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Quick Survey on The Daily Headache

survey-on-the-daily-headacheCan you help me with something? I’m trying to figure how to best sum up what I write about. Everything I come up with sounds flat and academic. I have a couple questions:

  1. How would you characterize what you read about on The Daily Headache?
  2. What topics do you most enjoy reading about on The Daily Headache?

You can leave your comments below, on social media, or by emailing
kerrie[at]thedailyheadache[dot]com. Answer either or both. Thank you!

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You Are Not Your Pain: Primary and Secondary Suffering

This is the third 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.

Pain has two components, the physical sensation and our emotional reaction to the physical sensation. We cannot control primary suffering—which is the pain itself—but we can control secondary suffering through our reaction to the pain. I used to believe this distinction was immaterial, but I’ve come to believe it is possibly the most effective coping strategy for to help me deal with all manner of adversity. I use it in every aspect of my life.

Kerrie Smyres: How do the principles of “You Are Not Your Pain” apply to someone who has pain as one component of a chronic illness with other symptoms that can be just as, or even more, debilitating?

Vidyamala Burch: The principles of the book “You Are Not Your Pain” equally apply to anything that is unpleasant, whether that is pain, some other debilitating symptom, or more mental and emotional suffering. The absolute core principle is that when we have anything unpleasant we resist it. The pain isn’t really the problem; the resistance to the pain is the problem, the response in the heart and the mind of ‘I don’t want this.’

This response means that you are kind of pushing it away and when you push it away you make it worse. In the book we make a distinction between ‘Primary and Secondary Suffering’ to describe his. Primary suffering is the unpleasant sensations in your body, heart or mind that have already arisen. We call this a ‘given’ in this moment. But if you automatically push it away you then get lots of other suffering—and we say that this suffering is optional and that is the secondary suffering.

To summarise: the primary suffering is anything that is unpleasant in your experience; it doesn’t matter whether that is pain, illness or a painful mental state. All the approaches in my book will teach you how to accept the primary suffering and reduce/overcome the secondary. This means your overall suffering will reduce—sometimes dramatically.

KS: Primary suffering can seem so overwhelming that secondary suffering feels inevitable and unavoidable. What advice would you give someone struggling to separate secondary suffering from primary suffering?

VB: It is difficult, as pain can feel incredibly solid. We can feel as if we are solid and the pain that is the enemy is also solid and there is very little room for separation within this solidity. But the deeper awareness that comes from mindfulness is that life is like a river, it’s not solid at all. It is a flow of thoughts, emotions and feelings arising all the time. So, what we are doing is learning is to rest our awareness within the flow of the river of life—we are learning to work with this fluid experience as it comes into being and passes away moment by moment.

One of the models that I use to help people struggling to separate secondary suffering from primary is blocking and drowning. When we look at discomfort the first thing we do is resist it, so first of all is the ‘I don’t want this’ response then that bifurcates into two different reactions: one is where we harden against the experience, perhaps tuning out or becoming quite blank and at the same time the body becomes quite hard because of tension, the mind is rigid, and we get emotionally numb; this is what we call the blocking response.

The drowning response is the opposite. We feel overwhelmed, where there is nothing else other than this pain. You are just completely overwhelmed, you feel ‘Oh my god, this is just far too much.’ Part of the skill is to understand which of the two things you are doing, because most of us either do one or the other. If you find that you are blocking, numb, a bit stuck, rigid, bored—often boredom comes with blocking—then the art, or the skill, is to come a little closer to what is actually happening – what are the sensations in my body? What am I thinking? How is my heart feeling? Then come a little closer.

But if you are in overwhelm, then you need to broaden and become aware of other things as well. If you are overwhelmed by pain, or discomfort and there is nothing else in the universe other than this stress in my heart, or this pain in my head, or whatever it may be then the task is to notice other things around you. You can look in your body for pleasant sensations, in the moment there is always something pleasant, so what is pleasant? It might be warm hands, well I notice right now that the sensation of the hair on my forehead is actually quite pleasant, it might be something as simple as that. It’s like you pull back a wide angle lens on a camera. How many other things can you feel? You can feel your bum on the seat, your feet on the floor and hair on the forehead, cardigan on the skin, warm hands, breath in the belly, soft face, eye lids touching—that is often very pleasant!

So you learn to ‘calibrate’ blocking and drowning tendencies with awareness. You are playing around with going closer, pulling back, then going closer and pulling back. Eventually we arrive at a place of beautiful equanimity where the pain is there but we are not overwhelmed nor are we blocking—for most of us it’s a dance and dancing between those two movements of pulling away and broadening is very interesting, it can become so fascinating. 

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Migraine Medication Detox

migraine medication detoxI’ve been taking an Amerge (naratriptan) and two Midrin twice a day since April 2015. The medications allow me to function, but have the potential to increase the frequency, severity, or duration of my migraine attacks through medication overuse headache (MOH), which is also called rebound headache. My headache specialist is aware of my medication use. We discuss its potential impact at every appointment and he reiterates that the odds of it being a problem for me are quite low. Although my history showed MOH was unlikely to be a concern for me, I was still concerned. With my doctor’s consent, I persisted taking the drugs because they were the only way I could function.

Since eating anything is my migraine trigger and no preventive medications have been able to address that issue, I feel stuck. Going off the medication is not going to stop eating from being a migraine trigger. But my last visit with my headache specialist got me thinking about the two treatments I’ve been trying this year. One is the ketogenic diet and the other I can’t tell you about yet. Both have helped a small amount, but neither has had a huge impact. They have helped enough that I don’t want to stop either one, but I’m having trouble quantifying the extent of each one. What if MOH is somehow keeping me from realizing the full benefit of either or both treatments?

What if…? When a question like that lodges itself in my mind, I have to learn the answer. My migraine medication detox began last night.

My doctor offered to admit me to the hospital to keep me comfortable through detox. I declined because I don’t think I need it. Instead, I will take Compazine (prochlorperazine) 30 minutes before meals and use an oxytocin nasal spray after the migraine attacks begin. Compazine is known as a nausea drug, but it can also help reduce migraine symptoms. Oxytocin is being studied as a potential acute migraine treatment and could also have preventive effects. If my migraine attacks take a sharp turn for the worse, I’ll add DHE or Migranal to the lineup (assuming they aren’t out of stock). I have the option of starting another preventive at the same time, but think I’m going to wait in an attempt to control variables.

If you’re reading this to learn how to do a migraine medication detox with as little pain as possible, please be aware that my treatment may not be an applicable template. For most people with MOH, going off the medications would result in horrendous pain. My symptoms and situation are different than most. Thanks to my current preventive treatments and dietary restrictions, my pain rarely gets above a 3 on a 0-10 scale. I expect that it won’t exceed a 6 even while detoxing. Fatigue and cognitive dysfunction have been more disabling than the pain for me for the last few years. Those symptoms will be bad, but as long as I can feed myself and plan to limit my work for a couple weeks, detox shouldn’t be too bad for me.

I very much want to discover that MOH has crept up on me and is keeping two somewhat effective treatments from reaching their full potential. But I’m not holding my breath. I suspect I’ll go through migraine medication detox and discover that I still have a migraine attack every time I eat. While the acute medications may be increasing my susceptibility to migraine attacks outside of eating, they are also managing the attacks I get twice a day no matter what. My best hope is that the ketogenic diet and the other treatment are far more effective than I think because MOH is hiding their efficacy. Or maybe oxytocin will provide great relief. Whatever happens, I’ll have at least one more data point to help determine what my next course of action will be.

(Pardon any typos. Editing is beyond me right now.)

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You Are Not Your Pain: This Moment

This is the second 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.

When I was my sickest, I went to bed most nights wondering how I would get through the next day. When she was in the hospital 30 years ago and in severe pain, Vidyamala Burch did not think she would be able to make it through the night. Then she had a thought that got her through the night and started her journey with mindfulness. Vidyamala describes that moment in the book. In my first reading, it struck me as almost magical and immediately life-changing. But that’s rarely how these things work. I asked Vidyamala to describe what it was like for her.

Where did you go from your realisation in the hospital that you didn’t have to get through the night, only the moment? Was there an instant change in your life or was it more gradual?

When I talk now about the realisation that I had in the hospital thirty years ago as a young woman –when I was lying there, in terrible pain and on the edge of despair, I truly believed that I wouldn’t be able to make it through the night. Then I had an insight; a voice came to me that said: ‘You don’t have to get through to the morning, you just have to get through this moment’ and this was the very beginning of my journey with mindfulness.

When I speak about that night with the benefit of thirty years of hindsight, it can sound as though it was a neat, clear understanding at the time. But it wasn’t at all. All I knew was that my life had profoundly changed and I had a very strong intuition to follow that insight and to go on to explore the deeper meaning of it.

At that time I had no idea where the ‘voice’ had come from. Now I think it was my deeper wisdom, something we all have in us and that reveals itself in different ways. I always say that if I was a Christian I would have said it was God, but I don’t believe in God, so I understand it as perhaps some part of my consciousness that was wiser than the part of me that was suffering.

In a way I don’t think it matters where the voice came from but it was a very strong voice and when I woke that next morning, I intuitively knew that my life had completely changed. I didn’t know anything beyond that – I was still extremely confused and extremely vulnerable.

The insight that I talk about today has taken me years and years of evolving in my mindfulness practice and as a person, to make sense of it and to process. I am still to this day continuing to try TO work on it, develop it and make the best sense that I can of it.

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A Gratitude Letter

“I turn 40 next month. Migraine has devoured my 30s and most of my 20s. I’m so sick of it. And I’m so tired,” I said to my headache specialist through tears at my appointment last week. My words are unsurprising given the grief I’ve written about this summer. Oddly, though, my tears were not fueled by grief. I was crying out of gratitude for my headache specialist.

I began to write a blog post about my gratitude, but it didn’t feel right. My doctor is the one who really needs to know all the reasons I’m grateful for him. So I sent him a gratitude letter. I spent several hours crafting what I wanted to say, then put my rusty handwriting skills to use and wrote him a card. What I said is for him only, but I want to share one part of it with you:

“I needed you to know that even though I’m still struggling so much, your care continues to improve my life. I will eventually find relief and having you on my team is one reason I believe that is possible.”

When I was moderating for Migraine.com, a community member asked if I was a partner in my healthcare. I said no, that I am the leader of my healthcare. I don’t mean that in a belligerent way. I know my own health and body better than anyone else. I do not blindly listen (can one listen blindly?) to what health care providers say is best for me, nor do I expect anyone else to fix me. I take the input of trusted health care providers, weigh it against my own experience and needs, and make informed decisions. I do not flout authority (at least not in this instance), but I am the captain of this ship. Any good captain respects that every person in the crew is necessary to keep the ship afloat.

I can only be so confident in my own ability to run the ship because my crew includes people like my headache specialist. His compassion and knowledge have been a comfort and a help to me for many years—I first saw him in 2002, saw other specialists when I lived in Seattle and Boston, and have been back with him since 2011. I have no idea how many treatments we’ve tried together, but he always has new ideas for me. He even told me last week that he will never stop coming up with ideas I can try.

My headache specialist and I both know I’m a complicated case. We also both know that I want nothing more than to feel better. I know he’s knowledgeable, skilled, optimistic, and up on the latest research. He knows I’m determined, do my homework, and am willing to take calculated risks. We work well together. I feel so fortunate to have him on my crew.

Sending the gratitude letter felt like a bit of a risk. Being so heartfelt left me feeling vulnerable. (Although I’ve felt far more vulnerable while crying in his office.) But writing the letter also felt necessary. We have a formal relationship within defined boundaries. We are warm toward one another within those confines, but our roles are strict. Yet he has such an influence on my day-to-day life. I needed him to know how important he is in my struggle with migraine, which has thus far been the biggest stressor of my life.

It is true that having the specter of migraine looming over my 40s terrifies me. I cannot deny the presence of grief. But having that grief overwhelmed by gratitude felt almost like a gift. A reminder that this life is hard, but I’m not in it alone. I am so fortunate to have a headache specialist who truly understands what I am going through and sincerely wants to help. I needed him to know just how much that means to me.