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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.

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You Are Not Your Pain: An Introduction

I was both eager and skeptical to read the book You Are Not Your Pain [Amazon affiliate link], which I received a free copy of for review. The book is a self-guided, pain-focused mindfulness-based stress reduction course that includes audio tracks of guided meditations. I was excited to read the book because I’ve been searching for an inexpensive DIY guide to MBSR to recommend to readers since I took an in-person course in 2008. None of the options quite fit. Until I found You Are Not Your Pain.

Even though authors Vidyamala Burch and Danny Penman have chronic pain themselves, I was skeptical that they had the authority to really understand what it’s like to live with pain. I’m not proud to say I questioned their credibility, but I did. Reading their stories made it seem almost too easy. Like their symptoms were mild and non-disruptive to begin with, so applying mindfulness was no trouble for them. I was wrong. My misperception was a result of the authors distilling their stories so they wouldn’t overshadow the book’s content. After all, this is a guide to mindfulness, not a memoir.

I was fortunate to be able to ask Vidyamala Burch, one of the authors, the questions that arose when I read the book. Her responses were thoughtful and detailed. Instead of just printing the interview, this post is the first of a six-week series that uses her replies to explain concepts of the book. Even if you have no interest in the book, these posts contain valuable information about coping with chronic pain. The topics I (and Vidyamala) will address include:

  • This Moment: When I was my sickest, I would go to bed wondering how I would get through each day. Similarly, Vidyamala did not think she would be able to make it through the night when she was in the hospital with severe pain. She describes the thought that got her through that night and subsequent nights. And started her journey with mindfulness.
  • Primary and Secondary Suffering: A central concept of the book is that pain has two components, the physical sensation and our emotional reaction to the physical sensation. We cannot control the pain, but we can control our reaction to the pain. Before I grasped this concept, it seemed like a minor distinction that wouldn’t do much good. Now it is an essential part of my coping strategy—it’s quite possibly the one I use the most in all areas of my life.
  • Mindfulness Practice: Overcoming Discouragement: “This can’t possibly work for someone who is as sick as I am,” I thought as I gave up on my first MBSR homework three minutes into the meditation. Eight years later, the visceral memory of that first meditation is so strong that I asked Vidyamala about it. The experience was familiar to her, too.
  • Mindfulness for Non-Pain Symptoms: The book is focused on pain, but the principles can apply to other symptoms (and, really, to life well beyond illness). Vidyamala explains how she uses mindfulness to manage fatigue.
  • Beyond Mindfulness: 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. It turns out many Buddhist practices can help with managing pain and illness (and aren’t inherently religious). Vidyamala talks about the ones that she employs regularly.

TL;DR: Read You Are Not Your Pain if you’re looking for a way to cope with any illness that causes frequent or chronic pain. Commit to doing the guided audio exercises 20 minutes a day for eight weeks for an inexpensive DIY mindfulness-based stress reduction course.

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Migraine Mood Changes: Depression-Like Symptoms

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.)

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Your Guide to Getting a Spring TMS

getting-a-spring-tmsA non-drug treatment with few reported side effects that works as both an acute treatment for migraine attacks and a migraine preventive. That describes the Spring TMS, which received FDA approval in 2014 and is slowly becoming available throughout the country. Compared to other technologies, Spring TMS’s rollout has lacked much fanfare, but it’s a pretty exciting treatment with a long history of research to support its use.

Transcranial magnetic stimulation (that’s what TMS stands for) uses a very short magnetic field to send a brief energy pulse through the skull into brain tissue. The pulse causes very mild electrical currents in the brain that are believed to stop a migraine attack by interrupting the abnormal electrical activity in the brain caused by migraine.

My experience with Spring TMS might make you wary. I believe the worsening of my migraine attacks while using it was coincidental, not caused by the device itself. I still advocate for trying it because the research on Spring TMS is quite strong. I also advocate for talking to your doctor about what to do if your head pain worsens while using the device.

Here’s what you need to know for getting a Spring TMS, from which doctors can prescribe it and learning how to use it to its cost and how the rental program works. It contains an exact transcript of the questions an eNeura executive answered for me in April.

Kerrie: Can any doctor prescribe Spring TMS? If not, how can a patient choose a doctor to prescribe it?

eNeura: The device is currently available by prescription in specialist headache centers around the US. If you want to see which doctors near you can prescribe the Spring TMS email customercare@eNeura.com or call 1(408) 245-6400, and press 1 to speak with a Customer Care representative. Doctors who are interested in prescribing the device can also email or call eNeura customer care.

How much does it cost?

Spring TMS is available by prescription under a rental program. The cost is comparable to other prescribed migraine treatments. The company offers a $300 discount off the first 3 months for new patients. A new 3 month prescription is $450 ($150 per month) plus a one time $50 shipping charge. Total charges for the first three-month period come to $500.

[The above pricing only applies for the first three months of use. Here’s updated pricing information from eNeura’s customer service department, current as of Aug. 24, 2016: We rent the device in 3-month increments.  At list price, the cost per month is $250. A patient who selects the 12-month option will average $175 per month for SpringTMS. We also offer new patients a $300 discount on their first prescription, which would bring the cost per month down from $250 to $150 for that first prescription.]

Does insurance cover SpringTMS? 

As a new migraine treatment, insurance coverage for Spring TMS varies and will likely require documentation of medical necessity from the prescribing physician. eNeura has retained an insurance reimbursement consulting service for patients wishing to pursue insurance coverage. eNeura Customer care will help you get started. Call 1(408) 245-6400, and press 1 to speak with a Customer Care representative.

Do you bill insurance? If not, have patients been successful applying for reimbursement from insurance companies?

eNeura does not bill insurance companies, but patient’s can submit invoices to their insurance company for potential reimbursement.

How does the rental program work?/How does a patient renew a prescription?

eNeura: Near the end of the three-month period, the patient’s doctor can send a renewal prescription to eNeura. eNeura, in turn, emails an invoice for the renewal period. Once that’s paid they will mail a new SIM card to replace the original SIM card in the machine. If the prescription is not renewed and the new data card is not inserted in the Spring TMS unit, it stops working. 

Is special training required to learn how to use the device?

It is easy to use and is fully automated to guide the patient through treatment in a step-by-step fashion. While there is no special training required, eNeura offers an individualized program to support you as you begin using the Spring TMS.

A Clinical Education Consultant will contact you when your Spring TMS arrives to help you get started and answer your questions. During your first 3-4 months of use, your nurse will continue to support you in your treatment plan, answer your questions, review your diary and report your progress to your doctor. 

Is the unit shipped directly to the patient or does it go through the doctor?

Prescribing doctors send the three-month prescription to eNeura. Once the prescription is received, eNeura prepares the device and ships it directly to the patient’s home.

If a patient stops using the device, how do they return it?

When a patient receives their SpringTMS in the mail they are instructed to keep the original packaging. If a patient stops using the device, it needs to be shipped back to eNeura. Contact eNeura Customer Care to obtain a prepaid return shipping label. There is no charge for returning the device.

What else would you like patients to know about SpringTMS?

Many migraine patients are looking for non-drug treatment options. For them medications either don’t work… may be contraindicated or just not well tolerated. SpringTMS offers a safe clinically proven treatment option without medication side effects.

Longtime reader Timothy Bauer checked in with eNeura on July 20 after reading my article on Migraine.com. He was told that doctors who have not already been trained in prescribing the device may have to wait several months for training. The company gave him the names of doctors in his area who have already been trained.