My Migraine and Headache Blog: 2012

Tuesday, January 31, 2012

08/09/2010

Where Migraines and Headaches Have Led Me

Hi there, and thanks for taking the time to stop by and read my blog. To be truthful, I've been delaying starting a blog for as long as possible. It's not that I don't have a lot to say (just ask anyone who knows me), but I've always wondered how I would differentiate my blog from the hundreds already out there about Migraine disease and headache disorders. And this morning I think I got it!

The last 14 years have been quite a journey. Our family has gone through many changes. We moved to a different state, have a dynamic daughter who just finished her second year of college, a handsome son who will be a sophomore in high school this fall, and a divorce - yes, mine - all with chronic head and neck pain.

For those who don't know, on December 9, 1996, my life was dramatically altered when I fell on patch of black ice in our driveway. This event, better stated mild traumatic brain injury (mTBI), has left me with chronic head and neck pain. I also believe the mTBI triggered a few other conditions. You can read more about my story in: My Social Security Disability Journey.

Learning to cope with my chronic conditions has been not easy. Being in pain every day certainly does not make for a pleasant being all the time. In fact, it makes one down right cranky. But I try really hard not to let it get the best of me with the help of a very trusted professional and few close friends. Some days are better than others. When my journey began 14 years ago, I had no idea that a path was already mapped out for me. Wherever this plan has come from -- God, the Universe, or some beautiful goddess, it has enabled me to educate myself about headache disorders, including Migraines. This in turn has allowed me to make it my passion as a patient advocate and educator, a gift I truly love sharing. Living in chronic head and neck pain has rendered me disabled and derailed my life path. But this is something I can do from home, during those precious hours when I'm able, even from my bed.

I must say, however, being a Migraineur and a divorcee is an entirely different story. This is what will make my blog different. The focus will always be Migraine disease and headache disorders, but I'd like to talk about what my life is like now being a divorced Migraineur in a caring, compassionate and non-threatening way. So, what do you think? Want to read along learn with me?

Feel well,

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08/11/2010

August Blog Carnival: How Do You Cope with Your Headache Disorder?

It's time for the August, 2010, Headache and Migraine Disease Blog Carnival!

The Headache & Migraine Disease Blog Carnival has been created to provide both headache patients and people who blog about headaches with opportunities to share ideas on topics of particular interest and importance to us.

The theme of the August carnival is "How do you cope with your headache disorder(s)?" What a great theme, and one that's always relevant. It's not easy to copy with living with Migraine disease or any other headache disorder, so what better to share about than how we cope?

The carnival this month is hosted by Diana Lee who also started this blog carnival.

You can read all these great blog entries in August Headache and Migraine Blog Carnival: How Do You Cope with Your Headache Disorder?

Feel well,

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08/16/2010

Migraines and Suicide

Suicide is a touchy topic that comes up in the Migraine community from time to time and has been mentioned a few times on a Migraine blog recently. Not being able to stop the daily pain of chronic Migraines (or any other chronic pain) is unbearable at times.

Having lived with chronic pain for about 14 years now, I understand the agongy one goes through on a daily basis. I understand when it hurts to get out of bed in the morning, when it hurts after taking a shower, and you can hardly do anything for the rest of the day because you are so exhausted. Then have to do it all over again, and for what? Will the pain ever go away? Will I have any kind of life, at all, ever? The life I once knew is completely gone. I still grieve over that loss. Some say time heals all wounds, but I have to tell you, healing is taking its sweet time.

The only way I can get up in the morning is by telling myself that today, just today, will be a different day. Maybe not a better day than yesterday, but different. I don't do it for my kids, my family, my friends or anyone else, just me. Maybe my pain won't be a six all day - just a two. Maybe I will be able to actually fold the laundry that has been sitting in the basket for two days and then have my son carry it up the stairs for me. I might even be able to make some sort of dinner for the two of us.

Letting the expectations of others go is really, really difficult. Because Migraineurs don't look sick (there's that invisible illness thing), people cannot seem to understand or accept Migraine and chronic pain. If they can't see it, touch it, or feel it, then it must not be true. I get so very tired of being asked, "What do you DO all day?" Really? "Staying home must be really nice for you." Really? Would you like to "talk a walk" around in my head for a day and find out? I seriously doubt it.

Learning to accept and cope with my chronic pain has been one of the most difficult things I have ever done. I could not have done it without help from a trusted professional. If those in chronic pain don't have a counselor, and believe me, if you tried to take your own life, you ARE depressed, then you might want to get one asap. For more information take a look this article by Teri Robert; Migraines and Feeling Hopeless.

I'm here and willing to talk...

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08/29/2010

Another Senseless Death - "Headaches" Really Can Kill.

Unbelievable. In 2008, the then nineteen-year-old Elizabeth Moen was experiencing what seemed like an endless headache along with nausea, vomiting, diarrhea and a stiff neck. As anyone in extreme distress would do, she went to see a doctor in hopes of finding help. Her outcome was anything but helpful.

Elizabeth's journey began on January 21, 2008, when she went to the Mankato Clinic in Mankato, Minnesota, to find relief from the relentless headache and additional symptoms she was having. Dr. Davidson examined her and immediately sent her to the hospital. She stayed for four days and was released with a diagnosis of Migraine, but did not feel much better.

Moen continued to suffer until February 4, 2008, when she went back to the Mankato Clinic. She was again evaluated by Dr. Davidson who still insisted she was experiencing Migraines. The doctor gave her additional pain medication and sent her on her way. As Moen continued to suffer with horrible headaches, a stiff neck and plagued by her original symptoms, my question is this - Were any additional tests run to find out why she had a stiff neck in addition to her horrible head pain? Three weeks, no relief with all those symptoms, and the doctor did not look any further? This is the part I can't wrap my head around.

Dr. Davidson didn't schedule any follow-up visits for Elizabeth, didn't inform her that having prolonged head pain, a stiff neck and various other symptoms could be anything more than a Migraine. So, on February 14, 2008, when she couldn't stand her extreme head pain and abnormal nausea any longer, she was admitted to the hospital. It was only after her convulsions began, that another CT scan was finally performed, finding a subarachnoid hemorrhage. She was airlifted to a larger hospital that was better equipped to handle emergencies of this type. But by this time, it was much too late. Elizabeth was already brain dead. She was kept "alive" so her organs could be donated. Only two weeks after she turned 20, with her entire life in front of her, she was gone. Why?

Seeing as Elizabeth spent four days in the hospital and had testing done - and I'm assuming she did - shouldn't more conclusive tests have been run when she saw the doctor at the Mankato clinic the second time? Did she have a lumbar puncture (LP) performed to rule out meningitis? I mean come on, I am not a medical professional by any means, but do know from raising two children (isn't it common knowledge?) that a stiff neck and prolonged headache may be a real problem - such as meningitis. So if an LP wasn't done in the hospital, or at the Mankato Clinic, why not? It certainly sounds as if there was enough "evidence based" medicine to at least run an initial CT scan, which they did when it was too late. Was it a matter of time? Money? What? Elizabeth Moen seemed to have many of the symptoms of a subarachonid hemorrhage, but she is dead because no one found it in time.

I just don't understand......and am so sorry for this family's seemingly senseless loss.

Sadly,

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Sources:

Nienaber, Dan. The Free Press. Wrongful death lawsuit filed - Mother sues Mankato Clinic claiming brain hemorrhage went undiagnosed in daughter http://mankatofreepress.com/local/x865117990/Wrongful-death-lawsuit-filed . August 21, 2010.

Quinlan, Sandra. Justice News Flash.com. Justice News Flash, Press Release. Minnesota Wrongful Death Lawsuit: Mankato Clinic, Doc. Sued For Negligence . August 23, 2010.

9/10/2010

My First Award in Migraine Blogging

I've been given A Lovely Blog Award, my first award! WinnyNinny PooPoo at No Extended Warranty nominated me for it and I am so very thankful. As my blog is just starting out, and this award is so unexpected, I am practically rendered speechless. It almost goes hand in hand with my new mantra -which I'm not quite ready to share yet!!

When we accept this award, there are a few responsibilities that come with it. There are:

Accept The Lovely Blog Award; posting the name and site of the blogger who gave you the award; pass the award on to 15 bloggers you've recently discovered letting them know you've given them the award; contact the blogger who you've given the award to.

Here are my bloggers:

Thanks for reading and feel well,

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09/13/2010

What Migraine Info Do You Want, How, and When?

Teri Robert and I want to bring you Migraine and headache information on the topics you want and need, the way you want to get it. And we're curious about how often you want to see new information.

To get feedback from you on these questions, Teri put a survey on her site,www.HelpForHeadaches.com. The information from the survey won't be used just for HelpForHeadaches. She's going to share it with me, and we'll also be using it on MyMigraineConnection.com and our blogs as well.

Would you please take a few minutes to help us out with this by completing the survey? Just go to Teri's Migraine Information Survey.

Thanks, and feel well,

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09/15/2010

Chronic Invisible Illness Awarenss Week and ME!

September 13 -19, 2010, is Chronic Invisible Illness Awareness Week. Certainly, Migraine disease and other headache disorders fall under this category. But since this blog is going to talk about Migraines and sometimes the trials and tribulations of divorce, wouldn't you say the emotional frustration of divorce is "invisible" too?

This year, for Invisible Illness Awareness Week, I'm going to do a meme; things about me, my Migraines and divorce you may not know about me, but are definitely invisible!

Do you have a "headache" all the time? My head hurts to some degree every day.
What gets me through the day? My two wonderful children.
What is it like living with head pain all the time? It is physically and emotionally exhausting.
How does it feel to be a single parent and have chronic illness? It stinks doing this all by myself, let's be honest. Divorce bites, big and hard. Being a single parent can be very difficult some days, especially when I don't feel well.
What is the hardest part of your day? Mornings! When I wake up each morning I pray that today will be better than yesterday - and most days it is!
The hardest things to deal with since my chronic illness? Missing the person I used to be. I was a great multi-tasker. Now I am - one task Nancy.
One thing people say that gets under my skin is? "What do you do all day?"
What was one of the saddest days so far in your life? Getting divorced, something I didn't want and was promised would never get.
How did you feel when you were granted Social Security Disability? Being declared "disabled" by the judge was the most surreal feeling I've ever had.
What was one of the happiest days in your life? Realizing that I can make it all on my own "the divorce" and buying a couch without anyone else's comments!
What is one of the most challenging things in your life? Coping with daily chronic pain is and continues to be one of the most difficult things in my life.
Want to know a secret? Sharing my pain, rather than always, I mean, always hiding it, is something I might want to work on.
When were you diagnosed? The day I fell - December 9, 1996 - seems to be the trigger (my mild traumatic brain injury) that set "things" in motion. Understanding and accepting that are two things I need to work on every day.
A gadget I couldn't live without? Does my laptop count?
One thing chronic illness has allowed me to do? Learn to share information about Migraine disease and headache disorders; support people, and be an advocate, because I really do understand.

Thanks for reading, and feel well,

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09/20/2010

Loretta Lynn: Wife, Mother, Country Music Star and Migraine Sufferer

I've been writing a series of articles on Famous Migraineurs. This month is dedicated to Loretta Lynn. I hope you enjoy reading the article as much as I enjoyed writing it...

Being a wife and mother of four by the time you're 18-years-old is tough enough; accomplishing this with Migraines is almost unimaginable. But Loretta Lynn did just that. Loretta Webb was born on April 14, 1934, in the Appalachian coal mining town of Butcher Hollow, Kentucky. Her father was a coal miner who worked hard, long, dangerous hours to put food in the stomachs and clothes on the backs of his large family. Loretta Webb was the second born out of eight children. Crystal Gayle, Loretta's half-sister, is also a singer and performer.

Loretta was 13 when she married Oliver "Doolittle" Lynn, a man she met at a pie social and had known for little over a month. About a year into their marriage, looking for job opportunities other than coal mining, they relocated to Washington State. The Lynn's settled in Custer, Washington, and their family grew. It was then that "Doo" really heard Loretta's voice and knew she had potential. He purchased a guitar so she could start practicing.

Please continue reading; Famous Migraineur, Loretta Lynn.

Thanks, and feel well,

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Last updated September 20, 2010.

09/23/2010

Migraine Care at Risk. Please Take 10 Minutes to Help!

Access to headache care is threatened: Contact your US Representatives now.

Take Action!

Neurologists provide specialized, coordinated, and often life-long care for patients with disabling headache disorders including migraine and chronic daily headache. Neurologists also provide comparable care for patients with other major and costly diseases such as Alzheimer’s, Parkinson’s, stroke, ALS, epilepsy, MS, peripheral neuropathy, fibromyalgia, and traumatic brain injury (TBI).

The recent health care reform act, the Patient Protection and Affordable Care Act (ACA), provides incentives to encourage primary care but failed to include neurologists among the eligible health care providers. This omission could worsen the shortage of headache specialist physicians.

The Alliance for Headache Disorder Advocacy believes that this issue is vital to preserving headache patient access to neurologists. We have joined 19 other national neurology patient-oriented advocacy groups in urging Congress to resolve this problem immediately.

On Tuesday, September 21, your US House member on Capitol Hill received a letter from Congressmen Michael Burgess (R-TX) and Russ Carnahan (D-MO) asking for support on including neurology in the ACA primary care incentive.

Please contact your US Representative and ask him or her to sign the Burgess/Carnahan letter! Follow the link to send an email message to your US representative as soon as possible.

This can be done in ten minutes or less, and every email makes a difference. Please use this link to Take Action!

Thanks, and feel well,

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10/04/2010

Migraine Mutation Gene Found - There May be New Hope.

Migraine is often a disabling disease affecting approximately 37 million Americans. Approximately 20-25% of Migraineurs experience some type of aura with their attacks. A Canadian study recently explored a large multifamily line of Migraineurs with aura and identified a gene mutation on a KCNK18 potassium channel gene. Gene identification can play a key role in disease identification, management and treatment.

Aura is the second phase of a Migraine attack, but not all Migraineurs experience it. Visual aura symptoms can vary from flashing lights, wavy lines and blurry vision to temporary blindness. Other aura symptoms may include:

olfactory hallucinations (smelling things that are not there)
auditory hallucinations (seeing things that are not there)
dizziness
confusion

To learn more about the symptoms that may accompany a Migraine attack, take a look at this article, Migraine with Aura - What Is It?
The gene mutation, KCNK18, prevents the potassium channel TRESK protein from working properly. TRESK's role is just one part of nerve cell communication. In the large familial study group of Migraineurs, the TRESK mutation virtually stopped the potassium channels (KCNK18) gene from doing its job.

Identifying this gene mutation may eventually alllow esearchers to discover new medications that help Migraineurs with aura. This does offer Migraineurs new hope. But we need to be realistic and realize that this will not happen overnight.

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Resources:

Lafrenière, Ronald G; Cader, M Zameel; Poulin, Jean-François; Andres-Enguix, Isabelle; Simoneau, Maryse; Gupta, Namrata; Boisvert, Karine; Lafrenière, François; McLaughlan, Shannon; Dubé, Marie-Pierre; Marcinkiewicz, Martin M; Ramagopalan, Sreeram; Ansorge, Olaf; Brais, Bernard; Sequeiros, Jorge; Pereira-Monteiro, Jose Maria; Griffiths, Lyn R; Tucker, Stephen J; Ebers, George; Rouleau1, Guy A. "A dominant-negative mutation in the TRESK potassium channel is linked to familial migraine with aura". Nature Medicine. September, 2010. doi:10.1038/nm.2216

Science News. Health and Medicine. Gene Linked to Common Form of Migraine Discovered. Science Daily. September, 27, 2010.

Thanks, and feel well,

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10/08/2010

Does Quilting Help Me Cope with Migraines?

Migraine and headache pain makes my favorite hobby harder sometimes, but I've found ways to enjoy it even when in pain.

I met Sue, my first quilting teacher and dear friend, at The Little Red School House in Massachusetts where our children attended pre-school together. Sue was one of the first people I met, making me feel quite welcome in a fairly tight knit group of people. We immediately hit it off and have been friends ever since.

Sue has been quilting and teaching quilting classes for some time and decided it was time I learned the art of quilting. I was never very "crafty" and wasn’t convinced quilting would be for me. And besides, my then mother-in-law was an expert quilter who had won blue ribbons - how could I possibly compete with that? Then it happened, she showed me the gorgeous fabrics and fabulous things you can do with it, I was hooked.

I began to enjoy this craft, this art or "hand work" as my mom calls it. I was in total awe of the colors and different combinations of colors you could piece together to complete a perfect block. Sue showed me how to hand quilt, and when my mother-in-law came to visit, she worked with me as well. As my interest grew, so did my circle of friends - we quilted together on a weekly basis - sharing our quilts and lives with one another. But as luck would have it, it was short lived.

After I fell, I was no longer able to quilt as I once did. Concentrating for long periods of time was (and still is) a huge problem. In addition to continuous daily head pain, I'm not able to sit still for a long time without my head and neck really hurting. I stopped going to quilting, but my dear friends would have none of it. If I couldn’t go to them, they would come to me. And that is just what they did, came to my house each week and brought whatever quilting projects they were working on, and if I was up to it, I would quilt with them. Their friendship helped me cope with my Migraines and chronic pain by being able to look forward to something special each week. The best part of this group was they totally understood if I wasn't feeling well enough (and that happened a lot) I wasn't able to participate or even have they come over. They got it.

Post-fall, quilting is a different story. I still love it, but cannot do it at the pace I once did. This has taken me a while to accept because when you love a hobby, you really want to immerse yourself in it. But when quilting causes pain, it can really put a damper on any project you may have. So, my way to cope with my quilting/pain "issues” is that I've found a new way to enjoy it. For example, I'm not able to actively participate in quilting as much as I'd like to. But what I do love is thinking about quilt designs, how color plays with fabric and how the fabric feels, how terrific each piece of fabric will look when I piece it together, and how exciting the end product will be. It is just a different way to quilt. But isn’t that what life is, always changing. If things stayed the same in my life for too long, I’d think something was “really” wrong.

Thanks, and feel well,

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10/11/2010

Hobbies and Coping: October Migraine Blog Carnival

Welcome to the October, 2010, Headache and Migraine Disease Blog Carnival!

The Headache & Migraine Disease Blog Carnival has been created to provide both Migraine and headache patients and people who blog about Migraines and headaches with opportunities to share ideas on topics of particular interest and importance to us.

The theme of the October carnival is "How have your hobbies helped you cope with your headache disorder?" This month's carnival is hosted by Diana Lee, the founder of the carnival, on her blog Somebody Heal Me.

There are some great posts this month. I hope you'll take a few minutes to check out the October, 2010. Headache & Migraine Disease Blog Carnival: Hobbies and Coping.

Thanks, and feel well,

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Botox Approved for Migraine Prevention

Migraine prevention has just taken a giant step forward. Onabotulinumtoxin A, better known as Botox, was approved Friday October 15, 2010, for Migraine prevention in adults. With over 37 million Americans suffering from Migraines, this is welcome news.

As Botox use became more popular within the last ten years for cosmetic purposes (wrinkle reduction), it was also noted some patients experienced fewer Migraines. Studies soon began to see if Botox was a viable option for Migraine treatment. And it was - Botox is now FDA approved for adults suffering more than 15 Migraines a month.

As promised here is the information from Teri Robert: FDA Approves Botox for Migraine. Very exciting news.

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Resources:

Bloomberg Business Week. Bloomberg.Com. Business Exchange. The Associated Press. FDA Approved Botox for Migraine Headaches. October 15, 2010.

Thanks, and feel well,

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10/24/2010

Migraine Patients - Lots of Good Information!

NuPathe Pharmaceuticals recently announced Zelrix, its transdermal sumatriptan patch, may be ready for FDA submission by the end of this year.

For the millions of Migraineurs not able to take oral medication for one reason or another this may be a great option for them.

For an update on this new appoarch, continue reading Zelrix Sumatriptan Patch at MyMigraineConnection.

Another post that may be of interest to you is my Migraine Question of the Week on MyMigraineConnection.com. This week's questions is about rescue medications: Is there a Migraine medication that works as well as Stadol?

Thanks for reading, and feel well,

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