exploring the topics covered in the book You Are Not Your Pain*. See You Are Not Your Pain: An Introduction to learn more.

Mindfulness-based stress reduction is a secular approach that applies the Buddhist principle of mindfulness to pain, illness, and stress. The more I learned about mindfulness, the more curious I became about Buddhism. Many Buddhist practices can help with managing pain and illness. Vidyamala talks about the ones that she employs regularly. (If you want even more, How to Be Sick* by Toni Bernhard is a treasure trove.)

Kerrie Smyres: What other Buddhist teachings do you find helpful in managing chronic pain?

Vidyamala Burch: Along with mindfulness, loving kindness and compassion are other qualities that come from Buddhist teachings. Both mindfulness and loving kindness are integral to how I manage my pain and to all of Breathworks’ pain management programmes in “You Are Not Your Pain.”

Through Breathworks’ pain management programmes, we guide people very, very gently and with loving kindness – metaphorically holding someone’s hand – to help them move closer to what is actually happening in their bodies.

Loving kindness is about having a response to yourself that you would naturally have to a loved one who is hurting, so for example if your child fell over it’s completely instinctive to scoop that child up to comfort with love and tenderness. So, try and turn that instinctive emotional response back on to yourself; it is basically gentleness and tenderness and acknowledgement of the feeling of sorrow of what it’s like to live in a body that hurts. It’s not an easy thing. I often think one of the most heroic things that you can do in life is to inhabit a body that hurts.

In Buddhism mindfulness and loving kindness are articulated in some key Buddhist texts. The main one on mindfulness is the Satipatthana Sutta and this provides a theoretical basis for what we teach. The Brahma Viharas is a key teaching on loving kindness. The Salattha Sutta describes primary and secondary suffering very well. So all these are implicit in my approach to living with pain and illness.

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