Category: Patient Education

Community, Coping, News & Research, Patient Education, Reader Stories, Society

Help Make Migraines Visible: National Migraine Awareness Month, June 1-30

Kerrie Smyres

Help Make Migraines Visible, the theme of this year’s National Migraine Awareness Month, sponsored by the National Headache Foundation is full of opportunities for you to learn more about migraine* and a chance for you to help others understand what migraine is and what its like to live with this oft-dismissed disorder. This isn’t a sit-back-and-watch awareness event, but one that engages those most knowledgeable about life with migraine — patients! — to help spread the word. You don’t have to commit to anything major, just speak up through social media or your blog, if you have one. Patient advocates have already done a lot of the leg work to get you started!

  • Call to Action! 50 Tweets for Migraine Awareness: This is soooo easy — all you have to do is copy and paste! Patient advocate Ellen Schnakenberg has created 50 different tweets of migraine facts, complete with hashtags, for you to copy and share on your preferred form(s) of social media.
  • National Migraine Awareness Month Blog Challenge: 30 blog prompts for the 30 days of June, created for you by the folks at Fighting Headache Disorders, Teri Robert and the aforementioned Ellen. If you don’t have a blog, share your thoughts through Facebook. At the very least, check Fighting Headache Disorders each day for the blog prompts and which bloggers have written posts for that day. Share the most inspirational or helpful posts on your social media accounts to let friends and family learn a bit about migraine. Visit Migraine.com, where one of the site’s patient advocates, including moi, will be responding to a prompt each day.

I’ll be responding to prompts when I can, tweeting migraine awareness facts, and asking you all questions on Facebook. Follow TDHblog on Twitter and like The Daily Headache on Facebook so you don’t miss a bit!

*NHF will host four online chat sessions with experts and a free educational event in Chicago, and will be re-introducing its Migraine Masterpieces art contest.

 

Coping, Meds & Supplements, Patient Education

This Blog Does Not Contain Medical Advice (But What Should it Contain?)

Kerrie Smyres

I am dismayed by the number of people who told me they read my post on magnesium and immediately started taking 700 mg of the supplement. They didn’t look into recommended dosages or side effects, they just started taking as much as I said helped me. In the almost seven years since I began The Daily Headache, this is the first time I’ve felt like what I’ve written has been misconstrued as medical advice. Fortunately, magnesium is fairly safe and the effect of taking too much — diarrhea — is pretty obvious. But the situation did get me thinking about this blog and its purpose.

I blamed myself because I didn’t include details about magnesium and its potential dangers in the post. I resolved to not post (much) until I had written a thoroughly researched piece on magnesium. Hence the dearth of posts for the last couple weeks. As much as I want to, I simply don’t have the energy to research and write the post. Because I have chronic migraine, I spend a lot of time feeling too brain dead to write. When I feel good, sitting at a computer is the last place I want to be. I love writing and research and, yet, I spend so much time on my butt that I want to be cooking or cleaning or talking with friends when I feel OK, not isolated at the computer.

Since I began blogging again in November, my posts have been more my personal experience and less about what’s in the news or researched headache or migraine information. Being on the computer is no longer a trigger — I have special glasses that help with that — but what I’m interested in writing about is different than it was seven years ago. People tell me that my own stories are actually the most useful to them, but I struggle with feeling like all I care about is myself. Now that one of my personal posts has lead to people taking medication without further research, I’m conflicted.

So now I’m wondering: How do I balance sharing personal experience without being self-centered? Should I restrict the topics that I write about if I’m not up to doing research about them? What should this blog be? Do I write about what I’m thinking about or what I think readers want to read? What do you think?

Patient Education, Resources

Online Tool to Assess What Kind of Headaches You Have

Kerrie Smyres

Migraine, tension-type, sinus, cluster. . . . You know what your headache feels like and the other symptoms you have. Seems like finding a diagnosis would be easy, but it can be quite complicated. Consider these factors:

Headache Central, an educational site sponsored by the Michigan Headache Treatment Network, has a tool to help classify your headaches in medical terms. The online program asks questions about your headaches, determining which questions to ask based on your previous responses. After you’ve answered all the questions, you’re given a page with your responses and possible diagnoses summarized in a doctor-friendly format to print and take to your next appointment.

The program is not intended for you to diagnose yourself but to provide your doctor with a more complete view of what you’re experiencing. Of course, many readers will use the information to guide further online research. Arriving at your doctor’s office well-informed is helpful; so is being open to what they have to say. Think of the headache classification tool a starting point from which your doc can ask you relevant questions (and vice versa) to flesh out your diagnosis and find the appropriate treatment for you.

FYI: The program doesn’t work in Firefox.

Community, Doctors, Meds & Supplements, News & Research, Patient Education, Resources, Treatment

Headache NewsBlog By Headache Specialist Alexander Mauskop

Kerrie Smyres

Alexander Mauskop, director of the New York Headache Center, regularly posts his thoughts on current headache news on the aptly named Headache NewsBlog. He dispels myths and examines closely media coverage of headache news. Here’s a taste of Mauskop’s blog, but look over Headache NewsBlog to get the full flavor.

Current News

Medications

Botox

Doctors, News & Research, Patient Education, Resources, Society, Treatment

Is Your Doctor in Touch With Current Research?

Kerrie Smyres

Being an informed patient sometimes means feeling like you know more than your doctor does. Sometimes this isn’t just a feeling, but a fact.

In Why Doesn’t My Doctor Know This?, Dr. Kent Holtorf explains that “. . . [T]he overwhelming majority (all but a few percent) of physicians (endocrinologists, internists, family practitioners, rheumatologists, etc.) do not read medical journals. When asked, most doctors will claim that they routinely read medical journals, but this has been shown not to be the case.”

I don’t want to believe this statement, but with schedules crammed tight and overwhelming paperwork, it’s no surprise that some docs can’t keep up on all the research in their fields.

So the patient must step in. If you read about new study findings, look into more yourself. Many of the news articles will parrot each other, but dig around for the study abstract for more details. If the study is only of people with migraine with aura, and you don’t have auras, there’s no indication that you will benefit from the treatment in the article.

Don’t just bring in an article and ask, “What can you tell me about this?” Take concrete questions to your doctor. Does this treatment apply to you? Have other studies supported its findings? If your doc can’t answer your questions right away, ask that he or she get back to you.

If your doctor doesn’t act on the information, don’t assume that he or she is lazy or unwilling to work with you. One study does not prove a treatment is effective, future studies frequently contradict previously published research, or the approach may not be right for you.

However, if you feel like you are frequently stonewalled, being disrespected or not adequately treated, there’s always the option of shopping for another doctor.

[via We Are Advocates]