Five Tips for Those Newly Diagnosed with Migraine

Posted for WEGO Health’s September Blog Carnival — Back to school: ABCs for the newly diagnosed: Migraine Disease

Just five tips? Okay, but I could probably list a tip for most letters of the alphabet. Once you’ve seen a competent physician and been diagnosed with Migraine:

A – Always be an enthusiastic student: research migraine, read everything you get your eyes on, weed out the crap, find the facts, and try to understand the disease and your own brain-body system.

B – Be patient with yourself and others; you won’t accomplish the (A) assignments overnight, and it will take even longer for your friends and loved ones to begin to understand. Be kind to yourself when you’re not well and don’t push it or feel guilty about limitations.

C – Care for yourself and be an effective partner with your health care professionals to determine the best course of action for you. Everyone is different, there is no cure for migraine disease, and finding your best management approach takes time and more patience. But there is hope and help, and we have more research and additional methods of treatment all the time!

D – Do try to let others know when you’re having a migraine attack, how you feel, and if and or how they can help you.

E – Eat nutritiously (avoid food triggers once you determine yours), try to sleep regularly and Exercise whenever or however you are able to.

I know, this is actually more than five tips. After my 40 years of migraine disease, these are only a few of the things that have been helpful to me – lessons that have taken me years to learn. Those newly diagnosed with migraine have an advantage over me and other migraine veterans, and that is the abundance of information, resources, and treatment options now available. I hope you tap into them and take care of yourself.

This post is my September entry in the Health Activist Blog Carnival. If you’re interested in participating, you can read all about it here: http://blog.wegohealth.com/2010/09/new-health-activist-blog-carnival-back.html

Migraine and pain activism in September!

Fall in Boston

A shout out to all migraine and pain bloggers, readers and activists: here are a few easy and meaningful activities this month!

Today, 9/8, is International Literacy Day; check it out, be aware of literacy status worldwide… and read to someone or help someone learn to read!

It’s Migraine Awareness Week in the UK, and Teri Robert reminds us why it matters! You can always help raise awareness.

September 10 is World Suicide Prevention Day; Nancy Harris Bonk discusses and Diana Lee displays the National Suicide Depression Hotline. What can you do?

Invisible Illness Week this year is 9/13 – 9/19 and everyone can get on board with this one! Each One can Reach One. And you can. Lots of great ideas here, and my favorite is to leave little notes wherever you can letting people know that if they are in pain, they are not alone. How cool is that?

The whole month of September is American Pain Foundation’s Virtual March on Washington for Better Pain Management. Ellen S describes the event and provides the link for you to join the effort and add your voice!

The Migraine and Research Foundation can always put donations of any size to good use, and even if you can’t donate right now, you can access great resources on the MRF site!

These are quick and easy things to do during a busy September, so pick something you can do — and DO IT!

Aha! Finally… the migraine-glutamate genetic connection!

Last night I received this comment from David and was so excited that I was trying to write this post in my broken sleep:

“…an interesting research finding published recently titled ‘Unveiled: First gene link to common migraine.’ In short, this genetic variant allows a messenger chemical called glutamate to accumulate between brain cells, and this unleashes the migraine.” (more…)

How do I cope with migraine disease?

A simple question with a not-so-simple answer. This post is dedicated to Diana Lee and her Somebody Heal Me blog. It appears in the August 2010 Headache and Migraine Disease Blog Carnival where this question is the theme.

I am 56, and I have migraine disease. My first migraine attack came out of the blue when I was 16. What follows is my history and how over the 40 years I have ‘coped’ (or NOT) with migraine disease.

My attacks were sporadic in the early years and I took tons of aspirin and tried to figure out what was wrong with me – why I was violently ill in bed with head pain and vomiting for two to three days at a time. Doctors I discussed it with told me they were tension headaches and I needed to relax. Hmmm… (more…)

Got migraine? Got massage?

This is National Massage Therapy Awareness Week (Oct. 25-31,2009), and I know a fantastic therapeutic massage therapist in Sarasota, Florida, if you’re looking for one. Massage is great for migraine and I wish I could afford regular massage therapy! I guess my husband could learn it… 

Express Migraine to Congress!

Our ‘Express Migraine to Congress!’ campaign is launched at the wonderful suggestion of Vicki Gewe!

Vicki sent a book to Tom Harkin (D-IA), Chairman of the Senate HELP Committee, and I sent a copy to each of my senators, Barbara Boxer and Dianne Feinstein. Seven books are on their way to Congress now!

AND for every book sold in this effort, we will donate $1 to the Alliance for Headache Disorders Advocacy. You can make a dual impact with your purchase.

Anyone can purchase a book for Congress to promote awareness and migraine research here: http://www.wordmetropress.com/congress.html. Simply make a note in the PayPal purchase form which Senator or Representative you would like to receive your book. (more…)

Invisible Chronic Illness Awareness Week

Shared by Teri Robert (thank you) – and completed by me:

30 Things About My Invisible Illness, Migraine

Anyone who has Migraine disease or another headache disorder knows what it’s like to live with an invisible illness. People can’t see our illness. There are no outward signs. Invisible illnesses are easy for “healthy” people to ignore. This adds to the burden of disease and makes lives even more difficult.

Each year, National Invisible Chronic Illness Awareness Week is observed to educate the public and raise awareness about invisible illnesses. One of the blogging activities this year is a “meme,” 30 Things About My Invisible Illness You May Not Know. So, here’s my meme… (more…)

If Women Ruled and Migraine Had Maggots

Would the migraine world be much different if migraine hadn’t been so invisible for so many years? If it hadn’t been considered a woman’s ‘headache,’ particularly because often it was wrapped around hormones and the menstrual cycle? If more men had migraine disease or more men had spoken up about it over the years? If women had been more vocal and assertive – or aggressive – about their real symptoms? If Virginia Woolf, Joan Didion and others had been men?

Yes, it would.

I was raised as a good little Midwestern girl, to be seen and not heard, to have a superwoman’s work ethic, an obligation to help others and to be responsible and accountable for my actions. Not that any of these things are bad, just that for 15 years or so, this is why I listened to doctors who said my horrible ‘headache’ attacks were just a part of menstruation, that I needed to relax and ‘stroke my chin’ so I wouldn’t develop ulcers to go with that ‘headache.’

All those years of hearing in some way or another that migraine was my doing – you need more exercise, more sleep, better food, more relaxation, change your personality – blah, blah, blah… while I stoically suffered through too many two-to-three-day sick episodes per month with pain, nausea, diarrhea, and life between two sheets in a dark room with my friends, the ice packs and vomit buckets. (more…)

Migraines — All in the Family?

While I’ve never written about migraine in my family before, even in a journal entry, it’s a mystery that I and my family members have tried to solve once or twice.

As one of five girls – yes, I have four sisters and no brothers (my poor father!) – and one of the three of us who have migraine disease, naturally I’ve wondered (and lamented) over the years, “Why me/us – what’s the reason or connection?”

(more…)

Independence, Liberty Bell poem

I so enjoyed this poem yesterday from Gloriana Casey, one of the poets with work in Migraine Expressions, that I wanted to share and spread its message.

“VOICE OF THE LIBERTY BELL”
by Gloriana Casey for 7 /4/ 2009

In Philadelphia, I live,
a grand and giant bell.
And long my life, and journeys made.
the stories I can tell. (more…)