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Posts Tagged ‘Migraine disease’

Spring & Hope

March 7th, 2010

Hope springs eternal in the human breast;
Man never Is, but always To be blest:
The soul, uneasy and confin’d from home,
Rests and expatiates in a life to come.

-Alexander Pope,
An Essay on Man, Epistle I, 1733

Hope springs. Spring and hope. Spring is sprung. Today was the second of two sunny, 50 degree plus days. The snow is finally melting away and snowdrops are blooming in the yard. Danny and I took a long walk, my second in two days, and talked about what we want to do in the garden this year. And with the improvement in my Migraines and my steady new work schedule, it’s more likely that I will be able to get out and do some of the work.

There’s plenty of yard clean-up to do, but our snow’s not all gone yet and the ground is mushy. We spent a while working on getting a large broken limb out of the tree overhanging our driveway - a limb that threatens to fall on our cars with every strong wind. A ladder, a pruning saw, Danny’s ingenuity and an apple-picker swung on a rope later, he pulled the monster down. It hit the ground with a resounding thud that made me very glad no car windshields were below it. Or human noggins either. What’s amazing is how alive I felt, and how enjoyable it can be to tackle a physical problem like this, out in the fresh air.

I don’t know how much we’ll get done of our ambitious plans - I still have a few days of Migraine black-out each month, and I am battling constant soreness from my fibromyalgia. Yesterday I was more active than I’ve been for a while - kitchen clean-up, multiple loads of laundry and a 40 minute walk around town. I ached all over and slept badly. But I set out to match yesterday’s activity level today - knowing that if I give in to the aches and stay inactive they’ll just get worse.

Danny said when we came in from the yard - “It’s a different kind of tiredness - it feels good.” I remember that feeling, but I don’t really experience it any more. All tiredness makes me ache all over, be it physical, mental, emotional, indoors or out. But my world does open up with the warmer weather. I feel like the whole world has expanded. I want to be out and doing, before New Jersey’s hot humid summer comes and shuts me down again.

To all of you with chronic illness - wishing you hope this spring, and that you may enjoy the fresh air and growing things. What do we live for, what pulls us forward, but sublime and ridiculous hope with each new day?

- Megan

Tags: Alexander Pope, fibromyalgia, gardening, hope, Migraine disease, New Jersey, Spring
Posted in Musings | Comments (0)

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)

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)

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)

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)

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)

Telling the Truth about Your Disease

January 15th, 2009

Here’s a New Year’s Resolution for you: Tell the truth about your disease this year! How many of us are walking around in a state of denial, not having told the truth to ourselves about our disease, or about what we need to do to manage it? How many of us are in a state of conflict, hurt feelings, or even losing relationships with the people in our lives who don’t know the truth about our disease either?

What do I mean by telling the truth? It may be that many of us would be better off if we didn’t have to work, or care of our families, if someone else would care for us, or pay the bills, but we just don’t live in that reality. Telling the truth doesn’t mean you have to deny your reality, or not deal with it. Quite the contrary, your reality may be that you have to work, and care for your family, but you can’t care for your home to the standards you have always had, or you can’t work the kind of hours you once expected of yourself, or you can’t micro-manage your family members but have to allow them to make mistakes and muddle through. There may be many things that you have to let slide, and telling the truth may involve reminding yourself that if you exacerbate your disease through overwork, lack of rest, not caring for yourself, then none of the other things you value will be possible. For many of us, the truth is we must put ourselves first, and that isn’t some kind of nasty self-indulgence, it’s not “No I can’t take care of my child I have to watch tv and eat these bon-bons,” it’s “I must care for my well-being or there will be none left of me to care for others.” It means put on your oxygen mask first on the air-plane or you will both be dead!

Denial is what has us clean one more thing instead of resting, or ignore the migraine twinges instead of taking the medication to treat early. Denial is what has us try to be super-women and men, has us go on hosting huge parties in order to not disappoint the family, or do whatever we believe is expected of us, at the expense of our well-being.  Denial is lying to ourselves about our own disease.

This may sound harsh, and believe me if you find yourself in a state of denial you have all my sympathy. I find myself there from time to time as well. It is human, and it will happen. The key is to practice telling the truth, to have it become a habit. You may not want to answer “How are you?” with complete truth in every situation - there may be reasons not to do that at work or in some social situations. But practice telling the truth about who you are to yourself, and to someone! Come here and tell it to me, in a comment. Sign up for the e-course The Six Keys to Manage Your Life With Migraine (in the upper right corner of the page) and tell it to me there. Register for a relaxation or support teleclass and talk about it there. Go to a Migraine Forum and talk about it. Find a friend or two you can tell. Write it in a journal, or in your own blog. But practice telling the truth.

And remember that there are people in your life who need to know the truth about your disease as well. You may want to practice telling that truth to yourself first, but your spouse or significant other, your parents or children or siblings or best friends, need to know some basics.

• They need to know if you are a Migraineur that you have a neurological disease which you cannot control.
• That when you have a Migraine attack you experience extreme pain, nausea, dizziness, whatever the particular symptoms are for you, and that you must treat it and avoid light, sound and stimulation until it passes.
• They must know something of the dangers of leaving a Migraine untreated.
• And they need to know that you are not doing this on purpose, to avoid being with them, or work, or obligations, that you wish you didn’t have this disease, that you appreciate everything they do for you, and that you need their love and help and support.

Here’s a link to a great letter Teri Robert wrote to share with the people in your life to help them understand Migraine disease. I can’t promise you that every person in your life will understand and support you. If you can keep the conversation about your disease and asking for their help and understanding, and keep any hurt or accusations about past actions out of it, most people are more receptive. I can promise you, though, that it is important to take this step. More hurt feelings and lost relationships come about from not trying, from failing to communicate, from wishing, hoping and expecting the other person to understand. There’s no way around communicating, scary though that may be.  If I can support you, please let me know.

- Megan

Heads together image courtesy of Vera & Jean-Christophe; conversation image courtesy of John Wigham.

Tags: Communicating, denial, Migraine disease, self care, telling the truth
Posted in Communicating, Musings, Tips & Techniques | Comments (2)

It’s Blog Carnival Time Again - What Keeps You Going When You’re Suffering.

January 14th, 2009

Kudos to Diana Lee who got her act together in the New Year to get the Blog Carnival out right on time - yours truly is still adjusting to a new schedule and not even getting over here to post very often, so you won’t see an entry from me in this month’s carnival! But it’s a great topic - What Keeps You Going When You’re Suffering. So pleaase head on over to Somebody Heal Me for the January edition of the Headache & Migraine Disease Blog Carnival for some great reading to keep you going. I will be heading over myself for some reads on such topics as yawning, sleeping it off, revenge, and new Migraine drugs, as well as other coping strategies! See you there!

Generally speaking, a blog carnival is a collection of links to a variety of a blogs on a central topic. The Headache & Migraine Disease Blog Carnival has been created to provide both headache and migraine disease patients and people who blog about headache disorders with unique opportunities to share ideas on topics of particular interest and importance to us. Visit the link to this month’s carnival for a collection of informative entries on the theme of What Keeps You Going When You’re Suffering.

- Megan

Tags: headache, Migraine disease, Weblogs
Posted in Managing, Tips & Techniques, Weblogs | Comments (0)

Keep Working, Girlfriend! Book Tour

November 1st, 2008

One of the most important issues for any of us facing chronic illness is the issue of staying employed, or
how to support ourselves while managing our illness.  It is an issue we will be exploring at greater length in the coming months here at Free my Brain as we look at the merits and drawbacks of keeping a job, finding home-based employment, starting a business, or not working at all, when managing life with Migraine disease.  Rosalind Joffe, Chronic Illness Coach, specializes in helping women with autoimmune diseases keep on working!

I’m participating in Rosalind’s Virtual Book Tour, along with other chronic illness bloggers, to bring attention to this important new book: Women, Work and Autoimmune Disease: Keep Working, Girlfriend! From Nov. 3 - Nov. 21,  the other bloggers and I will be reviewing the book,
interviewing the author, hosting guest posts, and bringing attention to this important issue.  Rosalind will be writing a guest post here on Free my Brain on Tuesday, November 18.  First stop on the tour will be at Rhymes with Migraine on November 3rd.  In the meantime, please visit Keep Working Girlfriend for a list of the other bloggers/stops on the tour.  You can also check out the book itself, which is described as a “voice of warmth, wisdom, understanding, and sisterhood,“ encouraging “women with chronic illness to stay as successfully employed as possible.” Click on the image of the book at the right to read more about it or purchase through Amazon.com.

- Megan

Takes a licking but keeps on working!

Tags: autoimmune disease, chronic illness, Migraine disease, Rosalind Joffe, women, work
Posted in Books | Comments (0)

Migraine News from Between my Ears

October 17th, 2008

A funny thing happens when you start blogging.  There is this little bit of celebrity that arises.  I can admit that like many people I once secretly wanted to be famous.  My friend Laura told me in High School that she pictured me as a kind of revolutionary leader, with thousands chanting my name.  If that had ever been my ambition, I’d have to say that I failed miserably.  I’ve made it through nearly 50 years of life and I don’t think even dozens have ever chanted my name.  Not at the same time, anyway.

But I digress.  I started this blog for a few reasons.  I wanted a place to share my thoughts on living with Migraine disease, and the other chronic illnesses I live with.  I particularly wanted to share my hope and strength, as someone who has come a long way in managing a life with these conditions.  I wanted to join the warm, intelligent, funny and committed community of Migraine and headache
bloggers and advocates who are making such a difference in the lives of patients and in advancing the understanding of this disease.  The big reason was this moment of truth I had almost a year ago, when I realized that my chronic illnesses are not just an impediment in my life; they
are an opportunity to
share my professional tools and skills, and the
wisdom I have accumulated, to help others manage their lives with
Migraine.  I wrote a bit more about that a few months back in My Migraine Story.

I didn’t really start the blog to keep the world posted on the doings in my own life.  I tell a lot of stories, partly because I come from a family of storytellers,and partly because I’ve always made points (with clients and anyone who will listen) by telling personal stories, about things that happen and lessons I learn.  So it’s been a lot of fun doing that here.  And lo and behold, I learn that people are actually following (to some extent) what’s going on in my life.  Little old me, Megan, Rachel & Adam’s Mom, Danny’s wife, Joan & Jim’s daughter, Jon & Ellen’s sister, the lady in the house on the corner by the field, the little red-head… that one.  It’s a small and gentle sort of celebrity, but I find when I don’t follow up on things I’ve mentioned, sure enough, you’re actually listening, and sometimes you ask.

So the news between my ears…

• I’m looking for an allergist to determine whether I should even pursue this Medication Allergy challenge test idea, because as my friend Medieval Writer of Sparkling with Crystals reminds me, anaphylactic shock can potentially kill you faster than a doctor can save you, even in the hospital with a crash cart standing by.  
• I’m spending a little time, just a few calls here and there, my head and energy levels allowing, volunteering for Barack Obama’s campaign.  Please get out and vote for better health care!  You don’t have to chance feeling well enough on election day; you can vote early in many states - go to Rock the Vote to check your state’s rules.
• My difficulties with the Topamax are settling down.  We’ll see what happens when I go back to Dr. G and increase the dose next week!  Tingling has disappeared and the cognitive effects are fading.  An unexpected benefit seems to that it is functioning as an anti-anxiety med for me! I am a pretty
  anxious person by nature, and I tend to obsess on things, but it seems like the slight loss of focus I have on the Topamax means I can’t focus on something long enough to really obsess and get anxious! Kind of weird - but I’m just not worrying as much!  MaxJerz of Rhymes with Migraine pointed me towards this piece on Health Central’s Anxiety Connection indicating that Topamax is sometimes prescribed in combination with other drugs to treat anxiety.  Who knew?  (Well obviously, someone did, but not me!)
• I don’t think the Topamax is having a major inhibiting effect on my Migraines yet, though I haven’t had a really bad one in the month I’ve been on it.  I am doing a very slow titration to minimize side effects and will probably increase the dosage when I see my HA specialist next week.  Judith Warner wrote a pretty good piece about her difficulties with Topamax (not named, but quite identifiable) in the NYTimes today, but they didn’t publish my comment.  I am trying not to take it personally!
• Our Health Insurance Hassles and Headaches may turn out to be a blessing in disguise, NO
  thanks to Oxford (who I will still refer to as the insurer from hell) because it looks like there are a range of better, more affordable options out there for us.  I got a lot of info that may help others, too, and will try to do a whole post on it soon.  For others who are struggling with insurance, if you have children, be sure to check out your state’s insurance coverage for children.  Some states now extend that to parents of children 18 and under.  I know this is no help for childless people or those whose kids are grown; you deserve health insurance too!
• In the meantime, I seem to be developing a lot of Acephalgic, or Silent, Migraines (phono & photo-phobia, dizziness, without head-pain) in the evenings.  It’s better than having the head pain, but still means I have to retreat to my cave (i.e. bedroom) for the evening and can’t hang out with the family much.  Bummer.  More to talk to Dr. G about next week.
• And, (a drumroll please…) my biggest news… by next week (I hope) I should be launching my new website, containing this blog and other resources for Migraineurs, including relaxation teleclasses - stay tuned for more!  Hard at work on it now - soft greens and yellows - looking pretty - can’t wait…

Hope your heads treat you well and you have an AWAP weekend!
- Megan Oltman

Tags: acephalgic Migraine, chronic illness, health insurance, medication allergies, Migraine disease, Topamax, vote
Posted in Communicating, Current Affairs, Musings, Weblogs | Comments (4)