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Posts Tagged ‘migraine diary’

The MIDAS Touch

April 5th, 2009

I recently took a MIDAS (Migraine Disability Assessment) test, and the results were enlightening.   The MIDAS test was developed by Richard B. Lipton, MD, Professor of Neurology at the Albert Einstein College of Medicine, New York, NY, and Walter F. Stewart, MPH, PhD, Associate Professor of Epidemiology at Johns Hopkins University, Baltimore, MD.  It provides an objective measure of how much your Migraines disable you, or impair you from work and acitivities of daily life.  It is a useful test in several ways.  Many Migraine and headache specialists make use of it to determine how you are affected by Migraine disease, and to measure your progress in treatment.  The test is also useful if you need to build a body of evidence for a disability benefits application.  You can find and take the MIDAS test on line at the American Headache Society web site, Achenet.org.

In addition to being helpful in your treatment, the test may be helpful to you personally, in better understanding the impact of your Migraines.  The test has you look back over the past three months and count:

• the number of days you were unable to work,
• the number of days your work productivity was cut in half,
• the number of days you couldn’t do household activities,
• the number of days household activities were cut in half,
• and the number of days you couldn’t participate in family or social obligations,

due to Migraines.  Then it asks you for the number of days you had head pain, and the average severity of your head pain.  After you fill in all these numbers, the web site will calculate a score for you, which will indicate mild, moderate or severe disability due to Migraine disease.  Taking the test again on later occasions will provide an objective measure of how your treatment is working.

MIDAS is not brand-new, but my headache specialist does not use it so I had not taken it before.  I do, however, keep a very detailed diary, which is necessary to do this test.  If you haven’t kept track of how many Migraines you had, when, how severe they were and how they affected you, you won’t be able to complete the test.  Here at Free my Brain we will have a diary available for you soon.

What I learned for my self is that I am considered severely disabled by my Migraines.  This might surprise many of the people who know me, as I am up and functioning most days.  I have most of my Migraines in the evenings.  This means, however, that I have virtually no life when it comes to socializing and leisure time, and it also means that I must constantly choose between work and family, work and household tasks.  I have to earn a living, which is a struggle, so I don’t have as much time with family as I would like, very little time with friends, and as for household tasks, ha!  Reading my MIDAS results, you could predict the layer of dust in my house!

I suppose the test confirmed things I already knew.  It is a kind of validation, though, and it helps me focus on what I need to work on.  I need to be vigilant about my lifestyle – getting enough rest, doing my relaxation practice every day, working with my doctor to find the right preventive regimen for me. I need to maximize my health so I can do my work, be with my family, and then if I have a little energy left worry about the house! The MIDAS touch? Keeping that focus is pure gold!

– Megan

Tags: American Headache Society, disability, MIDAS, migraine diary, Migraine disability
Posted in Managing, Medicine | Comments (0)

Being Prepared to See the Doctor

July 8th, 2008

I’m a proponent of doctor/patient partnership.  When I see a new doctor, I am listening and looking to determine if this doctor is going to be a partner with me in my health care.  I can’t thank Teri Robert enough for all the guidance in her excellent book Living Well with Migraine Disease and Headaches on how to be a partner with your doctor and get the health care you need and deserve.  It’s easy to see when you are not getting it – a little example is the neurologist I saw in February, who:

1. spent less than 10 minutes with me on a first appointment;
2. glanced at my detailed migraine diary and health history for about 45 seconds and handed it back to me;
3. was visibly impatient as I ran down my list of questions;
4. told me I should contact him between appointments only “if there’s a problem,” not for questions; and
5. clearly fixed on one point – that I have had allergic reactions to some medications – and would not even consider a trial of preventive medications.

With 20-20 hindsight and lots more preparation I am off to a new Migraine specialist today.  I found out ahead of time that he spends a full hour with a new patient, and that his practice is restricted to treating migraines and headaches.  Two big points in his favor.  It’s easy, though, to fix on how we want the doctor to behave.  I want to explore what it takes for the patient to be a partner, as well.

I spent most of yesterday morning preparing for this appointment.  I have:

1. a bulleted list of my current conditions;
2. a description of my typical Migraine symptoms, severity, and frequency, before, during and after the headache phase;
3. a list of all my current medications and supplements, with dosages;
4. a detailed year-by-year health history, starting in childhood, and describing illnesses, injuries, when various chronic conditions began, etc;
5. a list of my questions with space to write down answers; and
6. a print-out of the past seven months of my Migraine and Wellness calendar (monthly) and daily diary.

Thanks again to Teri Robert for all the preparation advice on her site and on My Migraine Connection (Working with Doctors), and to MJ of Rhymes with Migraine for her excellent post “Communication” where she lists her preparation steps (mine are nearly identical with hers).

Beyond checklists, though, I think my biggest job is to be sure I have fully expressed all my concerns, to be sure I understand what the doctor tells me, and not to leave with any questions un-addressed.  Cross your fingers for me; I’ll let you know how it goes!

– Megan
Here’s to great health care for all of us!

Handshake image courtesy of Aidan Jones; checklists image courtesy of Viv Evans

Tags: health care, migraine diary, migraine specialist
Posted in Advocacy, Medicine | Comments (3)