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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 is a Practice (and Can Be Frustrating at First): “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 More Than Pain: 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.

 

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Migraine and Stroke, Heart Disease: Understanding the Risks

Learning that research has found connections between migraine and stroke and heart disease can be chilling. Fortunately, the news is not as bad as it might first appear. I spoke with headache specialist Gretchen Tietjen, M.D., about an article on the connection between migraine and an increased risk of stroke and cardiovascular disease that she wrote for the American Migraine Foundation. “From a patient’s perspective, this information is frightening,” I told her (because I have no poker face, even on the telephone). Dr. Tietjen soothed my worries tremendously by putting the information into perspective.

“It can be very scary when you read things like this,” Dr. Tietjen said. “Study after study shows this little bit of increase.” However, the risk is very small. The most important takeaway is that patients should keep migraine in mind as part of their overall risk for stroke and heart disease. If you have migraine and are at increased risk of stroke or heart disease, it’s extra important to be aware of and manage those risk factors.

Migraine Increases the Risk of Stroke and Cardiovascular Diesease (But Only a Little Bit)

Yes, migraine does increase the risk of stroke, particularly for women who have migraine with aura. But the risk is very, very small. Less than 1% of all strokes in women have any connection to migraine. And the presence of a connection is not proof of a causal relationship—that is, just because the two are linked doesn’t mean that migraine causes stroke.

The article reports that a recent study found “that migraine increases the risk of stroke, coronary events, and related death by about 50%.” At first glance, that sounds terrifying, but Dr. Tietjen’s clarification was soothing. She said, “This sounds worrisome but to put this in perspective only 1% of the total population in the study had a cardiovascular event over the 20 years of follow-up. The take home message is that having migraine does not mean you will have heart disease or a stroke, only that it appears to slightly increase the risk.”

Risk Factors For Stroke and Heart Disease

Dr. Tietjen highlighted risk factors like smoking, high blood pressure, high cholesterol, and diabetes. She said that in people with migraine, these factors have an additive effect—the combination of more than one risk factor is worse than any one by itself. If you have any of these risk factors in addition to migraine, quitting smoking, lowering your blood pressure and/or cholesterol, or getting your diabetes under control could lower your risk of heart disease substantially. Smoking is the risk factor that stands out the most to Dr. Tietjen. Studies of migraine and smoking have shown that the combination of the two increases your stroke and heart disease risk more than either one on it’s own.

Learn More About Migraine, Stroke and Heart Disease

Dr. Tietjen’s article, Migraine, Stroke and Heart Disease has in-depth information on who is at increased risk of stroke, differentiating between symptoms of migraine and stroke, the physiological links between migraine and stroke, and ways to lower your risk. As you read the article, keep in mind that the absolute risk is small and that you can modify your risk factors for stroke and heart disease. And make a list of any questions you may have so you can ask your doctor at your next appointment.

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Chronic Migraine Attitude Determines Altitude for Sarah

Sarah, a 20-year-old student at Brigham Young University—Idaho, shared this essay she wrote about living with chronic migraine for her English class.

Pain in My Brain

By Sarah Smith

chronic-migraine-attitudeI bury my head into my pillow trying to apply pressure to my skull. I pull up the covers to block out any light and hopefully to muffle any sound. I lay there motionless. My head throbs, pulsating, feeling as if at any moment it may explode. Dizziness sets in, and I continue to not move; maybe it’ll go away. I start to feel nauseous. I lay there with nothing but this pain and my thoughts: “How long will this last? Why can’t things just be normal?”

I have suffered from chronic migraine since I was five years old. Growing up, doctors would tell me that, “Your migraines will probably go away when you have menopause.” This was not very reassuring to hear. When I reached the age of 14, I started going to a neurologist. I would meet with him every three months and answer all of his questions and give him a review of my health. He prescribed me some medication that only helped some of the time. Eventually, when I was about 15, my neurologist suggested that I get an MRI, which I did, but there was nothing to be found. I continued to take medications for my migraines until I was about 17 when I decided that I didn’t want to be dependent on pills, and that I should try to figure out the triggers that cause my migraines.

Because I get migraines so often, about 3-4 days a week, it was/is hard to pinpoint exactly what the triggers are. It didn’t take long to discover my biggest migraine culprit – florescent lighting. Since the lighting of a room is not something I get to decide, it is extremely difficult to prevent a migraine from happening in these situations. If I’m in a room with florescent lights for a short period time, it’s not that much of a problem. However, high school was incredibly difficult for me, because I was around these lights for eight hours at a time. Much of the time my migraines will last more than a day. Because of this, I would go to school for a day, get a migraine, and miss the following day. This happened so frequently that I missed a large portion of my senior year and almost didn’t graduate.

Some of my other triggers include wind, long exposure to the sun, bright lights, loud noises, inconsistent sleep schedule, and eating more sugar than normal. The symptoms I have from migraines vary on the degree of pain. I usually experience blurry vision, dizziness, nausea, and severe headache.

I have found that the best cure for a migraine is simply to sleep. I will often also take ibuprofen or Excedrin Tension Migraine. Sometimes, even these don’t work, and I just have to wait the migraine out. These are the worst types of migraines, because no matter what I do I just need to let the migraine run its course.

In addition to almost not graduating high school, my migraines have impaired other aspects of my life. When I have a migraine I can’t go out and do the things that everyone else is doing. This was especially hard while growing up, because all I wanted to do was play with the other kids and do what they were doing. It was also hard to explain why I couldn’t go out and play with them. Most children don’t understand what a headache is, let alone a migraine. So in addition to being left out, I was also misunderstood. All I wanted to do was fit in.

In the end, I learned that the state of my health was not the determinant of the relationships I had with my friends. My attitude and character were the deciding factors of my relationships with others. Although I may not have had a physical presence some of the time, I was still able to have a bond with my friends. It also helped that they were genuinely acceptive of me, which made me incredibly grateful.

There is a saying, “Attitude determines altitude.” I have come to believe this. It has helped me to cope with a debilitating chronic illness, and it has brought me closer to my friends, family and God. Thomas S. Monson shared his thoughts on attitude which has been a great inspiration for me. He said, “So much in life depends on our attitude. The way we choose to see things and respond to others makes all the difference. To do the best we can and then to choose to be happy about our circumstances, whatever they may be, can bring peace and contentment. We can’t direct the wind, but we can adjust the sails. For maximum happiness, peace and contentment, may we choose a positive attitude.”

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres.