Chronic Migraine, Reader Stories

Migraine Stories: Chronic Migraine, Pain Without Suffering

In this beautiful essay, John Ptacek describes how he’s learned to live with the pain of chronic migraine without suffering. Want to share YOUR story? Submit it here.

Walking the Line Between Pain and Suffering

We We learn to avoid pain, but who teaches us to deal with it?learn to avoid pain at an early age. We are taught that hot irons, sharp objects and electrical outlets portend danger. Parents counsel children about such dangers, but sometimes the most effective teacher is pain itself. Pointed lectures are no match for a bright purple bruise. Incident by painful incident, we learn to sidestep misfortune through increasingly observant behavior.

We learn to avoid pain, but who teaches us to live with it? I, along with a billion and a half other people in the world dealing with chronic pain, could have benefited from a lesson or two on this subject.

We can all avoid trips to the emergency room by treading carefully on icy sidewalks and tucking in our fingertips when speed chopping carrots, but preventive strategies are of little use to people experiencing ongoing physical pain. People dealing with fibromyalgiaLyme diseasemigraine and a long list of other chronic conditions understand that their pain cannot be outwitted. They are chained to it, and probably forever.

The urge to resist pain is instinctive. What could be more natural than to hate hurt? One of my earliest memories of pain was the electric jolt of a bumblebee sting. I wailed hysterically as my mother patted a wet baking soda mixture around my throbbing thumb. I wondered how something so horrible could happen to me. All I did was touch a flower! This isn’t fair, I decided, unknowingly adding a layer of emotional distress to the mix. Soon, the pain went away, and along with it my existential uncertainty.

This rapid recovery cycle would repeat itself in coming years as I endured broken bones, concussions, pinched nerves, kidney stones, shingles and other assorted agonies. A “why me?” inner narrative often accompanied these events, but the pain passed too quickly for me to perceive that such mental resistance came with a price. That is, until the headaches showed up at my door.

Sometime in my fourth decade I started getting frequent headaches. At first I shrugged them off to my highly stressful job. Rather than seek medical attention, I started meditating, exercising and eating healthier. None of this put the slightest dent in my pain. In subsequent years, I sought the help of every traditional and alternative health care provider who might have even a remote chance of helping me. They gave it their best shot, but nothing helped. My headaches continued unabated. The lack of progress shuttled me off to a cold dark place familiar to chronic pain sufferers, a solitary space that is all but impossible to describe to outsiders for whom pain is a just passing affair.

Frustration at having to drag my evil friend around with me nearly every day compounded my painful existence. My mind had gotten in on the act, and now I had two fires to put out. Here’s the kind of nonstop chatter I had to endure: How much more of this can I take? If it gets any worse, how will I be able to work? Am I always going to be in pain? What’s the point in living? Why can’t these damn doctors do their jobs?

Anyone experiencing chronic pain knows what it’s like to be tuned in to this unnerving frequency. My unanswerable questions pitched me further and further into an unknowable future.

Even if someone would have counseled me early in life that embracing pain, rather than resisting it, was a winning strategy, I probably wouldn’t have known what to do with it. Wisdom can be baffling at first, and brilliant only later. And anyway wisdom can’t be taught. Moments of great anguish served as my bright purple bruises, and one day, I can’t say exactly when, I got wise to the voices in my head that were the cause my suffering. I achieved a degree of separation from them. I could still hear them, but it sounded like they were coming from the next room. Without really looking for it, I discovered that there was a dividing line between pain and suffering, and depending on how I walked that line, my situation could be either bad or much worse. Who knew bad could sound so good?

This dividing line can look awfully blurry when pain pins me to the mat. Because I am not at my rational best during such moments, I keep a note in my sock drawer reminding me not to push myself and to refrain from making important decisions. I also have a secret password to pull me up when I feel myself slipping into the pit of suffering: Allow. I allow the pain, and immediately suffering leaves the room. Without resistance, suffering cannot exist. That leaves just two of us in the room, me and my constant companion, locked in an uncomfortable but tolerable embrace.

Let me be clear. Pain is a rude and abusive house guest. No secret password will put it out on the street. I will be forever forced to cover its rent. But knowing this relieves me of my duty to resist it, and in that simple act of surrender, I know that I am opening myself up to all the goodness that life will allow.

chronic-migraine-john_ptacekRead more of John’s writing on his blog, On Second Thought, where he explores “the unquestioned assumptions that limit our capacity for happiness.” His writing is thoughtful and insightful.

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

Community, Coping, Reader Stories

Readers Speak: Reflections on Acceptance

Thank you for your thoughtful responses on acceptance! I’ve loved seeing your thoughts on a topic so close to my heart.

Only three of you balked at the idea of acceptance. For a couple of you, it was seen as as giving up the search for effective treatment.

Debbie: “I’m not there yet after 35 years. I can’t accept this is going to be the rest of my life! I search regularly and often for answers.”

Rowena: “I’m also going on 30 years with chronic migraine and I refuse to accept that this is how my life will always be.”

The third dissension also defined acceptance as resignation, but believes that her anger about migraine is what motivated her to find relief.

Bibi: “Not accepting my migraines—being innerly infuriated about how much good time was stolen from me made me motivated to change my lifestyle, diet and how I arrange my work life. It can be hard to accept once in a while, that I have to maintain this healthy lifestyle to stay free of the migraines for longer stretches. Like a diabetic I have to avoid things, else my body gets totally out of balance. This was hard to accept in the start, because I felt sorry for myself not being able to eat chocolate and a lot of other foods or to binge on computer watching at night. I try to treat myself with different ‘goodies’ now, when I want to have a good time now. Perhaps saints can accept the crippling, depressing attacks—I couldn’t.”

While our motivators may be different, I don’t think those of us who accept migraine are saints, nor do I believe we are complacent about the “crippling, depressing attacks.” In fact, everyone who wrote about embracing acceptance also said the continue to try to find relief, either by trying new treatments or managing triggers.

Newfoundlander: “I, too, have found that acceptance has been very important to my life quality. It has allowed me to grieve deeply about the life I don’t have. Unloading that heavy grief has lightened my emotional load, so life is better, even if the daily migraines are not. Simultaneously, I keep one foot in the door of hope. Hope for medical advancements, hope for new insights, hope for miracles for us all. That keeps me researching new possibilities. This balance of acceptance and hope is the best approach for me so far.”

Natali: “My most recent and potentially final liberation from the torment of migraines is exactly the same statement of acceptance. That doesn’t mean that I don’t (still!) try new medications or new treatments, it doesn’t mean that I have lost hope and have totally surrendered to a life of doom and gloom…. Acceptance of some short shifts the power back to the individual, you are no longer at the mercy of migraines…. [it] is not about defeat, pessimism or giving up. It is the start of rising from the ashes like a phoenix. It is a very spiritual and pragmatic means of reclaiming one’s own inner strength. I only wish, I had embraced the idea of ‘just accept it’ earlier in my life, to save myself endless days and nights of hellish desperation and pain.”

Lisa: “I think acceptance can easily live next to still being open to what may help…. Well maybe not easily. It takes work, but it’s possible.”

Dawn: “Yes. This has been the biggest help in my life. I still keep my ears open for ideas, but my life isn’t about the search anymore.”

Trish: “I agree that it is a healthy place for me to be when I can accept that I will always have migraines…. If there comes a day that a cure is found or something else works for me, hallelujah!!! Until then, I do have them, I just need to get on with this thing I call life.

Alicia gives a great example to differentiate acceptance from resignation:

“Eckhart Tolle in The Power of Now makes an important distinction between acceptance and resignation. Acceptance is where you are right now in the present moment. He gives an example of being stuck in the mud. If you’re stuck in the mud, you don’t necessarily have to like it or resign yourself to being stuck in the mud. But until you acknowledge that you’re stuck in the mud, you really can’t take necessary steps to get out of the mud. I think that I can accept that migraines are a part of my life. But I don’t necessarily resign myself to them. In the present moment, even if I have a migraine, I try to accept it and then do the necessary things I can do to abort it or prevent one in the future. Acceptance means not adding extra suffering to the physical pain of the migraine, such as resisting it with phrases such as “I wish this weren’t part of my life”,” this will be my life forever,”” I hate this pain, etc.” Changing the way I think about it has given me a lot of relief—after all the psychological aspect of having migraines can be just as devastating as the physical aspect.”

This response is in a similar vein to Acceptance, Not Resignation, a article I wrote, which several readers mentioned in their responses. I still agree with what I wrote several years ago:

I will never be migraine-free.

You may read that sentence as resignation or giving up on trying to improve my health. For me, it represents acceptance and it feels a world away from resignation.

I haven’t given up on finding an effective treatment—I’m always trying new options and constantly tweaking my regimen—but I have given up on the idea that my life can only be good if I’m migraine-free. And by accepting that I will always have migraine, I have lessened its control over me.

The reader who asked the question about Larissa’s comment emailed me after reading some of your responses. He said he thought that maybe the difference was semantic, so I pointed him to the article. After read it, he agreed that we were using different words to describe the same approach.

This is only a sampling of the responses. You can read more in the responses to On Accepting Migraine: Your Thoughts? and in the Facebook discussion.

Community, Reader Stories

Migraine Moments Short Film Contest

Do you want to share your perspective on migraine with health care providers (including headache specialists), research scientists, and patient advocates? Migraine Moments, the American Migraine Foundation’s short film competition, is your chance to do just that. According to AMF’s website, the goal of the films is to “convey many powerful and complex ideas about migraine and people with migraine—the pain and burden of course, but also the struggles and triumphs in finding relief and help from treatments and doctors, family and friends.”

Entries, which are due by April 1, can be any sort of original video you’d like to create: documentary, music video, animation, simulations, visualizations, fiction, performance art, interpretive dance… whatever feels like the best way for you to convey your experience with migraine. Be as creative as you like, as long as the video is a finished work of your own creation that’s no longer than five minutes. Entries will be judged by members of the American Headache Society’s electronic media committee and board of directors.

The first place winner will receive $2,500 and a trip to San Diego to present their work at the American Headache Society’s meeting on Friday, June 10, 2016. The second place winner will receive $1,000 and the third place prize is $500. Winning entries will also be promoted on social media and AMF’s website.

Check AMF’s website for the Migraine Moments official contest rules and entry form.

Don’t fret if you don’t have time to get your entry together by this year’s deadline. AMF plans to turn this into an annual event.

(Wondering why the winners will be presenting at the American Headache Association’s meeting when the contest is sponsored by the American Migraine Foundation? The two groups are part of the same organization. The American Migraine Foundation is the fundraising branch of the American Headache Society. AMF is the force behind the 36 Million Migraine campaign.)

Coping, Reader Stories

On Accepting Migraine: Your Thoughts?

“The most important thing I’ve done to deal with migraines emotionally is to accept that I have them and will for the rest of my life.”

That’s an excerpt from Larissa’s story of life with chronic migraine, which I shared last week. It registered with me as healthy statement of acceptance, but it didn’t sit right with a longtime reader. This reader’s unique insights and questions give me a different perspective and help me clarify my own thoughts, so his comments always catch my attention. He wrote:

Would be very interested what the readers thought of one statement of Larissa’s story: “The most important thing I’ve done to deal with migraines emotionally is to accept that I have them and will for the rest of my life.”

Why accept she may have them rest of her life? She is around 30 years old—she will probably live another 60 years or so. With new medical advances and because she is so young—is that a helpful perspective moving further? (No offense to Larissa in my query.)

What I love about this reader is that he hasn’t discounted Larissa’s perspective even though it doesn’t sit right with him. He’s genuinely curious to know about her point of view and what other people think of it. So I’m passing his question on to you.

What do you think of the statement: “The most important thing I’ve done to deal with migraines emotionally is to accept that I have them and will for the rest of my life”? Do you think it is a helpful perspective or not? Do you agree with it and operate under the same principle or do you disagree?

Please leave a comment with your response. I’m looking forward to hearing what you think. I don’t want my thoughts to influence anyone’s response, so I’ll share my response a little later.

Reader Stories

Migraine Stories: Chronic Migraine Hasn’t Eclipsed Larissa’s Spirit

At 30 years old, Larissa has never been able to work full time due to chronic migraine. She still works when she can with an “extremely part-time job” that takes six hours a week and sells her beautiful knit goods on her Etsy shop, Purl Knitting. Larissa is also studying arts and cultural management in a part-time distance learning program. Her determined, hopeful spirit shines through her responses. 

chronic migraine spiritHow frequent are your migraine attacks? What’s your pain like? What are your other most bothersome symptoms?

I have migraine symptoms mixed with tension type headache every day that includes muscle pain and tension, moderate head pain, light sensitivity and nausea. About twice a week it will worsen into a more severe attack. My migraines go in cycles of severity as well, so I will sometimes have a very severe migraine for 2-3 weeks. My pain can be either one sided or all over my face and head, and is usually around a 4-6 out of 10 on daily basis. I would say my most bothersome symptoms are widespread constant muscle pain and tension throughout my face, neck and shoulders, nausea and lack of energy.

What are some of things you find most frustrating about having chronic migraine?

My lack of ability to plan anything or know if I will be able to do anything, and the limitations that it places on my day to day life. I have to constantly pace myself and reign in my activities and energy output to be able to make it through the day.

How has your career been affected by chronic migraine?

I have never been able to work full time because of chronic migraine, and I am now only able to work limited hours from home as an arts administrator. I have had to leave jobs because of it and I’ve had to be on employment insurance because of it. I trained to be a dancer and would like to dance in some way now, but migraines are really holding me back. I feel that although I have the skills and experience needed to do the jobs that I want to do, I don’t fit most job descriptions because I can’t be there in person all the time or work in a traditional way.

However, I consider myself very lucky to be able to work a little bit and also run my Etsy shop, Purl Knitting. Knitting is something I can do 98% percent of the time even if I am quite sick, so it is amazing to have something like that in my life. I am also completing a certificate in Arts and Cultural Management online from Grant MacEwan University that I have been working on for a few years now.

How do you manage work and school with chronic migraine? Can you share any coping or planning strategies that you find useful?

To balance work and school I first do a lot of upfront communication with my employer and with my school professors and staff to make sure they understand my condition and how it can affect me. I am registered with the Disability Accommodations office at the University. Then, I am a very careful planner and make sure that I stay well on top of my work and school so that I always have a buffer if I need to take a few days off being sick. I do plan in a way that no day will have too much work in it but also will allow me to get ahead of schedule. As I said, I do both work and school from home so I can work in small chunks and then rest, eat, walk and nap in between.

What coping strategies do you use to deal with chronic migraine?

The most important thing I’ve done to deal with migraines emotionally is to accept that I have them and will for the rest of my life. When someone first suggested that I needed to do this, I was incredibly angry because it seemed so wrong to accept something like this into my life. Doing so has allowed me to move forward and focus on what I can do. I see a psychotherapist once a week to work on coping strategies which has been extremely useful and made me much more resilient. I have generalized anxiety disorder and have had depressive episodes so I keep a close eye on myself and have my husband and doctors do this as well to notice any flare ups. I find it very important to catch them before they get too bad because if I get into bad mental state my migraines will spiral out of control.

What do you wish people knew about migraine?

I wish people knew that migraine is more than just a bad headache, that it is a neurological disorder that causes you to experience widespread symptoms and severe disability.

What else would you like to share?

For people with migraine: You are enough, and you do enough.

Readers, we’d love to read your story! You can submit it (and upload pictures) at: What’s YOUR Story?

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