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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 Carnivals and Awareness

June 8th, 2009

It’s a big week in the world of headache – first of all it’s Migraine and Headache Blog Carnival time again, with this month’s topic of “What people don’t understand about migraines & about what it’s like to live with them” posted over at Somebody Heal Me. Lots of great posts, both on and off topic. If you haven’t checked out The Headache & Migraine Disease Blog Carnival before, it was 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.

But even bigger news is that it’s National Headache Awareness week, sponsored by the National Headache Foundation.  Educational events are going on throughout the country this week to raise awareness of Migraine and other headache disorders.  A great new tool on the National Headache Foundation web site is Headache U, an on-line resource where you can look up your experiences with headache, create a personal headache profile, and get matched with the right resources for you.

A great week for educating both ourselves and the other people in our lives about Migraine Disease and Headache Disorders!

– Megan

Tags: blog carnival, headache disorders, Migraine and Headache awareness, Migraine disease, National Headache Awareness Week
Posted in Advocacy, Communicating, Weblogs | Comments (1)

Catching Up

June 3rd, 2009

A poem about talking to others about chronic illness.

Catching Up

What’s going on? (pain in my head and struggle every day)
I write and work, children grow and amaze,
I walk the field when I am able and drink in the richness of the world.
Many days my world narrows to this pain in my head, and my struggle:
I must try – help to keep this family afloat, and I haven’t the stamina
or time free from pain
to stay on my feet more than half the day.

Why haven’t I told you?
I could not bear the disappointment in your eyes,
the well-meant advice and suggestions.
This was never who I set out to be.
I did not say I think I will grow up, yes I,
this talented and brilliant child,
I will grow up to be a sick person.
No, this was not my agenda.

Why have I been out of touch?
I could not bear the hope in your voice,
when I have a good day – that now I will be all better,
I could not bear you rushing to me with your cures for the incurable.
I could not bear your pain for me, mirroring my pain for me.
I could not bear my envy of your life.
I have learned lessons costly in the teaching
and too painful for a Christmas letter.

Hope is with me every day. And fourteen years of worsening health,
more Migraines,
I grow older, the future is uncertain.
I have a sensitive system,
I have fought knowing that I have a sensitive system,
and it has cost me.

Now I try acceptance for a change.

What’s new with you?

– Megan Oltman

Writing pen image courtesy of Toshiyuki IMAI.

Tags: chronic illness, chronic migraine, poetry
Posted in Communicating | Comments (7)

Migraines and Emotional Health

June 1st, 2009

We had a very exciting teleconference yesterday with Dr. Roger Cady of the Headache Care Center of Springfield, Missori.  I think everyone who was on the call will attest to what a warm and caring soul Dr. Cady is and how he puts everyone at ease. It was an upbeat call and I think everyone on the conference came away with some practical ideas they can put into use.

We discussed the extra sensitivity of a Migrainous nervous system and how to care for that nervous system – not as something wrong or diseased, but as a process of acceptance of who we are, of the unique person we are.  When we are blessed with that extra level of sensitivity, we are sensitive to emotional cues and issues as well.  Anxiety and depression are described as “co-morbid” with Migraine because they occur together but the causal relationship is not understood at this time. The connection is probably in serotonin which is implicated in Migraine and in anxiety and depression.

If you’d like to listen to the audio of the teleconference and you are already registered for the Managing Life with Migraine teleconferences, sit tight.  We will have the audio file posted within the week and will email you the link. If you aren’t yet registered, please go to Managing Life with Migraine and get on the list! This will give you access to all the teleconference recordings as well as a spot on future teleconferences.  Next month’s call on Sunday, June 28th will be with Dr. William Young of the Jefferson Headache Center.

– Megan Oltman

Photo of Dr. Cady and Dr. Diamond copyright Teri Robert, used by permission.

Tags: emotional health, Migraine care, Migraine treatment
Posted in Managing, Medicine | Comments (1)

Counting Down to Thunder

May 25th, 2009

In this season of thunderstorms, I am finding my head more and more like a barometer, predicting the electric activity in the atmosphere.  I hope you are enjoying your Memorial Day weekend – mine has had its ups and downs with the weather! I did want to share a poem of mine with you – it won an honorable mention in the Putting our Heads Together Migraine and Headache Poetry Contest this year.

Counting Down to Thunder

Counting down to thunder,
how many miles the storm lurks in the night?
Lightning pierces slumber,
grasp the shattered shards of sleep.

Where the welcome rain?
Where the soothing break in summer’s pain?

Storms without at last pile high upon the storms within –
thunder’s crash inside my skull tore life from many days.
Come tempest wash it clean again.

– Megan

Lightning image courtesy of Ian Boggs.

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

Time for a Change in Medication

May 23rd, 2009

I am stubborn and it takes a while to convince me. At this point I have to finally admit that Topamax is not helping me very much. I diary very carefully and keep statistics on my Migraines, and I can say that since I have been on the Topamax I’ve had about a 20% reduction in my Migraines and overall head pain. Better than nothing, but not much to write home about.  I started on 25 mg in the evening, tried that for a few months, and the first two months saw my Migraines go from 8 – 10 per month to 5 – 6, but I think that was a fluke, because every month since then has been back up in the 6 – 8 range, which is average for me.

My doctor suggested I take the dosage all at night, so that any sleepiness and cognitive side effects would be mostly worn off by morning. This was okay as far as it went, but I discovered after a while that I was having an awful lot of evening Migraines. I also learned that Topamax is pretty well out of your system after around 22 – 23 hours. So the level in my bloodstream must have been getting pretty low by evening, and Migraines were breaking through at that point. When I pointed that out to my doctor, he said that he wasn’t too concerned about it “just for headaches,” he’d be more concerned if I were on the medication for seizures. I have to say I’m getting a bit concerned with a headache specialist who uses the phrase “just for headaches.”

I decided to split the dose evenly between morning and evening and the Migraine preventive effect definitely increased somewhat, but the cognitive side effects became much more noticeable. So much so that after a month on 75 mg I decided it was intolerable; I was getting next to nothing done in the course of a day. So my doctor was certainly right that taking it all in the evening lessened the side effects, it just lessened the main effects as well! I went back down to 50 mg two weeks ago.

But even on 50 mg, I’ve been so slow I am hardly getting anything done and I have almost no days where I am full of energy. I just don’t feel like me, at all. I cut down the Topa to 25 yesterday, as per schedule with my doc. Well I took this morning’s half pill (12.5 mg) and felt all my energy and alertness just drain out of me within about 15 minutes – okay, now I’m eager to be done with the stuff!

The problem is where to go next. My doctor is recommending amitryptaline, an old tri-cyclic anti-depressant. Some people experience sleepiness, fatigue, and weight gain on it. I read on line that some of the top Migraine specialists don’t prescribe it because it is “primitive.” It’s actually off the market as an anti-depressant, but for Migraine prevention is prescribed at a much lower dose than for depression. On the other hand, some people experience no side effects.

I’d like to propose some alternatives to my doctor, but I’m feeling a little overwhelmed by the research involved. I look at side effects lists and I don’t like any of them. I read others’ experience but I know that what was true for them won’t necessarily be true for me. I just know that 6 – 8 Migraines a month is too many. I’ve had worse, and many of you out there live with worse. But I am sure I can do better!

– Megan

Still looking for that magic pill!

Block head image courtesy of Stefan; magic pill image courtesy of [O*] ‘BharaT.

Tags: migraine prevention, Migraine preventive medication, migraine specialist, Topamax
Posted in Communicating, Managing, Medicine | Comments (7)

Keeping the Faith

May 18th, 2009

I haven’t posted in a bit and I find myself feeling a little guilty about it.  The past few weeks have been busy, but that’s not unusual, and they have contained several Migraines, but that’s not unusual either.  My life is more complex than I like.  If I was my own coaching client I might advise myself to simplify.  Since I can’t get outside my own head sufficiently I don’t know what I would suggest cutting out.  The fact is that times are tough economically, and my family is not exempt from that, and I have several businesses to keep up with, a family, a house, and several chronic illnesses, and it’s a lot.

I do know, though, what works.  I know I need enough sleep, though when I feel like I didn’t really have any fun time all day, it’s hard to put down my novel or turn off the tv, or tell my darling daughter (who is 18 and likes to talk late in the evening) I need to go to bed.  I know I need a walk or some exercise in the morning, though when I haven’t slept well it feels like I need the extra bit of sleep more, and when work awaits it’s hard to remember that I will focus better and have a better attitude if I exercise first.  I know I sometimes need a nap after lunch if I want to avoid a Migraine or fatigue.  I know there’s no point in sitting at my desk trying to force myself to focus if my brain won’t do it – a break: a brief walk, a brief snooze, a ten minute clean-up in the house or office, any of these will refresh me and help me return my focus, and time spent trying to force myself is time wasted.  I know at 5:30 I need to leave my desk and focus on my home and family.

I have to confess, though, that knowledge is not the same as action.  I know all these things, but I don’t always do all these things, especially in the face of my anxiety – over finance, over my illnesses, over my daughter leaving home in 4 months, you name it.  Doing the right thing, when I don’t feel like it.  Now that takes faith.

Some days we get up, and we have no energy.  Saturday was like that for me; weather triggers have become much more prominent for me this year and thunderstorms were threatening all day on Saturday.  I felt oppressed – I was in Migraine pro-drome all day.  And so (with some encouragement from my wise husband) I went for a walk.  I did not want to go for a walk.  I wanted to crawl under a rock.  The exercise helped to restore my perspective, raise my endorphin level, and give me the energy I needed to enjoy the day. Going for that walk was an act of faith.

Keep the faith! What do you need to do to keep yourself on track, even when you don’t feel like it?

– Megan

Tags: exercise, Migraine triggers, weather triggers
Posted in Communicating, Managing | Comments (2)

May Headache and Migraine Blog Carnival

May 12th, 2009

The May 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 was on the topic of “Talk about where to find support: Where do you find it & where can other migraineurs find it?” It’s a very important topic – Headache disorders and Migraine disease are very isolating and we need support! Head over to Somebody Heal Me for a lot of good reading.  Enjoy.

– Megan

Tags: blog carnival, Migraine disease, migraine support, Weblogs
Posted in Managing, Weblogs | Comments (0)

Getting the Support you Need

May 8th, 2009

If there’s anything that makes me want to throw up my hands and give up, it’s how complex Migraine disease is. Migraine disease has multiple triggers, can take multiple forms with different symptoms and effects on our lives, and has multiple treatment possibilities. I could not manage all of this without support. It’s lonely dealing with a disease that eats away days and weeks of our lives, and isolates us where the sound and the light won’t bother us. Treating Migraine takes managing multiple aspects of our lives and health – that takes support. The people who support me remind me that every day will not be so bad, that life is still worth living, that there is hope. The things that support me give a structure to my life that I can count on when I am not functioning at my best.

We need to cultivate our support systems – building them up when we feel well so they will be there when we need them. We need to do what we can for the people who support us, when we can. In other words, we need to build our stock of resources.

What kinds of support are there? Consider these:

• Professional support – this includes:
  • Doctors – you need a good medical doctor to track and coordinate your care and help you find appropriate medication.
  • Complementary practitioners – chiropractors, massage therapists, acupuncturists, bio-feedback practitioners, and nutritionists, among others, can help you relax, rechannel your energy, maintain your general health, manage and reduce pain.
  • Therapists – migraine is not a psychological disorder! But supportive therapy can help us deal with the emotions our illness causes.
  • Coaches – a coach can help you create a plan to manage your life with Migraine and help you generate the energy and enthusiasm to move ahead with your plan. That’s what I do – contact me to hear more about it. Both coaches and therapists can be a great help in picking you up when you are down.
• Personal Support:
  • Friends, family members, neighbors, even bosses or co-workers. You will need to make sure that they have some basic information about Migraine and that they know you have a disease. You’ll need to be clear about what kind of support or help you need from them.
  • Another great form of personal support comes from other migraineurs, whether you join an online community or group such as my personal favorite, the forum at My Migraine Connection; chat with other Migraineurs on Twitter; join or start a face to face Migraine support group; or get on the phone with other Migraineurs in a relaxation teleclass; or join one of our Managing Life with Migraine teleconferences.
• Medication support – you need medication choices to support you in preventing migraines and stopping them when they occur.
• Tool-kit support – Whatever you use to comfort yourself when you do get a migraine – comfy pillows or blankets, ice packs, hot baths, cups of tea, essential oils, soft music, soft lights, whatever you use to help you to feel better.
• Structure & routine support – this is what you do regularly to make the most of your well time and stay as well as you can. It will include your medications and nutrition, your exercise routine, relaxation routine, sleep routine.

Where is support missing in your life? Sometimes making a list of the pieces that are missing and taking just one step at a time can make a big difference. Like finding one person to talk to, or scheduling one doctor’s appointment.  Giving a teleclass a try, or stocking up on comfort supplies.

What can you do to build your support system?

– Megan

Hands together image courtesy of Maria Angelie.

Tags: managing life with migraine, migraine support, Migraine treatment, migraine treatment plan
Posted in Managing, Medicine, Tips & Techniques | Comments (4)

One Million Dollars for Moms for Migraine? That shouldn’t be Hard!

May 8th, 2009

The National Headache Foundation has a great idea.  There are at least 36 million Americans who suffer from Migraine disaease.  (Yes, look around.  That’s one out of every 12 people you know!) If just one million of us gave a dollar each, that would raise a Million dollars for Migraine research!  Did I mention that Migraine research is so underfunded that the research is about 30 years behind any other major disease that impacts this many people?  Yes, I did, but that’s okay, I’ll mention it again.  Please go back and read what we were lobbying for at Headache on the Hill.

Only one out of 36 of us has to participate to make this work.  Are you game?  Go on over to the National Headache Foundation and give just one dollar!

Teri Robert lets us know about a lovely added twist, just in time for Mother’s Day!  Have a mother or grandmother with Migraine Disease?  Are you married to one?  Is your sister one?  How about giving one dollar for Migraine research in her name – a lovely way to recognize her on Mother’s Day!  Read Teri’s post The Perfect Affordable Gift for Migraineurs here.  The National Headache Foundation is launching the Migraine Million Campaign just in time for Mother’s Day – to raise awareness that this is a genetically based disease.  Talk to your Mom about Migraine disease.

– Megan Oltman

P.S. Six percent of men have Migraine disease too. You can give a dollar in the honor of all those Mother’s sons!

Tags: Migraine disease, Migraine research, National Headache Foundation, Teri Robert
Posted in Advocacy, Current Affairs | Comments (0)

Treating-People-Like-Swine Flu

May 2nd, 2009

I don’t know about you, but I was not at all shocked to learn that the CDC was investigating large-scale factory-farming pig feedlots in Mexico as the probable “ground zero” of the new H1N1 type A influenza mutation.  Feedlots belonging to US agribusinesses, mind you.

According to David Kirby in the Huffington Post last week,

One of the first things they [the CDC] will want to look at are the hundreds of industrial-scale hog facilities that have sprung up around Mexico in recent years, and the thousands of people employed inside the crowded, pathogen-filled confinement buildings and processing plants.

“Swine Flu: Will Factory Farms Kill Millions?”

I’m not shocked, but I’m disgusted. Move the feedlots to Mexico where you can crowd people and animals in together in unsanitary conditions; let’s destroy the immune system of the world while we destroy the environment and the economy.  Oh don’t get me started.  Go read The Omnivore’s Dilemma.  Buy local organic food.

As for me, I’m in bed for the last two days.  My glands are painfully swollen, I have body aches and chills, I’m sneezing and coughing.  I don’t have a fever or any respiratory distress, and my family members are taking good care of me, so don’t call 911.  I don’t think I have swine flu but I feel awful so please forgive me if I’m behind on posting.

– Megan

Three pigs image courtesy of Eric Moeller.

Tags: Agribusiness, Organic Farming, Swine Flu
Posted in Books, Current Affairs, Rant | Comments (4)