D is for....

Depression - Almost half of Migraineurs experience depression. Why wouldn't we? Being in pain more days then not can get very depressing and lonely. Not to mention some of the preventive medications we can use have depression as a possible side effect. Teri Robert has written about Depression and Migraine being co morbid - meaning you can have both, but one does not need to exist for the other.

Depression Common in Headache Sufferers

Depression in Woman with Migraine Linked to Childhood Abuse

If you or someone you know suffers from depression, HealthCentral has a site for this as well. It's at My Depression Connection. Depression is not something to fool around with. I have been battling with it since I was about 8 or 9, but not diagnosed until I was 14.

Dehydration - This can be a huge Migraine trigger! It can also trigger a headache for those who do not have Migraine Disease. You would think the first sign of dehydration would be thirst, but nope! It's headache!

Diagnosis - When dealing with any new symptom or illness, it is crucial to get a proper diagnosis. Don't go guessing what you have - get to a doctor and have it checked out! You will save yourself a lot of aggravation, and maybe even your life by doing this! Trust me!

Disability - "According to a World Health Organization analysis, migraine alone is responsible for at least one percent of the total US medical disability burden, and severe migraine attacks are as disabling as quadriplegia." Migraine also makes up 9% of labor loss in the US alone.

Statistics and quotes found at the Alliance for Headache Advocacy Fact Sheet

DHE-45 - Dihydroergotamine is an injectable drug used to abort Migraine. It also comes in a spray form called Migranal. This drug can be used in an IV treatment therapy as well.

IV Treatment for Refractory Migraines

A is for:

Aura: Only about 25% of Migraineurs experience an aura. An aura can be different things to different sufferers. Visual issues such as flashing lights, floaters, zig zag's, blurry vision or even loss of vision. My friend Rain just found a great video on aura, which you can see HERE.

Abortives: Abortives are medications that actually abort a Migraine attack. There are quite a few options in abortives right now, including Triptans (Amerge, Axert, Frova, Imitrex, Maxalt, Relpax, Treximet, and Zomig). Then there is Migranal, DHE, and newly back on the market, Ergomar which are Ergotamines. And last but not least, Midrin, which is a combination of Acetaminophen, Isometheptene, and Dichloralphenazone. Abortives can come in many forms such as pill, capsule, indictable, IV therapy, nose spray, and even wafers. Not all abortives are available in each form, click the links for more info on them.

Alice in Wonderland Syndrome: Given the name because of famous Migraineur Lewis Carroll's book, Alice and Wonderland. This is a specific type of aura that can make a person feel like they are too big or too small. Teri Robert just recently wrote a great article on this: Alice in Wonderland Syndrome: The Basics.

Aphasia: The inability to speak or trouble speaking. Also may affect comprehension of words.

Allodynia: Sensitivity to touch.

ANODYNE Headache and PainCare: This is where, IMO, the top Migraine and Headache Specialist set up shop. Dr. John Claude Krusz's office is located in Dallas, Texas. Dr. Krusz is know for IV therapy and treating the patient, not just the Migraine disease.

Alliance for Headache Disorders Advocacy (AHDA): A group of Doctors, patient advocates and patients working together to raise awareness and funds for Migraine research.

ADVOCACY!!!!!: Teri Robert, the top Migraine Advocate! Advocacy is empowering yourself, sticking up for yourself, and teaching others to do the same. It's fighting for a cause. It's busting your butt, it's having a great passion for something. This is how I view the word Advocacy.

Wow - "A" is a big one! I didn't do them all, because you would lose interest in reading them, and I also wanted to give you, the readers a chance to add your own! Please feel free to add any other "A" words you feel fit in with Migraine, and give a definition.

Using a capital M

My lovely friend over at My Migraine Connection, number one patient advocate (yes, that's right, she rocks!), Miss Teri Robert, has written an awesome Share Post about the capital M.

What is the capital M you ask? Well, it's the first letter in the word Migraine!

I've spoke to Teri about this before, and I am in total agreement. Migraine should be capitalized!!!! It should not have to do with a person's name, if it is a disease, it should be capitalized! At least this is my feeling on the subject.

If you would like to read Miss Teri's Share Post, and I know you do!!, you can check it out: Migraine with a capital M

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

MAGNUM

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.

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.

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 migraineexpressions.com.

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

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

NEW MIGRAINE ART AND LITERATURE BOOK FROM WORD METRO PRESS

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 www.wordmetropress.com 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 editor@wordmetro.com for further information.

www.wordmetropress.com, www.migraineexpressions.com

News: Topamax May Cause Birth Defects

Good to know I just stopped taking it! Not that it would affect me now, since I'm not planning to have a child anytime soon, but still!

Teri Robert wrote an article about this today over on My Migraine Connection. Please check it out: Topamax May Cause Birth Defects. Also, Marijke over at Help My Hurt did an article about it too: Epilepsy and Migraine Drug Topamax Investigated for Birth Defects.

Now, yes, I know with any drug, there are risks of side affects. The point is that the good should outweigh the bad. But this one really took me off guard. I mean, I know you are not supposed to take this drug while pregnant, but what about those people who are taking it for Epilepsy. Having seizures during pregnancy can harm the baby, not taking your Topamax for Epilepsy may cause seizures.

It's just sad when a medication that may be working great for you has to be changed for this reason.

So, if you are out there and on Topamax and trying to conceive - please, PLEASE talk with your doctor about other options. It's always better to be safe then sorry.

I've got a contract with HealthCentral!!

Hello my lovely readers! I have had quite an opportunity handed to me (not to say that I have not worked hard for it, I feel I have). The lovely Miss Teri Robert over at My Migraine Connection has been mentoring me now for about a year.

Well my work has paid off! The HealthCentral Network has offered me a contract to become an EXPERT on their migraine site!!

I could not be happier!! I have so enjoyed working with the lovely people over at MMC, and to now be an expert - WOW!!!! This on the heels of just coming back from an absolutely fabulous time in Boston at the American Headache Society 50th Annual Conference.

So I just thought I would share the news with all of you - My title over at My Migraine Connection is now "Community Moderator". I will be helping out Miss Teri and Miss Nancy, who is the Community Manager. So pretty much in the hierarchy - it goes:

Queen - Teri

Princess - Nancy

Princess in training - Me (sounds better then Duchess I think)

Hey I have to find a way to wear a tiara any way I can!!!

Off to Boston in the morning!!!

So Teri and I are off to Boston in the morning for the 50th annual American Headache Society conference. This is Teri's fifth year attending and my first. I am so excited, I cannot wait.

I am just finishing up the packing, the getting myself organized and all that stuff.

We will have a lot to report from Boston, so stay tuned!! I am not sure how much of it I will have time to report on here before I get back, but we will be Share Posting on My Migraine Connection during our trip.



So wish us luck and please check in here and on MMC for updates from the confrence!!!!!

National Headache Awareness Week! June 1-7

So I have been really slipping on the blogging lately. Sorry to all of my 3 readers out there! It's not for lack of wanting to, or having interesting things to say.....it's that I've been super busy.

Hopefully this week will jump start my butt to what promises to be a very busy month!!!!

To start it off: It's National Headache Awareness Week!!! Yippee!! I've celebrated by informing some co-workers more about this disease! (We should have our own mylar balloons, right? With little brains on them??) Just thinking out loud. Maybe I'll make a brain cake to celebrate....

Ok, let's get serious!

The National Headache Foundation started a new campaign, and a new YouTube Channel! The new "campaign" is called "getting a head START on your headaches". Teri Robert wrote a great article on it. This year marks the 15th annual National Headache Weeek that has been "celebrated".

And, in news to come later this month - I have the pleasure of going to the American Headache Society 50th annual confrence in a few weeks with none other than Miss Teri Robert!!!!

I am so excited I cannot wait!!! We are going to have such a great time! I will be keeping you all updated on here and also through My Migraine Connection.

With all this news in one post, I can hardly contain myself! I'm going to try really hard to get on here more often and get info out to you guys. I'm sorry I have not been more on the ball lately. I know I've missed a couple blog carnivals and things of that nature, but I'm going to try and get on here at least once a week!

That's about it for now!

Special K.....

Well, at least that's what the kids call it.

Ah, yes, ketamine.

I was recently reminded of this drug when I was over at the Migraine News Network which is also my friend Rain's site.

In one of her recent posts, she mentioned an article, Night club drug could ease depression, on how ketamine can actually help ease depression!

For those of you who didn't know, ketamine is also used in IV therapy for migraineurs. See this wonderful article:IV therapy for Refractory Migraines by Teri Robert about Dr. Krusz down in Huston who is know for his IV therapy and of course, his kind nature towards patients! Love ya Dr. K!!!!

I found this funny because well, back in the day I used to go to the club, and although I never personally did "K" or "Special K" I just remember all the hanging "K"s all over the place (think the Kellogg's red K).

Also, I had a friend that worked for a dentist. Well actually and oral surgeon. His drug of choice for putting children under? Ketamine! Yes, he would put these children into a K Hole because the side effects from the Ketamine are less then those of the other drugs.

The one little interesting side effect of a "K Hole" is that as you come out of it, you act as if you are a child again, like in utero. Yep, you may actually curl up in the fetal position and gurgle like a little baby. Interesting side effect isn't it?

Now, of course, the amount being used for IV therapy for Migraineurs is obviously not the same amount as what a dentist would used to actually put someone under....

But I still found the whole thing very interesting.....

Blog Carnival Posts are up!

Yes, I didn't put this up right away - we had some Internet issues the last few nights and finally we have things up and running! Yippee! In touch with civilization again!!!

On April 14th, Diana over at Somebody Heal Me announced her blog carnival!!

There are some wonderful entries, 14 in total!! Some names I recognize, some I need to get to know!! My friends Teri Robert and Megan Oltman both have submissions up there, along with many others, so please check them out!!!!

Ok guys I promise, that's it for tonight!!!

See you got three in one day!!

2008 Putting our Heads Together Poetry Contest!!

What a great way to express yourself and raise awareness!! Brought to you by Help for Headaches and My Migraine Connection, and judged by MAGNUM: The National Migraine Association.

Lead MMC expert, Teri Robert has helped put together this great event, sponsored by her site, Help for headaches and the Health Central site, My Migraine Connection.

Entries need not be long, I was looking over past entries today and got inspired to write my own! Even if this would be your first poem or written word, feel free to enter it!!! It would be a wonderful way to express yourself and get your thoughts out there!!

The deadline for entries is April 21st, and winners will be announced on April 30th.

You can enter the poetry contest by going to MMC at this direct link Here.

Please show your support and enter!! It will be fun!!

Fighting the good fight.

The road to "recovery" or just I guess a better word would be "managing" migraines can be a very twisty, windy road, with lots of branches and speed bumps in your path.

I started on my journey to gain my life back from my head about 3 years ago now, when my migraines grew out of control. Back then, I didn't even know what a migraine really was, or even thought that I had them.

All I know is that I would be at my office every day with tears streaming down my face, not because I was crying (well, sometimes) but because the pain was so intense and the lights so bright, that my eyes would tear from the pain.

I thought this is something I just have to deal with, it's just a "bad headache". In a way I'm so glad I was wrong. At least now, I don't suffer alone.

I have found through education, which, sorry to say, really didn't start with my first doctor - all they did was throw some Zomig at me and say "try this when you feel your head start to hurt". Yeah, thanks for your time!!!!

Between doctor #1 and doctor #2 - I found the site and the woman that helped me change my life (holding back tears now). My Migraine Connection is the site, and the lovely Miss Teri Robert is the woman. This lead me to Teri's book, Living Well with Migraine Disease and Headaches. I think I read it in like 2 days! I couldn't put it down!!! It was everything I needed to know about migraines that my doctor didn't or wouldn't tell me (yeah, that's part of the title too! LOL)

So between the website, the book, and Teri - I knew that there had to be more out there for me. I saw another doctor and was scripted my first preventive.... Topamax.

Topamax became my life saver....but it didn't last long. I found myself on the MMC forum every day, asking questions, talking with people with migraine and going through the same things I was going through. I kept reading, learning and educating everyone I could on this disease, as fast as I could learn about it!

Now, I am trying to not only be my own advocate, but be one for others. I now host on MMC with Miss Teri who is the end all, be all of migraine knowledge, among other things she is one of the nicest people I've ever had the pleasure of speaking with.

So you ask me how I cope with what I know know is a neurological disorder that effects over 36 MILLION Americans?

I learn. I teach. I fight. I educate.

I go to sites everyday to see what's what with the latest on migraine - blogs, MMC, email alerts anytime Migraine is mentioned ANYWHERE on the web!!! Yes, maybe it's become a little obsessive, but this is not like any other disease, at least not that I know of.

There are hundreds of different preventive medications currently being used for migraine treatment....it can take a very long time for a migraineur to find the one - the one that works. I try as hard as I can to be my own advocate. I learn about this disease, sometimes to the point where I know more then the doctors treating me (and that's when they get fired!).

I am out there, fighting not only for myself, but for all of us migraineurs - fighting to get us more funding, by sending out emails and posting about the AHDA. I'm leaving the flyer's in my office, giving them to friends, family, my doctor, pretty much anyone who will take one and give me two seconds to explain how important this really is.

This is how I cope. I cope by fighting the good fight. I cope by knowing, we can and we will make a difference.

We are one voice united, and if we all fight together, together will succeed.

Support for Migraineurs!!!

Since becoming a host on My Migraine Connection, I've become very involved in wanting to do SOMETHING, ANYTHING, to raise awareness and support for migraine sufferers. I don't care if it's handing out flyer's on the roadside, e-mails, what have you....I just know that I have to do it. Not only for myself, but for the family I've meet on the forum.

I admire Teri Robert so much for what she does every day for all of us. If I can do half of what she does, I would be happy.

Here are some statistics as to what lights my fire....aside from being the obvious sufferer.

*According to a study published in the April 1999 issue of the Archives of Internal Medicine, migraine costs American employers $13 billion per year due to missed work and reduced productivity.

*It is estimated that 157 million workdays are lost annually because of the pain and associated symptoms of migraine. (Source: National Headache Foundation)

*Most children who get migraines, have at least one close family member who suffers from migraines too. If a child has one parent who suffers from migraines, they have a 50% chance of getting them too, if both are sufferers, this rises to 75%.

*Migraine alone is the 12th most disabling disorder in the US.

With facts like that, we need more research! We need better treatment!

Now is the time to act!

Please visit Alliance for Headache Advocacy and sign up for emails. The site was put together by my friend, the lovely Miss Teri Robert , along with one of the top headache specialists, Dr. William B. Young, of the Jefferson Headache Center.

Also, see that little badge over there to your right? You'll find that on the Alliance for Headache Advocacy page too, I encourage you to click on it, it's your friend! Donate! Donations are as little as $10.00 and are tax deductible. The American Headache Society will even send you a nice letter thanking you for your donation! Please! Donate now and donate often! We are not even to the half way point to where we need to be.....$10, it's not a lot - you can do it!

Thank you all so much! Thank you for reading! Thank you for your support.

Here we go!

So I decided to start a blog....

Here's a little about me. I am a migraine sufferer. For those of you who don't know, Migraine is a neurological disease that strikes 36 million Americans. I have had the honor of hosting at a wonderful site - My Migraine Connection which is run by the lovely Miss Teri Robert!



After reading her book, Living Well with Migraine Disease and Headaches I can honestly say it changed my life. I went from being just a sufferer to being an advocate. I am now so much more involved with my health care then I ever was before. Her book gave me my life back.
And, the forum setting she has created on that site is so comfortable - it's like talking with family - only they actually "get it"!

Since this is my first "blog" and I'm just learning my way around this thing - I'll just start with this.

If you are suffering from migraine - know there is help out there. You do not have to suffer alone. Migraine is a silent disease. It can also be very depressing. I know for me, there are many times when I feel alone and sad, depressed and like no one understands. Trust me - people do.



There are so many medications out there now to help control migraine - it's amazing. There are over 100 different preventives, in almost every drug family, Anticonvulsants, Beta Blockers, Anti-depressants, SSRI's, Muscle Relaxers, ACE inhibitors, Calcium Channel Blockers, just to name a few!



My current regimen consists of 75mgs of Topamax (anti seizure) which I take in a split dose, 25mgs in the morning and 50mgs in the evening. I also take a multi vitamin, 250mgs of Magnesium, Frova 2.5mgs to abort, Skelaxin 800mgs as needed, and Meletonin every night at bed.



That's just a bit about me - I figure that's good for a first post right? But because of my obsessive nature, I'm sure I'll be back on here later to post again!