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Posts Tagged ‘migraine’

Great Poetry inspired by Pain

April 28th, 2009

I’m really impressed by the winning poems in this year’s Putting Our Heads Together Migraine and Headache Poetry Contest, over at My Migraine Connection.  I don’t impress that easily when it comes to poetry – these are an exceptionally well written bunch, lyrical, moving, interesting, sometimes funny, sometimes wacky.  I guess it’s only fair to let you know I have an honorable mention in there, but I’m not saying all this to boast.  I’m very happy to be included but I think mine is far from the best.

I’m in the midst of a not very creative Migraine at the moment – some Migraines leave me able to write eloquently and some leave me pretty wordless, you know? I guess it’s a question of which part of my brain the storm is passing over.  I’d love to be able to tell you more about what moves me in these poems, and why, but it’s beyond me right now.  Would you go read some, and come back and share your favorites with me?  I’m particularly fond of the fourth place entry, “Pain Breaks Like Teeth” by Kate Brady, which opens

Pain breaks like teeth into rice cakes all over the floor.  My pieces aren’t swept up because I haven’t cleaned in weeks.

Enjoy!

– Megan

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

April Headache and Migraine Blog Carnival

April 14th, 2009

The April Headache & Migraine Disease Blog Carnival is posted at Somebody Heal Me.  Diana Lee created the carnival to provide headache patients and people who blog about headaches with opportunities to share on topics of interest and importance to us.

This month’s carnival had no set topic and garnered an interesting collection of posts.  There is a lot of good reading here.  Some of my favorites – James of Headache and Migraine News Blog gives us exciting news of a new upcoming Migraine drug.  Rosalind of Working with Chronic Illness makes some really insightful points about how to avoid and deal with errors at work resulting from your illness. Kelly of Fly with Hope has the inspiring idea of writing herself a letter to remind herself of hope when she’s in pain. And Rena of Dealing with Headaches – well, Rena, you know you always make me laugh, but this month I’ve got to say you win the Ewww award!

I don’t want to slight anyone – every entry is worth a read!  Enjoy.

– Megan

Tags: chronic illness, migraine, Weblogs
Posted in Weblogs | Comments (0)

Migraines, Travel, Social Life

April 13th, 2009

We had a nice four day trip over the weekend to visit friends in Boston. A wonderful family who lived in our town for two and a half years.  They were our around the corner neighbors, and our fourteen year-old sons are best friends.  They are warm and easy to be with.  It’s a six hour drive each way.  We were actually in Boston from about 7 pm Thursday until 1 pm Sunday.

It’s ridiculous how hard it is to plan for and face a simple weekend trip like that.  I needed medication refills and discovered various mistakes that had been made in the prescription that involved multiple phone calls and trips to the pharmacy.  I recently increased my Topamax dosage and I am experiencing once again the mental cloudiness I have had at each new dosage level – making it hard for me to stay focused on a task or remember what I need to do next in a sequence of tasks.  This is beginning to lift, but it’s not gone yet.

Of course I had to pack all my meds, for preventing Migraine, in case of migraine attack, all my supplements, my thyroid meds.  My husband and son had meds to pack.  My eighteen year-old daughter was staying behind to work and dog-sit, but we had to be sure she had food and instructions. My husband and I are both at rather crucial points in business and there were things that had to be finished before we could hit the road.  Our accountant called just before we were leaving with additional details needed for our taxes.

I get pretty stressed with highway driving, especially on high travel weekends like this one, especially in the high-speed, high-pressure, road-rage rampant, “I’m more important than you are and I own the road” Northeast (where I live). That kind of stress goes right into my neck muscles and can lead to headaches and Migraines.  We passed a couple of horrendous accidents on the way there.

I left without the spare pillows I usually bring – due to several injuries I sleep propped up so that I don’t ache so much I can’t sleep. I found myself a bit embarassed by my inability to find words and complete sentences in the morning and evening when my meds were strongest. And Saturday afternoon I passed on a trip to the Aquarium with the families, and lay down with a Zomig, a book, and eventually a nap, to get rid of a Migraine.

AND – you’ve listened to my litany of complaints, here’s my conclusion: I had a great time.  It was so nice to get away.  It was so lovely to spend time with friends.  It was worth the stress of driving.  So what if I had a Migraine – chances were way better than even I would have had one at home anyway, without the visit.  So what if I stumbled over words a little – entertaining though I may be, my conversation is not the only point of the visit (shocker, I know!).  We came back renewed and refreshed. Tired after our travel, yes, but it was so very worth it.

We don’t get out much. It’s hard to make plans when Migraine and other illness often comes along and changes them. Money has been tight. My house is not as clean and neat as I’d like it to be, so I don’t ask people over much. But it’s so important to be with people. Every little bit helps. True friends don’t love us for how perfect our housekeeping is or our speech is or any of that.

– Megan

Open door image courtesy of emdot/marya.

Tags: friendship, migraine, relationships
Posted in Managing, Travel | Comments (2)

Only a Migraineur could Understand…

April 1st, 2009

Last year for April Fool’s Day I hosted the Weirdest Migraine Triggers Ever contest. We had some doozies submitted – the winning entries are worth a read.  Weirdest Migraine Trigger Winners.  I’m not feeling very ambitious today – I am in post-drome from a major two day Migraine, so I don’t know yet if this will be a contest or what.  But it’s a question, anyway.  Please respond!  Oh, and by the way – gross-out alert (or maybe just t.m.i.) – not for the squeamish.

How would you complete the sentence: only a Migraineur could understand ___________.

Here’s my example.  I was terribly nauseous all day yesterday, and at one point I got up and scrubbed out the toilet bowl. This struck me as a truly insane act, but completely necessary nonetheless. I had pounding headpain and excruciating nausea, but the bathroom hadn’t been cleaned in a while and I thought, if I’m going to be on my knees in front of this bowl, at least it’s going to smell clean.

“Only a Migraineur could understand getting up with a pounding head and heaving stomach to scrub the toilet bowl so you can upchuck into a clean-smelling toilet.”

Come on, bring it on, what else could only a Migraineur understand?

– Megan

By the way, I’m sure there are other chronically ill folks who could understand this one as well… you can fill in your illness here if you like.

Cleaning supplies image courtesy of Collin Anderson.

Tags: April Fool's, migraine, nausea
Posted in Silliness | Comments (12)

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)

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)

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)

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)

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)