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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!

Quite a Week in Migraine Land

June 27th, 2009

Hello dear readers, I’ve been quiet this week. It started with my daughter’s high school graduation on Monday - where it has apparently become the fashion to cheer for one’s graduates with air horns. Air horns aimed at the back of the head + bright hot sun & humid weather following many weeks of rain + more black storm clouds rolling in by the end of the ceremony + an emotional day = Migraine! By the way it really sounds like Migraine Puppet and I were at the same graduation, or perhaps are living the same life!

I have been blessed with plenty of work to do lately and in the current state of the economy can’t turn much of it away, so I haven’t been able to devote much time out to Migraines this week. I’ve taken my medications and laid down but I’ve been back up working sooner than would be ideal, and with more storms, more rain, more graduation parties, more emotion (though thankfully no more air-horns!), teenagers’ cars breaking down by the side of the road… it’s been quite the Migrainey week. We’re also getting ready for a graduation party of our own next weekend, deep cleaning the house, stirring up lots of dust!

Tomorrow I’m looking forward to taking some time out to talk to Dr. Bill Young about preventing and treating daily headache and intractable Migraine. (Do you think he’ll tell me to slow down?) If you’re registered for the Managing Life with Migraine teleconference series, don’t forget to call in at 4 pm Eastern time. If you’re not registered, there’s still time, just follow the link and sign up, and you’ll get the details to call in.

Hope to talk to you tomorrow!

- Megan

Tags: air-horns, graduation, managing life with migraine, storms
Posted in Communicating, Managing, Musings | Comments (0)

No, You’re not Crazy, You just Have Migraines

June 18th, 2009

On last month’s Managing Life with Migraines Teleconference with Dr. Roger Cady one of the things we discussed was living with the hyper-sensitive nervous system we have as Migraineurs.  Dr. Cady helped us recognize that in caring for ourselves and our emotional helath, we need to nurture the sensitive nervous systems we have.  This was a theme that resonated with many of us on the call, and I’ve had a few participants telling me they never knew that…

As a Migraineur, you might have a highly developed startle-reflex, and jump at every loud noise…

As a Migraineur, you might not be able to process multiple auditory inputs, but feel overwhelmed, panicky, and like you can’t hear when there are many noises at the same time, or even several people talking to you at the same time…

As a Migraineur, your sense of “not liking” crowds is more than just a dislike, it’s an inability to process too much sensory information at the same time - in other words, it’s not psychological, it’s neurological…

As a Migraineur, sensory overload is a very real thing, with very real consequences for you. If you’re like me, you have been accused by co-workers, friends or family members at some point of being hyper-sensitive, neurotic, or just plain no fun because of your tendency to break down in the face of too much noise, light, or overall stimulation. Or you have accused yourself, and pushed yourself to continue in the face of too much, because you want to keep up with everyone else.

When you feel overloaded, that is part of your early warning system.  Heed the warnings.  Seek some quiet.  Take some deep breaths.  Use relaxation routines.  I have some very easy relaxation exercises you can use in the midst of everything to calm your system back down. Continuing the overload leads to our systems’ form of short-circuit - a Migraine.

Are there things you’ve noticed about yourself, like startling at loud noises or panicking in crowds, that you can see are part of your Migrainous nervous system? Please share them!

- Megan

Crowded street image courtesy of Wm Jas.

Tags: managing life with migraine, relaxation techniques, sensitve nervous system, startle reflex
Posted in Managing | Comments (12)

Move a Muscle, Change a Thought

June 12th, 2009

Move a Muscle, Change a Thought. I first heard that in a self-help program many years ago. It’s easy to stay stuck in a certain way of thinking, to stay down and confused and immobilized when we stay in the same place, looking at the same things. Get up, move, do something different, move a muscle, change a thought. There is now all kinds of scientific evidence to back up this idea, of the benefits of physical activity and exercise. I’m not just talking about working out or even taking a walk, though. Just do something to shift, move, change your perspective, take some action, get something moving.

This is as true for those of us with Migraine disease and chronic illness as it is for anyone else. Maybe more so. When we are in chronic or frequent pain it’s hard to act on this. I don’t deny it. But as hard as it is, it’s very important. It may be that walking to the mailbox is as far as you can go. It may be that sitting up for an hour instead of lying down is a major challenge. Do it, if you possibly can. We need accomplishment in our lives to make our lives feel worthwhile to us. We need goals, even tiny ones. We need to feel we are contributing, even if the extent of the contribution is to wash 3 of the dirty dishes. There will be those times when we cannot do anything but endure our pain, or when attending to our healing is all we should do, but when it is not one of those times, it is time to be doing something.

We also need the shift in perspective. When you stay in one place for a long time, your world can close in. You can’t see your way out of problems. Moving your body changes what your eyes see, it helps your blood flow, it helps you breathe more fully, and it opens up your thinking.

I just completed the set of BREESE relaxation recordings which are available on the products page here on Free my Brain. The final BREESE Breathing recording teaches a breathing and movement technique I use to help get the breath and blood moving and the whole body relaxed. You can use this when you have mild head pain, or in the post-drome phase after a Migraine to start moving again and aiding your recovery.

Another technique taught me long ago is to take a green break. Plants produce the oxygen we need to survive, they also produce negative ions which soothe us. Get outdoors and be with a green growing thing. If you can’t get out, spend a few minutes with a house plant. When all else fails, look out a window at something green, or even look at a picture of trees, fields, the natural world. Get up, leave the house, cross the room, or even roll over and contemplate something green. Let your worries flow out of you into the green growing world. Just as plants use our carbon dioxide, the waste from our breath, to produce oxygen, let the waste of our minds, our worry and anxiety, flow out into the natural world and be transformed.

Life rewards action. There’s another great saying, and I don’t know where I first heard it, but I have found it to be true, for me and for the people I work with. Here in New Jersey we have had several weeks of almost non-stop rain. It is gray, damp and chilly, except when it’s gray, damp and muggy. Although I don’t trigger at every barometric pressure change like some Migraineurs, I did eventually get a Migraine over the past few days. It was very hard to get up and move. But once the active pain phase had passed, and during a break in the clouds, when it was just drizzling instead of down-pouring, I went out for a walk. I walked gently, doing my relaxation breathing in rhythm with my steps. I came back more optimistic, with the fog of post-drome beginning to lift. I played a game with my kids; I began writing this piece.

Do what you can to get in action. Little actions can make a big difference. Roll over, shift your perspective. Move a muscle, change a thought. Let me know how I can help!

- Megan

Walk in the light image courtesy of H. Koppdelaney; Rain shower image courtesy of AlmazUK.

Tags: chronic illness, exercise, getting in action, Migraine disease, self-help
Posted in Managing, Musings, Tips & Techniques | Comments (0)

Juggling Work & Illness

June 10th, 2009

Some of you may know that for the past few months I have been writing articles on Health Central’s My Migraine Connection on legal issues that relate to Migraine and chronic illness - doctor/patient confidentiality, protection of your Medical Records under HIPAA, Accommodations under the Americans with Disabilities Act, and look soon (in the next day or two) for an article on taking intermittent leave under the Family Medical Leave Act. You may know that in addition to coaching Migraineurs and others with chronic illness in how to manage life, get better, and live well with chronic illness, I am also a business coach, an attorney and a mediator, and I’m helping my husband develop several other web-based businesses for our family.

I try not to make too many recommendations that I haven’t tried myself, and so if I am going to coach and advise people in how to perform the extreme juggling act that is life with chronic illness, I guess I’d better be quite the juggler myself. I didn’t necessarily set out to do it on purpose - it worked out that way. When full time lawyering didn’t fit with chronic fatigue and triggered too many Migraines, when business coaching dropped way off in the current economy, when Migraine management coaching was a great idea but needed some time to develop, I have tried to keep nimble and keep using all my skills, trying new things and renewing old ones, all while getting sufficient rest, managing my triggers, and practicing my intentional relaxation.

I really started out this post to point you to the writing I’ve done on legal topics lately, because I think as you are managing your life with Migraine, these are useful pieces of information for you to have. But I do think a lot about all the many pieces that make up my life, the balls I have up in the air, as I work to manage it all, and to help those of you who work with me to manage what you juggle as well. It’s great to have something to work on. You don’t need to have as many things to manage as I do - I’m probably an extreme case. But it is important for us to have a sense of purpose and to be making a contribution in life - even when we are ill. It may not be work for pay - but if that’s possible, it’s a good thing! I recently added a little part-time job to my mix that keeps me on my feet for several hours, several days a week. Despite some initial exhaustion, over all my stamina seems to be building.

I hope for you that you have something that can get you out of bed and give you a sense of purpose - at least some of the time. Let me know how your juggling act is going!

- Megan

Street juggler image courtesy of Amit Bansal.

Tags: disability rights, managing life with migraine, work-life balance, working
Posted in Advocacy, Managing, Musings | Comments (1)

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 (0)

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 (6)

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 (5)

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)