Sunday, May 11, 2008


I'm not one to normally post much migraine-related news, but I couldn't pass this one up.

Dr Alexander Mauskop
over at Headache NewsBlog recently cited a study done by Dr Richard Lipton and his colleagues, showing that doctors often don't hear out their migraine patients. This may come as no surprise to many of us that there is this breakdown in communication between doctors and patients.

The problem seems to be (from my reading of his short blurb) that many doctors ask close-ended questions of the "yes or no" variety. More useful would be "open-ended" questions that would require a longer response from the patient, a chance to explain.

Unfortunately, the problem doesn't end there. The information the doctors did obtain from the patients was often incorrect, and tended to make the patient's disability to be less than it actually was. Meaning preventive medication was often not discussed or prescribed when it may have been appropriate.

So what is a migraine patient to do? Many of us know the frustration of having a doctor not listen to us. In fact, that is much of the reason I fired neuro #3.

First, I'll link you to a couple of great articles over at My Migraine Connection, courtesy of Teri Robert:
  1. Migraineur's Guide to a Successful Doctor's Appointment
  2. Coping With Busy Doctors
  3. Is Your Doctor Right For You?
Next, I'll share a few techniques I've used, that I'm still in the process of developing. Many of these ideas are modified from suggestions I've gotten from my buddies over at the MMC forums, so I certainly can't take credit for their ideas. But I would like to share them with all of you in the interest of better health care for all of us.

What I bring with me to my appointment:
  1. Bulleted list of my relevant health history, including approximate dates of diagnosis.
  2. List of my typical migraine symptoms.
  3. List of my migraine triggers: suspected, confirmed and stackable.
  4. List of medications I've tried: including dates, dosage, results and side effects.
  5. List of therapies I've tried: including dates and results.
  6. List of lifestyle changes I've made: including dates and results.
  7. List of all current medications and supplements I'm taking: both prescription and OTC, including dosages.
  8. For my current preventives, a list of the side effects.
  9. List of concerns and questions, typed, with space left between the questions so I can write my doctor's answers.
  10. Headache diary. I keep a daily diary and summarize it onto a monthly sheet. I bring both to my appointment and give a copy of the monthly sheet to my doctor. On the summary sheet, I note days I had a migraine, when it started, migraine symptoms, pain and disability levels on a 0-10 scale, any change in medication, abortives I've taken and medication side effects. I also track my menstrual cycle on here, even though I don't seem to have menstrual migraines. I've developed some shorthand abbreviations for this information, so I note that on the bottom of each sheet.
I take two copies of all this paperwork with me to the appointment, one for myself and one for my doctor. I write my full name, birth date and the date updated on each page. Taking two copies of the question sheet is especially important; that way, I don't chicken out from asking any of my questions and the doctor can follow along with me. Then all of these pages get added to my medical record in the office, and I have a copy for my own records at home.

Another suggestion that's been made is to take a tape recorder and record the appointment. Inevitably, no matter how well-prepared you are or how well you listen and take notes, you're bound to miss something. By recording the appointment, you can go back later and listen through the appointment. I plan to try this at my appointment with my new specialist coming up soon.

Communication is a big challenge in any relationship. In a doctor-patient relationship, it is one of the biggest challenges and most important skills. Because our migraines can't really be "seen" or "measured" for the most part, it is up to us, the patients, to communicate as best as we can. Going into an appointment well-prepared is a great first step.

Obviously communication is a two-way street. Sometimes a patient just can't overcome a doctor's inability or unwillingness to listen, and that's when it is time to move on.

Do you have any other suggestions? Please comment - I would love to hear them and share them with the rest of the migraine community.

EDIT: Dr Lipton's original study can be found on PubMed. I haven't had a chance to take a look at it yet, but I'll post the links here for you folks. In Office Discussions of Migraine: Results from the American Migraine Communication Study. Thanks to Dr Mauskop for providing me with the link.



nutmegan said...

Wow, MJ - I'm impressed by your list and your preparation. I don't have anything to add - I'm just going to take your preparation list with me to my new migraine specialist!

Migraine Chick said...

Super Wow! This is an awesome post. I've been looking for this type of information for ages. Thank you so much for all your work and this post!

MaxJerz said...

Megs and Migraine Chick, I'm glad you found this post useful! Sometimes I feel a little silly bringing so much information in with me, but I figure if the doctor doesn't want to look at it, then it's a big clue that I probably want to find a new doctor anyway!


Eileen said...

I love this post!!!! I do the list of questions myself. I also bring my diary with me.

My doctor was impressed with the diary and found in very helpful.

For all of you migraineurs not yet using a diary - use it! It's a very helpful tool in your treatment!!!

Great article babe!!!
Much love!!

themigrainegirl said...

That link *should* work--you can listen to the episode (dated August '07) of the National Spotlight on Migraine podcast wherein Dr. Lipton is interviewed about this study. Really interesting!

Diana Lee said...

Awesome advice, MJ. This is exactly what we all need to be doing.


daisy2 said...

Thanks for for sharing your experince in dealing with the Dr Max Jerz. This is exactly the kind of thing we were looking for for our next DR appointment.