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After a wonderful year of managing social media for the National Headache Foundation, March was sadly my last month, as the NHF has decided to take their social media efforts in–house. Contributing to the NHF’s blog and online portals for the past year has been an extremely important outlet for me. It has provided me with the opportunity to connect with hundreds of others who understand what it’s like to live with chronic pain on a daily basis and how it impacts our lives and the lives of our loved ones. Please continue to follow my posts on my personal blog: http://migraineland.tumblr.com/

Have you signed the petition?

Sign the petition to Urge Congressional hearings on the impact of migraine and headache disorders

Sometimes you just need to cry and be sad. You need to break down and be torn apart. You need to learn how to pick yourself up and put yourself back together. Sometimes, the only way to be happy is to give into sadness first.

Understanding the Stress Response - Harvard Health Publications

Understanding the Stress Response - Harvard Health Publications

Source: mint.com via Kristin on Pinterest

Help Sustain Progress in Headache and Migraine Research

The Alliance for Headache Disorders Advocacy is seeking a congressional hearing, the very first of its kind, to air publically the facts about headache disorders, including their resultant disability, stigma, suffering, inadequate therapies, and federal neglect. They are asking you to sign a national on-line petition at this time.

They will present the signed petition to members of Congress to urge them to hold such a hearing. Please sign the petition and ask everyone and anyone you know that cares about someone suffering with a disabling headache disorder to sign as well. Only with your help can we expect to have a congressional hearing scheduled and have the current state of inadequate research publically recognized and addressed.

Click here to sign the petition now.

The Health Activist Awards from WEGO Health

Click here

I’m excited to share a fun new program with you today.  In December, the online health community and WEGO Health will be celebrating all the awesome achievements made in health leadership and patient advocacy in 2011! WEGO Health,a different kind of social media company dedicated to empowering Health Activists, has just launched the first-ever Health Activist Awards program, to recognize Health Activists (both new and established) for all of their great work over the course of the year. 

This interactive program lets everyone get involved by nominating their favorite Health Activists and sharing what has inspired them, moved them, and made a difference in the online health community.  I’m looking forward to nominating some of my favorite Health Activists and I hope you’ll take some time to recognize your favorites too. 

You can check out WEGO Health’s Health Activist Awards 2011 homepage for details on the 10 different awards, how to join the Health Activists Awards Jury to help select the Award winners, and to find out what Health Activists will win if they’re chosen. 

Nominations begin December 1, 2011 and winners will be selected in early 2012 - so get your nominations in now and celebrate the Health Activists that have made the biggest difference to you in 2011.

Source: Mount Sinai Medical Center

NYC Headache & Migraine Awareness Conference 2011

I went to another NHF Regional Conference in New York City a few weeks ago. My sister lives in New York and besides having me, a walking headache as a sister, she didn’t have a lot of experience with chronic pain.Until now. She is in her early 30’s now and has just started getting auras, vertigo and head pain. My mom and I happened to visit her the weekend of the conference and thought it would be a good experience for all of us to attend. 

 

There were about five doctors who presented and they were all extremely well educated on the subject of headache disorders and migraine. I learned everything from the link between neck pain and headache to Cupping and Gua Sha. One of the doctors even shared with us an interesting story about a man named Phineas Gage who had an accident involving a metal rod and a blow to his skull. He lived.

To my surprise, I noticed there was very low attendance at the conference. It was nice because we were all able to ask questions and get them thoughtfully answered by the doctors. However, I still wondered why more people didn’t attend. I’m pretty active in the online headache and migraine community so I know how many of us are suffering out there. There should have been hundreds of people there.  We all want more research, better medication, a cure. But who is going to make that happen if it’s not us? These conferences are extremely valuable opportunities to learn more about this invisible illness that lacks understanding by so many. After all, education plays a huge factor in managing headache and migraine. 

If you live in a city that is hosting an event on headache or migraine, I strongly urge you to go. Even if I had not learned a thing, I would still have attended because for the first time in my life I was in a room full of people who believed me. Who understood and who knew what I go through every day, because they have to go through it too. I can’t tell you how freeing it was when I took my pills after we ate, and I didn’t hear the usual “maybe if you didn’t take so many pills your headaches would go away…”.

 If nothing else, wouldn’t you just want to go to talk to other people who “get it”?

October 2011- Headache and Migraine Blog Carnival

October Theme: Scary Migraine Episodes: What is the scariest migraine attack you've ever suffered or witnessed?
Sconesail will host the October carnival at Falling Through Pain. Submissions are due by the end of the day on Friday, October 7, 2011, and will be posted on Monday, October 10, 2011. Please email your submissions to Diana Lee at somebodyhealme AT dianalee DOT net and she will forward them to our host Sconesail. For more information about the carnival visit the overview page here: Migraine Blog Carnival.

How Much Does Migraine Cost?

As I am sitting here, in my 18th year of fighting Migraine and headache disorders, I wonder. How much have my parents and I have spent over the years on trying to figure them out? How much has having Migraine disease cost me financially?

According to the International Burden of Migraine Study, the mean headache-related direct cost over a 3-month period for individuals in the United States with Chronic Migraine was $1,036 a person compared to $383 a person for those with Episodic Migraine. Most of the direct costs were for outpatient services - ER and office visits, laboratory and diagnostic tests, headache-specific medications, etc. But what about the indirect costs? The tips I didn't receive when I couldn't go to work or the events that I had to give up tickets to at the last minute. It would be very hard to add up a lifetime of indirect costs due to headache and migraine.

Due to the lack of understanding of migraine disease, I went years without adequate care. This led to expensive repeat consultations, unnecessary referrals into secondary care and inappropriate treatment. For instance, I just paid $250 for a mouth guard to wear at night because my teeth grinding may or may not be contributing to my head pain.

Since my head pain started when I was a child, I thank my parents for years of searching for a potential Migraine cause. Could it be my eyes? They sent me to an eye doctor. Was it my thyroid? I went to an Endocrinologist. Maybe it's my jaw? I saw a dentist. And the list goes on and on for 18 years and is still continuing.

I thought it would be interesting to track an average month and see how much I spend on having and preventing migraine. I broke down my Migraine treatment plan and between my alternative therapies and my headache related medication,  I pay $465 a month.

Yikes.

Comparing the $1,395 I spend every 3 months to the IBMS mean amount of $1,036 spent on Chronic Migraine, at least for me and my direct costs, the study seems pretty accurate. I think the most frustrating part about spending so much on Migraine is that I am still living in pain every day. I wouldn’t mind paying so much if I actually found relief and my quality of life improved. It is still interrupting every aspect of my life and I'm still not the single care free 25 year old that I so badly want to be.

How long can I afford to keep spending money (and energy) on this? How many more times can I pay out of pocket for treatment? When will our insurance companies and the rest of society realize how debilitating this disease is in EVERY aspect of our lives? Don't they know we are already physcially and emotionally exhausted?

Maybe if we improve education in headache, we will be able to manage it better. The World Health Organization states that, "Worldwide, just four hours are committed to headache disorders in formal undergraduate medical training, and 10 hours in specialist training." I'm not comfortable with my migraine lasting longer than the training my "headache specialist" recieves.

That just reminds me how important it is to educate myself on my illness. By playing an active role on our health care team and educating ourselves on our disease, we can spread awareness to our friends and family. Because there is a serious lack of funding for migraine research, we can ask them to donate or become a member of a headache organization. Over one third of professional headache organizations arrange conferences, raise awareness of headache-related issues or are involved in setting guidelines in the management of headache disorders. If health-care providers had better knowledge of how to diagnose and treat migraine and headache disorders effectivley, it could be the first step to indirect cost-saving overall.