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Life and Migraines go on…

June 7th, 2011

It’s ten o’clock on a Tuesday night and I have a little bit of a Migraine - one of those left-over ones. Left-over Migraine is not a clinical diagnosis, mind you. Just the way I describe it - had a nasty one Saturday and all day Sunday and then a bit of a sore-headed post-drome yesterday, which morphed back into a full-blown head-banger by bedtime. And here we are the next day still sore.

A few years ago this was par for the course, and I would have strings of days like this most weeks. Now I am very happy to say that most Migraines I get are mild and abort easily and resolve completely inside of a 24 hour period. Of course whenever there’s an exception, like this week, I get afraid that this will be the new normal - that my chronic days will return. That’s one of those moments when I have to thank my fears for sharing and move on. Get grateful, recognize how far I’ve come, and let go.

So the good news - it doesn’t happen to me often these days. The bad news - I have a harder time taking it seriously and really stopping the action and taking care of myself than I did when it happened more often. Of course, other things have changed, too. Instead of being not very gainfully self-employed I now have a 3/4 time job and work on building a private mediation practice in the other theoretical 1/4 of my time. (It’s theoretical because… with fibromyalgia, episodic Migraines, extremely strained finances, a job-seeking husband and a teenager with ADHD, a dirty house to try to keep somewhat on top of… I ain’t got much time!)

I’m still not all that gainfully employed, but I’m glad to have a job. I went in a pretty short time span from being semi-disabled to being almost the sole support of my family. Times are tough. I can relate to the many Migraine sufferers I have interacted with through the years who say “I don’t have time to be sick.” I can dig it. I’m there. I can only work as much as I do because I have gone from chronic Migraine back to episodic Migraine, but I do worry that the level of stress in my life is such that I could get kicked over into chronicity again. (I don’t care if that’s not a word - I like it anyway.) So… I meditate. I take walks. I pray. I put everything aside and just relax. I practice my affirmations. I get up in the morning and get on my happy face and face another day. Keep putting one foot in front of another and doing the next right thing.

I actually came on here tonight just to say, I wish I had more time to blog. To read and comment on all my beloved chronic pals blogs, and post on My Migraine Connection, share on line, and all that. I had over 200 comments waiting for me here, over 180 of them spam. I haven’t found the time to install the stronger spam filter that the fabulous Diana Lee recommended to me. I haven’t found time to reply to the many people who went on the contact page and asked me if I’d like to do a link exchange (yes, yes, no, yes, maybe, let’s talk…), or asked me if I want to hire them to do SEO for me (no, no, no, leave me alone, don’t you think I have my own people to work on that?), or asked me for advice (oy vey).

The good news is life does go on. I am so glad to be down to an average of 2 - 3 Migraines per month. This is huge. There’s a whole lot of living that can fit around 2 - 3 Migraines a month. I wish that living didn’t happen in the midst of a whole lot of economic hardship, but how much worse it would be to be sick like I used to be and going through this. So I guess I can put up with a left-over Migraine, for now.

Hang in, maties, it gets better. That’s what I’ve gotta keep on believing, anyway.

Love,

Megan

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Posted in Communicating, Managing | Comments (61)

Love Beats Hate: I get by with a little help from my friends

November 20th, 2010

I’m coming late to the party. It’s 3 days after the official Love Beats Hate event and I haven’t even managed to read very many of the posts - I’m working on it. But I figure keeping the love alive is not a bad thing to do. And I want to be part of the party.

What can I say? Perhaps nothing that hasn’t been said before. I love you bloggers and online health activists and I am honored to be among you. I was a busy person living my life when illness tackled me and brought me down. Life threatening allergies. Chronic Migraines. Crippling fatigue, which resulted many years later in a diagnosis of Fibromyalgia. Irritable bowel syndrome, with weeks of enervating stomach pain. On the hate side, I can truly say that I hate being sick.

I can feel very very sorry for myself. Even making this list brings a tear to my eye. But it’s not just the illnesses. It’s the years I spent fighting, not accepting, pushing myself way beyond my limits, thinking of myself as lazy and undisciplined, longing for the day when it would be all better. I neglected the people I love with my head in the clouds trying to build a different reality than the one I live in, trying to force the outcomes into a shape I wanted. I never paid enough attention to where I was, to my home, my children, my work. I thought that if I kept pushing, somehow I could make it all better. I regret those years. I listened to those who think that illness is a result of wrong thinking, that we can transform our way out of illness. I will not say that there is an evil intention in this type of thinking, but it led in my life to evil results. I felt guilty for my illnesses. I hated my illnesses, and myself for having them. I tried to ignore them and push past them. Until I was too sick to do it any more. And I finally found some doctors and therapists who could help. I recommitted myself to meditation and conscious relaxation, acceptance and love, and learned little by little to accept the highly sensitive, aching weary frame that I live in.

Three years ago I started participating in the online Migraine community, and then the larger chronic illness community. I had something to share, to offer, with the relaxation techniques I had learned, and the coaching skills I used professionally. I decided to create this thing called Migraine management coaching, and to go talk to others with my illness. I won’t say I haven’t had a contribution - I think and hope that I have. But what looked at first like a side benefit - the outstanding relationships I was forming with others who understood my life - turned quickly into the main event.

The darkest days of chronic Migraine, among the sickest times in my life, were lightened by the time I spent on My Migraine Connection, and blogging, and reading and commenting on others’ blogs. I became a part of a community, a loving, supportive, funny, vibrant community. I got such deep and caring help with some of my hardest struggles.

Then I discovered Facebook and a surprising thing happened - my chronic illness community and my other communities - family, friends, colleagues from the many parts of my life, all began to come together. When I post about pain or illness, many will comment who understand and are with me in the experiences, but the others in my life will also express sympathy, distress, let me know they are with me too, though they may not have my same issues. It has been enormously healing. I want to say I am sorry to all those I love, and who love me, who I neglected, or pushed away, or tried to force into seeing things in a particular way. I was running away from myself. It wasn’t until illness brought me to a standstill, until there were no more reserves of energy to keep pushing, that I became able to accept, and out of accepting, express, and explain, and have you get what my world is like.

After three years of working at it my Migraine disease has moved from chronic to episodic and I have long stretches of freedom from pain in the brain. I am back working full time, or close to it, at law and mediation. I wish that I could just help chronically ill people full time, but I had to get back to earning a living. I am exhausted by my work and can’t seem to think much at the end of a long day. My fibromyalgia and irritable bowel are activated much more often than they used to be by the stress and exertion of my life. So I don’t spend nearly as much time on this blog, or on forums or other blogs, as I used to. I miss it. I wish I could do more. But I do check in with my friends, on their blogs, on Facebook, on Twitter, and I am present every day to how I get by with a little help from my friends. I am lifted up and cradled by you. I love you.

- Megan

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Botox News: Can I do Migraine Education without Getting Nasty?

October 21st, 2010

Have you heard the news? Botox has been approved by the FDA for treatment of chronic Migraine. I first heard it from Diana Lee at Somebody Heal Me, but it’s been in the press this past week. This is great news for many chronic Migraineurs. Health insurers who have been refusing to pay for the highly expensive treatment will now lose the excuse that it is not a standard, accepted treatment. The FDA approval probably doesn’t guarantee they will cover it, but makes it much more likely. Like most Migraine treatments, Botox doesn’t work for everyone. As I understand it, for some Migraineurs, the injections into specific points in their heads and necks paralyze muscles that otherwise would contribute to the triggering of Migraines. With FDA approval, the treatments will be available for a much larger group of sufferers.

I guess some jokes are inevitable. Just for the record, the injections are highly unlikely to be into the same spots in your face that would plump up wrinkles, unless you just happen to have a wrinkle on one of those trigger points. Sorry. But I just ran across someone joking about it, and it got my goat.

A friend of mine who is a M.D. and has a great understanding about Migraine, has been very supportive of me, and also happens to work in a company that manufacturers dermatological products (so you could see she has some professional interest in the topic) posted a link on Facebook to the FDA approval of Botox. I commented that it was great news. Another friend of hers (who I don’t know) commented after me, saying “suddenly, I feel a headache coming on. sign me up!” Okay, I don’t know if this woman is a Migraineur or not and I don’t want to go off half-cocked, but it put me on slow burn. First I kind of shrugged, then read it again and was annoyed and gradually I’m getting that agitated feeling in my stomach… that could lead to a Migraine, among other things.

I’m trying to get at my feelings. The implication that I read there is that it’s a joke that you could get Botox for a “headache,” that people should fake headaches in order to get cosmetic Botox treatments. It trivializes our condition, maybe completely unknowingly, but even so. I was inclined to let it go so as to not drum up trouble, but if I don’t take on an opportunity to educate, I’m not being true to myself.  So I’m going to answer her. If you’re reading this post on Facebook, I already have.

Of course I’d love to really let loose, but I want to educate, not alienate, so here’s what I’m saying:

Migraine disease is a serious neurological illness which is one of the top 20 most disabling conditions world-wide. Chronic Migraine sufferers have Migraines 15 or more days per month. For some of us, Botox helps prevent or lessen the impact of some of the Migraine attacks. The Botox is not injected in places that would help anyone with their wrinkles. It may be surprising, or sound strange, but it’s not a joking matter. I don’t think you intended to offend, but please understand that your comment trivializes a very real disease suffered by 36 million people in the USA alone.

What do you think? Am I doing right by our cause?

- Megan

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Posted in Advocacy, Communicating, Current Affairs, Medicine, Rant | Comments (67)

Becoming Trigger-Resistant

October 18th, 2010

I am very fortunate to have my Migraine days down to 3-5 a month now, and most of the Migraines are relatively mild and abort quickly. One thing I notice is that individual Migraine triggers are not so much of an issue, but a whole stack of them will still prompt a Migraine. For instance I can get by for a couple of days with not quite enough sleep, smell some perfume (or more often the bane of my existence, the heavy sweet Axe many of my son’s friends like to wear - Uggh!), be around some smoke, be in a crowded room, and I may get some little twinges that tell me to back down and do some breathing exercises, but they don’t develop into a Migraine. Then say all those things are present and a meal is delayed and my blood sugar gets low, and whammo!

I’m up to 30 hours a week of work at the law firm now, so there’s less flexibility for missing time. My boss is very understanding and lets me build my schedule the way I want, as long as it doesn’t interfere with the flow of work. But if I miss a day or half a day because of a Migraine, I can only make up the time by working longer hours another day, and a day longer than 7 hours (6 working and 1 for lunch) takes a lot out of me. Not that a long day will necessarily trigger a Migraine, but sometimes it does if it’s a rushed or stressful one. Usually the effects are less direct - a long day sitting up at my desk typing will trigger a fibromyalgia flare, and if I don’t manage some rest time to help the flare pass, it’s common to get a Migraine on the tail of the fibro flare.

I know I’ve been talking to you all for quite a while about relaxation exercises and breathing, and I use them nearly every day. They have certainly helped my transition back to near-full-time work. As valuable as they are though, I wouldn’t be where I am now without a good combination of Migraine preventives. Nortriptyline not only reduced my Migraines it greatly reduced my anxiety level and helped me sleep like a log most nights. Then lisinopril lowered my blood pressure and continued the job of reducing the Migraines.

I feel like I’m coming back to life! We have been out socializing nearly every weekend, and I’ve been getting walks in nearly every day again. Right now fibro is more of a problem than the Migraines. I’m finding it tricky to learn how to manage.

- Megan Oltman

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The Language of Pain - a review

August 29th, 2010

I recently finished The Language of Pain, by David Biro, M.D. A practicing physician in Brooklyn, NY, Dr. Biro also has a PhD in literature. This interesting combination of educational disciplines, together with Dr. Biro’s own experience as a patient with a blood disorder, leads to his thoughtful and philosophical writing on the isolating experience of pain. I presume that his earlier book, One Hundred Days: My Unexpected Journey from Doctor to Patient must focus more specifically on his personal (and unexpected) experience in bridging those worlds. The Language of Pain is a more general and outer-focused book, discussing how profoundly isolating the experience of being in pain is (be it physical or emotional pain) and how important it is to find means of expressing the experience.

The Language of Pain is an interesting read, pointing out that an understandable expression of the pain one experiences is necessary both to get proper treatment for the pain (or the underlying condition that causes the pain), and to keep people in pain from being isolated from their families, friends and community. Drawing on many examples from art and literature, Dr. Biro explores how metaphor enables us to take the diffuse experience of pain and put it in terms that others can understand. The book is illustrated with some of Frida Kahlo’s gripping paintings, as well as patient-generated works of art gathered by Deborah Padfield in a pain clinic in the UK, and other art. We read many passages from literature describing pain, disease, and bodily peril, from works by Tolstoy, London, Crane and Joyce, among others.

This is not a long book, but it took me a long time to finish. I found that some of the descriptions of pain were, well, painful for me to read. It may be that for one living with chronic pain, this book hits too close to home. Nor is it an easy read. His points are excellent, but perhaps Dr. Biro couId have expressed them in a more accessible manner. This may sound funny coming from me; an inveterate user of big words. I could have used less literary and philosophical analysis and more practical examples of how finding language for their pain has helped pain patients.

The book is subtitled “Finding words, compassion and relief.” Without doubt the writing is compassionate, and ignites the reader’s compassion. There was inspiration for me personally in the examples of words used to express pain; certainly I remembered them in my own moments of pain, and tried to be more conscious of expressing myself. It is the “relief” that I would like to have heard more of in the book. Maybe because relief from pain is something I long for in my own life, and for other sufferers. It wouldn’t be fair for me to fault Dr. Biro for not providing a magic wand! He pulls it all together very well in his postscript, stating:

More than just communicating one person’s experience, the metaphors of great writers contribute to our collective experience of pain. They add to our ever-growing repository of language, and to our ever-growing understanding of what it means to be human. Indeed, we should think of our great artists no differently than our great scientists. Both have profoundly practical goals; each works to help us understand and talk about what is not fully understood or communicable. But where the scientist shines his searchlight on the objective world, the artist strives to illuminate the subjective one.

One of the things that fascinates me most is the meeting and communication of our left and right brains, our analytical and intuitive sides, the scientist and artist in each of us. I love thinking about what having both an MD and a PhD in literature would bring to a person’s thinking and understanding of the world. Dr. Biro thank you, you have done an elegant job of sharing your thinking with us. I’ll expose my own prejudices as a coach when I ask, next book, would you give us a little more of how to use those two sides of the brain for relief in our own lives?

- Megan Oltman


To keep the FTC happy I will disclose that the publisher asked me if I might like to review the book in my blog, and sent me a free copy so that I might do so. They did not pay me to puff the book, and I won’t receive anything else from doing this review unless some of you decide to link in to Amazon and buy it there, which would net me a few pennies per book. The publisher has no doubt given up on me, as they sent me the book before it’s publication in January of this year.

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Posted in Books, Communicating, Managing, Medicine | Comments (0)

Happy New Year!

February 12th, 2010

What? It’s 43 days into 2010!

I know, but I haven’t posted since January 7th; I feel like I need to catch up with you all. Greetings from snow-bound New Jersey!

I just saw that Medical Assistants.Net listed me as “One of the Top 50 Health and Wellness Blogs to Watch in 2010.” If that’s the case, I’d better get writing!

It’s been a busy month and a half for me. I have returned to my professional roots and taken a half-time job as a lawyer. I love working with you all to help you manage your Migraines, but it’s not keeping me busy full-time. I’m lucky to have a good set of skills to return to, and a great firm owner who knows me, likes my work, and is very flexible about my health needs.

I haven’t missed a day for a Migraine yet, though I have to admit I’ve had a few let-down Migraines after busy days at work. I am adjusting to a new schedule. That takes some time for a Migraineur - our systems crave regularity, and tend to freak out when we change things up on them. It took a few weeks to build enough stamina to have energy left for the other things I do. I am very glad that my preventive medication works well for me, and that my years of practice in managing my Migraines have given me the breathing and relaxation skills to get me through.

When I left the practice of law in 2000 I thought I’d never be able to go back to the pace and demands without frequent Migraines. I’m happy to report that my Migraines haven’t increased at all. Even better, I seem to have a reputation around the office as a calm person and a calming influence. That would have shocked those who knew me a few decades ago! Learning to manage Migraines, to keep my system on even keel, has left me knowing not to sweat the small stuff, and yes, most things are small stuff.

I owe all my subscribers a newsletter, and I am backed up with a couple of book reviews I want to give you. I have some stories about medication allergies for you and some great new products to link to. The Migraine Support & Coaching Group is going well, and I’d love to have more of you to talk to in the meetings! I think I’ve got my new rhythm down enough to be back and talk to you more often.

I hope your winter is going well. Let me know how you’re doing!

- Megan

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Fibromyalgia - a New Context

January 7th, 2010

The context in which we look at an issue can make a huge difference in our way of perceiving and interacting with the issue. When I began exploring the on-line world of support for Migraineurs and chronically ill folks, I came very early upon Teri Robert’s site, Help for Headaches, and there on the site, she had this badge:

I wondered at the time, was this really empowering, to emphasize having a disease? It is a disease, but we can have an impact on our own health by developing an awareness of our own systems, and learning to relax and calm their reactivity. I had spent some years learning that myself and that’s what I wanted to share with others.

The more I looked at it, though, the more I got Teri’s point. I realized that for the many of us who have had our condition minimized and scoffed at, the recognition that we have a disease is empowering. Our problems are real, and biologically based; our pain is real. We live with the consequences of having a hyper-reactive nervous system. For those of us who have wondered what was wrong with us, if we were crazy, if we were somehow bringing the pain upon ourselves, it is empowering to recognize that we have a disease, not just a headache! Starting from the context of a disease, we can learn about it, learn what impacts our disease for better or worse, learn to manage the disease, and to manage our life with the disease. Acceptance is the first step, and gives us a foundation to build on. It makes it possible to move forward. We can say, “Okay, I have this disease. Now what? What am I going to do about it?”

For over 15 years, since I was pregnant with my son in the fall of 1994, I have been living with fatigue, lassitude, body aches, on and off difficulty concentrating, frequent sinus infections, difficulty fighting off disease, and, in the last 10 years, ever increasing Migraines. I have gone down many paths to address these issues. With regard to the Migraines, I learned a great deal about the disease, worked with doctors to find medication and supplement combinations that helped me, and learned to practice relaxation to calm my system. My Migraine frequency is down considerably. Not so the fatigue and general pain issues, however. I have tried many different nutritional regimens, and learned a lot about what foods are most helpful to my body. I have gone great lengths to balance my hormones, and have definitely seen an improvement in my overall health and stamina through doing that. No matter what I did, however, the fatigue and pain issues did not change much.

Many people with Migraine also have Fibromyalgia, and as I got to know more people with Migraine I heard a lot about the other disease as well. My reaction for quite a while was, “Oh, I probably have that one too, but I don’t want to know about it.” It felt overwhelming to me to have to deal with another diagnosis. I practiced active avoidance. Then I saw Dr. Young at Jefferson Headache Center and he listened to me talking about my fatigue, and he pressed the Fibromyalgia tender points, and I gained a new context. Thanks, Dr. Young!

I’m not kidding with the thanks. It was just like Teri’s badge above, the pieces of a puzzle came together. I already knew that my central nervous system had some serious processing issues, well this was just another manifestation of that. In addition to having my neurons fire off and produce Migraines in reaction to certain stimuli, I have an increased reaction to pain and exertion. If I bang my elbow, the pain moves out in ripples from the point, increasing for a time like an echo in an echo chamber. If I expend more muscular energy than usual, my muscles ache for days as if I had the flu. If I am active and push myself either physically or mentally, I have a kind of fatigue that is beyond tired; it is the bone-weary exhaustion of someone who has been pushed beyond the limits of their endurance.

I have gained a lot from the context of having another disease - Fibromyalgia. I have gained a community of fellow sufferers, who care, who understand, whose wisdom and experience are available to me. I have gained the relief of knowing that I am not lazy, or losing my mind, or fundamentally bad, I am a person with a(nother) disease. And this context helps me to find solutions. I know now that stretching helps, and I can push myself to stretch when my muscles hurt and I really don’t want to. I know that my fatigue is not something to fight or to cover over with caffeine, but that it is a signal to rest. I know that getting some gentle exercise each day, and gradually increasing my exertion, will help me. I know that there will be better and worse days, but that each day can be handled, one at a time.

I haven’t posted for a while, and I’m glad to say that my new Migraine preventive is helping a great deal. My Migraine frequency is down by about 60% over the past few months. The medication also helps to damp down my anxiety and makes me very sleepy. It seems to increase my REM sleep, which is a sleep stage that Fibromyalgia often steals away. Sleeping better definitely impacts the Migraines; it also makes me less fatigued and less anxious. So at the same time that I have taken on this new diagnosis, Fibromyalgia, I have seen some of its symptoms decrease.

I’m learning this one. It’s a listening to my body, to my inner sense of myself, in a new way. Similar to the way I already listened, a familiar tune but in a different key, perhaps. The biggest gain from the new context is another level of self-acceptance. I am not a bad person trying to be good; I’m just a sick person learning to be as well as possible.

- Megan Oltman

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How do we Celebrate and Still take Care of Ourselves?

December 14th, 2009

For a number of years, my husband and I hosted a big post-Christmas holiday gathering for my extended family. This gathering had gone on at my parents’ house for many years prior. Each of the smaller nuclear families (mine, my siblings’, aunt & uncle & cousins’) would have their own Christmas Day at home, and then sometime afterwards everyone would get together for a big collective meal and gift-giving. Since we all live several hours apart, this would generally turn into a weekend-long extravaganza, with many people sleeping over for several nights. The part where we were all together generally involved 14 - 22 people.

My family gets along well, and while some readers may roll their eyes at the thought of so many relatives gathered, it has been a largely joyous occasion. When my parents sold their big house and moved on to an apartment and then a retirement community, my sister took on hosting Thanksgiving and we took Christmas. We cut the expense, noise, tumult and confusion of the gift giving by drawing lots for gifts to adults, and cut the cooking difficulties by doing some degree of pot-luck.

But… I went on hosting these events some years beyond when some family and friends were questioning my ability to do it. I have been living now for about 14 years with chronic illness, and when hosting big events, there have been predictable outcomes. I would wear myself out, either with clean-up and preparation, or with running around taking care of the guests in my home, or with cooking, or with trying to keep up with the mess generated by my husband’s enthusiastic (delicious) and whirlwind cooking.

My challenged immune system would hand me an illness or infection a majority of the time. Or my sensitive nervous system would react to the added stress and noise and confusion by hitting me with a major Migraine. Or both. I would try to compensate by planning better, systematizing everything. This would both create more work for me and make my husband crazy due to my micro-managing. And then there were the crowds themselves for gift-giving or major meals, where I never do well. My head would be spinning in no time, my anxiety level would hit the roof with the noise and over-stimulation, and I would become cranky and short with people. I would spend some part of the celebration closed up in a room by myself in pain, and inevitably the guests would have to pick up a lot of the work it took to get through the weekend.

We moved four years ago to our current home, which is about 35% smaller than our last home. We did a huge renovation on this house and part of our planning was around how to accommodate a big crowd for Christmas. The time we have been in this house, however, has been the same time period as the worst of my chronic Migraines. We hosted one Christmas two months after moving in, with many things still in boxes and the construction not quite complete. We hosted  one other year. When we put many tables together to sit down for a meal, you could not leave your place at the table without 2 or 3 other people getting up as well.  When we tried to open presents in the front room with the Christmas tree, some people had to stand in the next room and look on. Another year we tried doing an abbreviated gathering when some family members were away, only inviting a few others. I had mixed feelings and was not clear with everyone about this, and hurt the feelings of those left out.

Last year, with tears and soul searching, we bowed out of hosting. We went to my sister’s for two big holiday gatherings, and we’ll be doing it again this year. My home will stay quiet; our Christmas day will be simple and relaxed; we will be with family in a less stressful space. But… I miss having my family here. I miss sharing my life, my things, my space with the people I love. In answer to the title of this post, this is what we are doing to celebrate and still have me take care of myself. But… I’m running  2 weeks at a time without a Migraine these days, and have more energy, and I have to admit I am thinking about how to take the whole thing on again - maybe next year. We’ll see.

How do you celebrate and still take care of yourself?

- Megan

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Expecting the Best, and Talking Straight

October 13th, 2009

I need to write to my recent, former Migraine specialist to tell him I won’t be coming back, and I’m having a hard time getting to it. I tend to dread upsetting or disappointing people, unless I am furious at them. I have nothing to be furious about with my recent doctor. I like him. He is a kind and caring man and a good doctor, and head and shoulders above the guy I saw before him who basically wouldn’t even treat me because I have medication allergies. I just was not thrilled with a number of things - how incredibly cautious he is, how very very long he wanted me to wait before changing dosages or trying new things.

He had something to say at most visits about the possible long term effects of using Migraine abortives.  I felt it was all very well and good to say maybe I shouldn’t use triptans in my 70’s, what about my unmanaged Migraines now? It was fine to say maybe I should come off a preventive after a year to see how I’d do without it, but why talk about that when we hadn’t even found an effective preventive for me yet? And I must admit the dread phrase “they’re just headaches” did pass his lips on one occasion. He seemed to think that going from around 8 - 10 Migraines a month to around 7 Migraines a month was good progress, but without really considering what the impact of those 7 Migraines is in my life.

Last month I saw Dr. Bill Young at Jefferson Headache Center, and I am thrilled to be in his care. The whole experience was what I think a Migraine appointment should be. The appointment includes an evaluation with a psychiatrist for any co-morbid emotional/psychological conditions that may be occurring. I have long wanted to have something to treat my anxiety, and my former headache doctor wanted me to go to a psychiatrist for that. I wanted to be working with someone within a headache practice, who could coordinate with my headache specialist, and perhaps find a medication that helped both conditions. That’s exactly what the doctors at Jefferson did, and I am now trying nortriptyline as a Migraine preventive which is also serving to make me less anxious than I have been in many years.

It didn’t hurt, I’m sure, that I already know and like Dr. Young. But there was much more to it than that. His level of understanding of the impact of Migraine disease, and way of asking questions to get that out, is truly skillful. I didn’t feel for one moment like I have to settle for lackluster progress just because I’m not as badly off as some.

I once wrote to a doctor who I felt had treated me really terribly, and laid out exactly why I wasn’t coming back. This is not a situation like that. I was treated well, not badly, by my recent doctor; I was treated with respect and caring. I just didn’t feel it was the best care for me, and I felt he could have gone further to understand the level of impact in my life, and to treat my Migraines more aggressively. I am glad he is where he is and if I need to go to an ER I will want to use his hospital. I guess there’s some valuable feedback I could give him, and it feels more than a little nervy to give it. I’m having a hard time being nervy.

- Megan

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Posted in Communicating, Medicine | Comments (5)

Migraines & Driving & Driving Migraineurs Crazy

September 30th, 2009

I may have mentioned that lately I have been writing articles for Health Central’s My Migraine Connection on legal topics related to Migraine, as well as answering some of the questions that readers ask on the site. A reader came on recently and reported that her driving privileges had come under supervision by her state’s Motor Vehicle Commission (MVC) because she had self-reported that she had frequent Migraines. The MVC was considering whether to suspend her license. She was asking what to do. This sounded like a nightmare to me; I was really distressed for her, so I did some research. In the first place I discovered, not too surprisingly, that her state’s MVC had broad powers to supervise, suspend, retest or otherwise question the driving of anyone they suspected might have any kind of medical condition that could make them an unsafe driver. Researching further, I learned that just about every state has given similar powers to its MVC.

My suggestion was that she get a statement from her doctor that she knows the signs of a Migraine and does not drive when she has one, and that she consult an attorney. She came back later and reported that her MVC had taken her medical documentation, made her retake the road test, but that they had not suspended or restricted her license.

I did some more research and wrote two articles based on it, one called Migraines and Driving Don’t Mix - reviewing cases which have found people driving under the influence of pain killers (legally prescribed for Migraines) to be DUI, and other cases which found people driving with a Migraine (not with medications) were not DUI. I did stress that Migraines themselves impair us - they slow our reflexes and reaction time, interfere with cognitive function, aura obscures our vision, the pain and nausea distract us. I even went so far as to say I wouldn’t be surprised to see a case somewhere in the future where someone had a Migraine, caused an accident, hurt someone, and was held liable or criminally responsible.

In the second article, called Migraines and Our Drivers License, I reviewed the Motor Vehicle laws which set up medical review of driving privileges, trying to make people aware that we could have our licenses reviewed or suspended if Migraines impact our driving and the MVC finds out about it!

It’s been an interesting few weeks for me on the inter-tubes - I did not make myself very popular with some Migraineurs over all this! One group of readers thought I was being condescending. On one site someone ranted about how if cell-phone talking, lane-changing speeding morons should be allowed to drive, why should Migraineurs be singled out? I was called “militant” and I’m not some people’s favorite person. Several people asked me to tell them how they are supposed to get to work, function, etc…

I think I learned a lesson about my writing style, and I’m going to do my best to be more chatty and down to earth when I’m delivering hard news. I think that’s what this was - a case of kill the messenger. I’m not the Migraines & driving police (or the anything police, for that matter). We’re all going to have to use our own judgment. I just thought it was important for people to know 1) that Migraines impair us, sometimes even when we don’t feel like they do; 2) that people have been convicted of DUI even taking legally prescribed medications; and 3) that right or wrong, our condition is being scrutinized by Motor Vehicle Commissions.

Last night I dropped my son at his music lesson and went to the supermarket. Near the end of my time in the market I was very hungry and jittery, and I started to get sensitive to light, an early warning sign for me of a Migraine coming. My son was across a divided highway from me, needing to be picked up, and I had a week’s worth of groceries in a cart. So I had choices to make. I could have called my husband, and he could have come and got our son, me and the groceries. I decided to eat something and see if raising my blood sugar would hold the Migraine off. So I went through the checkout line and sat in the car eating for a while. I felt less jittery and better right away, and I made the judgment call that the Migraine was not going to hit full force in the 15 minutes it would take to get home. I picked up my son, drove home, and all was well.

Was that the right thing to do? Was I putting convenience ahead of safety? Was I being a hypocrite in light of the articles I just wrote and the position I’ve been taking? We have to make judgment calls every day with this disease. If my head had been hurting, if I was getting dizzy or confused, I would not have driven. I have called for rides, or pulled over to the side of the road in those situations before. I always try to err on the side of caution. Several people have left comments since I wrote the articles, about family members who were badly hurt driving with a Migraine.

All I’m asking is that we take this seriously, that we plan ahead, have a back-up plan, and take ourselves off the roads before we endanger ourselves and others. And I know it’s not fair, that there are lots of morons on the road who shouldn’t be driving, and all of that. It’s a very uncomfortable subject - it challenges our independence. I know. Sorry. I’m not trying to drive you crazy. Please don’t kill the messenger!

- Megan

Rearview mirror image courtesy of Dean Shareski; Steering wheel image courtesy of Tomas Fano.

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Posted in Communicating, Current Affairs, Managing, Travel | Comments (17)

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