There’s no doubt that migraine is a misunderstood disease.  That means migraineurs, migraine sufferers, are themselves misunderstood – in their relationships, workplaces, and social activities.  But a new website aims to give migraineurs a chance to speak.

Blogger Kelly from Fly with Hope has just launched Project Migraine Hope.  Project Migraine Hope gives people who are dealing with migraine a chance to speak out and let the world know how serious migraine really is.

It’s also an opportunity for family and friends of migraineurs to share.

Kelly writes:

So many of us have been in a place with our Migraines where we have felt depressed, devastated and lost: when nothing is helping and you are lying alone in a dark room with excruciating symptoms; after another medication trial failed; when insurance did not cover a treatment; when the doctor said "I don’t know what else to do" and/or "It is all in your head"…

We need to share with each other how we hold onto hope and to talk about what keeps us going amidst the struggle during dark times.

There IS hope for the area of more funding for Migraine research. And there IS hope for each individual Migraineur.

Though the focus of the site is to give migraineurs a face and a voice through video, written submissions will also be accepted.

Let’s hear Kelly explain Project Migraine Hope in her own words:

To get you started with ideas, here’s the first part of Kelly’s own story:

Find out how to participate in Project Migraine Hope here.

From the Headache and Migraine News Blog

Project Migraine Hope gives Migraineurs a Face and a Voice

These other posts might relate:

• Mutiny on the Bounty and Migraine (video)
• Migraine Live – CBS 2 Reporter Serene Branson
• Persistent Migraine Aura and Visual Snow?

We’ve talked before about the importance of having a hobby.  Of course this is not just important for migraine or cluster patients, but for anyone with chronic illness – well, for anyone at all.

But the fact is, it can be harder for someone with headache or migraine to do.  Maybe because of the symptoms.  Maybe because of the fear of when symptoms will strike.  But perhaps one of the biggest reasons is because someone with a condition like migraine thinks they’re already not "contributing" enough.  They’re not able to do "enough" when it comes to "normal" family and community activities.

Of course, the best kinds of hobbies are a contribution to the community.  But that aside, it also seems that we’re more able to contribute in our jobs or in our family when we have a hobby.

Some of these thoughts were echoed in a recent article published at AHDA HeadNotes.  Take some time to read A Third Space for Migraine Patients.

Are you having trouble seeing how this could really fit in your life?  Not sure why it’s important (and it can be more than just important – it can be revolutionary)?

I suggest you take a look at a book called The Element: How Finding Your Passion Changes Everything by Ken Robinson Ph.D.  Although I don’t agree with the author’s approach on everything, he does demonstrate with real, practical examples how and why we’ve been doing a poor job helping people – and ourselves – really find our passions in life.

Here’s the book description:

The Element is the point at which natural talent meets personal passion. When people arrive at the Element, they feel most themselves and most inspired and achieve at their highest levels. With a wry sense of humor, Ken Robinson looks at the conditions that enable us to find ourselves in the Element and those that stifle that possibility. Drawing on the stories of a wide range of people, including Paul McCartney, Matt Groening, Richard Branson, Arianna Huffington, and Bart Conner, he shows that age and occupation are no barrier and that this is the essential strategy for transforming education, business, and communities in the twenty-first century.

Take the time to develop a hobby, and to delve into what you can be passionate about.  It has far more value that you may realize at first.

From the Headache and Migraine News Blog

Hobbies: Helping or Hindering?

These other posts might relate:

• Migraine and Hobbies
• Migraine and Hobbies: Carnival

Alas, the Migraine Barometer is sold out.  Or… is it??

Well, yes it is.  But I have a confession to make.  I hid one up my sleeve … just one … so that I could give it away for free.

I know there are many of you who are waiting for it to be available again.  Well, who knows?  You could be the one to win this one!

To clarify – this is the new edition of the Migraine Barometer, featured here.  It will be shipped to you (if you win, of course), after the closing of the contest.

We’re doing a special contest this time, where you’ll have multiple chances to win – by doing things like "Liking" the Headache and Migraine News Facebook page, by tweeting, and by leaving a comment.  Just follow the instructions below!

This time, due to the nature of the contest, it’s only open to US residents.  Don’t worry – we’ll have another contest for everyone!

The contest closes 2 weeks from today, on the 24th of October.

From the Headache and Migraine News Blog

Win a Free Migraine Barometer!

These other posts might relate:

• Express Yourself! Contest
• And the winner is…
• Weather Related Migraine Attacks? The Migraine Barometer is (temporarily) back!

Dr. Edmund Messina is back – once again wanting to spread the word about headache, migraine, and the situations that people have to deal with in the midst of chronic illness.

You might remember the previous work of Dr. Messina and his team – Life and Migraine.  The goal of this first film was to give us a glimpse into the life of someone with migraine, and to help us see what they had to go through to get help.

I just received an email from Dr. Messina about his new movie (he wrote, produced, and directed), "Lily’s Mom", starring Kimberly Harsch.  I’m hoping to review it in a few weeks time.

Meanwhile, here’s a brief synopsis:

Mary is a mother who comes from a dysfunctional background. She struggles to be a good role model for her 8 year-old daughter, Lily, in the midst of crippling headaches, loss of job, deteriorating marriage and abuse.

The story is told through her conversations with her therapist as she learns to become her own advocate and overcome what seem to be insurmountable obstacles, including deaths, poor health-care and being thwarted by bizarre people in her life.

Mary’s struggles and eventual triumph are driven by her need to give little Lily the ‘normal’ life she herself never had. The that the personality disorders and psychiatric characteristics of the characters are medically accurate, making this very touching drama ring true to the viewer.

If you want to see the trailer, click the image below to go to YouTube:

For more, visit the official Lily’s Mom website.  Now that Dr. Messina is done with this project, he’s looking forward to other similar works to highlight the struggles people have dealing with headache and migraine.

From the Headache and Migraine News Blog

Lily’s Mom

These other posts might relate:

• Want to fight Migraine? Just Show Up.
• Cardiovascualar System: More Links to Migraine?
• Migraine, Headache, and Obesity – What’s the Link?

The new Headache and Migraine Disease Blog Carnival has been posted by Nancy over at Migraine and Other Headache Disorders.  Thanks, Nancy!

It was hard to choose favourites this time, so I’ll let you just wander over and check them out for yourself.  There’s everything from general posts about dealing with migraine, posts about attitude, and even a post about suicide (and why is that so rare?).

Yes, I even managed to be organized enough to get a post in there.  Click through to see what it is.

From the Headache and Migraine News Blog

August 2011 Headache and Migraine Disease Blog Carnival

These other posts might relate:

• Blog Carnival: What Keeps You Going? (and more)
• Communicating with your Doctor (Blog Carnival)
• Migraines & Romantic Relationships: February 2011 Carnival

If you’re looking for a headache or migraine specialist, there’s an updated resource available to you.

The Migraine Research Foundation provides an updated list of specialists listed by state in the USA (with a few in Canada too).  Recently, they updated their list to include patient ages.  So if you’re looking for a specialist for a child or teen, this is now a very helpful resource.

I recommend you get to a specialist as early as possible in headache and migraine treatment – it can save you a lot of headaches (no pun intended) down the road.

How are the specialists chosen?  The document states:

The United Council for Neurologic Subspecialties is an independent, non-profit, professional medical organization that certifies competency in physicians who have passed a special headache subspecialty examination.

To download the list, visit this resource page and click on Doctors certified in headache medicine.  You will be accessing a pdf document.

More about the United Council for Neurologic Subspecialties

From the Headache and Migraine News Blog

Headache Specialists: USA (and a hint of Canada)

These other posts might relate:

• Want to take a Peek at New Migraine Research?
• Great News – Matching Donations to the Migraine Research Foundation!
• Meet a Migraine Researcher -Dr. Golda Ginsburg

The Chatzy Migraine Chat is on tonight – with guest host Nancy Harris Bonk.  Once again, the chat is online between 6pm and 7pm Central Time – that’s 18:00-19:00.  The information you need to know to get into the chat room is on the left.  And the event takes place at Chatzy Migraine Chat.

Once again, I may be away at the wrong time – we’ll see!

One time I finally made it – only to discover I’d gotten the time wrong and everyone was gone. *sigh*

From the Headache and Migraine News Blog

Migraine Chat – Tonight with Guest Host!

These other posts might relate:

• Chatzy Migraine Chat – Visit online with other Migraineurs!

One of the winners of the book for children entitled My Secret, Jill, was kind enough to send me pictures of her 7 year old migraineur!  I won’t give any more information (to protect the innocent), but I think the smile says it all.  She was pretty excited to get a book about migraine – almost like it was written just for her (and it kind of was, right?)!

If you have a child with migraine, or another type of chronic pain, this is just the book to get!  Find out more right here.  I’ll bet there are some birthdays coming up…

From the Headache and Migraine News Blog

A Smile on a 7 year old Migraineur…

These other posts might relate:

• Now You Can Talk To Your Child About Chronic Illness…
• And the Winners of the free copy of My Secret are….
• Children’s Headaches – Should I Consider a Preventative Medication?

This week, just do it.  Buy a new pillow.

I know, I know – it wasn’t at the top of your to-do list.  Let me see if I can help.

How many hours a day do you use that pillow?  Need I say more?

All right then, how long is your head in contact with that thing in a week?  What else do you use for that much time?  Shoes maybe?  Fine.  Get a new pair of those while you’re at it.

This is your head, right?  Notice this is a site about headaches?

All right, let’s get serious.  If your pillow is 6 years old, about 10% of its weight is probably made up of dead skin, dead mites, live mites, and … mite dung (according to Dr. John Maunder of the British Medical Entomology Centre).  If it’s only two years old, it will be less… but still – isn’t 5% of its weight still a disgusting thought?

Oh, but you have a nice clean pillowcase.  As Bill Bryson says in A Short History of Nearly Everything,"To something on the scale of bed mites, the weave of the tightest human fabric looks like a ship’s rigging."  Lovely.

That clean pillowcase smells great, but what else is going into your nose?

Dr. Alexander Mauskop, in his book What Your Doctor May Not Tell You About Migraines, explains that allergens such as mites and dead skin can trigger migraine attacks, even if you don’t have allergies:

…As a part of the inflammation process, the blood vessels (including those in your head and face) become more porous, allowing the blood’s fluid and cells to seep into nearby tissues.  The irritated blood vessels widen as tissues become even more inflamed.  Does this sound familiar?  It should, because it’s a major part of the migraine process.  Although true allergy headaches are relatively rare, many environmental factors do have the potential to assault the nervous system and trigger a full-on migraine attack.  That’s why it may be worth your while to reduce or eliminate as many of these factors as possible.

Now you’re going to put it off while you decide what pillow to get?  Buy a cheap one while you’re deciding – trust me.  Personally, I like love the buckwheat hull pillow (or go queen-size organic if you can afford it); others like those memory foam pillows.  Lots of people like the very fancy water based pillows.  But just get something, and start there.

What is 1% Thursday?

Every Thursday at Headache and Migraine News (weather permitting) we’ll talk about one measurable, practical thing we can do to make our lives just 1% better.  Usually it will be something very easy, sometimes it will be a challenge.  Let us know if you try it, or share an idea of your own – and maybe a year from now we’ll see that things have really changed for the better!

From the Headache and Migraine News Blog

1% Thursday: Get A New One. It’s IMPORTANT.

These other posts might relate:

• 1% Thursday: Quiet (without sore ears)
• 1% Thursday: Caught with its Price Down – Now’s Your Chance
• 1% Thursday: Cold in the Summer, Hot in the Winter

Coming up in St. Louis, MO, USA on the 26th of March 2011 – a special event for patients with migraine and headache, and the health care providers who work with them.  The theme is Bridging the Gap Between Patient & Clinician.  You’re going to want to consider attending if you’re in the area…

For Health Professionals

You’ll be meeting in the morning, from 8am to 12pm (registration starts at 7am).  A breakfast is included.  Some of the topics that will be covered:

• What treatments are available for our patients?
• How can we diagnose more effectively?
• What are some of the latest ways to understand migraine?
• Time to discuss case reviews

For the registration fee and more information about registration, please visit the official page at the National Headache Foundation.

For Patients

You are invited to the afternoon sessions, which run from 12:30pm to 5pm.  You will have the opportunity to interact with other headache or migraine sufferers, to interact with health professionals, to hear about the latest headache and migraine research, and learn new ways to take control of your treatment.

Registration is $20 for you and a Guest, but the first 200 registrants will attend free.  You can register by phone or email, but remember that space is limited – don’t wait!

For more information, visit the official page for patients at the National Headache Foundation.

The event will be held at the Sheraton St. Louis City Center Hotel – and remember, it’s only 2 weeks away:

From the Headache and Migraine News Blog

St. Louis Event: Bridging the Gap Between Patient & Clinician

These other posts might relate:

• Live Chat on Cluster Headache! 24 January 2012
• Enter to Win – A Day Lost to Migraine!
• Augusta, Georgia – Fighting the Battle Against Migraine & Headaches