Free my Brain from Migraine Pain

Being Prepared to See the Doctor

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

Happy Independence Day!

I'll be at the beach tomorrow with my shades and big hat, so I wish you a Happy Independence Day in advance.  I wish you independence from pain, from fear and from worry!

Here's a 4th of July garden for you, with red & white impatiens and blue& white hydrangea, and some cool shade and warm sun.

Enjoy!
- Megan

Highlights from the American Headache Society Annual Conference

Last week the American Headache Society held its 50th annual conference in Boston.  You may have read other news of the proceedings and the many new discoveries, inventions, understandings, and treatment options that were presented at the conference.  Lead expert Teri Robert of My Migraine Connection and Migraine blogger Eileen of My Life with Migraine attended the conference and will be posting a lot of information in the weeks to come.  If I may relay some tidbits second-hand, I was inspired to hear of their experiences in a collegial atmosphere where a number of dedicated medical professionals and advocates are working and sharing ideas to help bring us relief from this life-stealing disease.   I wish I could have gone along, but first things first.  I need to get my own migraines under better control before attending conferences, which have always tended to trigger me.  Though I suppose there might be no better place to be with a migraine!

The conference will provide material for many posts, both here and all around the Migraine blogosphere.  I'm going to share a couple of highlights that I am particularly interested in, and we'll touch on more of the new information as I have a chance to digest it.

One new device which looks promising is the transcranial magnetic stimulation, or TMS, device.  Tested for use by those suffering from Migraine with Aura, the TMS device is held at the base of the skull at the first sign of aura (visual and sensory disturbances experienced by about 20% of migraineurs).  You push a button to deliver two short magnetic field pulses to the brain.  Apparently these pulses scramble and abort the abnormal electrical activity which takes place in the brain during a Migraine attack.  The basic black and white model looks good for this raven-haired lady; maybe they'll come out with some more colors soon!  But seriously, this is a great alternative, since everyone can't use triptans, and even if you can, triptans knock you out of action for a while. 

New research was presented about Why Pain Becomes Chronic.  New understandings of how pain becomes chronic can help headache specialists develop new therapies which can help sufferers with Chronic Daily Headache.  One of the new understandings involves the role of glial cells in the brain, which agitate neurons, increasing pain signals to the brain.  Use of opiates appears to activate glial cells, so can contribute to the development of chronic pain.  Research was also presented indicating that expectation of pain affects its severity, that in the case of chronic pain, the nervous system "over-reacts" but that this overreaction is physiological, not psychological.  A very important distinction - biological changes have been observed in the nerves themselves.  In other words, the pain is "all in our heads," in physiologic structures in the brain, not "all in our heads" in any psychosomatic sense.  I must say I feel vindicated - read my post It's All in your Head on the difference between what's in our heads physiologically and the old psychosomatic accusation we are so often subjected to.   

Yet another piece I am particularly interested in deals with Migraine in women and the role of hormones and the menstrual cycle.  More on that when I know more!

Overall, the good news is, there are good people out there looking out for us, working hard to find ways to treat this disease.

- Megan Oltman

                         Neurons image courtesy of Rebecca Radcliff.

Coping with Migraine: Claims of a "Cure"

I was recently presented with a dilemma here on Free my Brain. I want to encourage dialog and exchange of ideas, but I don't intend to provide an open marketplace for sale of migraine "cures."  (Though I will gladly support and even promote helpful products and services.)  Migraine is a complex, genetically based, neurological disease.  The frequency and severity of migraines vary enormously from person to person; so do the number and complexity of triggers and other contributing factors.  What we know now is that this is a neurological disorder, a differently ordered nervous system, if you will, which has existed throughout human history.  Like many congenital conditions, there may have been a valid evolutionary reason for this mutation at one point.  Maybe migraineurs were the human barometers, predicting disastrous weather changes for primitive societies.  I had fun speculating on the evolutionary basis of migraine in the post Our Ancestress: A Fable.

I have heard from many people who have done just one thing and their migraines have gone away.  To them I can only say mazel tov!   (Congratulations!)  Here is a bouquet of flowers to celebrate!   For some it is eliminating just one trigger.  For others it is a particular nutritional supplement, a practice of meditation, regular exercise, a medication, a surgery, pregnancy, menopause, a life or lifestyle change.   I don't know if there are statistics on how many migraineurs find relief from just one thing.  I do know there are large numbers of us out here who need to find a combination of factors to manage and control our migraines.  Here is a bouquet of flowers to console us!  There is no "cure" for a genetically based neurological condition, any more than there is a "cure" for my red hair and green eyes.   (Well, another 15 - 20 years may pretty well eliminate the red hair.)

A great place for some very basic facts and information about Migraine is the recent quiz at My Migraine Connection: Dispelling Migraine Myths.   The two books on migraine featured in the left side-bar on this page are both great resources for learning about migraine and how to manage it.  There is much we can do.  For most of us, we can reduce our migraines significantly.  You have probably heard me say before that I have reduced my own migraine frequency by about 50% through use of abortive medications, supplements, trigger avoidance, relaxation and meditation, and lifestyle changes.

Someone submitted a comment to one of my posts stating that 1) Migraine isn't a disease; 2) there is a cure for Migraine "within us;" 3) he had over 20 years of migraines which are now gone; and 4) you can "retrain" yourself so you have no more migraines; he then went on to promote his methods.  I am genuinely happy for the commenter that his migraines are gone.  I am certainly curious about his methods, and glad that he wants to help others.  I don't mean to suggest he had any but the best motives.  But I am wary of anyone's claim to have a cure.  After some deliberation, I decided not to publish the comment and link.  

There are two ways to look at "retraining."  A nervous system which can be easily triggered into a Migraine attack can be viewed as an over-excitable or hyper-reactive nervous system.  Regular practice of meditation and relaxation can help us reduce the excitability of our nervous systems.  Note that this is not a "cure;" it is a supportive exercise or practice which can strengthen our system's ability to resist triggers.  You could call this "retraining."

But there is another view of retraining which comes from an idea that Migraine disease is psychologically generated.  It is not.  It is a real, physical condition.  It is no more psychological than epilepsy or scoliosis.  I view with rage books like Louise Hay's "You Can Heal Your Life" which suggest that right thinking can solve all our medical problems.  She suggests that "Migraine headaches are created by people who want to be perfect and who create a lot of pressure on themselves. A lot of suppressed anger is involved..."  

And so, if we work like crazy in therapy, meditate, recite mantras and do whatever highly subjective steps Hay seems to think will enable us to let go of the anger and pressure, if we do all that and we still have Migraines, then what?  We failed?  It's like telling someone the devil is causing their Migraines and they just have to really believe in God.  "I do believe!"  "If you really believed the devil would leave you and your Migraines would be gone!"  "But I really do believe..."  It's just a very sneaky way of blaming the victim!

I wish we could do a scientific study of people who want to be perfect and who put pressure on themselves.  In the first place I bet you that's at least 75% of the population.  And I bet you dollars to donuts that 12% of all the perfectionists would turn out to have Migraine disease.  And I bet that 12% of all the non-perfectionists would have Migraine disease too.  What's the incidence of Migraine disease in the general population?  12%!  I think you get my point.

I have been told that if I only distinguished the beliefs from my past that were making me have Migraines, they would disappear.  I will admit I tried to do that.  Like anyone else, I have a past and beliefs were formed in it!  Some of those beliefs are limiting to me.  In a life of nearly half a century, with plenty of self-help, support groups, personal development courses, and therapy, I think I've managed to identify most of those beliefs.  So why am I not cured of Migraines?  Is it my fault?  Or, wait, could it be that I have a genetically based, incurable neurological condition?  Hmmm...  Which is the more logical conclusion?  And which is more empowering? 

For me, the answer is clear.  I am 49, a woman, 5'2", a redhead, a migraineur.  These are facts.  I get choices about what I do with those facts.  I am choosing to vigorously pursue better and better Migraine management.  I am not wasting my mental or emotional energy on "cures."  Or at least I won't, once I'm done with this rant!

- Megan Oltman            

Curing is good for meats, cheeses, wines, paints... Maybe our heads don't need it?

                         Hammer image courtesy of Darren Hester

Managing my Migraines: Recent Success

All my hidden superstition comes out and I hesitate to say this for fear of jinxing myself, but I have only had one very mild Migraine in the past 19 days.  It is too soon to tell if this is a trend or a fluke.   It's quite a contrast to the last 6 months though, when I've had an average of 5 Migraines per month and my Migraines have generally lasted 36 hours.  I promise not to be embarrassed if this trend doesn't continue.  I believe I am doing a lot of right stuff - just sometimes we need even more right stuff to add to our toolkits.  

I have yet to try preventive medications; I missed my long-awaited headache specialist appointment when I was sick with bronchitis.  But I will give you my current regimen, and list the things that I think are making a difference.  Please note that this is my list; the same factors might not work for you.

1. 400 mg of Magnesium (see studies done by USDA linking magnesium deficiency and migraine)
   
2. 200 mg of B2 (riboflavin)
3. a high potency multi-vitamin
4. 60 mg Armour Thyroid*
5. an iodine supplement*
6. 3000 mg phosphorylated serine per day, 1000 mg each at lunch, dinner and bedtime*
7. 10 mg DHEA*
8. the Wiley Protocol - bio-mimetic hormone replacement therapy
9. not drinking caffeinated beverages more than 2 -3 times per week - and the ones I drink are mild!
10. 30 - 45 minutes aerobic exercise daily
11. sleeping 8 hours per night
12. daily meditation
13. basing my work schedule on the idea that I have about 30 productive hours in me per week, and not trying to do more than that!
14. taking frequent breaks throughout the day and gardening or doing housework
15. napping if I need to
16. switching overhead lights in the house back from CFLs to incandescents
17. banning my son's stinky cologne from the house
18. Summer - long days, warmth

I have Migraine disease, early stage chronic fatigue syndrome (CFS), low thyroid and, I believe, seasonal affective disorder.  I also have allergies, and frequent, sometimes chronic, sinus infections, and am very prone to catching whatever illnesses are around to catch.  The factors that I marked with an asterix (*) above are not there to prevent Migraine; they are there to balance my hormones, strengthen my adrenal glands, and manage my CFS.  All the research shows that CFS and low thyroid are co-morbid conditions with Migraine - they occur at the same time, without a causal relationship.  I can only speak to my own experience, but when I am fatigued, and I push myself beyond my limits, I often get a Migraine.   Low thyroid also contributes to my fatigue, which contributes to my Migraine frequency.  Unless someone can prove to me otherwise, I will maintain that taking care of my thyroid and CFS also takes care of my Migraines.

I began the Wiley Protocol about a year ago to address menopausal symptoms.  The Wiley Protocol replaces a woman's hormones with the identical hormones her body makes (rather than the synthetic hormones found in traditional HRT), and doses them in the way that mimics her natural cycle when she is young.  It is not specifically designed to combat Migraine, but for those of us whose Migraines increased in peri-menopause, it makes sense that returning to a younger hormonal state would help!  I found initially that while my Migraine frequency didn't improve, the severity went way down.  My doctor started me on an adjusted dose of the hormones about 3 weeks ago, with estrogen levels raised slightly in the beginning of my cycle and lowered slightly later on.  Since that's the same time period where I've been having so few Migraines, I can only guess it's helping.

I am usually healthier in the warm weather months, and sluggish and illness-prone over the Winter.  I feel like I come alive again in the Spring.  Short of moving far south, I think I will have to get a light-box for next Winter to address this.  

The CFLs are funny for me.  They are on a list of things that I "just don't like" - and haven't liked most of my life (baking in the hot sun, strong men's colognes, crowded rooms full of noisy people, fluorescent lights).  Lo and behold, these things that I never liked are actually triggers for me.  When I began blogging about CFLs a month or two ago it occurred to me to get them out of my own house and see what happened.  My husband had started replacing incandescents with CFLs in our overhead lights about six months ago.  My Migraine frequency went way up when?  About six months ago!  Coincidence?  We've been taking them out again and... fewer Migraines?

A conclusion here?  As you all know who deal with this disease, there are many factors involved.  If you are one of those people who only has to avoid one trigger, or take one herb, or use one particular drug, to eliminate Migraines, then God bless you!  You have my undying jealousy!  If you are one of those complicated cases who have to manage multiple triggers and multiple treatments, I know how tired you are of managing it all.  I just want to hold out some hope - that the detective work is worth doing, and can make a difference.  Keep on trying!

- Megan Oltman
Managing Migraines one day at a time.

                         Crossed fingers image courtesy of Meisje van de Sliterij.