Wednesday, August 27, 2008

Seems like everyone has advice....

Yes, I have an invisible illness. You can't see it, and if I didn't tell you I had it, you would probably never know.

Even with Migraine Disease, I have managed to still work and have a somewhat normal lifestyle. This is not to say that I don't end up in pain at work, or have to cancel plans last minute, but I still consider myself one of the lucky ones. Migraines have not totally disabled me.

For the times people do see me in pain, I get a lot of "have you tried this?" comments thrown my way. Maybe it's because the average person does not really understand that Migraine is "not just a bad headache".

Migraine is a genetic neurological disease affecting close to 36 million Americans. Migraine affects more people the Diabetes, and is the 12th most disabling disorder in the US.

You would think with those numbers, more people would know what it is. I guess because with Diabetes, people know it's watching your diet or insulin that is used to control it.

It just seems odd to me that there are so many people out there with misconceptions or no knowledge about Migraine at all! That's probably part of why it's under diagnosed and an individual waits till their attacks are very chronic before getting treatment.

The "can't they do anything for you" comments get old. I get tired of answering them. I am doing everything I can, trust me. If you felt anything like I feel on a daily basis, you would be on the computer researching Migraine, talking to people, looking for the best specialist in the world, no matter what the cost.

Granted, I am happy when I see a news report on Migraine make the evening news, but still, the information given to the general public is information Migraineurs have had for over two years. The news acts like it's a new fangled test, drug or device, when it's been on the market for years!

I wish for the day when invisible illnesses like Migraine, Multiple Sclerosis, Fibromyalga, and many others are hitting the main stream publications and radio waves.

So many of us suffer alone, trapped inside our pain. But having support groups out there make life a little easier. Knowing that "oh she feels that way too!" is comforting. Sharing pain is a powerful bond, yet I don't wish it on anyone.

There are a lot of great organisations and support out there if you suffer from Migraine:

My Migraine Connection

The Alliance for Headache Disorders Advocacy


The Migraine Research Foundation

The National Headache Foundation

Oh, and I can't pass by this little tid bit either.

If you have someone that is a "can't they help you" person or just doesn't understand, give them a copy of Teri Robert's Friends and Family Letter and help educate them!

Find more videos like this on Illness-Disability-Healthcare-Caregiver Ministry Network

I just wish for those who don't understand to maybe think before they make comments.

Tuesday, August 26, 2008

Shop for a cause!!!

The Migraine Research Foundation has teamed up with Macy's shop for a cause event!!

I received an email about it today!

"Shopping Shouldn’t Be A Headache!

MRF is proud to announce its new partnership with Macy’s Shop For A Cause

MRF is selling shopping passes to Macy’s Shop For A Cause. For only $5, you get a coupon for up to 20% off (exclusions apply) at all Macy’s stores and online on Saturday, September 20. To buy a pass, send $5 to the Migraine Research Foundation, 300 E 75th Street Suite 3K, New York NY 10021 or visit (put “Shop for a Cause” in the comment field). Please include the address where we should mail your pass.

All of the money raised will go directly to the Migraine Research Foundation!"

So if you need to get your shop on, why not do it for a cause that is very near and dear to us??!!

Monday, August 25, 2008

Invisible Illness Week - September 8-14

Next week is Invisible Illness week. It is very important to us in the "invisible illness community" to keep getting the word out on our invisible illnesses.

In my case, it's Migraine Disease. Ya can't see it, but I know it's there!!

Please read below for the press release from

Blogging for Awareness of Invisible Illness Week Unites Thousands
AUG 2008

Chronic illness statistics are staggering, with nearly 1 in 2 people in the USA living with a chronic condition and, according to U.S. Census Bureau, about 96% of illnesses are invisible. With hundreds of thousands of people on the Internet searching for health information and support, thousands of bloggers now post daily journals about the emotional challenges they live with while facing a daily chronic illness filled with pain.

National Invisible Chronic Illness Awareness Week, September 8-14, 2008, is inviting these blogs to have a substantial role in their awareness campaign. For example, part of their outreach includes over thirty days of guest bloggers as well as bloggers across the internet posting about invisible illness matters. For example, if you have an invisible illness-and a legal handicapped parking placard-you’ve likely faced a few stares and questions if you park in the blue spot since your invisible illness does not require the use of a wheelchair.

All over the internet, bloggers are putting their illness awareness efforts together to join in helping more people become aware of invisible illnesses. They show their support by posting about invisible illness issues, on their own blog. A downloadable badge that says, “I’m blogging for Invisible Illness Awareness Week” can spread the word about their commitment to the cause. Plus, bloggers are also thanked publicly each Friday on the Invisible Illness Week blog, which can give them lots of extra exposure for their own web site. Bloggers can post anytime, but they are also encouraged to specifically post on September 8th to kick off the week.

Lisa Copen, who founded National Invisible Chronic Illness Awareness Week in 2002 says, “Though we live with thousands of different illnesses, we have more in common than not. For example, illness impacts our families, careers, finances and daily living, to name a few. We can all learn from one another and share during this journey.” She adds, “And frankly, people are tired of hearing, ‘But you look so good!’ and they want others to know that their illness is legitimate despite how well they seem to be holding it all together.”

Laurie Edwards is the author of a recently published book called, “Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties.” She has blogged about her illness since 2006 and says, “When you are a young adult people expect you to put in long hours to establish a career, to jump into the dating world, and to build a life for yourself. But they certainly don’t expect you to be sick. There’s no such thing as ‘too young’ to be sick! That is just one of the many reasons why Invisible Illness Week is so important!”

If you would like to join this unique opportunity to blog for awareness about invisible illnesses, see . You can also receive updates, participate in surveys, win prizes, and find out more about the telephone workshops at the Invisible Illness Week web site: .


Invisible Illness Week Theme Offers Hope Despite Pain
AUG 2008

National Invisible Chronic Illness Awareness Week, September 8-14, has announced the 2008 theme: “Hope Can Grow From the Soil of Illness.”

Lisa Copen, Founder of Rest Ministries, the sponsor of this annual event says, “Illness can signify the loss of one’s plans and even dreams, but most often people who live with invisible illness find a new purpose they would not have imagined under any other set of circumstances.”

The next month will feature bloggers on the topic of illness, all of who have found a renewed sense of direction, despite the life-altering changes illness has brought into their lives.

Copen, 39, who was diagnosed with rheumatoid arthritis and fibromyalgia at the age of 24, remembers searching for what her purpose would be within her new limitations.

“I had always planned to work for a nonprofit doing something to help others, but I never felt I was efficient or empathetic enough because I had not walked in the shoes of those I served. Now, through my illness ministry and books on aspects of coping with illness, I have the chance to use what I experience each day to reach out to others. It’s my hope that they will also find hope despite their illness, as they discover that new sense of purpose in the pain.”

To find out more about the telephone seminars that will be held September 8-12, as well as the invisible illness week awareness outreach products, visit .


Saturday, August 23, 2008

Drug holiday is OVER! I have a new preventive!!!

I went to my neurologist on Tuesday and also started a new preventive medication. I had given up on Topamax and Amitriptyline because of the side effects...and well, I was still getting an average of about 7 Migraines a month.

My new preventive is Inderal. Inderal is a Beta Blocker commonly prescribed for high blood pressure. It's also sometimes used after a heart attack.

I've been on the Inderal at 10 mgs a day, in a split dose (5mgs a.m./5mgs p.m.). So far, so good. The first night I think I freaked myself out. Being that I have a normal low blood pressure, I was nervous to try this drug, but my doctor put me at ease saying that at the first sign of it giving a bad side effect - I back it down.

I have to say, other then the first night, I am sleeping better now then I have in a long time. I don't know if it's the Inderal, since it can take up to 6 weeks to take affect, or if it's my own "placebo effect". I think it's working, therefore, it is.

Now, I sleep like the dead. This is a welcome side effect (if that is what it really is) since I had been waking frequently and not getting sound sleep.

Also, my doctor gave me a script for Zanaflex to be taken at the onset of any Tension Type Headaches.

The story with my Tension Headaches is that the only thing that would touch them was Vicodin. Originally, if I caught the headache in time, Skelaxin would ease the pain somewhat. That is no longer the case. I tried Midrin to no avail. So now I am on Zanaflex for them.

My doctor said we will, at first, treat with Zanaflex on an as needed basis, since I just started the Inderal. The reason for not starting me on Zanaflex as a preventive with the Inderal, is to see which drug is or is not working. Once we know the Inderal is (hopefully!!) working, then we can add the Zanaflex in as a preventive as well. That is, if my Tension Headaches are still frequent on the Inderal.

I also received my first script for a rescue medication, that being Vicodin. I had so much Vicodin left over from my shoulder dislocation last year, I have not had a need to ask for a rescue.

So, that's my story.

So far, since starting the Inderal on Tuesday evening, I have not had a Migraine. I have, however been having a new aura. My aura's usually consist of floaters that look like oil spots, or sometimes, little shooting stars. The last two days I've had a more defined aura in that I'm seeing half crescent zig zags just in my peripheral vision.

For those of you unfamiliar with aura, I found a great video on YouTube featuring Dr. Silberstein from the Jefferson University Hospital.

I should also mention - I got back my blood work results, and as I suspected, I was deficient in Vitamin D! Thank you again Dr. Krusz for bringing this possibility to my attention! I am now taking 400mgs of Vitamin D, along with all my other supplements.

For more information on Vitamin D, you can check out some great articles by Diana at Somebody Heal Me. I have linked her articles directly below:

Chronic Migraineurs Lack Vitamin D

Vitamin D Eases Chronic Pain

Also, if I am not mistaken, Teri Robert is or will be working on an article about Vitamin D as well. Once that is up, I will post the link here.

Thursday, August 7, 2008

Here we go again!!

I've been on a little drug holiday from my preventive medications for almost a month and a half now. I should have known better. What I once thought was my worst time with migraines, the time that lead me to preventives, has now been surpassed.

Out of the last 39 days, I have had a Migraine or a Tension-Type headache all but 5 days. I've also had Tension headaches that triggered Migraine for me. It has not been an easy time!

Now yesterday, I did something I never thought I would do again. I ended up in Medication Overuse Headache. I was not thinking after two days of TTH and Midrin and yesterday I pulled out the Vicodin, which also contains acetaminophen - and BLAMO! MOH city!

The good thing is, it was not as bad as my MOH after my shoulder dislocation, which ironically was this same time last year.

I would be really grateful for some sort of a break here, so if you are listening up there, any time you want to put the Migraine Monster back in it's cage and away from my head, would be greatly appreciated!!!

This has me bringing up some things to mull around.....Is My Doctor Right for Me? I feel as if sometimes I hit a wall with my neurologist. My feeling is that, he likes that I am informed, but doesn't like that sometimes I am more informed than he is. I seem to be again struggling with the "do I stay"? or "do I go" scenario which is all to familiar to a lot of us migraineurs. It puts me in a hard position because I am a gal that likes to be an active part in my health care team.

Don't get me wrong, my neurologist is a great guy, but I tend to think he does not have that many Migraine patients, and those he does, he can appease with Topamax. Well I don't want to be on Topamax anymore.....or ever again!!!!

So we will see what happens. I go back to my neurologist on the 19th, after a nice weekend at the beach with my friends. I hope my next preventive serves me well. I can only hope at this point.

Migraine Expressions - picking it up tomorrow!!!

I have been waiting for this book to come out for what feels like an eternity. Betsy Blodin, the editor of this book was nice enough to write a Share Post about the book a few months ago. This gave us over at My Migraine Connection a sneak peek of the beautiful cover.

This book is a compilation of poems, written works and art by 125 migraineurs and/or their loved ones. It's like this book is from us, by us, for us. How wonderful is that!!!!

And Teri Robert wrote the forward and has a poem published in the book. Even cooler!!!

And for the best part....are you ready? Once the cost of publishing is met, Betsy is donating the proceeds to migraine research and advocacy organisations such as the The Alliance for Headache Disorders Advocacy!!

So, my friends, please pick up this book. You can get it from

I will be picking up my copy tomorrow!!! I am so excited!!

Here is a copy of the press release announcing the book:


Groundbreaking book depicts migraine in insightful visual and written art from migraineurs worldwide

San Diego, California, July 16, 2008 – Migraine Expressions: A Creative Journey through Life with Migraine illustrates in breathtaking art, poetry, essays and photography some of the ways tens of millions of people worldwide live, work, feel and love while trying to minimize attacks and manage symptoms of this often-debilitating disease. The courage and strength that takes is illuminated in this dramatic work from 124 writers and artists in many states and countries.

No other book expresses migraine in both words and art of people who suffer the symptoms and survive the disease; most books about migraine are from experts who define, explain, and offer advice on how to manage it. This book will complement existing information, be instrumental for people with migraine to share experiences and communicate feelings, and serve as a tool for furthering understanding among non-migraineurs.

Migraine is a neurobiological disease impacting more than 30 million people in the United States and similarly 12 to 15 percent of people in most countries of the world. It is a debilitating and little-understood disorder that is finally attracting the long-overdue attention it urgently needs in medical research and treatment arenas as well as in the general media. Celebrities, athletes and well-known professionals appear more and more often to share their stories or in news items of crippling migraine attacks. They represent many millions of others around the world.

Suzanne E. Simons, Executive Director of the National Headache Foundation, commented, “Congratulations! The images and the words are compelling. Migraineurs will relate to the visual images and poems. Those who don’t suffer may be better able to empathize after reading the book.”

The book includes a foreword by leading migraine educator, advocate and author, Teri Robert, Ph.D., who says, “Projects such as Migraine Expressions are rare, priceless, and sorely needed. They offer an intimate view of the impact of migraine disease. The works of art in this book are deeply personal and revealing. They are heart-wrenching and inspiring, filled with both terror and hope.”

And Richard B. Lipton, MD, Professor of Neurology and Director, Montefiore Headache Center, Albert Einstein College of Medicine, claims, "Migraine Expressions reveals a neurobiological disease from many highly personal perspectives as contributors transform their experiences into stunning verbal and visual art. The book will help people with migraine find their individual voices even as they recognize the universality of their shared experiences.”

Book details: Hardcover, 192 pages, full color, 8.5 by 11 inches, available from publisher at July 18, 2008, $34.95 retail. Editor is available for interviews, appearances and book signings.

# # #
Betsy Baxter Blondin is a longtime writer and editor, a nearly 40-year migraine survivor,
and this is the first book published by Word Metro Press.
Contact Betsy at 760.458.5576 or for further information.,