Free my Brain from Migraine Pain

Migraine News from Between my Ears

A funny thing happens when you start blogging.  There is this little bit of celebrity that arises.  I can admit that like many people I once secretly wanted to be famous.  My friend Laura told me in High School that she pictured me as a kind of revolutionary leader, with thousands chanting my name.  If that had ever been my ambition, I'd have to say that I failed miserably.  I've made it through nearly 50 years of life and I don't think even dozens have ever chanted my name.  Not at the same time, anyway. 

But I digress.  I started this blog for a few reasons.  I wanted a place to share my thoughts on living with Migraine disease, and the other chronic illnesses I live with.  I particularly wanted to share my hope and strength, as someone who has come a long way in managing a life with these conditions.  I wanted to join the warm, intelligent, funny and committed community of Migraine and headache  bloggers and advocates who are making such a difference in the lives of patients and in advancing the understanding of this disease.  The big reason was this moment of truth I had almost a year ago, when I realized 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 wrote a bit more about that a few months back in My Migraine Story.

I didn't really start the blog to keep the world posted on the doings in my own life.  I tell a lot of stories, partly because I come from a family of storytellers,and partly because I've always made points (with clients and anyone who will listen) by telling personal stories, about things that happen and lessons I learn.  So it's been a lot of fun doing that here.  And lo and behold, I learn that people are actually following (to some extent) what's going on in my life.  Little old me, Megan, Rachel & Adam's Mom, Danny's wife, Joan & Jim's daughter, Jon & Ellen's sister, the lady in the house on the corner by the field, the little red-head... that one.  It's a small and gentle sort of celebrity, but I find when I don't follow up on things I've mentioned, sure enough, you're actually listening, and sometimes you ask.

So the news between my ears...

• I'm looking for an allergist to determine whether I should even pursue this Medication Allergy  challenge test idea, because as my friend Medieval Writer of Sparkling with Crystals reminds me, anaphylactic shock can potentially kill you faster than a doctor can save you, even in the hospital with a crash cart standing by.  
• I'm spending a little time, just a few calls here and there, my head and energy levels allowing,  volunteering for my candidate's campaign.  Please get out and vote for better health care!  You don't have to chance feeling well enough on election day; you can vote early in many states - go to Rock the Vote to check your state's rules. 
• My difficulties with the Topamax are settling down.  We'll see what happens when I go back to Dr. G and increase the dose next week!  Tingling has disappeared and the cognitive effects are fading.  An unexpected benefit seems to that it is functioning as an anti-anxiety med for me! I am a pretty anxious person by nature, and I tend to obsess on things, but it seems like the slight loss of focus I have on the Topamax means I can't focus on something long enough to really obsess and get anxious! Kind of weird - but I'm just not worrying as much!  MaxJerz of Rhymes with Migraine pointed me towards this piece on Health Central's Anxiety Connection indicating that Topamax is sometimes prescribed in combination with other drugs to treat anxiety.  Who knew?  (Well obviously, someone did, but not me!)
• I don't think the Topamax is having a major inhibiting effect on my Migraines yet, though I haven't had a really bad one in the month I've been on it.  I am doing a very slow titration to minimize side effects and will probably increase the dosage when I see my HA specialist next week.  Judith Warner wrote a pretty good piece about her difficulties with Topamax (not named, but quite identifiable) in the NYTimes today, but they didn't publish my comment.  I am trying not to take it personally!
• Our Health Insurance Hassles and Headaches may turn out to be a blessing in disguise, NO thanks to Oxford (who I will still refer to as the insurer from hell) because it looks like there are a range of better, more affordable options out there for us.  I got a lot of info that may help others, too, and will try to do a whole post on it soon.  For others who are struggling with insurance, if you have children, be sure to check out your state's insurance coverage for children.  Some states now extend that to parents of children 18 and under.  I know this is no help for childless people or those whose kids are grown; you deserve health insurance too!
• In the meantime, I seem to be developing a lot of Acephalgic, or Silent, Migraines (phono & photo-phobia, dizziness, without head-pain) in the evenings.  It's better than having the head pain, but still means I have to retreat to my cave (i.e. bedroom) for the evening and can't hang  out with the family much.  Bummer.  More to talk to Dr. G about next week.
• And, (a drumroll please...) my biggest news... by next week (I hope) I should be launching my new website, containing this blog and other resources for Migraineurs, including relaxation teleclasses - stay tuned for more!  Hard at work on it now - soft greens and yellows - looking pretty - can't wait...

Hope your heads treat you well and you have an AWAP weekend!
- Megan Oltman

We've moved! Come over to our new site www.freemybrain.com for new content on managing life with Migraines and chronic illness.

    

Topamax Trials

Just a quick update on my trials of/on Topamax.  No tribulations so far, knock wood (picture me  knocking on my head.)  I've just finished my third week on the minimum dosage.  This is too soon to tell whether it is working as a preventive.  I have had 5 Migraines in those 3 weeks - which is on the low side of average for me, but three weeks is not a good sample - any given three week period could be better or worse.  More to the point I may need a higher dosage for full effectiveness, and the medication takes some time to build up in the system.  

Topamax is an anti-seizure medication, originally developed for the treatment of epilepsy.  Its Migraine preventive effect was discovered in some epileptic patients who were also Migraineurs.  It is currently one of very few medications actually approved by the FDA for Migraine prevention, all of them originally developed for other purposes.  There are 100 other medications that have been effectively used to prevent Migraines; Topamax is not the only game in town.  It may be the first some doctors try, since it is fairly well known, but unfortunately also has a high side-effect profile.  For people who are sensitive to medications, as are many Migraineurs, this is a dilemma.

Typically people feel tingling in their fingers and toes, less often in the lips and other places.  I emailed my doctor after about a week on the stuff when I was having intense itchy tingling in my lips and nose, tongue and TEETH (who ever heard of itching teeth?), top of my scalp, behind my ears, my kneecaps, elbows, ankles, tops of my fingers, outsides of my thighs, shoulder blades, upper eyelids. It kept waking me up one night.  I was worried that this might be an allergic reaction.  Dr. G emailed back that unless there was a rash, it was probably not a problem.  I had no rash and the tingling disappeared the next day. 

The other side effect I was most concerned about was mental cloudiness.  Some people have reported so much mental fog and forgetfulness that the drug has earned the nick-name Dopamax!  I've had a little trouble with finding the right words, but that seems to be passing.  I've found that my ability to multi-task, or keep a sequence in my mind is somewhat impaired.  I have to concentrate harder, write more lists since my ability to make a mental list is less than usual. 

 I've been pretty sparse with the posts here the last few weeks and I put that down to adjusting to the new medication.  I am lucky that I'm not spacier still.  After nearly 50 years you get used to the way your brain works, and to find your thinking change is a big adjustment.  It's like re-routing around road work.  I've always had a good internal GPS system, but these days I have to pull out a map.  And check it again every few minutes.      

- Megan

                                Block head image courtesy of Stefan; road work image courtesy of Hubbers.

We’ve moved! For more on managing life with migraine please visit us at www.freemybrain.com

Why Do We Try to Get Better? Living Inside a Goal.

What are we getting better for?  What are we here for?  I realize these are big questions and challenging even for minds that aren't screaming with pain, let alone those that cope with frequent Migraines.  They are central questions to creating and sustaining the will and optimism to keep pushing through the pain and discouragement that comes with a life with chronic illness.  Searching for the larger, deeper meanings, a connection to humankind, the world, the divine, is an important part of the human experience.  There comes a time in our lives when most of us wonder what we are here for, what our mission is, what we are uniquely put on this earth to do.  Be it spiritual, altruistic, political, creative, there is something that sustains us, that pulls us forward.

It is easy to lose sight of this when we struggle with pain.  Ending the suffering becomes important enough that we can forget there is more to it.  I don't believe there is anything inherently ennobling in pain.  "No pain no gain" is a bankrupt philosophy.  People can achieve great personal growth out of learning experiences based in pain.  They can also become embittered, limited and frightened by pain.  People can achieve great personal growth without great pain.  There are no guarantees, no formulas.  My experience is that when we are living inside a known, expressed purpose or goal, it gives a larger context to our experiences that makes it worth moving forward, worth seeking out the learning, worth looking beyond the pain.

As a coach, I help people determine their goals for their lives - what possibilities they will create for themselves and the world, what they value most that they want to promote.  Of course if we are ill we want to feel better, but feel better for what?  Feel better so I can be a person who can squeeze every moment of enjoyment out of life, and give it to everyone around me?  That's worth feeling better for!  You get there at least in part, and as much as possible, by living that way today.  So we talked a few weeks ago in this blog about having fun, because your life is NOW, not someday when you're all better.  If your goal is to have a family full of love, have it NOW, today.  If you want to be creative, be creative now. 

My goal, in its most recent expression, is to build lives in balance - creating wellness, joy and abundance.  That means for me, my family, my friends, my clients.  It means that's how I approach my politics, my community, my world.  It means that's how I make choices about my day.  When I spend the whole weekend with Migraines, as I did this weekend, I need to think about what a life in balance looks like in that context.  For me this time it looked like staying in bed when I felt like I should be up and helping, taking medication when I didn't want to, accepting that two beautiful October days were going by with me inside, inviting my children and my husband to spend time with me in my bedroom, one by one, since I couldn't deal with them in a noisy group in the noisy downstairs.  It meant putting off this writing and some other work until today.  I'm glad my pain is mostly gone today.  But even gladder that I can be more active in pursuing my goal today.  

Think about what you're here for.  Your unique contribution, your humor, your helpfulness, your intelligence, your skills, your drive, your compassion, your biscuits, your strength.  Take care of yourself, your nervous system, your body and soul, so the world can have that, the gift you are.  Do what it takes to be well inside of that.  Get better for that.   

- Megan Oltman

                                Night sky courtesy of Adan Garcia; summer field courtesy of Zenera/Serena.

We've moved! Come over to our new site www.freemybrain.com for new content on managing life with Migraines and chronic illness.

Migraine, Chronic Illness and the Not So Happy Homemaker, or All in a Labor Day's Work

I do not claim to have ever been a great homemaker. I enjoy well organized space. I enjoy design, and line, and tweaking the environment around me for comfort, beauty, and efficiency. So perhaps I am a perpetually frustrated homemaker, because these joys are rarely ever mine. I live in a state of clutter, disorganization, confusion and catch-up. Uh-oh, now I’ve told the truth. Will you ever listen to what I have to say again?

Wherever you start on the spectrum from neat-freak to pig-pen, Migraine and chronic illness will hamper your ability to get it all done. I remember a time before my Migraines and sinus infections became frequent, before chronic fatigue reared its ugly head, and, let’s face it, before I had children, when my home was tidy on a weekly basis, at least. When Danny and I first moved in together I wanted to get up on Saturday morning and get the housework over with, and then enjoy the rest of the weekend. He wanted to lounge around on Saturday morning and get to it later. Which generally meant we’d be cleaning at 5 pm, when we had plans to go out later, and we would do less than I wanted, and I would worry about it and not get to relax at all. But this is a blog about Migraine, right, not about relationships?  I thought that issue was difficult at the time. What I deal with now is of a different order of magnitude.

I have a generous, hard-working and willing husband who tries to maintain order in our home, with or without my help. He is also a fabulous cook and does most of the cooking. I have a nearly adult daughter who is a willing helper when she has the time, and a son who has come a long way with being helpful. I am also the one of the four of us who is not diagnosed with ADHD. This means I am the only one who can really multi-task. It means I’m the only one who notices a lot of the clutter. It means that I am the Captain of this house. So if the Captain is in sick bay, the ship may end up on the rocks.

I have had, this past 12 months, the worst year for Migraine and the year with the most sick days, since I began my Migraine and wellness diary 5 years ago. That means the house is in an advanced state of mess. It had never been tidy, but it’s worse than usual. Deborah at Weathering Migraine Storms posts about her craft projects and I feel jealous – I love crafting too, but it seems pointless to decorate when everything is a mess. The energy I’d like to spend on creativity, or on organizing, is so often taken up with the basics, dishes, kitchen counters, laundry.

But I have to stop and count my blessings. Unlike some Migraineurs, I can still work for a living. So if my energy and time is limited, and I spend it helping to keep a roof over my family’s head, I can’t fault myself for the state of things under that roof.

My advice to you, and me: cut yourself some slack. Do the best you can and take the time to enjoy life.  Keep blocking out your time in the calendar to make the most of the time you have, working from your priorities.  See More Time Management for Migraineurs: Managing the Time we Have for some more ideas on how to do that.  As for me, today I’m post-drome and having some vertigo. I am doing my best to make my way through a back-log of dishes (the dishwasher is broken) and fold the laundry, with plenty of resting time in between. Happy Labor Day!

- Megan Oltman

                         Dirty dishes image courtesy of Easternblot - eva.

We've moved! Come over to our new site www.freemybrain.com for new content on managing life with Migraines and chronic illness.

Can Crying be Bad for You?

I believe firmly that it is good to express our emotions, rather than suppress them.  Sometimes we just need to cry.  Crying on a friend's shoulder.  Weeping at a funeral.  I've had several such completely appropriate crying occasions this summer.  Both times I got Migraines.  Today I have a sinus infection.   It's a crying shame!

I am speculating here, and make no claims to scientific accuracy in this post.  I'm wondering about the physiology of crying.  It's more than just salty water running down your face.  I don't know if anyone really cries like they do in the movies, or in literature, delicate trails of tears, without anything swelling, nothing disgusting.  I've certainly never been able to achieve that.  For me, crying involves swollen nasal passages, a red blotchy puffy face, a fountaining nose.  Altogether much yuck.  Crying is a well-known Migraine trigger.  I suspect the good old trigeminal nerve must be involved - it runs right through and controls all the regions involved in a sob-fest.  And then it must get irritated, and set those neurons on their merry way, doing their haywire Migraine thing.

I don't know if I can explain the sinus infection this way, but I'll try.  I'm not suggesting spontaneous generation - there must have been an infectious agent.  Who knows what rhinoviruses lurked at the airport, on the plane, in the rental cars, in the colleges and even friends' homes we visited.   But I suspect that my crying must have swollen passages and shut down my tiny sinus ducts, trapping some opportunistic organisms, backing things up and leading to infection.

Yesterday I attended a very sad memorial service.  A friend lost his wife - a bright, funny, lovely woman of 37.  Witnessing his pain, and the pain of her parents and siblings, all of her friends, his friends...  Well there was much weeping.  Completely appropriate weeping.  I felt knocked out for the rest of the day, and by evening I had a Migraine, my throat was sore and my sinuses were doing their nasty thing.  Today I think the weeping is still going on - just inside my head rather than on my face.

Like so many things that can trigger us, crying can't be avoided.  It's part of life.  Probably I would have gotten this infection anyway.   So I will remember LM from my bed today, drink lots of tea, take my vitamin C and zinc and magnesium, and hope this clears up soon.

- Megan

                                Crying clown face image courtesy of Prakhar Amba.

We’ve moved! For more on managing life with migraine please visit us at www.freemybrain.com

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

I try to live by the serenity prayer:

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.

- Megan
Wishing you serenity and freedom from pain

We’ve moved! For more on managing life with migraine please visit us at www.freemybrain.com

Happy Independence Day!

I'll be at the beach tomorrow with my shades and big hat, so I wish you a Happy Independence Day in advance.  I wish you independence from pain, from fear and from worry!

Here's a 4th of July garden for you, with red & white impatiens and blue& white hydrangea, and some cool shade and warm sun.

Enjoy!
- Megan

We've moved! Come over to our new site www.freemybrain.com for new content on managing life with Migraines and chronic illness.

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.

What's your Migraine story?

- Megan

We've moved! Come over to our new site www.freemybrain.com for new content on managing life with Migraines and chronic illness.        

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.

- Megan Oltman

Don’t forget your sunglasses, it’s bright out here!

                                                      Closet image courtesy of Matthew Blank 

                                                      ADA Road to Freedom image courtesy of Jay Wilson

                                                      Cave exit image courtesy of David Wilmot

 

We’ve moved! For more on managing life with migraine please visit us at www.freemybrain.com

Coping, hoping, moping and other strategies

I had a couple of posts on coping with migraine that I thought would work fine for this month's blog carnival, but I couldn't resist doing some on-the-job research.  Yesterday I had a splendid set of opportunities to get a migraine, followed by an opportunity to cope.

It went like this:  First, to create the desired research environment:

1.  Sleep badly.
2.  Rush through getting ready and go out in rush hour traffic to coffee with a business associate. Choose the hip, cool, NOISY coffee shop.
3.  Stay in the coffee shop for 2 hours afterwards doing professional reading with the noise battering your ear drums.
4.  Step out into the gorgeous Spring day with the Bradford pears in full bloom along the street (they are very pretty and I am allergic to them.)  Sneeze a lot.
5.  Lead a seminar over lunch.  Have the attendees show up late so your lunch is late.  Get ravenous before eating.  Then have an intensive seminar on a challenging topic, that you have never led before.
6.  Back at the office, discover a major error in your publication that will cost you money you can't afford.
7.  Receive worrisome news about someone.
8.  Cry.

There.  A near perfect research environment.  The only surprise was that the migraine pain was mild, and didn't begin until about 6 pm.

And on to the coping:

1.  Unsure yet whether it's a "real  one" or just a tension headache, take the mild and mainly ineffective pain-dullers available to an allergic person like me.  (Endorphigen  D-Phenylalanine supplement and Magnesium Choline Trisalycylic acid).  Drink a lot of water (16 oz or so).

2.  Take a fifteen minute gentle walk.  This will usually clear a tension headache for me.

3.  When these don't impact the head pain, eat a light dinner.  I cannot take my triptans on an empty stomach, as the ache and pressure in my trunk from the triptan will make me nauseous on an empty stomach.

4.  Take the blessed and cursed Imitrex.  (Blessed for usually halting the migraine, cursed for making my head go all stupid, making my whole body ache, and intestinal ickiness.)

From here on in, it's all about comfort.

5.  Receive hugs from husband and any offspring so inclined as to offer them.

6.  Hug kitty-cat who will probably not come snuggle on the bed.  (He comes once in awhile.  But generally considers our bed to be the territory of elder cat who died 7 years ago.  Can't convince him otherwise.)

7.  Lie down on comfy bed.  Lights low. Soothing adobe-orange walls.  Many pillows. And my stuffed animals.

Wally is the perfect size to hug.   

Pepito is very soft and exact holding-in-hand size.

Willy the Wooly Mammoth is really Danny's, but I borrow him for my other hand (he's my favorite but don't tell).

7.  Buckwheat filled eye-mask can be cooled in the freezer, blocks the light, and puts a soft comforting pressure on my eyes.

8.  Husband or offspring checks on me after an hour or two, usually bringing cups of tea and medicinal dark chocolate.

9.  Gentle comedy on the tv goes a long way.

10.  Sleep.

- Megan
There's got to be a morning after.