AHS ACHE Blog

New Patient Organization and Blog Changes

We have exciting news to share today about a new patient-focused branch of the American Headache Society, the American Headache and Migraine Association (AHMA).

AHMA's Mission:

Our mission is to help those affected by Migraine and other headache disorders find and use our voices to empower patients, family members, friends, and care partners. Through education, support, advocacy, and research we will bring hope and banish the feelings of hopelessness that too often accompany these disorders. We will work to dispel myths and misconceptions, thereby working to eliminate the stigma we face all too often and replace it with compassion and understanding.

ACHE and AHMA will be working together, with ACHE providing patient education content and other support.

With the launch of the AHMA, we're combining blogs, and new AHCE information will now be posted to the AHMA blog. All ACHE activities will continue as before. We hope you'll bookmark and follow the AHMA blog.

For more information, take a look at Introducing the American Headache and Migraine Association.

Live well,
Teri Robert
Patient Educator and Advocate

ACHE Tuesday: 10 Things to Do After a Headache or Migraine Appointment

As migraine patients preparing in advance for our doctor's appointments is important. But equally important is making sure to do certain things to follow up and get organized after these appointments.

For this week's ACHE Tuesday article, patient advocate and educator Teri Robert has prepared her top 10 tips for things to do after your headache or migraine appointment.

Some of her advice includes:

It's tempting to ignore things that might rock the boat. That includes medication side effects, changing Migraine patterns, and other health issues. Giving in to that temptation can result in our not feeling as well as we might. Once a month, or more frequently, stop and take stock of how you feel.

Continuine reading: 10 Things to Do After Headache or Migraine Appointment.

Be well,

Diana Lee
Patient Advocate & Educator, Migraineur

ACHE Tuesday: Social Security Disability

For people with frequent and / or severe headaches and Migraines, the topic of disability benefits can be both of great interest and quite confusing. Diana Lee, who is a Migraineur herself as well as an attorney and patient advocate, offers us some basic information...

"If you're too debilitated by migraine to work, applying for disability benefits may have crossed your mind.

Although it can be a lengthy, complicated process, knowing what to expect can help keep you from becoming hopelessly overwhelmed.
 
Social Security Disability Generally
 
The Social Security Disability Insurance (SSDI) is a federal program operated by the Social Security Administration (SSA) that provides a safety net for qualifying Americans. Within SSDI are two separate programs: (1) Supplemental Security Income and (2) Social Security Disability..."

Continue reading Social Security Disability.

Live well,
Teri Robert
Patient Educator and Advocate

ACHE Tuesday: New Daily Persistent Headache

If you've read either of the memoirs "All in My Head" by Paula Kamen or "Chocolate & Vicodin" by Jennette Fulda, you are already familliar with a headache disorder known as New Daily Persistent Headache (NDPH) whether you know it or not. Both women live with this condition.

New Daily Persistent Headache is a chronic, primary headache disorder, which means it is not attributable to any other disease or condition. NDPH is daily and unrelenting.

One of the most noteworthy characteristics of NDPH is that many patients can recall the exact date when the unrelenting headache began.

Learn more about NDPH by reading Teri Robert's ACHE Tuesday article: New Daily Persistent Headche: The Basics.

Be well,

Diana Lee

Patient Advocate & Educator

FDA Calls for Citizen Comments About Migraine: Be Heard

The experience of living with Migraine disease is slightly different for every patient. But one thing we all know well is the frustration of not getting serious attention from the public and policy makers. Here's an opportunity to put that energy to good use by speaking out to the FDA.

The FDA is in the process of compiling a list of 20 diseases to receive intense focus as part of a five-year pilot program. The FDA will hold quarterly meetings with stakeholders (patients, doctors, caregivers, etc.) to try to understand the current state of each disease from all angles.

Migraine disease was not included in the preliminary list of possible diseases, and neither was any other headache disorder. Fortunately the FDA wants to hear from us, the citizens, before they make a final decision. They have invited the public to make comments online and at a public meeting on October 25.

Patient advocate and educator Teri Robert will be on hand to provide testimony on our behalf at the FDA's meeting next week. She may or may not be allowed to speak because of space limits. We must do our part by submitting our comments online.

These are the criteria the FDA is using to choose the final 20 diseases. Please keep these factors in mind in writing your comments to the FDA:

• Disease areas that are chronic, symptomatic, or affect functioning and activities of daily living;
• Disease areas that reflect a range of severity;
• Disease areas for which aspects of the disease are not formally captured in clinical trials;
• Disease areas that have a severe impact on identifiable subpopulations (such as children or the elderly);
• Disease areas that represent a broad range in terms of size of the affected population; or
• Disease areas for which there are currently no therapies or very few therapies, or the available therapies do not directly affect how a patient feels, functions, or survives.

Other tips for writing your comments:

• Prepare your comments in advance before you go to the FDA submission page. This will allow you to spell check, proofread and perfect your arguments and wording.
• Balance your personal story with the big picture of the impact and burden of Migraine disease.
• Try not to be overly emotional. Stick to the facts.
• Utilize this up-to-date list of facts about Migraine and other headache disorders: Stats and Facts About Migraine.
• Don't forget to consider the FDA's decision criteria (listed above).
• Be as concise as possible.

When you're done writing and proofreading, copy and paste your thoughts into the comment window on the FDA website. Go to this link and click the blue "Comment Now" button: Prescription Drug User Fee Act Patient-Focused Drug Development Meeting.

Getting Migraine disease included in this important project would be a big achievement. It will help us capture the attention of policy makers with the ability to increase both awareness and funding for Migraine disease and other headache disorders.

Take this opportunity to exert some control over Migraine's role in your life and make your comments known. Please encourage your loved ones, whose lives are also greatly impacted by Migraine disease, to share their thoughts, too.

Prescription Drug User Fee Act Patient-Focused Drug Development Meeting

Make your voice heard!

Diana Lee
Patient Advocate & Chronic Migraineur

ACHE Tuesday: Chronic Migraine – The Basics

Good morning!

One pervasive myth about Migraine is that you can't possibly have Migraines or headache every day, or more days than not.

The truth is that Migraine and headache can occur so frequently in some patients that they spend more days of every month with head pain or other Migraine symptoms than the number of days they enjoy feeling like their normal selves. When this happens, the patient may have chronic Migraine. 

In this week's Ache Tuesday feature, Teri explains some of the basics of chronic Migraine because:

"...we're seeing that chronic forms of Migraine often respond differently to treatment than episodic Migraine, patient needs are different, and that there are many reasons to standardize criteria for classifying Migraine as chronic."

You can read more in this week's ACHE Tuesday article, Chronic Migraine - The Basics

Wishing you wellness,
Ellen Schnakenberg
Patient Educator and Advocate

 

 

ACHE Tuesday: Abdominal Migraines

Good morning!

As we've been showing in some of our ACHE Tuesday pieces, there are several different forms of Migraine.

Abdominal Migraine is often misunderstood and confused with silent or acephalgic Migraine, so today, we're taking a look at abdominal Migraine.

"Abdominal Migraine is a form of Migraine seen mainly in children. It's most common in children age five- to nine-years-old, but can occur in adults as well..."

You can read more in today's article, Abdominal Migraine — The Basics.

Live well,
Teri Robert
Patient Educator and Advocate

Hope for the Future: Wall Street Journal Highlights Migraine Research Target

It’s very easy for patients to become discouraged when we ask our doctors about new Migraine medications coming down the pipeline.  It can be just as discouraging for our headache specialists who want to help us but lack the tools to do so.  The problem is that there really aren’t any new, unique medicines or compounds to talk about.  Not yet…

However, there is a newer, unique target researchers have been looking at for some time which might someday offer patients something entirely new, if we can only figure out how to design a medicine around it that is safe. 

The Wall Street Journal recently featured an article on this unique target, and I wanted to take a moment and share it with you here.  The name of the target is Calcitonin Gene-Related Peptide or CGRP for short.

CGRP is a chemical whose only job is directly related to pain.  The hope has been that if we can learn to control it, we can control the pain associated with Migraine attacks. 

This is important because, today the only class of medication developed specifically for use in Migraine are triptans.  Although they were designed for Migraine, they also affect other parts of the body which can result in serious side effects for some patients.  It’s unfortunate that approximately half of patients do not respond to triptans or cannot take them because of side effects or contraindications.

The author, Shirley Wang, was very thorough in speaking to some of the top headache specialists and researchers in the country, and as a result does a nice job of explaining and illustrating to Migraineurs and non Migraineurs alike what researchers are looking at in easy to understand language. 

 

As you can see, these are not Migraine cures as the headline overstates, but potential treatments and preventives.  They may be important to us nonetheless.

Many Migraineurs may remember the failed drug Telcagepant that ended with disappointing trial results.  We must remember however, that researchers gain valuable knowledge through failure as well as through success.  With any luck, we have not yet seen the last of the compounds targeting CGRP.

The takeaway here is that, with researcher’s increased knowledge of the function and importance of CGRP, Migraineurs who are difficult to treat can still have hope that we are not at the end of the treatment rope. 

Wishing you well,
Ellen Schnakenberg
Patient Educator and Advocate

 

Resources:

Wang, Shirley S. "Fresh Target in Hunt for a Migraine Cure." The Wall Street Journal. August 7, 2012.

© Ellen Schnakenberg, 2012.
Last updated Auguest 20, 2012.

Migraine to be Focus of Thursday's Diane Rehm Show

NPR's nationally-syndicated news program The Diane Rehm Show will devote an hour to a discussion of Migraine this Thursday, August 16, at 11:06 am, eastern time. You'll be able to listen on the radio through your local NPR affiliate or online.

Not only will the show feature some of the most knowledgeable experts on Migraine, patients and their loved ones are encouraged to submit their questions about Migraine to The Diane Rehm Show. The program will take questions via:

• Phone: 1-800-433-8850
• Email: drshow@wamu.org
• Twitter: https://twitter.com/drshow

Thursday's show is titled Living with Migraine and the Search for New Treatments and features the following Migraine experts:

• Dr. Perry Richardson, neurologist at George Washington University Hospital
• Teri Robert, author of "Living Well With Migraine Disease and Headache" and American Headache Society Committee for Headache Education (ACHE) member
• Dr. David Dodick, Migraine specialist and director of the headache center at the Mayo Clinic in Scottsdale, Arizona, and chair of the American Migraine Foundation
• Dr. Story Landis, director, National Institute of Neurological Disorders and Stroke, National Institutes of Health

Check these links for everything you need to know about how and when to listen to Thursday's show:

• The Diane Rehm Show
• The Diane Rehm Show: Living with Migraine and the Search for New Treatments
• Find a station in your area that broadcasts The Diane Rehm Show
• Listen live online
• Time zone converter

Once the archived program is available online we'll let you know where to find it.

Questions about Thursday's show? Please share them in the comments.

Diana Lee
Patient Educator and Advocate

ACHE Tuesday: Photophobia - What Is It? Treatment?

Good morning! One of the most common, frustrating, and bothersome Migraine symptoms is photophobia.

Today, for ACHE Tuesday, Dr. Kathleen Digre has provided us with a wonderful article about photophobia, complete with a FAQ. Dr. Digre begins...

"Phobophobia can be a common symptom for patients with Migraine. For such a symptoms, phogophobia lacked careful research and has been misunderstood until recently.

What is photophobia? Sometimes individuals think the light is 'too birght' -- meaning there is an increase in the sense of light. Others will complain of pain associated with the light (the light hurts). Everyon has some level of light sensitivity -- think of going from a dark movie theatre to a birght sunshine day; and some people find that even normal light dauses pain or discomfort..."

You can learn more about photophobia, how it's treated, the FL-41 lens, and more in Dr. Digre's article Photophobia - What Is It? Can It Be Treated?

Live well,
Teri Robert
Patient Educator and Advocate