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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!

Migraine Meet up in Real Life

June 14th, 2011

Some of my dear bestest buddies from the forum over at My Migraine Connection were over at my house on Sunday, for reals! It was so wonderful having MaxJerz (and her Mom) and KatintheCorner in my own space. MJ was back visiting my state, where she grew up, after being gone for five years; she came up with the idea. Kat came down from her corner of the state and I picked her up from the train. We were sorry the timing was such that EG couldn’t join us from yet another direction. I also wish we’d thought to take a picture. My old standby heads-together statue will have to serve. I love this photo, though, it makes me think of Migraine sufferers helping each other - putting our heads together.

I always feel super responsible when I host something, and of course I was feeling responsible for our weather - it had been super hot, then thunderstormy, and I worried about everyone’s heads. Why do I think I’m responsible for the weather? The day itself was humid but not too hot, and overcast. All our heads held up well enough. Beforehand of course I cleaned myself half dead (and give credit where due - my Danny man did the same), but was worrying about all the things we hadn’t gotten to.

Everyone was so easy and natural it wasn’t too hard to give up my obsession to make things perfect and just enjoy being in their presence. It’s an amazing thing to meet people you know intimately, but have never been with before. It’s fun to just experience the way people move, their gestures, their voices, when your contact so far has been in words and pictures. And to give real hugs where you’ve sent lots of virtual ones before. People are great in three dimensions! It’s fun to be three dimensional too- to tell my funny stories and ham it up the way I like to. Can you all tell from this blog that I’m pretty goofy? (Yes, intelligent, well-informed, authoritative, but goofy.)

It was a quick visit, but a great one. I’ve gotten to meet lots of great Migraine buddies lately - been meaning to blog about the Migraine focus group I was in for the past month - I promise I’ll get to it soon. It’s a funny thing; it’s not that Migraine sufferers are all that unusual - we’re about 12% of the population. Even those who are or have been chronic Migraine sufferers aren’t that unusual, though we’re a minority of the Migraineur population. But those who are active on-line, are advocates, are seeking help and to help one another, we’re not your common or garden-variety. It’s an honor to be part of this community, and a pleasure to have you all in my own living room.

- Megan

Tags: Migraine activists, Migraine sufferers, migraineurs, on-line activisim, patient advocates
Posted in Advocacy, Weblogs | Comments (146)

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

Tags: chronic migraine, episodic migraine, fibromyalgia, migraine
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

Tags: allergies, blogging, chronic illness community, fibromyalgia, friendship, irritable bowel syndrome, love beats hate, Migraine disease
Posted in Communicating, Musings, Weblogs | Comments (3)

Having a wonky nervous system.

October 23rd, 2010

My CPU is messing up its P. My wires are crossed, frayed and fragmented. The volume knob on my pain processors is broken and they don’t make the replacement part. There’s a bug in my programming that no one knows how to debug. I am exquisitely sensitive. I want to know what’s so freakin exquisite about it?

I spent the afternoon in the courthouse on Thursday. That’s always been a stressful event for me, and in years past it used to steal my sleep the night before, have me so riled up I could barely think clearly, and inevitably led to a Migraine after. This time was not so bad. I really knew my stuff, I slept well, though not quite enough, I was only a little nervous. I spent the entire afternoon negotiating and wound up with a better than expected settlement for my client. It was still rather stressful and quite strenuous for me, though. I was too busy at work to get a break before I had to leave for court. The street I usually turn down was blocked off for construction. I parked 4 blocks from the courthouse and then got a little lost on foot, hauling my heavy file in a stiff wind. I was worried that my plenty-of-extra-time was turning into actually being late. I had to deal with heavy opposition and guilt-tripping at times from my adversary, and a major upset at unexpected details from my client. We were racing to get our agreement done before the courthouse closed. When I left I practically ran to my parking garage to avoid a ticket. All in all a very tiring day.

The good news is that my Migraines are well enough controlled that all that did not trigger one. I was close this morning but my cup of tea and morning supplements seemed to head it off. But by the time I got to my car on Thursday my arms were so sore and heavy I could barely hold them up on the steering wheel. I went home, had dinner, and my gut immediately began to cramp, leading into a two day irritable bowel attack. And throughout the day on Thursday and Friday, my hands were trembling constantly. When I got up on Friday my whole body felt like very sore and achy concrete. I told my husband I had great sympathy with concrete; I know how sore it must feel. He told me, “Yes but concrete doesn’t try to move around!”

I am one of those Migraineurs with a lot of related “co-morbid” neurological conditions. Migraine is a condition of an over-sensitized nervous system, with mis-firing of certain neurons in response to certain stimuli.  Fibromyalgia is like the sound has been turned up on pain receptors so that pain and tiredness amplify and continue in the muscles with long-lasting pain, it is also a condition of over-sensitive, over-active nervous system. Irritable bowel syndrome is thought to be the result of overactive nerves in the intestinal tract, and causes me days and even weeks of cramps, stomachache, heartburn and constipation. I also have a benign familial tremor - benign because it’s not Parkinsonian, familial because it’s hereditary. (my Dad has it but his didn’t appear until his 60’s - lucky precocious little me!)  I don’t know much about the science of the tremor but I notice it is strongest when I am tired and stressed. Oh and for years I have had anxiety, severe at times, though that is being well controlled now by one of the Migraine preventives.

I want to be de-bugged, that’s all I can tell you. The past few days have felt like one of those cartoons where the robot starts to explode, spinning wildly, blowing sparks out of its top and sending bolts flying. The things that are wrong with me - they are not just painful, debilitating, annoying, disruptive, and gross, they are also just plain weird. I never know what’s going to blow next. Well, actually I do have some idea, but it’s awfully hard to manage it all. I am sick and tired of being exquisitely sensitive. I can tell you, there’s nothing exquisite about it.

- Megan

Tags: benign familial tremor, central nervous system sensitivity, comorbid conditions, fibromyalgia, irritable bowel syndrome, migraine
Posted in Rant | Comments (104)

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 (66)

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: exercise, fibromyalgia, fibromyalgia tender points, ME/CFS, Migraine disease
Posted in Managing, Musings | Comments (113)

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 (54)

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 (146)

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.
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