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This is my journal of living with Migraine and other chronic illness. Trying to live well, to live a purposeful life, with chronic illness, since I don't get the choice of living one without it!

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

Tags: Botox, Botox for Migraine, chronic migraine, migraine advocacy, Migraine disease, Migraine education
Posted in Advocacy, Communicating, Current Affairs, Medicine, Rant | Comments (1)

Walking with Fibromyalgia

October 20th, 2010

I am counting on some of you old hands at living with fibro to chime in on this one, okay? I believe I have had fibromyalgia for at least 15 years, and maybe for 35 years. I’ve only been diagnosed for a little over a year, though. My fibro seems to have grown a lot worse in that year as well. What I can’t tell is whether the fibro just seems worse because my Migraine disease has gotten so much better that I can actually notice the fibro now.

I think it is worse, though. Certainly the fatigue is nothing new, that’s a fifteen year old problem, which I thought was ME/CFS. It was raising the question of dealing with Chronic Fatigue Syndrome (CFS) with my headache specialist last year which led him to press my fibromyalgia tender points, and led us both to realize that it was fibro that was the issue.  since then things I’ve been experiencing for a while have “clicked,” like how a slap on the shoulder or the teasing pokes my son gives me can really hurt, for a long time. Things that used to be just mildly uncomfortable or unpleasant cause actual pain now. What is new is the feeling that my aching arms weigh a ton and are likely to fall off. This is after a day of sitting up at a desk typing.

I’m finding this disease a hard one to learn to manage. I try to keep my activity level fairly steady from day to day, but if I do get a flare I need to rest for it to go away. Then I’m back to a very inactive state and have to slowly build up all over again. I always want to do many things when I do have the energy for them, but I can cross the line to overdoing so easily.

Saturday, for example. A couple of our dearest friends were in NJ/NY for the weekend – in from Minnesota. It gave us the impetus to do a deep cleaning of the downstairs – one it had needed for a long time. But the day started at 6:30, because Adam took the PSAT today, and then we cleaned for several hours until they arrived. We had lunch and lots of talk, a too short wonderful visit of a few hours. I did take a nap after they left, but as the sun was starting to go down I was seized with the desire to be outdoors in the bright chilly Autumn day, and walk in the park. (What’s the good of living in the best spot in our little town if I don’t get out and enjoy it?) So I took a good 20 minute walk through the paths in the fields. Then I sat on the bed, propped up on pillows, blogging. There was still laundry to be done but I had expended about as much muscular effort as I should for one day (if not more). I ached a bit, but who knows how much more would have set up a flare? It’s very challenging.

– Megan Oltman

Tags: Adam Oltman Porcher, Adam Porcher, exercise, fibromyalgia, fibromyalgia tender points, ME/CFS, Migraine disease
Posted in Managing, Musings | Comments (0)

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

Tags: fibromyalgia, migraine, Migraine preventives, Migraine triggers, relaxation techniques
Posted in Communicating, Managing, Musings | Comments (1)

Speaking to Pharma Marketers

October 16th, 2010

On Thursday of this week I had a great opportunity. I was invited by Jack Barrette of WEGO Health to be on a panel presenting Health Activists’ perspectives to pharmaceutical marketers. The conference was called the Multi-Channel Pharma Marketing Event, and participants were hearing about how to market in a new world of informed medical consumers, health activists, and social media. My fellow panelist was Allison Blass, of Lemonade Life, a diabetes blogger and activist.

So here’s what I think about Migraine and pharmaceutical companies, what I went into this conference with. First of all, pharma companies want to sell their drugs, because that’s what they do, and how they make their profits. So marketers are looking for new and better ways to… that’s right, market their products. Do their companies make too much profit? Are drugs too expensive? Well it is very expensive to develop new products, and takes years and years. I understand this. The fact that insurance companies are run on a profit motive is a harder one for me to take – their motive will never make them want to give us all we need to treat our disease, and the fact that we have uninsured people, and no universal, single-payer system, so some people can’t afford meds at all, and others are at the mercy of insurance companies that ration meds, those are the real crimes. Don’t even get me started!

So how much should pharma companies profit? I don’t know. I don’t know whether they make more profit than say, banks and financial companies. I do know they make something we need, and our system runs on profit. And here’s where the Migraine angle comes in – they don’t make enough of what we need, the basic research hasn’t been done yet, they haven’t developed the drugs, we haven’t had a real new innovation since the triptans, and we need better products to prevent and treat Migraines. Desperately! You with me so far?  What we really need is a cure, as Allison said, so ultimately the pharma companies should be in the business of putting themselves out of business. Because it’s the right thing to do.

In the meantime pharma companies want to get involved in social media, because that’s where not only consumers but opinion leaders are. I asked a number of you on Facebook to tell me what I should say to them, and there was a fair degree of skepticism about their motives. It seemed to me the people I met were decent, committed people, who are selling things they believe in.  As one told me, he’d rather be selling drugs that help people then a lot of other things.

Anyway, Jack asked us to speak on what the rules of the road are, and what we would do if we had 10 million dollars to spend in our health communities. Allison and I expressed things in different ways but came up with a number of very similar ideas. I said, Rules of the Road: you have the power to educate, use it wisely and well.  Don’t try to sell something like Excedrin Migraine as if it were a one-size fits all solution, a cure, and fail to disclose that 1. it doesn’t abort your Migraine, only covers up the pain; 2. it won’t kill the pain for many of us; and 3. it carries a substantial risk of Medication Overuse (rebound) Headache if used more than a couple of days in a row, or a couple of days a week. It was easy to pick on Excedrin Migraine because so many of us Migraineurs love to hate their ads!

As for the Imaginary 10 million, how about spending most of it to get the basic research about this disease done? Support Alliance for Headache Disorders Advocacy and Migraine Research Foundation. Then if they want to spend some money on line supporting our community, sponsor patient education, Migraine diaries, information about a whole life approach to managing Migraine (an approach that pharmaceuticals are only one part of).  Let some more of us who are committed to helping people with this disease become professionals at it by supporting our efforts with paid positions. Life costs money (as Allison said) and people with the passion to help should be able to make a living at it. And if you support and sponsor what our community needs, and are known as good guys, we will be more eager for your products when they are finally developed, and more likely to continue using your products over time, if they do their job.

The audience was great, asked terrific questions, and it was a great experience. Kudos to Jack who had me really get present again to what I am doing and why. As you may know if you read my sparse postings lately, I have been working a demanding day job as an attorney and mediator, and haven’t found much time to be on line lately. Well, I’m lit up and raring to go, so expect to hear some more from me.

– Megan

Tags: Alliance for Headache Disorders Advocacy, migraine, Migraine research, Migraine Research Foundation, Multi-Channel Pharma Marketing Event, pharmaceuticals, WEGO Health
Posted in Advocacy, Medicine | Comments (0)

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.

Tags: chronic pain, David Biro MD, Deborah Padfield, Frida Kahlo, Jack London, James Joyce, Leo Tolstoy, living with pain, pain, Stephen Crane, The Language of Pain
Posted in Books, Communicating, Managing, Medicine | Comments (0)

A Certain Level of Brain Freedom

August 22nd, 2010

I am enjoying a long stretch of freedom from pain in the brain. Hooray! I have had only six Migraines since late June. Less than one a week! A better rate than I’ve achieved in the past three years, at least. I began taking the blood pressure medication Lisinopril in late June, and this seems like a winning combination for me. My current regimen includes:

• Nortriptyline 50 mg at bedtime (a tri-cyclic antidepressant, taken at a very low dose for Migraine prevention, it has also helped my sleep and lowered my anxiety level);
• Lisinopril 20 mg (10 at bedtime and 10 at breakfast);
• High potency multi-vitamin;
• Magnesium 400 mg;
• B-Complex 100 mg;
• B-2 300 mg;
• CoQ10 300 mg;
• Armour Thyroid 60 mg;
• Iodoral iodine supplement;
• DHEA 10 mg at bedtime;
• Melatonin 3 mg at bedtime;
• Omega-3 fish oil supplement;
• Pro-greens pro-biotic supplement;
• At least 84 ounces of water per day;
• daily walks;
• daily relaxation practice.

That’s about 15 pills in the morning and 6 at bedtime. If that’s the price of freedom, I can live with it. As always, an unintentional experiment proved how well this regimen is working for me. A few weeks ago I had a Migraine on a Thursday evening and, as I sometimes do, forgot to take my bedtime pills as I was treating the Migraine and everything else went out of my head. The next day we were leaving just after work for our cousins’ beach house and I got up early in foggy post-drome and packed for the weekend before work. I forgot to pack my pills! So just as Danny was leaving the house to come meet me at my office, I called him and asked him to pack them for me. He did that, but when we met up and transferred the bags from the car he was driving to the other, the bag of pills got left behind. We discovered this at about 10 pm at the beach house. So I went without pills for a second night in a row, and missed my morning doses Saturday morning. Danny was a hero and drove over 6 hours round-trip to go get my pills so I could stay through Monday. Two nights and a morning without had a cumulative effect, though, and I had a pretty severe Migraine Sunday night.  It is now two weeks later, took my pills every day and no Migraines in that two weeks!

My Migraine specialist, Dr. Bill Young of Jefferson Headache Center, had said to me , “Six to seven Migraines a month isn’t good enough. We can do better!” (Love this guy! Compare with the last guy who thought I should be satisfied with reducing from 10 a month to 7.) So when I went to my last appointment in late June with the news that my blood pressure had been running high, for the first time in my life, he was excited! I had to tease him about that, how many physicians would say, “Oh good!” on learning that their patient had developed high blood pressure! But he explained that anti-hypertensives can be excellent Migraine preventives, but can’t be prescribed if the patient’s blood pressure is too low. He was confident that the two medications together, along with all my other supplements, would produce better Migraine prevention results for me. And so far, so good! I try not to really measure a trend until it’s been going on for several months, but early results look promising. I am loving the extra time and energy I have for hanging out with family and friends, and getting some chores and projects done around the house. Now if I could just manage the fibromyalgia…

For any of you who see doctors who only know a limited number of Migraine preventive options, or who aren’t comfortable with combining several medications, or who aren’t knowledgeable about supplements, find another doctor! If you aren’t doing daily relaxation, meditation, yoga or another practice to calm your nervous system, get on it! It can take time, but most of us achieve a significant level of brain freedom.

Hope you’re doing well. Leave me comment and let me know how you’re getting on, okay?

– Megan

Smoo cave waterfall photo courtesy of Subflux.

Tags: fibromyalgia, Jefferson Headache Center, managing life with migraine, migraine, Migraine preventive medication, William Young M.D.
Posted in Managing, Medicine, Uncategorized | Comments (0)

Who You Calling Disabled?

June 5th, 2010

I hesitate to call myself disabled. I work 25 hours+ a week at a demanding job, I do get out and see people, sometimes, and I’m down to only 3 or 4 days a month in bed. Most days I can wash the dishes and straighten up a bit, more than half my days I get some exercise, many days I can manage the laundry.  I’m down to 5 to 7 Migraine days a month, from 12 to 20 a few years ago. Although I have some fibromyalgia pain many days, days like today when I feel wrung out and ache from head to toe don’t come more than 2 or 3 times a month. So who’s calling me disabled?

I push forward through my life with a great deal of determination and most of the time I confidently expect to get better and better. I have learned so much about how to take care of myself, how to manage my various conditions, and I’ve really improved so much. Days like today, where all I can manage is some reading, some hanging out on line, some tv, when I travel from the bed to the armchair to the bathroom to the kitchen, and that’s a major undertaking, days like today can fill me with despair. I may never get any better than this. I have to accept that possibility – not that I won’t keep on getting up and being positive (mostly) and working striving and pushing (and breaking down when I push too far). But maybe this is as good as it gets.

I am researching Migraines and Social Security Disability for an article I’m planning to write. I encountered the blog of a disability law firm who have helped a number of Migraineurs to get their disability recognized, and compensated. Here’s what struck me. In writing up a Migraine Disability case study, Lawyer Jonathan Ginsberg recounted that the vocational witness called in his client’s case testified that although she felt the claimant could do light duty, low stress work, that no jobs existed that would allow her to be absent 4 to 7 days a month. It’s hard to do this kind of research and really stay detached, and reading that I thought, wow, I could easily need to be absent 4 days a month! The fact that I work less than full time, and for a flexible and understanding boss, makes it possible for me to switch hours around and avoid some of those sick days. But I would be disabled under the same criteria that got the woman in that case granted disability benefits!

Then there’s the MIDAS scale. MIDAS is the American Headache Society’s Migraine Disability Assessment Test. A year ago my MIDAS score was 57 – Which is “Grade IV Severe Disability.” I have been retaking the assessment every few months, and I am down to a 30. Great progress! Guess what a 30 is?  “Grade IV Severe Disability.”

I am not knocking my progress, really I’m not. I recently had a reader write in and ask me how to take back her life from Migraine. That’s certainly a phrase I’ve used a lot. Having 5 to 7 Migraine days a month is incredibly much better than having 12 to 20. Being proactive, recognizing our sensitive nervous systems and caring for them, looking at the areas we can impact and working on them, all of these things do make a difference. I am doing better all the time, building up my stamina (though slowly), and managing these days to earn somewhat of a living, which is nothing to sneeze at. But I felt I needed to tell this woman, you can take your life back in the sense of being in charge of your life, but that doesn’t mean you can make the disease go away.

There come those days, like today, when I slam into the brick wall of my own limitations. I worked a long, hard, stressful week this week and today I woke up feeling like I had been pushed through a strainer. Do any of you recognize that one? I’ve felt it on and off for many years, at least ten, and now I recognize it as a sign of a fibromyalgia flare. I feel strained, like my nerves and muscle fibers have been stretched, shoved, pushed, shredded, sieved, including the nerves in my temples that start the Migraines. Days like today feel blank, wasted, and I cried this morning at the prospect of a life ahead filled with days like this.

My disability is invisible, at times even to me, but it’s there. I will keep on striving. And I also need to be with what’s so, that this is who I am. I am this person with a hyper-sensitive nervous system, I do need days of recovery from just the normal everyday days of life.

I know I’m incorrigible, but I have high hopes for tomorrow.

– Megan

Tags: disability, fibromyalgia, MIDAS, Migraine disease, Social Security disability
Posted in Managing, Musings, Uncategorized | Comments (0)

Surviving the Perfect Storm

May 15th, 2010

My Migraine triggers generally include: lack of sleep; sleep at irregular hours; missing meals or going too long without eating (low blood sugar); working hard when tired (over-exertion, let-down after stress); hormonal fluctuations; electrical storms and barometric pressure changes; loud noises; crowds; smoke; crying; change of altitude.  Last night I sat through a perfect storm of triggers without actually getting a Migraine. Every trigger but the last three were present.

It went like this: I went to my Friday morning BNI meeting, which involves getting up at 6. That wouldn’t be too bad if I managed to get to sleep by 10 or so, but I never do. I go to sleep between 11 and 11:30 most nights and I have a very hard time cutting my evening shorter. Ideally I would go to bed and get up at the same time every day; it would be best for Migraine prevention and make those Fridays easy to bear. But I live in a household of night-owls and I’ve never been able to reconcile myself to having a completely different schedule from the rest of my family. Besides, most of my favorite tv shows are on from 10 – 11! So I got up and got going on less than 7 hours of sleep.

I worked hard all day, working with an intensive focus towards a deadline. It was a warm muggy day with thunderstorms in the forecast, and the building storm was palpable in the air. Then at the end of the working day I attended a charitable event that I was invited to by a friend. It was really a lovely event, a tour of a designer show-house and a dinner in a tent in the back with a couple of presentations, then arias by a couple of opera singers, and finally they held an auction.

I didn’t make it that long though. The thunderstorms broke while we were touring the house, and it was still raining when we went out to the tent. One of the sponsors of the event was a local appliance store, and one of the presentations was on outdoor kitchens. So they got a great local chef to cook a meal (for at least 100 people) on a huge outdoor grill that was being auctioned off. All a very nice concept, but apparently no one had really thought through how long it would take to grill several courses for 100 or more people. They began serving wine before the presentations started; an hour or more later they passed around some little cubes of grilled bread. The next course, grilled vegetables, came out more than half an hour later. then some grilled seafood at least a half hour after that. Each course was served on large platters to be passed around and shared. Each course gave each of us enough to tantalize but not enough to keep us from being hungry.

All the while there were presentations going on, and a lot of hungry people were drinking more and more wine, talking and laughing louder and louder, halfway drowning out the presentations. Then the opera portion started, and while the singing was excellent, I was right up front and the acoustics of loud operatic singing under a tent with thick humid air all around were overwhelming. Not to mention that people had had quite a bit to drink by that time and were not sitting quietly listening to the music. The competing sounds battered at my ear-drums. The smells from the grill wafted over for hours without any food following for a very long time. After the seafood course we sat even longer without food. I felt increasingly jittery from low blood sugar, worn from lack of sleep and a long hard day, battered by the noise, closed in by the crowd, pressed on by the humidity, shaken by the storms, confused by the multiple inputs and noise, distressed by wanting to be a good guest and not feeling up to it. I had many warning twinges in my temples and felt sure a Migraine was on the way.

My dear and very perceptive friend Izzy could tell something was going on and asked me. I shared with him what was going on in my internal world. He went to the kitchen and told them I needed food right away for a medical condition. He came back with some very rare meat which I ate most of and shared some of with a few of my neighbors. I felt bad because I knew everyone was hungry. I stayed until some more meat came out, which was quite a while later. I had a little and then left to go home. I was able to drive myself home, got in and ate yogurt and cereal with milk, some quick protein and calories. Then I collapsed.

The fact that I didn’t get a Migraine is pretty amazing. My nortriptyline, and my supplements, and my regular eating, and all the sleep I generally get (except on Thursday nights), and my regular walking, and my relaxation exercises, and all the other things I am doing to regulate my system… these are obviously paying off! A year ago I am sure that just the lack of sleep and a few hours of intensive work would have given me a Migraine – I wouldn’t even have made it to the evening event.

On the other hand, I had an exhausted night of very poor sleep, and today I am having a major fibromyalgia flare-up. My everything hurts today. My head is only a little tender, though, no pounding, no intense pain there. That’s still a victory!

– Megan Oltman

Approaching Storm image courtesy of Stephan Mantler.

Tags: fibromyalgia, migraine prevention, Migraine triggers
Posted in Managing, Rant | Comments (0)

Blue Tuesdays

April 20th, 2010

On Tuesdays there are staff meetings at my new office, at 8:30 a.m. That may not be ridiculously early, but it means I have to be up at 7 and racing through my morning to get there on time. The nortriptyline I take as a Migraine preventive makes me good and sleepy, and it’s hard to wake up and move on less than 9 hours of sleep. Today I not only had to be awake but to give a little presentation at the meeting on using Facebook and Twitter for business. I am relearning some things I used to know, like how to get up and go even when I don’t feel up to it. How to push myself through times when my focus isn’t there, or I’m a bit fatigued, or to work with a triptan in my system.

Don’t get me wrong, this new job wouldn’t even be happening if my Migraine prevention regimen weren’t working quite well. My Migraines went down by about 60% in the months before I started the job. The challenges of the work routine have them back up a little again, but it’s still significant progress. If I had tried to take on the challenges of this job a year ago, I doubt I could have done it.

I also work an 8 1/2 hour day on Tuesdays and Thursdays because Monday and Friday are my short days and Wednesdays are a day off. That’s just the way we worked out for me to work a 25 hour week. It makes those long days challenging, though. If I don’t sleep well the night before (like last night) and I still go put in a full day, it can lead to an evening Migraine. Right now I am lying down with the laptop, writing to you all after dinner, with a bit of a headache. Trying to see if I can contain it by resting. That works sometimes.

One of the difficulties for me is that I can’t seem to go to sleep and get up at the same time every day the way my Migraine brain demands. I need plenty of sleep, and if I went to bed early enough to make the Tuesday wake-up hour my standard, I’d never get to see my teenage kids or night-owl husband. I’d be best off if I could take a nap to even things out, I think, but short of napping in my car that’s not an option right now.

All in all, I am very grateful to have a job, to be doing professional work and helping people, to be getting some respect and recognition, and earning a living. I am grateful that I still have Wednesdays to keep working at my Migraine coaching. I had forgotten, as a self-employed person for many years, how satisfying it is to leave at the end of a work-day, knowing I had filled the day with doing my best, and that I am done for the day. I am enjoying my evenings more, and allowing myself to relax. Except that these Tuesdays are hitting me hard!

– Megan

Sleepy law student image courtesy of umjanedoan.

Tags: Migraine coaching, Migraine preventive medication, part-time work, sleep hygiene, triptans
Posted in Advocacy, Managing, Musings, Weblogs | Comments (0)

Painflower Blossoms

March 20th, 2010

A malevolent bloom, knife-edged petals in my brain,
an unwanted blossom, unfurling, sculpting pain.
How long beneath the surface were you creeping, unseen?
Tension nurtures, hunger feeds you, worry grows you evergreen.
Each day ill-rested that I drag me from my bed,
pull on clothing, pour down coffee, wear my cares upon my head,
each day pushing, each day working at the work to stay alive,
is another day you’re growing, so to cut me as I strive.
Flower of blood, flower of evil, ugly flower of dawning pain,
Growing stronger, cutting deeper, sculpting patterns in my brain.

– Megan Oltman

Tags: migraine, poetry
Posted in Musings | Comments (0)