Free My Brain From Migraine Pain

This is where I am now as I write you. A beautiful lake in the mountains, where I come every year with a group of friends and extended family, and hike, swim, kayak, and rock on rocking chairs on a big porch overlooking the lake. So why am I writing now? For one thing, it’s been pouring much of the week! For another, I spent yesterday in my room with a migraine. A friend posted this link to a Scientific American article on Migraine disease, and I wanted to share it. She called herself a nerd for having a Scientific American subscription; I guess that makes me a real Migraine Geek for choosing this for my vacation reading! But it’s really fascinating!

Here’s the link to the article, which explains and summarizes new research into how migraines actually start in the brain and central nervous system: Why Migraines Strike. It’s a long article, but well worth reading
to better understand what is going on in our brains, and new possibilities for treatment. I think the most important point, made by the authors in the last paragraph, is that the evidence is overwhelming that this is a real, congenital disease, a significant difference in brain function. Wave this article in the face of those who still won’t believe Migraine is a disease! A few points that really struck me:

Read the article and let me know what you think. A few of my non-migraineur friends and relations up here even found it interesting. More fodder for helping others – and ourselves – understand!

Handling Migraine Challenges: Helping Others Understand

I’ve been asking e-course subscribers* what they find to be the biggest challenge in managing their Migraines. Many of you have responded. While I’ve written individually to everyone who responded, we all have so much in common that I wanted to share some of what I’ve gathered from your responses. This is kind of Megan’s Dear Abby for Migraineurs.

We all know that we are challenged in many ways by Migraine disease, but the majority of subscribers included something along the lines of “helping others understand.” How do we help others, the non-migraineurs who are important in our lives, to understand our disease, how it effects us, what we can and can’t do about it, and how it will effect them?

The first is coping with those who judge us. “Oh it’s just a headache she’s being a baby.” “Oh so you have another of your little headaches?” “Why do you always have a Migraine when I need you to do something?”

People have all kinds of reasons for judging. Sometimes they want to feel superior. They may want to distance themselves from you, your problems, your pain. It’s almost a superstition at times; if they don’t sympathize, if they don’t believe in your pain, they can pretend it has nothing to do with them, that nothing like this can ever happen to them. Some disability advocates refer to the non-disabled as “TABs” – standing for Temporarily Able-Bodied. A potent reminder that disease and disability can happen to any one of us.

What can we do with those trying to feel superior? We can think of nasty responses to put them in their place, and that can be a fun exercise when we’re angry. The only thing I think is really effective is to speak our truth – tell the truth about what it’s like for us. Some of those people will hear. Some of it will sink in. This is more about Coming Out of the Migraine Closet. And if these people are not important to us, how much do we really need to do? We can choose how far, and when, we want to be advocates, and we can recognize that not everyone will understand us, not everyone will be our best friend. The job of advocacy takes a long time, and while I believe in educating people, it’s okay not to face down every single person every single time.

When important people judge us, the people that matter in our lives, I believe they do it out of pain. There is the pain of what they lose to Migraine disease. Our companionship, having fun with us, our help, our ideas, our input. Our work and productivity. There is the pain of seeing us in pain. Of wanting to help. Particularly in the case of parents and life partners, there is the pain of wanting to be able to fix it, make

it all better, make it go away. The pain of their powerlessness in the face of this disease. When we can’t face pain, or understand it. we look for someone or something to blame. “Why can’t you take better care of yourself?” “It’s all in your head.” “You have to learn not to stress out.”

The answer is in communication. If people care about us, it’s worth doing whatever it takes to help them understand. To sit down, at a time when no one is upset, and tell them what it’s like for us. Give them information they may not have about this disease. Teri Robert has a great resource, Understanding Migraine Disease and Migraineurs, which is a letter you can give to those who don’t understand.

But this brings us to the second issue, which I suspect is actually a bigger issue than what the others think. First, before we can ask them to understand, we have to understand ourselves. I think this may be the biggest ongoing challenge. We have to understand, and accept, that we have a disease. We didn’t choose it. We didn’t cause it. We may be scared, confused, upset, frustrated, worn down and in pain. But we are not lazy, we are not malingering and we are not making it up.

Even more of you wrote about your worries about effecting others than about actual judgment from others. “Feeling like I’m a burden on my family.” “This disease affects everybody around me and it’s not fair. Neither for me nor for the others.” “Having to stay in bed and my hubby having to take over.” “I want my clients to be able to depend on me but sometimes I cannot be there and that really bothers me.”

We want to be useful, to be helping and participating with those we care about. The first thing we have to do is to accept that we have a disease that will interrupt our lives, take us out of the action, make us rely on others. Inside of acceptance, we can begin to see how we can help, what we can do. Inside of understanding, we have options.

*The Six Keys to Manage your Migraines and Take Back your Life – sign up for this free e-course in the upper right corner of this page.

God Grant me the Serenity to Accept the Migraines I Cannot Change

God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

This simple prayer has seen me through family issues, recovery from major illness, life crisis and transitions, grief, job loss, financial difficulty. It is the mantra I repeat as the pain takes over my head, as I wait for my meds to work, as I practice deep breathing to relax my mind and body. It keeps me focussed where I need to be, in knowing what I can change and what I can’t, not wasting my energy where I cannot change something, not sitting in useless despair when there is something I can do. It also keeps me in the moment. I cannot change anything in the past. I can only change the future by taking the next right action to lead me where I want to go, not by wishing, hoping, fantasizing or sitting immobilized in fear.

There’s no way for me to write a post about spirituality without talking about what I believe, which is deeply personal and which I rarely discuss. I grew up with a Jewish mother (from a not very religious family) and a father who was the son of Presbyterian missionaries, celebrated holidays from both religions but was raised pretty much as an atheist, and then became a Quaker (along with most of my family) as a teenager. Spirituality and faith may never be a simple matter for me. I don’t consider myself a religious person, but I am a spiritual person.

There’s no way to write a post about spirituality, I think, without turning some of you off. Some may already be turned off by the use of the word “God.” Some were turned off by my description of my unusual religious background. Some will be excited by it and see it as an opportunity to convert me. Please resist that temptation! Some will be turned off in a moment when I tell you that I consider myself to be a faithful agnostic. What does that mean? I have faith in a power greater than myself, in a power for good, the power of love, a power that unites people, incites altruism, brings us to care for more than our own selfish interests, “that of God in every man.” I believe there is more out there than we can see, perceive or know in any scientific sense. But I’m… blessed if I know what it is! I don’t even think it’s important for me to know what it is!

How does this help me with Migraine disease? I don’t go down the road of “God gave me Migraines for a reason.” Whatever else I believe, I can’t get behind the idea of a God who causes suffering, for any reason. I think more that we live in this gloriously complex world where we have sunsets and earthquakes, roses and poison ivy, kittens and sharks, senses of humor and migraines. It’s a complex system that somehow all works together, and we are part of it, warts and all. Migraines and all.

I do believe, though, in my God, my higher power, as a comforter. As the force of love, of good. To help me through pain, to help me remember that I am not the pain, that I am more than the disease, that I am here to help others, to make the world better. Sometimes in the midst of a migraine, I have a moment of feeling like this is all there is, no world exists outside the pain. I say the serenity prayer. It reminds me that there is more. That I am more. That another day will dawn when I am without pain and can get on with living. That the beauty of the world is still there waiting. I do think it takes faith to live with Migraine disease. Ridiculous faith and unconquerable hope. I am amazed by the ridiculous faith and unconquerable hope I see in my fellow migraineurs. And I find serenity there too.

July Migraine and Headache Blog Carnival on Spirituality – Deadline Tomorrow

Don’t forget to submit your entries for the July Headache & Migraine Blog Carnival, which is being hosted at Somebody Heal Me.

The July theme is “How Spirituality Helps Us Cope with Migraines.” Entries on any topic that is particularly interesting, educational or inspirational for headache & migraine sufferers are also welcome. Your blog need not be limited to the topic of headaches and migraines to participate. If you have relevant posts to share, you’re encouraged pass them along.

Entries are due at midnight on Friday, July 11th. They may be submitted through the form on the carnival website or directly to Diana by e-mail.

If you would like to be added to Diana’s carnival mailing list to receive updates and reminders or are interested in hosting a future edition, please send Diana an e-mail at somebodyhealme@dianalee.net.

Coping with Migraine: Claims of a “Cure”

I was recently presented with a dilemma here on Free my Brain. I want to encourage dialog and exchange of ideas, but I don’t intend to provide an open marketplace for sale of migraine “cures.” (Though I will gladly support and even promote helpful products and services.) Migraine is a complex, genetically based, neurological disease. The frequency and severity of migraines vary enormously from person to person; so do the number and complexity of triggers and other contributing factors. What we know now is that this is a neurological disorder, a differently ordered nervous system, if you will, which has existed throughout human history. Like many congenital conditions, there may have been a valid evolutionary reason for this mutation at one point. Maybe migraineurs were the human barometers, predicting disastrous weather changes for primitive societies. I had fun speculating on the evolutionary basis of migraine in the post Our Ancestress: A Fable.

I have heard from many people who have done just one thing and their migraines have gone away. To them I can only say mazel tov! (Congratulations!) Here is a bouquet of flowers to celebrate! For some it is eliminating just one trigger. For others it is a particular nutritional supplement, a practice of meditation, regular exercise, a medication, a surgery, pregnancy, menopause, a life or lifestyle change. I don’t know if there are statistics on how many migraineurs find relief from just one thing. I do know there are large numbers of us out here who need to find a combination of factors to manage and control our migraines. Here is a bouquet of flowers to console us! There is no “cure” for a genetically based neurological condition, any more than there is a “cure” for my red hair and green eyes. (Well, another 15 – 20 years may pretty well eliminate the red hair.)

A great place for some very basic facts and information about Migraine is the recent quiz at My Migraine Connection: Dispelling Migraine Myths. The two books on migraine featured in the left side-bar on this page are both great resources for learning about migraine and how to manage it. There is much we can do. For most of us, we can reduce our migraines significantly. You have probably heard me say before that I have reduced my own migraine frequency by about 50% through use of abortive medications, supplements, trigger avoidance, relaxation and meditation, and lifestyle changes.

Someone submitted a comment to one of my posts stating that 1) Migraine isn’t a disease; 2) there is a cure for Migraine “within us;” 3) he had over 20 years of migraines which are now gone; and 4) you can “retrain” yourself so you have no more migraines; he then went on to promote his methods. I am genuinely happy for the commenter that his migraines are gone. I am certainly curious about his methods, and glad that he wants to help others. I don’t mean to suggest he had any but the best motives. But I am wary of anyone’s claim to have a cure. After some deliberation, I decided not to publish the comment and link.

There are two ways to look at “retraining.” A nervous system which can be easily triggered into a Migraine attack can be viewed as an over-excitable or hyper-reactive nervous system. Regular practice of meditation and relaxation can help us reduce the excitability of our nervous systems. Note that this is not a “cure;” it is a supportive exercise or practice which can strengthen our system’s ability to resist triggers. You could call this “retraining.”

But there is another view of retraining which comes from an idea that Migraine disease is psychologically generated. It is not. It is a real, physical condition. It is no more psychological than epilepsy or scoliosis. I view with rage books like Louise Hay’s “You Can Heal Your Life” which suggest that right thinking can solve all our medical problems. She suggests that “Migraine headaches are created by people who want to be perfect and who
create a lot of pressure on themselves. A lot of suppressed anger is
involved…”

And so, if we work like crazy in therapy, meditate, recite mantras and do whatever highly subjective steps Hay seems to think will enable us to let go of the anger and pressure, if we do all that and we still have Migraines, then what? We failed? It’s like telling someone the devil is causing their Migraines and they just have to really believe in God. “I do believe!” “If you really believed the devil would leave you and your Migraines would be gone!” “But I really do believe…” It’s just a very sneaky way of blaming the victim!

I wish we could do a scientific study of people who want to be perfect and who put pressure on themselves. In the first place I bet you that’s at least 75% of the population. And I bet you dollars to donuts that 12% of all the perfectionists would turn out to have Migraine disease. And I bet that 12% of all the non-perfectionists would have Migraine disease too. What’s the incidence of Migraine disease in the general population? 12%! I think you get my point.

I have been told that if I only distinguished the beliefs from my past that were making me have Migraines, they would disappear. I will admit I tried to do that. Like anyone else, I have a past and beliefs were formed in it! Some of those beliefs are limiting to me. In a life of nearly half a century, with plenty of self-help, support groups, personal development courses, and therapy, I think I’ve managed to identify most of those beliefs. So why am I not cured of Migraines? Is it my fault? Or, wait, could it be that I have a genetically based, incurable neurological condition? Hmmm… Which is the more logical conclusion? And which is more empowering?

For me, the answer is clear. I am 49, a woman, 5’2″, a redhead, a migraineur. These are facts. I get choices about what I do with those facts. I am choosing to vigorously pursue better and better Migraine management. I am not wasting my mental or emotional energy on “cures.” Or at least I won’t, once I’m done with this rant!

Curing is good for meats, cheeses, wines, paints… Maybe our heads don’t need it?

Migraine? Where do I Start?

Do you have migraines? Severe, disabling head pain, sometimes accompanied by flashing lights and other visual disturbances, usually accompanied by nausea, light and sound sensitivity? If you do, you know how Migraine disease can impact your life.

And while dealing with all of this, you struggle to remember that you are more than just your migraines.
You are not just a patient, or a chronically ill person. You are a unique human being with things to contribute, people who love you, talents and strengths.

If you fit these characteristics, the first thing I have to tell you is, there is hope. While there is no cure for Migraine disease, there are many proven strategies and treatments that can reduce your migraines
and enable you to take back your life.

Many of us struggle along for years, either with or without the diagnosis of “Migraine,” taking pain killers and coping with the migraines when they come, and then something happens. The pain gets worse, the attacks get more frequent, the symptoms change; suddenly what we always did to cope doesn’t work any more. We need answers. We pick up a book, talk to a doctor, search the internet. And we discover there is a lot of information, a lot of misinformation, and loads of people trying to sell us “cures!”

I wrote the free e-course “The Six Keys to Manage Your Migraines and Take Back your Life” to help people in that situation – people who are trying to get the information and support they need to cope with, manage, and recover from debilitating migraines. I wrote it to help people start down the path to managing their migraines and taking back their lives.

In the The Six Keys to Manage Your Migraines and Take Back your Life we discuss:

I would love to have you use the course as a resource for yourself as you work on managing your migraine disease. If you’d like to register for The Six Keys to Manage Your Migraines and Take Back your Life just fill out the box at the upper left corner of this page. The e-course will be delivered to you by email every two days over approximately two weeks. As you receive each lesson, take some time to think about how it applies in your life, and follow the action steps included in each lesson. I will be available by email for help and feedback as you work your way through the course.

For over ten years I have worked to help my clients live healthier, more productive lives. I am certified as a life and business coach; I am also a migraineur. I have succeeded in reducing my migraine frequency and severity by over 50% through a combination of medication and lifestyle approaches. I have run my own business for fifteen years while managing Migraine and several other chronic illnesses. I am committed to helping people live healthy and productive lives, creating a thriving world we all want
to live in. For those of us with Migraine disease, that means more than relief from pain – it also means living the best lives we can, using our talents, and knowing our strengths.
This is the game I love to play. You can play it with me!

Cave exit photo courtesy of David Wilmot; Smoo cave waterfall photo courtesy of Subflux

My Migraine Story

What’s your Migraine story? We all have one (all of us with Migraine disease, anyway). Having a sensitive nervous system sets us apart from the majority of people around us, and we all go through a process of realizing or coming to terms with that. With what it means to us and with how it impacts us. That process and story have become clearer to me as I have entered the on-line Migraine community, in this curious role of migraine blogger.

I have worked as a coach for many years now, helping people set goals, make choices, and live powerful lives, both in personal and business contexts. In the course of that work I have had to make many accommodations to my Migraine disease, my chronic fatigue syndrome, and my recurrent sinusitis (to name the major culprits). I have had the privilege of helping a number of other people with chronic conditions figure out how to structure their lives, businesses and careers so they can live fully despite their illnesses. The moment of truth for me came when I realized, about 7 months ago, that my chronic illnesses are not just an impediment in my life. They are an opportunity to share my professional tools and skills, and the wisdom I have accumulated, to help others manage their lives with Migraine. I was already doing it, but I had one of those moments where perception shifts, and I saw that this could be a major focus for me. Call it an epiphany, an aha, or a moment of madness, but here I am.

In my own journey it’s not a bad thing to be looking at my life through the lens of Migraine disease. I am not interested in having that be all that defines me, but it is dangerous to ignore it. I have questioned a lot

how my life might have been different without this condition. I approach this question now after nearly a half-century of life.

I’ve had migraines since at least my teens. I don’t remember the first, but at 17 after
surgery at Montefiore Hospital in the Bronx (that’s another story), leaving the hospital we drove past the Montefiore Headache Center and I thought “Wow, someone actually treats headaches? Someday, maybe soon, I’ll have to go there.” So I’m guessing I had migraines before 17. Certainly, the first few I remember clearly, in my mid-twenties, I was already calling them migraines. I could distinguish the headaches with nausea, vomiting, and nearly unbearable sensitivity to light and sound, from the regular, run of the mill headaches.

In retrospect, migraines have had a big impact on my life and my choices, even though they didn’t become frequent for me until my early forties. The biggest impact in my earlier years was on my career. I
completed law school and went to work at a big Wall Street firm. Everyone who knew me was surprised by that choice, but for me it was important to prove I could succeed in a high prestige, high pressure
world. I proved it for two years and left. In the meantime I had some doozies – vomiting in the gutter in NYC became a familiar shame in my life. I would have told you at the time that my migraines were triggered by stress. But in retrospect, those moments of high stress came with sleep disturbances (pulling all-nighters to get a brief finished or prep for court), excess caffeine, and the poor eating that went along with them. I went into the less pressured environment of a legal services office, and migraines became less frequent, until after my first child was born. Then I had the new pressure of juggling baby and child care, parenthood, chronic lack of sleep, with part-time legal work. Oh, and let me tell you about part-time legal
work. Part time in the law is like 80+ hours this week and none for the next 2 weeks, not like “I’ll work Monday, Wednesday and Friday when I have child care!” A set up for stress, exhaustion, a frantic life. By our mid-thirties we had two kids, a house, a yard, a mortgage, and one of us (me) got sick a lot.

I left the practice of law a decade ago and began doing work that I could structure in a way that worked in my life. Writing and coaching. Doing that work while making sure that I slept enough, ate right, used meditation as a regular practice. I made those career and lifestyle changes just in time to develop anaphylactic allergies to pain-killers; just in time to have a sudden increase in my migraine frequency from a few a year to a few a week.

To tell you the whole story would require a book. I’ll let you know when I’ve gotten it written. The main thing I am looking at today is who I am – as a migraineur, yes, and as me, who is much more than just this disease. I have always thought of myself as tough. You can laugh if you want. Yes, I’m rather small and soft, not particularly athletic, and I’m not a mean person (though I can be sarcastic). There’s a mental toughness, though, a determination to keep going, to build, to create. And on the other side of that, I have to accept my delicacy. We are sensitive, we migraineurs. Sensitive to our environments. Vulnerable to odd things that don’t bother other people. I can’t seem to change the fact that I get sick a lot.

For a working symbol, I’m going to use my Iris. They are profoundly rich and beautiful. They do bruise and wilt easily. They need to be fed, watered and cared for. But they keep coming back, and growing, taking more ground. They are a connection to the splendor of life.

May Headache & Migraine Disease Blog Carnival is up!

Please go check out the May 12, 2008, edition of the Headache & Migraine Disease Blog Carnival. The carnival is posted at Somebody Heal Me. The theme of this month’s carnival is “How to integrate exercise into a life filled with migraines.”

There are lots of great entries on how to keep active, and then quite a few on other topics, including “exercises” in relaxing and calming our systems – a wonderful juxtaposition of inner and outer fitness! I contributed one of the “inner” ones, as I’ve been quite challenged on the “outer”[ front lately. The good news is that I am very encouraged by the posts in this carnival – read them – they will help!

Submit your blog article to the June 2008 edition of the Headache & Migraine Disease Blog Carnival using the carnival submission form or by sending entries directly to Diana by e-mail.

The June 2008 theme will be “How to Have a Fun, Healthy Vacation in Spite of your Migraines.” Entries are due by midnight on Friday, June 6th (the end of the day). Look for the June carnival to appear on Monday, June 9th.

– Megan

Coming Out of the Migraine Closet

When someone comes out of the closet, they take a stand, and they take a risk. For centuries, gay and lesbian people hid their identities in order to survive. Then a few people said “no more.” Decided to risk public censure, job loss, jail, so that things could change. And things have changed. Dramatically. There is still risk involved in coming out as a gay, lesbian, bisexual or transsexual

person, significant risk, but there has also been a significant change in our society around this issue.

Are we willing to “come out” as migraineurs? Are we willing to tell people we have Migraine disease? To stop complaining about lack of understanding and take a stand, educate people? Are we willing to stand up and be counted – “I’m one too!” – and change the face and the perception of this disease? I thank the GLBT movement for an extremely useful analogy.

Sometimes we need to vent about how people see our condition as “Just a Headache” or “All in Your Head.” I have done my share of ranting on this point. We don’t want to have to educate people. It’s really not fair to have all this pain and have to explain it as well! (Do you hear your Mom’s/Dad’s voice in your head, like I do, saying “but life’s not fair!”) I also know it’s hard to show up as someone with a disease. A diseased person. A disabled person. A limited person. We don’t want the world perceiving us this way. Perhaps more significantly, we don’t want to think of ourselves this way.

Diseased, disabled, limited – these are common, automatic perceptions of those with visible illnesses. Being “in the closet” is not an option with a visible illness. Here again, the amazing and courageous movement for the rights of disabled people has changed public perception. The acceptance and

accommodation of those who are differently-abled has come a long way, though there is still much further to go.

The blessing and curse of invisible illness is that it is invisible. No one can look at me and see that I have Migraine disease. If they are very perceptive, they might see that something is wrong if I’m in the midst of a migraine. No one can look at me and see that I have chronic fatigue. Sometimes they can see that I look very tired. No one can look at me and see that I have chronic sinus infections. Sometimes they can hear my hoarseness or congestion.

I think we all know what the curse of invisibility is. People do not understand our pain. They sometimes belittle it. Our employers may not accommodate us. Public events are not set up to make it easy for us to be there. Our dearly loved friends and family may think we are avoiding them, shirking responsibility, failing them. In a larger sense, invisibility means our diseases are under-funded, under-researched, medications are inadequate and specialists too few.

So what’s the blessing? When our disease is invisible, we can keep trying to show up as “normal.” We can avoid having potentially unpleasant conversations. We can avoid pity and put-downs. Of course, it’s a mixed blessing because people do see that something is wrong. I suspect some of the put-downs come from people seeing something is wrong but not knowing what it is. I think I’d rather be seen as someone with a chronic illness that interrupts my life, than as a messy flake who can’t be counted on to show up!

We need to remember that we migraineurs are 12% of the population. 12 out of every 100 people. 3 out of every 25! Whoever you are talking to, chances are they know many, many migraineurs besides you! Even more significantly, according to some estimates, 40% of Americans have some kind of chronic, invisible illness. Whoever you are talking to, they have people very close to them with invisible illness!

Lately I have been way out of the closet as a migraineur. I am in this public forum, all over the web with my real name, as a migraineur. I have gone to my business contacts and talked to them about the work I am doing as a Migraine management coach – and telling them that has involved sharing something of my personal story. I am someone with chronic illness who has built a business around my illness. I help others build workable lives around their illnesses. I can’t do that while hiding who I am.

These days when I show up at my business networking meetings, people ask me, with great concern, “how ARE you?” I told an associate recently, “feeling great today!” He breathed a little sigh of relief and asked “So your migraines are all gone?” (Hey, wouldn’t that be nice?) He wanted me to be better! It’s the kind of reaction I’ve been avoiding for years. “No,” I said, “it’s a chronic disease. It’s the way my nervous system is made. I wish they were all gone. But today I’m feeling great!” He nodded, I shrugged, and we went on to talk about something else.

A few months ago I couldn’t have had that conversation. For now, I keep showing up, assuming that people are not malicious, they are just uninformed. And I inform them. Gently, and as appropriate. They ask me what I’m doing these days and I tell them I’m focusing on helping people with

Migraine, people like me.

So hey, migraineurs, are you willing to come out and play, out here with me, out of the closet? I’d love to have your company. We can change public perception. We can create a world more responsive to our needs, more accepting of who we are.

Free My Brain From Migraine Pain

Posts Tagged ‘Migraine disease’

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