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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!

Please Email Congress Today – The Window is Closing

March 26th, 2009

There are two days left to get your email in to Congress (that is, today and tomorrow) requesting that they sign off on language that directs the National Institutes of Health to fully fund research on Migraine and Headache disorders.  You don’t even have to think up your own email, or find your Representative’s contact information (or know who your Representative is) – all you have to do is click here for the Alliance for Headache Disorders Advocacy’s action page.  There you can send your email in less than three minutes and a few clicks.  If you haven’t done it already, please do it now.  It will mean better treatment options for all of us.  It will mean more understanding of our disease, and more options in our future.  And if we don’t get enough signatures now, it will mean another year of delay, without basic research being done.  Please take a few minutes out to help.  I took three days out to go to D.C. on this effort.  You can take three minutes without leaving your chair.  Thanks!

– Megan

Cats in the window image courtesy of Helene Jutras.

Tags: Alliance for Headache Disorders Advocacy, Congress, Migraine treatment, National Institutes of Health
Posted in Advocacy | Comments (2)

Migraine and Headache Poetry Contest

March 22nd, 2009

The ninth annual Migraine and Headache poetry contest is going on now at MyMigraineConnection.  Teri Robert, patient advocate and Migraine expert on MyMigraineConnection.com, has kicked off the “Putting Our Heads Together” Poetry Contest. The contest seeks poetry on how Migraine disease and/or headache disorders affects your lives. You can submit up to three poems, in any style, for the contest – the more creative, the better! To enter the “Putting Our Heads Together” poetry contest, visit: Poetry Contest.

As those of us who blog on Migraine can tell you, writing is a one of many creative outlets that can help you cope with this disease. Make art out of pain, and help others find fellowship and understanding. Don’t worry if you think you’re not a poet. Poetry is painting pictures with words – hold your brush lightly, don’t think too hard, don’t force it, let it flow. Rhyme, or don’t rhyme, play with the rhythm and music of the language. I hope to see you in the contest!

– Megan

Tags: headache disorders, migraine, My Migraine Connection, poetry, Teri Robert
Posted in Communicating, Weblogs | Comments (0)

My Brain Doesn’t Like My Life

March 17th, 2009

Now mind you, I like my life. Not that there aren’t parts of it I could do without. Not that it doesn’t have its difficulties. But I do like my life. It’s just my brain that doesn’t like it. Oh and maybe my immune system? Or my adrenal glands? What system is implicated in Chronic Fatigue? I know there’s some central nervous system component to that too, so I’m probably back to my original statement – my brain doesn’t like my life.

I was reading The Migraine Brain by Dr. Carolyn Bernstein the other day and I was really struck by one of her statements.  She is discussing the brain, how it is less adaptable and tolerant of change or variance than any other organ in the body, and Migraine brains are “as high-maintenance as they come!” Our brains want us to have a calm, quiet, regular existence, with low stress levels, the same amount of good quality sleep at the same time every day, a constant level of blood sugar.  I was trying to explain this to a business associate this morning – he was suggesting that I add a second weekly 7 a.m. networking meeting to my schedule, and I was trying to tell him the effect on my system of getting up even one day a week early enough to make a 7 a.m. meeting, when I don’t get up that early other days.

In reality, I have two teens who have to get up at 6 to get to school and who stay up late doing homework and I can’t always get to bed as early as I would like, or sleep as late as I would like, even though my husband takes care of most of both the early and late parenting duties. In reality there is a great deal of stress and financial pressure in my life, and I need to work, and I need to continually generate and reinvent the work that I do, since I work for myself. My stress levels mean that I don’t sleep as well as I might, and that leads to more fatigue, and more Migraines. More fatigue and more Migraines mean I get less work done, and that’s a vicious cycle.

Thinking about having a high maintenance brain has really amused me. I have never seen myself as a high maintenance kind of a woman! But I started speculating, if I have a high maintenance brain, what kind of life would it like me to have? Clearly it would involve going to bed by 11 each night. Maybe a bath and a massage to relax me before bed.  “Come along, Megan, time for your bath and massage.” Ah, yes.  Then I would sleep until 8 and have a nutritious breakfast in bed.  Get up and do yoga, and go for a walk.

The weather would be breezy, 75 degrees, mixed sun and clouds.  It could rain a little overnight, but never when I want to go out. Yes, I mean every day. I know it’s unreasonable, but I’m high maintenance, right? Come on!

I’m really not sure what the rest of my day would consist of, frankly it’s hard for me to imagine, but I do know that I would not have much of anything to worry about. That is non-negotiable to my brain! I could take nice little trips as long as all the other drivers drove safely and carefully and did not use their horns. I could have lovely visits with people and enjoy restaurants and movies and concerts and plays as long as no one smoked, no one shouted, there were no flashing lights, and the decibels were at a reasonable level. Whatever that is!  And no two people can ever speak to me at at the same time. And all my meals must be delicious and gluten free and arrive before my blood sugar drops too low.  Preferably without me having to think about it too much, or cook it.  Yes, I could have lots of lovely fun as long as it was all on my terms and I was home in time for my bath and massage and bed by 11.

Gee, it sounds kind of like what my high-maintenance brain wants is a permanent vacation! An expensive one! Oh for heaven’s sake, brain, get a life!

– Megan

Oh well, at least there’s chocolate.

Tags: Carolyn Bernstein M.D., Migraine brain
Posted in Rant, Silliness | Comments (4)

Running on Fumes

March 14th, 2009

A while back I wrote a… um… post (rant?) about how stress is not a Migraine trigger (officially) but… why does it seem that way to us so frequently?  The International Headache Society calls stress an aggravating factor, in other words, it’s not considered a trigger, but a factor that can make us more susceptible to our triggers, perhaps lower our threshold to be triggered into a Migraine.  As far as I’m concerned, the jury is still out on this question.  Given that hormonal fluctuations are one of the biggest triggering factors, (such as the hormonal fluctuations that give women menstrual Migraines and increases or decreases in Migraines around menopause), and given that our bodies react to and cope with stress by release of stress hormones (cortisol and epinephrine, among others), I’m betting research will eventually show that changes in stress hormone levels play a role in triggering Migraine attacks.

I’ve spoken with Teri Robert, author of Living Well with Migraine Disease and Headaches, about this topic.  Teri makes several good points – the level of stress in our lives may be largely out of our control, while individual triggers may be in our control.  Therefore if we focus on stress, we may be focusing on something we can do little about, rather than on something we can change.  And, if we blame stress we may be missing other triggers that being stressed makes us forget.  Do you sleep well, or enough, when you are stressed? Do you eat well, regularly, or enough? Do you overdo it on caffeine?

As so often happens, I had a chance recently to be my own guinea pig for these speculations.  I was given a rush project to complete over a weekend, and my world became all about getting it done.  It took me back to college, law school, and my early days as a lawyer, when a project could take over everything, and sleep, food, everything else would go on the back burner. It’s not a mode of operations I have used much in the past decade, and clearly not one that is good for me, but boy was it familiar!

On the second day of the project I woke up early after not enough sleep, my head full of the research I had to do.  I whizzed through getting my son off to school, and whatever I had to do of my morning routine, and was at my desk and deeply immersed in legal research before nine in the morning.  I was alert, turned on, and my mind was moving fast.  I was drinking more coffee than I usually do, and I noticed I had little appetite, and less tolerance for taking the time to eat, or rest.  I don’t know exactly when I noticed, but I could see it coming.  I was definitely pushing myself beyond normal endurance limits, and I could actually feel the point where the stress hormones took over.  When I was 25, I could run like that for several days without triggering a Migraine.  Now I could feel the lurking heaviness around the margins of my mind, crowding right in on the heels of my adrenaline high.  I caught myself before I lost much sleep, or skipped many meals, or propped myself up on much more caffeine than usual.  I forced myself to stop and rest, and although I couldn’t nap with all that caffeine in my system, I did lay down and do relaxation exercises, and I did manage to avoid the Migraine I felt threatening.  My hat is off to Teri for good practical advice, because if I was busy blaming the stress, I could not have attended to the triggers in this way.

I realize I’m not telling you a tale of a Migraine, but of a Migraine averted, and that’s good news. That’s actually another post, for another day, and I’ve written others on the theme – you can push those triggers back at times, and stopping and relaxing can do it. That’s why I offer relaxation teleclasses and recordings!  But if I hadn’t been so aware, and hadn’t had that tool; if my Migraines weren’t managed to the degree they are, I would have had a Migraine that day. In fact, I had one at the end of the project, three days later!

So, was the stress itself a trigger, one in the stack, with the lack of sleep, insufficient food, and excess caffeine? Was the stress an exacerbating factor that made me more vulnerable to the effects of the other three triggers? Or was the stress the producer of the stupidity that made me willfully expose myself to those triggers, the very things I so carefully manage my life to avoid? What do you think?

– Megan

Dashboard image courtesy of Winstonavich/Winston.

Tags: International Headache Society, Migraine management, Migraine triggers, relaxation practice, stress management, Teri Robert
Posted in Managing | Comments (4)

It’s Blog Carnival Time Again

March 9th, 2009

The March 2009 Headache and Migraine Disease Blog Carnival is up at Somebody Heal Me.  There you can find links to read about a peaceful retreat for weathering a Migraine at Jasmine’s Cove, a very practical three-step approach from Diana Lee, a fantasy trip to the perfect home for Migraine sufferers hosted by yours truly, as well as a sleep apnea mystery solved from James at the Headache and Migraine News Blog, and some thoughts from CI Coach on how hard it is to keep working with chronic illness!

The Headache & Migraine Disease Blog Carnival has been created to provide both headache patients and people who blog about headaches with opportunities to share ideas on topics of particular interest and importance to us.

For the March 2009 carnival Diana Lee solicited submissions on the topic of “Advice for Creating a Migraine-Friendly Living Environment,” as well as welcoming entries of general interest to headache and migraine sufferers.  Happy Reading!

– Megan

Tags: blog carnival, Diana Lee, home environment, Weblogs
Posted in Tips & Techniques, Weblogs | Comments (1)

Creating a Migraine-Friendly Home Environment

March 6th, 2009

When I was a kid one of the games my brother and sister and I used to love to play on a Saturday was the Farm Game. It involved the Encyclopedia, and a pad and pen. We designed an imaginary farm for the three of us to live on and run, and we would draw it and plan it, and use the Encyclopedia to select our location and all our animals and plants.  I’m sure the farms we created would have been impossible to run, with animals that wouldn’t get along, and plant species that wouldn’t grow wherever it was that we were going to be. But it kept us busy for hours, and we loved it.

Creating the Migraine-friendly home enviroment is a little like that. I could spend hours, and use home design and architecture magazines, catalogs, the web, and a lot of imagination. I could spend bottomless amounts of money I don’t have, to create this environment, have a great time doing it, and I don’t know how practical it would be at the end. But what I’ll try to do here, instead, is mix fantasy and reality, pie in the sky with down to earth, and see if we can come up with some things you can actually use.

Starting outside, the Migraine-friendly home should be well-shaded, with deep covered porches and pollen-free trees.  Migraineurs need fresh air and good circulation, but have trouble with extreme heat and bright sun, and often get triggered in high-pollen season.  So let’s make it possible to get outside even with a Migraine, and to open the windows and enjoy the fresh air.

Inside, lighting is very important.  If you can choose lighting fixtures, great. I discovered the hard way that “high-hat” spot-lights are terrible for me, bright lighting coming down into the top of my eyes is about the worst from a triggering standpoint.  Torchiere type lights, which point the light upwards and spread it gently on the ceiling, illuminate the room more indirectly and can give plenty of light without glare.  Many Migraineurs find that fluorescents, even compact fluorescents, trigger them. Good old-fashioned shaded incandescent lamps can be good. We just recently got some of the brand new soft-white LED lights, which we have put in the “high-hat” sockets, and they are terrific.  Non-flickering, soft illumination, but plenty of it. For the first time, I can have light coming down from above that doesn’t trigger me! They are very good for the environment, too.

Having a quiet place to escape to is key. Lots of my Migraineur friends spend time on the couch, for me it’s my bed. I have 2 kids and a husband who like lots of music and tvs on and I need a place where I can control the light, sound and stimulation level. If you could really set it all up beforehand like the Farm Game you would choose yourself a quiet partner and quiet kids, but I wouldn’t trade the ones I have. I just have to buffer them at times.

Ideally, the Migraine-Friendly home environment would be tidy enough that the Migraineur was not tripping over stuff all the time, without the Migraineur having to be the one to tidy it up all the time. This also falls into the realm of the Farm Game – the ideal Migraine-friendly home environment comes with enough money to hire someone to do the house-keeping. Either that or choose your spouse based on their neatness and housekeeping abilities, though that may not be the best reason to choose your life companion.

Don’t forget to keep what you need for comfort on hand, whether it’s pillows, blankets, eye-shades, ice-packs, comedy DVDs, kitties, doggies, books on tape, spouses, children, best friends, rocking chairs, ginger Altoids, Ben & Jerry’s Heath Bar Crunch, you name it.  What else would you add to the design for the Migraine-friendly home?

– Megan

P.S. No, that is not a picture of my house. I wish!

Wisconsin Farm image courtesy of Randen Pederson; craftsman house image courtesy of David Sawyer.

Tags: LED lights, lighting, Migraine triggers
Posted in Managing, Musings, Silliness, Tips & Techniques | Comments (1)

Being Chronically Ill, and Feeling Well

March 5th, 2009

I woke up feeling well, and well rested, before my alarm went off this morning. That may not sound like a big deal, but it is very unusual for me, and worth commenting on. I went to bed last night with a Migraine that hadn’t fully resolved, and with a queasy stomach, which I thought was nausea from the Migraine. The head pain was completely gone this morning but now in early afternoon my stomach has gone back to feeling a bit queasy, so I am wondering in retrospect whether the stomach gripe yesterday was Migraine nausea or IBS or whatever else this may be that I am feeling today. Having multiple chronic illnesses is like that. Most of the time I’m grateful if nothing really major is going on. It’s rare that some degree of minor ick isn’t happening, and it’s also rare that I can sort it all out and say definitively what is bothering me on a given day.

I felt so well that I set my Facebook status this morning to say “Megan Oltman is feeling really well for the first time in weeks.” Within a few hours I found myself musing on what exactly “feeling really well” is, whether it’s a moving target, and whether it’s a claim I can make. I’m not feeling as well as I was when I got up this morning. On the other hand, I don’t have a Migraine, my stomach is only a little queasy with no major pain or cramping, I don’t feel fatigued, I am mentally clear, I am not congested, I am fairly energetic – this is a good day! I might even color it pink!

I have a Wellness calendar which I color code to indicate how well I am on a given day. This allows me to keep statistics and track trends. I calculate how many Migraines per month I have, how severe, how long they last, what triggers them and what I do to treat them. I calculate how many days I am sick but functioning, how many days semi-functioning, and how many completely out of action.  Each type of day has a color. Days I feel great I am “in the pink.”  Then I calculate percentages of wellness and illness for a given month, for two and four months trends, for a year.  Yesterday I caught my statistics up and discovered that 2008 was my worst year for wellness since I started tracking.  Not that I couldn’t have told you that by gut feel, too, but it’s a rude awakening to see it in black and white and pink and orange and brown… I really think I deserved a pink day after that.

A dear friend, who lives far away, and who I don’t talk to nearly often enough, read some of my writing recently and told me she was surprised to hear me describe myself as having been chronically ill for the past 14 years. She thought I must be uncomfortable talking about it, or why had I never told her? Laura’s a perceptive one, and of course it has been uncomfortable to talk about, especially in the first 8 or so of those years where I was trying to figure out what was wrong with me, blaming myself, thinking I was a hypochondriac, all the things that so many of us do. Now I think it’s not so much discomfort as just a long story to catch people up on. That’s part of what I try to do here. I am chronically ill. I have chronic Migraine disease, chronice fatigue syndrome, irritable bowel syndrome, multiple allergies, and chronic, or at least frequently recurrent, sinus infections. The good news is that I am actually up and functioning about 75% of the time!

February was a bad month. I was sick 14 out of 28 days, and that doesn’t even count days I was okay all day but was knocked out with a Migraine in the evening. Today I got out for a walk. I am clawing my way back to the top of the mess in the house and on my desk, and feeling caught up with my work again. The sun is shining, the snow is melting, and I feel well. Pink? At least pinkish!

– Megan

Tags: allergies, chronic fatigue syndrome, chronic illness, chronic migraine, irritable bowel syndrome, sinus infection
Posted in Communicating, Musings | Comments (2)

The Time is Now to Write your Congressman/woman for More Migraine Funding

March 2nd, 2009

If you read my post about Headache on the Hill last week (or even if you didn’t but you’re keeping current in the world of Migraine advocacy) you know that there is currently a letter on Members of the US House of Representatives desks, asking them to direct the National Institutes of Health (NIH) to spend a fair share of their budget on Migraine and headache disorders research.

You can make a difference, it’s easy, and the time is NOW.  Use this link to go to the Alliance for Headache Disorders Advocacy (AHDA) and take action.  There is a letter already prepared to go to your representative – you can add your own text to it, and when you fill in your address, the form will automatically determine who your representative is and direct it to the correct congressional office.  Easy as pie.  It will literally take you 2-3 minutes, and the more of us they hear form, the better chance we have of succeeding.  A sentence or two of your own experience as a Migraine sufferer will help them understand why this is so important!

Please take a couple of minutes to make a difference for all of us!

– Megan

Clock face image courtesy of Steve Burke.

Tags: Alliance for Headache Disorders Advocacy, Migraine research, National Institutes of Health
Posted in Advocacy | Comments (0)

Coping with Fatigue

March 1st, 2009

It’s my second day in a row where I feel achy and tired all over and just can’t get going.  I’ve had my 8 1/2 to 9 hours of sleep; I have been taking it slow and easy.  This kind of fatigue is a common reaction for me when I have travelled or otherwise exerted myself over several days.  I guess a 3 1/2 hour drive to Washington, an evening of training, a late night, a day of lobbying with a Migraine at the end of it, a morning meeting then another 3 1/2 hour drive, then 2 busy working days, count as exerting myself.  It feels as if the tiredness stores itself up in my muscles and doesn’t drain out for days on end.

It used to be that I felt like this every day, five or six years ago.  That was before I began taking thyroid supplements and bio-identical hormone replacement therapy.  It was also before I began practicing good sleep hygeine to manage my Migraines – getting enough sleep and the same amount, at approximately the same time, every night.

I have learned not to push myself when I feel this way.  I will recover faster if I rest and take it slow than if I try to power through and get a lot done.  It’s hard, though, to cope with the mess around me and not be able to do much about it.  It’s hard to cope with the reality that I have a lot of days like this, and I can’t get done what I once could.

My primary doctor diagnosed me with chronic fatigue syndrome about six years ago; his treatment approach to it is mainly to seek to balance my hormones and that has helped a lot.  Coach Debra Russell of Artist’s Edge helped me too; she and I traded coaching and it was Debra that taught me that when I am fatigued, I need to rest. Period.

Now I find myself wondering what else is available.  As I work with migraine sufferers and other chronically ill folks, I have read some more of the chronic fatigue and fibromyalgia literature.  I have to admit to a certain level of denial rearing its ugly head for me once again – I don’t want to face the possibility that I might have fibromyalgia as well.  Of course we all know how silly this is (and denial always is silly, powerful and destructive though it may be) – because if I have it, I have it, whether I know it or not, and it’s knowledge that is power, not ignorance.

Well, friends, I make my promise to you – I will go read up on cfs and fibromyalgia and find out what else I should be doing to take care of myself.  Today it looks like I’ll be getting the taxes ready from my semi-recumbent position. Nice and restful, eh?

– Megan

Tags: bio-identical hormone replacement, chronic fatigue syndrome, Debra Russell, fatigue, fibromyalgia, migraine, over-exertion
Posted in Communicating, Managing, Musings | Comments (0)

Pills, Nasal Sprays, Injections, and Now a Patch?

February 27th, 2009

A clinical trial was begun this past fall, of sumatriptan delivered by transdermal patch.  Sumatriptan, the first to be developed of the triptan drugs, is a Migraine abortive, which acts directly on the trigeminal nerve to abort a Migraine attack in progress.  It was available only as the brand-name, Imitrex, until the past couple of months when the pills and the injectable form came off patent and were approved as generics.  Triptans can be taken by about three quarters of Migraineurs and are effective in aborting a Migraine, if taken early enough, roughly three-quarters of the time.

Regarding the patch, I think it’s a good idea. The injections work better than the pills for most people, me included. Bypassing the digestive system seems to limit side-effects, especially nausea, and personally I’d love to have the faster absorption like the injections without the major ouch of giving myself a shot! That said, I imagine the manufacturer is happy to have something they can patent and charge top dollar for, now that the pills and injections are out in generic. Call me cynical… but only partly!

I have to applaud every advance in Migraine treatment, small though it may be. And though you may call me a broken record, I am still your fired up advocate here and want to point out that we have had no new medications developed for Migraine, other than the triptans, in the past 15 years. So a little yay for another way to deliver triptans.

A way bigger yahoo! would be for more effective abortives, that could be taken by people with heart conditions, AND for effective preventives without hideous side effects that are actually developed for Migraine disease, not hand-me-downs from other diseases. Call me crazy? Well, a girl can dream!

– Megan

Patchwork quilt image courtesy of LePetitPoulailler.

Tags: imitrex, Migraine abortive medication, Migraine medication, Migraine preventive medication, sumatriptan, transdermal patch
Posted in Advocacy, Medicine | Comments (0)