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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!

Headache on the Hill

February 25th, 2009

I spent the day yesterday doing something I’ve never done before – lobbying Congress.  I’m not entirely sure I would ever have predicted that I would lobby Congress.  It was a great experience, and one that I’m sure will take me several posts to process and tell you about.  But I can at least get started.  The Alliance for Headache Disorders Advocacy (ADHA) is a wonderful group of doctors, advocates, writers and researchers who are fighting for better headache care for YOU.  I arrived in DC on Monday for a training session put on by the AHDA and learned some key things about the underfunding of Migraine and headache disorders research, and about how to lobby.

Nearly 40 of us spent Tuesday on Capitol Hill speaking to legislators and legislative aides.  I visited two senators and three congressmen from my state, along with another Migraine sufferer.  We were requesting that they add language to the 2010 appropriations bill which will direct the National Institutes of Health (NIH) to spend a larger share of their funds on Migraine and Headache Disorder research.

Here are some of the things I learned, straight from the AHDA fact sheet which we shared with the legislative aides:

Headache Disorders are the most prevalent neurological disorders.  This year:

• More than 25% of middle aged American women will have a Migraine attack.
• 25% of American families will have a member with a Migraine attack.
• 19% of all Iraq war veterans will have a Migraine attack.
• 12% of all Americans will have a Migraine attack.
• 4% of all Americans will have chronic daily headache.

US costs for headache disorders this year will be:

• greater than $31 billion in total economic losses.
• 9% of all lost labor productivity.
• greater than the costs due to epilepsy, asthma and ovarian cancer combined.

Migraine is extremely disabling, resulting in:

• attacks that can be as disabling as quadriplegia or active psychosis.
• more lost years of healthy life in the US than due to epilepsy, multiple sclerosis, and ovarian cancer combined.
• an increased risk of cardiovascular disease leading to at least 1500 additional deaths in the US annually.

What has the response of the NIH been so far?  The NIH is responsible for funding, with our taxpayer dollars, the basic research that makes medical innovation possible.  So far the NIH funding for research on headache disorders is less than $13 million annually which comes to less than 0.05% of the NIH budget. Research of NIH funding relative to disease burdens (the impact of a disease on society, including prevalence, economics, disability, and mortality, as discussed above), shows that a fair share of funds for headache disorders (compared to other diseases with similar disease burdens) should be at least $103 million annually.

We got a good reception, particularly from our senators’ aides.  There is more work to do, but I think we are making an impact.  You can make an impact too.  Go to the ADHA site and sign up for their action alerts.  On Monday, March 2 we will be asking you to email your congressional representatives, asking them to sign on to the language directing the NIH to do the right thing with regard to headache disorders.  If you sign up for AHDA action alerts today, taking action next week will be as easy as a couple of clicks.

– Megan

We can make a difference!

US Capitol image courtesy of Kim Baker.

Tags: AHDA, Alliance for Headache Disorders Advocacy, Chronic Daily Headache, disability, disease burden, headache disorders, migraine
Posted in Advocacy, Current Affairs, Medicine, Science, Uncategorized | Comments (9)

Avoiding the ER

February 16th, 2009

I narrowly averted an Emergency Room visit yesterday. I’m not really sure if I should be saying that proudly or with embarrassment.  The fact is that I have never yet been to the Emergency Room for a Migraine.  It had never occurred to me until I began studying up on Migraine a few years ago that it was even an option. I don’t know why – I just figured, it was pain, you just put up with it.  Since then I’m happy to say that although my Migraines are frequent, they have not often been severe and they don’t often last more than 24 hours.  I have had half a dozen Migraines where I was within an hour or so of deciding to go for emergency care, but the pain abated, the Migraine resolved, and I averted it.

When should you go for emergency care? If you have a Migraine that continues for 72 hours without a 4 hour break in pain while awake, you are in status migrainous, a dangerous condition which carries an increased risk of stroke. Before you hit that 72 hour mark, seek emergency care to break the Migraine.  However, my headache specialist has told me that if my usual abortives are not effective on a Migraine, if my pain levels are unusually high, or if the pattern is out of the ordinary for me, I should not hesitate to seek emergency care.  What you want in the emergency room is probably not narcotics, which are generally not very effective for treating Migraines anyway, what you want is one of several intravenous treatments which will actually break the Migraine cycle. Here is a list of recommended IV treatments at My Migraine Connection.

I woke Friday morning with a severe Migraine. After 2 doses of Imitrex it subsided somewhat, the pain went from about a level 7 to a level 4 and I thought it was resolving.  I still had pain when I went to bed but thought it would fully resolve while I slept.  I woke Saturday morning with pain at about a level 2.  This could still be a Migraine in the process of resolving.  It grew a little worse throughout the day and I gave myself another Imitrex injection in the afternoon. Again, this knocked the pain level back enough that I thought it was probably resolving. Yesterday when I awoke the pain was severe, around a level 8, and pounding.  I took another Imitrex injection, and a reglan, an anti-nausea medication.  Around 10 I took an oxycodone – a narcotic I have as a rescue medication.  A few hours later I took the last Imitrex injection I am allowed for the week.  At this point, the Migraine was almost 60 hours old.  If it did not respond to that last Imitrex, I was bound for the ER.  The combination of the oxycodone and the Imitrex put me to sleep, and when I woke up a few hours later the pain was down to about a 2, the pounding had stopped, and it felt like I was on the mend.  So I did not go.  Today my head feels a little sore, as if it was bruised, but I am not sensitive to light or sound and I believe I have moved on to the post-drome phase.

Did I make the right choice? I don’t know. I’d be more confident talking about this if I didn’t feel deeply reluctant, even fearful, about going to the Emergency Room.  I’m not sure why.  Yes, I’ve heard horror stories about Migraineurs being turned away and mistreated as drug seekers. I’m prepared to go in with my list of IV meds and my assertive husband and tell them I don’t want narcotics, I want something that will break the Migraine. I will also go to the ER at the hospital where my headache specialist practices, where they will call the neurologist on call who will have access to specific instructions about what to give me. I have been treated in several Emergency Rooms for several things and yes, had my life saved there. I do have some life-threatening medication allergies – maybe that’s what makes me nervous. Maybe it’s the old perfectionist’s reluctance to let anyone else be in charge – especially when my life is on the line!

I feel like I was saved by the bell, yet again. I hope that if I had felt no relief from those two meds in the early afternoon yesterday I would have gone off the ER. I believe I would have – Danny was prepared to take me, and I don’t think he would have let me off the hook at that point.  One of these days I’m going to have to get it over with and do it.  Please tell me about your ER experiences!

– Megan

Tags: emergency room, emergency treatment for Migraine, iv treatment for Migraine, severe Migraine attack, status migrainous
Posted in Communicating, Medicine, Musings | Comments (10)

There is NO link between Vaccinations and Autism

February 10th, 2009

Doctor who Published False Study Data Exposed as a Fraud:
Please read this Times of London investigative report on the falsification of data by Dr. Andrew Wakefield.

MMR doctor Andrew Wakefield fixed Data on Autism

Wakefield’s fraudulent article in The Lancet in 1998 gave rise to a significant decline in vaccination. (From 92% in the mid-90’s to 80% today), and to steadily rising cases of measles, including several measles deaths.  Measles cases in Great Britain increased 24-fold in that same time period.

Wakefield claimed a connection between MMR vaccine and autism, based on a study of only 12 patients, and The Times recently discovered from hospital records that for the majority of the patients, their symptoms predated the vaccinations. Wakefield falsely reported in the study that the symptoms occurred after the vaccinations.

It boggles my mind that someone would falsify this kind of information. This mis-information, once published, is extremely hard to eradicate from the public consciousness. My heart goes out to every parent struggling with an autistic child, but the public health implications here are staggering. Most of us are too young to remember the rampant epidemics of every period of human life up to the late 20th century. This kind of irresponsible rumor-starting could lead to our next rampant epidemic. Indeed, in third world countries, children die of measles all the time. Measles can kill,  blind and deafen.

Vaccinate your children! It is a serious public health issue!

– Megan

Tags: autism, Dr. Andrew Wakefield, measles, MMR, public health, Times of London
Posted in Advocacy, Medicine | Comments (8)

February Blog Carnival is Up: Sex and Migraines

February 9th, 2009

Yes, just in time for Valentine’s Day, what you’ve all been waiting for. Hop on over to Somebody Heal Me for the February 2009 Headache and Migraine Disease Blog Carnival.  To quote our host, Diana Lee:

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

This month’s carnival asks “Can Sex and Migraines Co-exist?,” says, “Tonight, Dear! I have a Headache!” as well as a number of other interesting posts on Migraines, sex, pain, and chronic illness. Please be sure to check it out!

– Megan

Red rose image courtesy of Jesslee Cuizon.

Tags: blog carnival, chronic pain, migraine, sex, Somebody Heal Me
Posted in Weblogs | Comments (0)

Help Us Get Better Treatment

February 7th, 2009

Most of the time we do what we can to manage our own Migraines and support others, but don’t feel like we can have much of an impact on the disease itself or our treatment options. Coming up on February 24th is the Alliance for Headache Disorders Advocacy‘s (ADHA) Annual “Headache on the Hill” – a day of advocacy on Capitol Hill where we will be lobbying our Congressional representatives for a larger share of National Institutes of Health dollars for Migraine and Headache Disorders research. I’m very excited to tell you that I will be in Washington along with Teri Robert and a number of leading Migraine specialists and advocates to speak with my Congressman and Senators. Read some more about what Teri has to say about it here: We Need Your Help to Get Better Migraine Treatment.

So, here’s what happens in the meantime. The ADHA will need your help in writing to your representatives sometime soon, possibly before Headache on the Hill, to inform them about the issues and ask them to lend their support. Could you please go over to the ADHA site today and sign up for their mailing list?  This way you will know when it’s time to write your representatives. Why are Migraine and Headache Diseases so under-represented when it comes to our National Health dollars? Probably because we haven’t had the kind of organized advocacy that other diseases have had, but we can change that now!

I’ll let you know here when it’s time to write to your representatives, but please sign up with ADHA today so that you don’t have to rely on me! Thanks for your help!

– Megan

Tags: action alerts, Alliance for Headache Disorders Advocacy, Headache on the Hill, migraine advocacy, Migraine disease, Teri Robert
Posted in Advocacy, Medicine | Comments (0)

Migraine Consolation

February 5th, 2009

I have to thank Diana Lee for this topic, which I’m exploring for this month’s Migraine Disease and Headache Blog Carnival, I’ll excerpt the subject as: when sex can help with migraines – anything goes.  I’ll just warn you that as Danny (my dear hubs) discovered when he went off to college, girls are just as disgusting as boys, in their own way.

Hideous head pain got you down? Tired of dizziness, not being able to see straight, or losing sensation in one side of your body, or spending hours kneeling in front of the toilet? There is a consolation: sex can help with Migraine pain!  Now it’s true I’m being a bit sarcastic, and I guess that comes with the territory, because there’s a chicken and the egg problem here – it’s hard to feel sexy when you’re in a lot of pain.

When I was in my early twenties and having menstrual cramps that left me in bed moaning for hours at a time, I heard that an orgasm would help with menstrual cramps. There were times in there where I had a willing boyfriend to help out, but I found that, though I’m not generally the squeamish type, it’s hard to get into masturbation when the flow is heavy. Either it’s just a god-awful mess, or you have to spread out a towel and wear rubber gloves, and really, how sexy is that? When I managed it, I will report that yes, an orgasm helped. For a while.

Well, likewise with a Migraine. It’s a good theory. If the pain is severe, movement makes it worse. Though I will not turn up my nose at an orgasm most of the time, and would much prefer pleasure over pain, there is a level of pain I can’t seem to get past. If nauseous, that’s even worse. I defy you to show me someone who can really get in the mood when nauseous.

And there are other logistical issues. When I have a Migraine I tend to retreat to the quiet zone, my bedroom, where I can control the noise, light, and stimulation levels. I also have teenagers. I could go into a whole separate post about how difficult it is to have a sex life when you have teenagers. When your children no longer go to bed before you do, life gets complicated. Maybe it’s nature’s way of getting you ready to push them out of the nest. “Leave home already, your father and I haven’t had any nooky in…..”

But imagine, if you will, the combination of these two elements. I am away in my quiet cave upstairs, I have a Migraine but not one so severe that I can’t contemplate the deed, and I must somehow communicate to my spouse that I would like a little orgasmic intention directed my way. How do I do this without alerting the offspring, and how do we arrange the whole thing? Frankly my ingenuity level is not high during a Migraine either. I am most likely to hang the whole idea up and watch some Law & Order.

If we managed the logistics, would it help? We have managed it a few times, and I am happy to report that an orgasm, or three, is dandy for a Migraine. It may or may not make it go away, but it certainly helps for a while. Why not? Your body is flooded with feel-good chemicals and you are beyond relaxed. That’s got to help.

When I take a triptan and lie down to try to sleep off a bad Migraine, as long as I don’t have that mess situation going on, as mentioned above, I might give myself a little orgasm to help the process along. It doesn’t require much vigorous movement, and it’s not a bad tool to have in your Migraine toolkit.

– Megan

Tags: managing life with migraine, menstruation, migraine, Migraine attack, sex
Posted in Managing, Silliness | Comments (2)

Don’t be SAD – Winter’s Halfway Over

February 4th, 2009

First of all, I want to say that Groundhog Day makes me a little nuts. When I was a kid we lived in an old farmhouse beside a field and there was a groundhog in the middle of that field whom we called Mr. Wiggles. (Anyone my age may remember the jello commercials.) Now I am not doing groundhog research here today and I can’t tell you whether groundhogs are true hibernators or not, but I can tell you Mr. Wiggles never, ever, came out of his hole on Groundhog Day, come sun, snow, rain, or shadow, not for hell or high water.

Now you can talk all you like about Punxsatawney Phil, but first of all, no-one ever heard of him when I was a kid, and secondly, how is some groundhog in Punxsatawney, Pa, going to predict winter for the rest of us all over the place?  I mean, if there’s a cloud over Phil, early spring right there where Phil is, and it’s sunny 17 feet away, then 17 feet away there’s going to be 6 more weeks of winter? Puh-leez! Thirdly, they actually reach into a box and pull Phil out and make a prognostication as to whether he saw his shadow or not!  I mean, how bogus is that? And lastly, and here’s the kicker, February 2nd, Groundhog Day, is the exact half-way point of winter!  So no matter what the groundhog does or does not do, Phil, Mr. Wiggles, or your own local groundhog, on February 2nd you have 6.5 more weeks of winter! Yes, sometimes it gets warm earlier, and sometimes it snows in the spring, and it’s different depending on where you live and so on.

Sorry, I just had to go there. I was born on February 4th, that’s right, that would be Today, two days after Groundhog Day, and I’ve been hearing those groundhog jokes all my life! But here’s the good news about February 2nd (and the other good news about February 4th) – it’s half-way through winter!

By the beginning of February, the days (here in the Northern Hemisphere) are as long as they are in late October. I can’t say I’ve ever been specifically diagnosed with SAD (Seasonal Affective Disorder) but I’ve read about it and it sounds like what I experience when the days are shorter. I am more fatigued, depressed, get sick more easily, get more Migraines. Of course, being indoors in a heated house also has its part – dealing with dry, recirculated air.

Who else deals with this? I use a number of strategies to make it a better winter for myself. I’ll share the ones that have helped me but I’d love to hear from any of you who have others.

Has anyone used one of those light boxes they prescribe to give you exposure to more daylight-type light in the house? I haven’t, but I’ve used full-spectrum light-bulbs (not fluorescent!) and I find they help me. Here are some of my tricks:

• Turn on a lot of lights in the house between 4 pm and about 8 pm – this can be a problem for my Migraines, but I try to use gentle shaded lamps rather than overheads.
• Spend time taking care of house-plants just about every day.
• Get a bunch of flower bulbs to force every few weeks so I can have something blooming in the house every few weeks throughout the winter.
• Get outdoors between 11 and 2 for 20 minutes if at all possible. If it’s too cold to be out for 20 minutes, do 2 – 10 minute periods or 4 – 5 minute periods.
• Open windows and air the house out for about an hour once a week if possible. If it’s above about 25 degrees Fahrenheit, I think it’s possible. Obviously don’t do it if you’re sick or it’s a blizzard out or anything like that.
• Use humidifiers and get something to measure the indoor humidity – it should be 35 – 55% to be healthy.

There are reasons why our ancestors held celebrations in the winter to remind them that light, warmth and life would return to the earth. Groundhog Day actually falls on the date of one such ancient celebration –  Candlemas. I too rejoice in the returning of the sun! But I’m keeping the warm stuff out for 6 more weeks of winter.

– Megan

Groundhog image courtesy of Matt MacGillivray; paper whites image courtesy of Bethany L. King.

Tags: Candlemas, Groundhog Day, migraine, Punxsatawney Phil, Seasonal Affective Disorder
Posted in Managing, Rant, Tips & Techniques | Comments (0)

February Headache & Migraine Disease Blog Carnival Coming Up

January 28th, 2009

Believe it or not it’s almost February. I can tell because: 1. Winter has already gone on quite long enough and it’s not even half-way over – it will be halfway over next Tuesday, on February 2nd; 2. it’s my dear husband’s birthday in two days and that means it’s my birthday in a week (on February 4th) and we’re both going to be 50 which is really ridiculously hard to accept.

So what does that have to do with the blog carnival?  Ah, well, lest you accuse me of creeping senility, I did have a point… it’s almost February, and Diana Lee gave us lots of warning for the fabulous February Headache and Migraine Disease Blog Carnival – on the Valentine’s Day appropriate theme of “S*x & Migraines: having a s3x life despite migraines, migraines caused by six, when s&x can help with migraines – anything goes!“ Entries are due by the end of the day on Friday, February 6th. (Notice my clever attempt to foil the spammers – I’ll let you know if it works.)  Submit your carnival posts to Diana through the form on the carnival website or directly to her e-mail – find her through Somebody Heal Me.

The February carnival will be posted on Monday, February 9th at Somebody Heal Me.

Have fun with this theme – and stay warm! BRR!

– Megan

Tags: blog carnival, migraine, sex, Valentine's Day, Weblogs
Posted in Weblogs | Comments (0)

Grand Rounds for Women’s Health

January 27th, 2009

Every week there’s a round up of the best medical web writing, called Grand Rounds, and this week it’s being hosted by the indomitable Jenni Prokopi of Chronicbabe.  The theme this week?  “Totally Babelicious: A focus on women’s health care issues.”  As Jenni says, “There’s a ton of health information on the ‘net, but often, medical research and reporting focus more on men—so we thought it was high time the ladies got a little attention in Grand Rounds.”

Leading off is an informative and hilarious post on what to do about a common women’s issue – the lost tampon. There are posts on pregnancy, childbirth, chronic illness, tips from practitioners, advocacy and more. The Migraine contingent are represented by yours truly and my friend MJ of Rhymes with Migraine.

So please visit Chronicbabe for some great reads!

– Megan

Tags: chronic illness, Medicine, Weblogs, women's health
Posted in Medicine, Weblogs | Comments (0)

A Woman’s work is Never Done – So Stop Doing It – Take Care of You

January 26th, 2009

We talked recently about telling the truth about our disease. When we do that, we need to come face to face with others’ expectations of us, and whether we’re going to try to meet them or not. In the face of our diseases, one of the things we must deal with is that we cannot be all things to all people. We must balance caring for others, appropriately, with caring for ourselves. Finding balance is never about reaching perfection and staying there, it’s always a process of adjustment and change.

This is a women’s issue because most of us women expect ourselves to keep a certain standard of order around us, despite years of feminism. We see ourselves as having to care for everyone. Research shows our brains are organized to multi-task and manage our immediate surroundings, much more than men’s.  I have always lived at war with myself with my perfectionism coupled with an ability to be pretty organized but only if things go a particular way – I have trouble being flexible and still staying orderly. In the brief periods in my life when I lived alone I was pretty organized.

Living with 3 people with ADHD, while being chronically ill myself, has challenged my organizational abilities way beyond their limits and most of the time I am overwhelmed and just give up, but then the perfectionism pops in and I struggle up again and try to organize everything. And so it goes. Living with Migraine disease and the other chronic ills I struggle with has taught me something about when to give it up and say it’s not that important. I have also had to accept that my dear wonderful husband will work his tail off to feed us and run the errands and make sure the homework is done and the kids are well and happy and in bed, and he’ll try to keep up with the dishes and keep the mess down, but if I’m out of the action chances are I will get up to a mess because he can’t keep up with it on his own. I care how my home looks, and my pride has had to take some pretty hard hits, many times. Because no matter how bad I feel about the mess, my health is more important than how my home looks.

Lots of chronically ill women I know rely on their loved ones to shoulder a hefty share of work around the house, but lots more try to get it all done themselves, and run themselves into the ground. Letting go is an art. We need to let our loved ones know what we need, we need to communicate about what needs to be done and how best to split the work, and we need to accept that it won’t all get done. We will all, every one of us, die with things on our to-do lists. If we’re perfectionists, and we need to rely on others, we need to accept that things won’t be done to our standards. And live with it.

Chronically ill folk often report that their extended family members don’t understand – they don’t want to visit because our homes aren’t the way they expect. They come to visit and we are doing our best to make them comfortable, but there’s this sense that it’s all on top of something wrong – like icing on a mud-pie. Chances are they have no idea about what we struggle with on a daily basis, what it takes to be chronically ill and just manage the basics of life. Chances are we try to put on our game face and look like everything is okay, because really, who wants to complain all the time, or talk about all this negative stuff?

There’s no substitute for communication. We need to tell people that we’d love to have them visit (if that’s the case) but that they must take us as they find us, and we must lay down some ground rules. They need to understand we are ill, and we are doing the best we can. If coming to visit means pitching in, we need to let them know that. If they can’t accept that, maybe they shouldn’t be visiting.

We can’t expect to change people. Most people respond well to open, honest, uncritical communication. Some people don’t. Some people are toxic to us. A friend recently shared about cleaning her house for the visit of a very exacting and critical relative – one who would apparently not be satisfied no matter what. A key ground rule might be to establish your home as a no criticism zone. A really key part is knowing that you don’t owe anything to toxic people. You need an atmosphere that supports your health and probably the biggest piece of that is having the people in your life support your health. If you had a pet you were terribly allergic to you would be very sad and you would not blame the pet but I hope you would find another home for that pet! Toxic people are like that – you don’t even have to blame them. You just have to stay away from them – to stay alive!

Don’t let yourself be defined by those who criticize you, and don’t let being a woman mean you can’t sit down and rest. You need to take care of you, because without you, nothing else matters.

– Megan

Snake handler image courtesy of Robbie Jim.

Tags: chronic illness, Communicating, relationships, self care
Posted in Communicating, Managing | Comments (1)