Migraine Awareness Month 26: "From The Outside Looking In"

AwarenessMonth2012BC2Good morning, and welcome to day 26 of National Migraine Awareness Month!

Today's prompt for the Awareness Month blog challenge is:

Migraine Awareness Month #26: "From The Outside Looking In."
Write about what you think your family, friends and others think a day in life, a day with Migraine disease is like.

From the outside looking in...

Most of my family and friends are only vaguely aware of my job as a patient educator and advocate.  It might surprise you to know that the majority of them don’t even know where I work other than ‘online’. 

I have never asked them what they think my days are like, but they occasionally give me a little insight with the things they say.

Sadly, some of my friends think that I spend all day long visiting Dr Google, obsessing over my health conditions.  In reality this couldn’t be further from the truth.  Most of my time is spent either writing, or helping other patients online.  Most of these people think that spending time online must make me feel worse, when in reality the opposite is true.  Helping others gives me purpose and keeps me concentrating on everything but my pain, so I can often be found even working while in bed in the dark, iPad on my lap.  I stop for the day only when a Migraine is completely out of control. 

A few relatives think I waste my time each day in front of a television eating bonbons.  I wouldn’t know a bonbon if it stood up and introduced itself to me.  Although a radio or the television is often on for background noise to drown out my tinnitus (ringing ears) I rarely watch TV unless I happen to be passing through the room at an especially interesting time.  I average approximately 12 hrs a day working as an educator/advocate.  It’s true that part of this time is my job.  However, the vast majority of it is volunteer.  Patients are my priority.  Even with those numbers, I still feel that I let some patients down because there just aren’t enough hours in the day.  I do my best and hope they see that.

A few friends and relatives think I waste my time on useless or frivolous sights such as Facebook and they see no purpose in it.  The reality is that I visit many online social media platforms, participating in too many of them to really count.  Sometimes I ask questions myself because I am always learning, but usually my time is spent helping others who are asking questions or looking for support.  I also keep in touch with other patients through these social media platforms, and we are often found sharing prayer requests and comfort for each other.  Hardly a waste of time in my book. 

I take my meds when I’m supposed to.  I distract myself from my pain every day.  I take out a little time each day to concentrate on things that cause me to pause with wonder and smile.  I enjoy the time I spend with my dogs and cat, and although my heart aches for the interaction, I enjoy watching the daily activities of the horses that surround my home.  I plan to go somewhere at least once a week because this makes me feel like my life is a little more regular.  I struggle to be as normal as I possibly can, with a very *not normal* situation. 

It’s my fault that my family and friends aren’t more aware of how I spend my days as a Migraineur because I could just talk about what I do and how I spend my time, but nobody is asking questions and I don’t feel the need to sit them down and bore them with the details.  I think they don’t ask questions because the reality is that they don’t want to know the answers.  They know I live in pain and that makes them feel uncomfortable.  They don’t know how to talk to me anymore.  Mostly, they are uninterested and busy with their own lives.  That happens with all of us from time to time.

My hubs and kids know how I spend my time because they live (or used to) with me each day.  My kids are Migraineurs too, so they understand from that perspective.  My world became very small when I got sick and that’s okay.  It’s okay that they are the only ones who “get me”  because they are the ones who matter most.  And the most important part of this equation is I am blessed that they DO understand and know me, and I am not alone.

 

~Ellen


Migraine Awareness Month #5: "Do That To Me One More Time."

AwarenessMonth2012BC2Today's prompt for the National Migraine Awareness Month Blog Challenge is:

Migraine Awareness Month #5  What comfort measure do you find helps you enough during a Migraine that you go back to it again and again, and how do you use it?

My go-to comfort item that gets me through Migraine attack after Migraine attack, is my heating pad.

I have often joked that my heating pad needs a name, because I cuddle with it more than my husband.  (Sadly, hubs agrees with me, lol) It goes nearly everywhere with me.

When I asked my doctors why heat is so helpful to me, nobody seems to have an answer.  Since I tend to suffer from inflammation one would think heat might aggravate the situation.  However, when I’m in pain I do tend to find it difficult to argue with success.

Placement of my heating buddy has everything to do with its success. 

In my case, I get a pain trifecta: Migraine (usually my left side) with extreme pain behind my eye, and trigeminal neuralgia that shoots across my face, eyeball and inside my ear like lightning while at the same time throbbing like the worst tooth/face ache you can imagine, radiating down the front of the left side of my neck.

I usually put my heating pad directly onto my face, even putting it over my pillow so I can lay on it, pain side down.  If tension is a problem in my neck, I have the larger sized pad that easily wraps around the back of my head for comfort there as well.

Thankfully it turns off automatically and I have never suffered any burns from it, however I do know of someone in the Migraine community at large that had an old model without the automatic shut off.  She took her meds, fell asleep on it and woke up with 3rd degree burns. 

There are times when even my heating pad isn’t sufficient.  I usually retreat into my hot pounding shower then.  I’m never quite sure if it is the heat itself that is so soothing, or the distraction of the hot pounding water over my bruised body that seems to help.  (Hurts so good?) Again, it’s tough to argue with success.  At the very least, the cooling down process after the shower allows my body to relax and sometimes fall asleep (often with my heating buddy wrapped comfortably around my face and head) when intense pain of an especially brutal attack usually makes rest impossible.

Do you find heat or cold to be more comfortable during an attack?  Do you find that changes from one Migraine attack to another?

What is your favorite comfort item?

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

To help raise awareness about Migraine, please Tweet this post with the hash tags #NMAM and #NMAMBC and share it on your Facebook page. Thank you!

Ellen


Migraine Pearls or Onions? 3/2/11

PearlsOrOnions125 When it comes to online Migraine information, the quality of what we find has quite a wide range. It can be bright, polished, and valuable, or it can be... well, rough and stinky.

This feature, "Migraine Pearls or Onions?," highlights both the Migraine Pearls I come across online and the stinky Migraine Onions.

Today's Migraine Pearl and Onion came about because of a post written by a new member on MyMigraineConnection.com. A mother posted about something a mother should never, ever have to face. Her son took his life because he couldn't deal with daily Migraine pain any longer. He didn't have the coping skills for it. Please, take a few minutes to read about this in Migraines: Never "Nice," Sometimes "Fatal."

If you've ever had daily Migraines and / or headaches, or if you're close to someone who does, you know that while we're working with our doctors to find an effective preventive regimen they can't give us something to take away the pain every day or it makes matters worse by causing medication overuse headache, which - in turn - keeps preventives from working. So, it's a draconian period of time when we can have pain-free time only sometimes. To survive this period of time, we need to have excellent coping skills for living with such chronic conditions. Many of us need help developing and / or maintaining those coping skills.

Pearl100 So, first up...today's Migraine Pearl... today's pearl goes to all of those doctors who recognize that we often need help developing and maintaining coping skills and incorporate that development and maintenance into our treatment. On a personal level, I salute all the doctors at the Jefferson Headache Center in Philadelphia - Dr. Young, Dr. Silberstein, Dr. Nahas, Dr. Tramuta, and the other great doctors there. My first visit to the Jefferson was the first time in more than 35 years of Migraines that anyone had ever even mentioned coping skills or depression to me in relation to the Migraines that I'd had since the age of six. Part of my initial visit there was a session with Dr. Tramuta (a psychiatrist) to evaluate me for depression and to evaluate my coping skills. I went into that session with a hugs chip on my shoulder because of all the times I'd been told that my Migraines were "all in my head." He kindly explained his reasons for seeing me, and knowing he was there for me if I ever needed him was a great comfort. Dr. John Claude Krusz, who currently helps me maintain my Migraine treatment regimen, also makes sure that all of his patients are screened to ensure that they have adequate coping skills and that, if they have depression, it's being treated. Every doctor who treats patients for Migraine should do this.

Onion100 And, today's Migraine Onion. Today's onion goes to all of the doctors who treat Migraine, but never evaluate their patients' coping skills or screen them for depression. Shame on you. Especially to the doctors who told the son of the mother I referred to earlier that he "needed to learn how to live in pain." You, sir, have no business practicing medicine. You are a disgrace to truly caring physicians. I wouldn't actually wish it on you, but you deserve to be in pain and not be able to find anyone who cares enough to help you. You deserve to be told to just "learn to live in pain." Someone should shred your medical license.

If you'd like to make a suggestion for a
Migraine Pearl or a Migraine Onion,
please leave me a comment!

Live well,


 

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© Teri Robert, 2011
Last updated March 2, 2011


New Migraine Site Launched at Migraine.com

MigraineCom175w Migraine disease impacts 37 million people in the United States alone. Migraines can be debilitating, frightening, frustrating, and isolating. The Internet has opened many doors for Migraineurs. We now have more information available than ever before. Still, the need for educational information, support, and advocacy continues, and Internet sites that are accurate and unbiased continues.

Today, a new Migraine site is officially launching at Migraine.com. For a few months now, a team has been working to add content to Migraine.com, and I'm pleased to be one of the patient advocates and bloggers writing for the site. I'm impressed by the knowledge and passion of everyone involved with the site.

On Migraine.com, you can find:

  • Informative articles about Migraine disease, the types of Migraines, Migraine treatments, Migraine Triggers, and more.
  • Blogs by two great Migraine specialists, Dr. Susan Hutchinson and Dr. Dawn Marcus.
  • Blogs by patient advocates and bloggers whom you probably already know:
  • A discussion forum.
  • An "Ask the Experts" section where you can ask your Migraine related questions.
  • A Migraine Symptom Checker
  • A section of Patient Stories where you can read about other people and their Migraines.

The site has an online Migraine Journal with great new features coming for 2011.

To encourage Migraineurs to share their story, one of the first 500 people who register as a member at Migraine.com and write their Patient Story will win an Apple iPad!

One person has already asked me a question that I know more of you will ask - Does my writing on Migraine.com mean I'll stop any of the work on the other sites I write for or own? No. I will be continuing with my other work as well. We Migraineurs need all the good resources we can get!

Come check out Migraine.com soon!

Live well,


 

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© Teri Robert, 2010
Last updated December 21, 2010


Botox for Migraine: Sept., 2010, Update

Botox100 Clinical trials to determine the efficacy of Botox (botulinum toxin type A) for Migraine prevention have been underway for several years. During this time, some doctors have used Botox off-label for their patients. Let's take a look at where things stand now, in September of 2010.

A bit of background: Off-label prescribing or usage of medications is very common. "Off-label" simply means using a medication for a purpose other than those for which the FDA has specifically approved it. Once a medication is approved by the FDA for human use, it's both legal and legitimate for doctors to prescribe it for other conditions when they believe it will be helpful. Migraine preventive medications are a perfect example of off-label prescribing. Of the more than 100 medications in use today, none of them were originally developed for MIgraine treatment. They were all developed for other conditions, then found to work as preventives for some Migraineurs. Four of them were put through the additional clinical trials to win formal FDA approval for Migraine prevention:

  1. propranolol, a beta blocker, brand name Inderal
  2. timolol, a beta blocker, brand name Blocadren
  3. divalproex sodium, a neuronal stabilizing agent (anticonvulsant), brand name Depakote
  4. topiramate, a neuronal stabilizing agent (anticonvulsant), brand name Topamax

What's NOT permitted:

It's legal to prescribe medications off-label, BUT it's not legal for pharmaceutical companies to promote or advertise a medication for any purpose for which it's not FDA approved. That means that Allergan, the manufacturer of Botox, may promote and advertise it for the purposes for which it is already approved - cosmetic purposes, blepharospasm, cervical dystonia, hyperhidrosis, strabismus, and upper limb spasticity. Promoting it for off-label use constitutes what the FDA calls "misbranding," and it's illegal.

Recently, Allergan was in the news when they agreed to pleas guilty and pay a $600 million fine to resolve allegations that they had promoted Botox off-label.

A point that needs to be understood about this is that the issue was NOT about doctors using Botox off=label. It was entirely about allegations that Allergan had promoted it for purposes other than those for which it was FDA approved. So, it has nothing to do with the medication itself, but about marketing and promotion practices.

Good news of progress:

Botox was recently approved in the UK for treating Migraine. In the U.S., the FDA is currently reviewing clinical trial data about Botox and Allergan's application for FDA approval of Botox for Migraine treatment. Many Migraineurs are hopeful that FDA approval will come soon. I've heard from many Migraineurs who would like to have the option for trying Botox for MIgraine prevention, but their insurance companies decline payment, saying that the treatment is "experimental" or "investigational."

If you've been wondering about Botox, you might be interested in reading Allergan's information about Botox History and Development, which includes a time line of when Botox was approved for various uses.

Live well,


 

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© Teri Robert, 2010
Last updated September 13, 2010


New Migraine and Headache Clinical Trials

Cady100 Dr. Roger Cady and his research group have let me know that they have some new Migraine and headache clinical trials that are recruiting participants.

If you live near Springfield, Missouri, you may be interested in some of these trials:

Evaluating the Effectiveness of Early Acute Treatment vs. Preventive Treatment for Migraine

Did you know that 60-80% of migraine sufferers experience signs before a migraine attack that may actually predict the onset of a headache? These signs are referred to as prodrome and may include symptoms such as muscle aches, food cravings, mood changes, decreased or increased energy, difficulties with memory or concentration and even excessive yawning.

If you:

  • Are age 18 or older
  • Experience prodrome symptoms as described above
  • Have never taken Frova® or Topamax® for migraine treatment or prevention
  • Live near Springfield, Missouri

Please consider enrolling in this medical research study. Qualified candidates will receive study related medical evaluations and study medication at no charge plus compensation for time and travel. For more information, please contact call 417-883-7889.

• • • • •

Have you had a mild head injury that has left you with chronic headaches?

Clinvest is conducting a medical research study testing an approved migraine drug to see if it safely and effectively relieves post traumatic headaches.

If you:

  • Are between the ages of 18 and 65
  • Have had a problem with headaches since the injury
  • Have trouble with concentration and memory due to the headaches
  • Live Near Springfield, Missouri

Please consider volunteering for this medical research study. No insurance is necessary because if you qualify and choose to participate you will receive all study related medical evaluations and study drug at no charge. Compensation for time and travel is also provided. For more information, please contact 883-7889.

• • • • •

Help Us Learn More About the Effects of Migraine On Work Productivity

Workers who experience migraines suffer approximately a 50% decrease in work productivity. Help us learn more about how 2 different treatments affect the way you function at work by volunteering for this medical research study.

Please consider participating if you:

  • Are age 18-65
  • Work at least 30 hours each week
  • Are able to complete 1-2 minute hourly assessments from your cell phone when treating 4 headaches at work
  • Routinely treat your headaches with a Triptan or Treximet®
  • Live Near Springfield, Missouri

Study participants will receive compensation for time and travel. For more information, please contact Clinvest at 417-883-7889.

• • • • •

Do You Suffer from Chronic Headaches?

Clinvest is currently recruiting volunteers to participate in a medical research study to see if an investigational drug reduces the number and severity of chronic headaches.

If you:

  • Are age 18-65
  • Experience a headache on 15 or more days each month
  • Are willing to help find a way to manage chronic headaches
  • Live near Springfield, Missouri.

Please consider enrolling in this medical research study. Qualified candidates will receive study related medical evaluations and investigational drug at no charge. Compensation for time and travel is also provided. For more information, please contact Clinvest at 417-883-7889.

• • • • •

New Class of Investigational Migraine Drug Being Tested for Menstrual Headaches

That time of the month can be challenging enough without having to endure a
headache, too.

If you:

  • Are age 18 or older.
  • Have experienced a headache during at least 1 of your last 3 monthly cycles.
  • Live near Springfield, Missouri.

Please consider volunteering for this medical research study. If you qualify and choose to participate you will receive:

  • All study related medical evaluations and investigational drug or placebo (inactive substance) at no charge.
  • Compensation for time and travel.

For more information please contact 417-883-7889.

Live well,


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© Teri Robert, 2010
Last updated August 16, 2010


Help Paying for Migraine Medications and Doctors' Visits

It's a sad commentary on our society as well as the state of the U.S. economy that people are going without their Migraine medications because they can't afford to pay for them. Even worse, it's happening more and more frequently as the U.S. economy is in upheaval. Even those with health insurance are having problems, especially as insurance companies narrow their formularies, raise copayments, and otherwise increase the portion of prescription expenses for which patients are responsible.

image from www.helpforheadaches.com The major pharmaceutical companies have patient assistance programs set up to help people who can't afford their medications. Figuring out these programs can be problematic as the requirements and application process varies from company to company, and the various programs can change over time.

Partnership for Prescription Assistance brings applications for all of those programs together in one place. They also have information on nearly 10,000 free health care clinics and has connected more than a quarter of a million patients with clinics and health care providers in their communities.

Do you need help paying for health care and prescriptions? Do you know someone else who does?

Learn more about the Partnership for Prescription Assistance in this article: Partnership for Prescription Assistance: Helping Those Who Can't  Afford Medications and Health Care.

Live well,


 

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Page copy protected against web site content infringement by Copyscape© Teri Robert, 2010
Last updated June 5, 2010

Migraine News, Tips, and More

Puz-only-btn Do you find it difficult to keep up on Migraine information? My FREE Putting Our Heads Together email newsletter can help!

Delivered to your email weekly, the newsletter includes links to...

  • treatment news;
  • research news;
  • articles about different types of Migraines and headaches;
  • tips for living with Migraines;
  • news and information from Migraine and headache organizations such as the NHF, MRF, and AHS;
  • places to ask questions and get answers;
  • quizzes to test your Migraine and headache knowledge;
  • fun word games;
  • and more!

Putting Our Heads Together is delivered to your inbox on Mondays. When Monday is a holiday, it may be delivered on Tuesday.

I know how hard it can be to look for information, especially when your Migraines or headaches are frequent. That's why this newsletter exists.

Subscribing to Putting Our Heads Together is easy. Just fill in the subscription box to your left; at the top of the left column of this blog.

Live well,

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Page copy protected against web site content infringement by Copyscape© Teri Robert, 2010
Last updated June 1, 2010