Migraine Pearls to Dr. Todd Schwedt and Dr. David Dodick

Migraine-Pearls-OnionsMigraine Pearls are awarded to the "gems" in the Migraine community for valuable, shining content and support... current and accurate information... things of value. Migraine Onions, on the other hand, are awarded to "stinky" things in the Migraine community — old or inaccurate content... things that perpetuate misconceptions and stigma rather than fighting them... worthless products, eBooks, etc... and more.

Today, I want to award some Migraine Pearls and shine a spotlight on Migraine specialists who also engage in Migraine research. It's been my pleasure and honor to meet and get to know some of these doctors over the years, and their dedication is amazing, inspiring, and something for which I'll be eternally grateful. 

These doctors not only treat patients, but go a step further toward helping to address the problems that their patients face by conducting research — AND they must often be successful in finding the funding to support that research before they can conduct it. Some of these ladies and gentlemen have dedicated their entire careers to doing everything they can to improve our lives. Adding research to a doctor's already busy schedule can also mean that they sacrifice family and personal time to spend more time working.

Dr. Todd Schwedt and Dr. David Dodick — both of whom practice "Headache medicine" at the Mayo Clinic's Headache Center in Scottsdale, Arizona — are two such doctors who have recently sought and received funding, and are about to embark on an important study. One of the biggest problems facing some chronic Migraine patients and the doctors who treat them is which treatment strategy to choose for patients who have both chronic Migraine and medication overuse Headache. There are two primary strategies at present, but neither proof nor consensus indicate which strategy is more effective and efficient and less difficult and stressful on patients. Dr. Schwedt put together a comprehensive grant proposal and applied for funding from the Patient Centered Outcomes Research Institute (PCORI). PCORI approved the application and is funding a five-year study titled Determining the Optimal Treatment Strategy for Patients Who Have Chronic Migraine with Medication Overuse with a grant just over $7.7 million.

So, for all they do — for their own patients and everyone with Migraine disease — I award Migraine Pearls to Dr. Todd Schwedt and Dr. David Dodick.

To Dr. Schwedt and Dr. Dodick, thank you so very much!

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Winning Out Over Migraine - Do You Need a New Migratude?

LifeChallengesMigratudeI "meet" many, many people with Migraine disease, both online and in person. There are wonderful opportunities to talk with other Migraineurs, and some of those I've met have become close friends for whom I'm very thankful.

There is, however, a huge mystery that I've encountered. Why are so many Migraineurs passive and seemingly apathetic about advocacy and awareness efforts. Why do so many hesitate to become proactive in their Migraine treatment?

Venting vs. Whining:

We all need to vent about our Migraines sometimes. All of us. To me, venting about our Migraines is letting off steam about the issues we're having with managing our Migraines, with finding treatments that work, with finding a doctor who really understands how to treat Migraine, etc. That said, when a person "vents" over and over again without proactively searching for solutions, to me, that becomes whining. I'll listen to anyone vent as often as they need to IF they're continuing to look for solutions. Sometimes, it seems as if some people wouldn't get off their butts to do something for themselves if their butts were on fire.

Looking Back:

Fifteen years ago, my Migraines were almost daily. They were also severe, and I had no treatments that worked for them. I lost my job because of them. I saw so many doctors in and withing about 150 miles of home that I've lost track of how many I saw. Medications? Tried a slew of them. Was still in bed with the Migraine from hell five or six days a week. I never actively tried to take my life, but there were plenty of nights when I didn't care if I woke the next morning or not. I might still be in that bed today - or worse, I might not be here at all - if I hadn't decided it was time to take charge and get help. Going to the Internet, I soon discovered that neurologists aren't necessarily Migraine specialists. That was a shock!

Then, someone online told me about a great Migraine specialist in Philadelphia. Whoa! Philadelphia is an eight-hour drive from here. Plus, our medical insurance wasn't going to pay all of the charges. My husband and I decided it was what we needed to do. We'd do away with cable TV, keep driving the old car that needed replaced, stop eating out, and do other things to save money for the medical bills. He would talk with his supervisor and arrange to take vacation days so he could take two days off for each of my appointments. In other words, we'd do whatever it took for me to get help.

The long drive, the expenses of gasoline, hotel rooms, and the medical bills not covered by insurance proved to be worth it! In six months, my Migraines were a bit better. Four and one-half years later, I was having only a couple of Migraines a month, and they were treatable.

The Present:

Treatment plans don't work forever. There have been a couple of times when my preventive treatments stopped working, and my Migraines became chronic and debilitating again. Luckily, a Migraine specialist moved to West Virginia, so we can get to his office in only two hours. He won't give up on me, and I won't give up on him OR on myself.

What About You?

TERI-Migratude-300Do you find yourself saying any of these things:

  • I've tried everything.
  • I can't go to a doctor two hours away.
  • I can't go to a specialist because my insurance won't cover it.
  • Nothing works. I'm done trying things.

Now, I'm not saying that nobody should ever say any of those things. However, in the  majority of cases where they've been said to me, the people saying them could have done something had they truly wanted to. Maybe some of these Migraineurs need a new Migratude?

So, What's Going On?

So, what's going on with these Migraineurs? There are so many preventive options that it would take longer than 25 years to give all of them a fair 90-day trial, so it's unlikely that they've truly "tried everything." Yes, it's difficult to travel to a specialist, but in most cases, it can be done. Financial issues are often the most difficult to overcome, but I've seen people say they can't afford to go to a specialist even though even their eight-year-old child has a cell phone, they eat out frequently, they have all the premium cable channels, they buy a new car every two years, they're designer clothing fashion plates, and so on. Seriously, I know these people.

Helping others with Migraine has become my passion because I know how difficult it can be to live with this disease. I understand how debilitating and isolating it can be. What I don't understand is those who whine - vent over and over, all the while doing nothing to help themselves. How can we help these people? I'm at a loss. If anyone knows, please let me know.

How's your Migratude? Think about it and check it. Having a good Migratude is one step toward better Migraine management.

Live well,

PurpleRibbonTiny Teri1
 

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Quick Migraine Confabs - Daily Medications

Lets-Talk2"But I don't want to take daily meds for Migraines." That's a statement I hear on a regular basis. Guess what? I agree! I don't want to take medications every day for Migraine prevention either.

On the other hand, what's the alternative? If you Migraines are infrequent and not very severe, you may not need to take daily meds. For people like me who have very frequent and severe Migraines, the alternative to daily meds is those frequent and severe Migraines.

For those of us with Chronic Migraine, there's a possible alternative to daily meds. Botox (onabotulinumtoxinA) injections, which are usually repeated every 90 days, have been very effective for some Migraineurs. It was also approved by the FDA for the treatment of chronic Migraine, so most insurance companies cover it. For me, Botox treatment has reduced the number of Migraines I get by 66% and has helped in other ways as well, such as being less sensitive to light between Migraines. If you want to see where the Botox injection sites are, see this diagram. Some of us who use Botox still find we need to take a daily oral medication as well. This isn't unusual. It's actually pretty common to need multiple preventives to manage our Migraines as well as possible, but many using Botox find that they now take fewer oral medications.

In the end, it boils down to this: Migraine is a genetic neurological disease for which, at this time, there is no cure. We need to ask ourselves what our reaction would be if we were thinking about daily medications for other diseases such as diabetes or thyroid disease. I think most of us would have a different reaction to daily meds for other diseases. So, it's time that we acknowledge Migraine as a disease that needs to be managed.

Live well,

PurpleRibbonTiny Teri1
 

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© Teri Robert, 2015
Last updated March 29, 2015.

 

 


Aetna and Botox for Chronic Migraine - What a Farce!

StupidityIncompetenceHave I said that I'm thrilled not to have to depends on Aetna to cover my treatment for Chronic Migraine? No? Well, I am truly thrilled that my insurance coverage changed from Aetna to Cigna the first of the year. Back in December, I shared my frustration that Aetna had denied coverage on Botox treatment for me for Chronic Migraine? Why? Essentially, because it was working too well. Since Botox had reduced my Migraine and Headache days to fewer than 15 per month, they had cut off coverage. (See Aetna Denied Botox for my Migraines - What?!) In the end, they paid it, but by the time they did, I was honestly beginning to wonder if anything was worth all the arguing and stress.

Today, I'm writing about a pathetically sad situation another patient is in with dear old Aetna. First, they questioned if the patient met the part of the Chronic Migraine definition that says the Migraines and headaches last at least four hours per day. Mind you that the doctor had charted that the patient had "continuous" Migraine with no breaks. Do you think that means four hours or more? Duh!

Then the doctor and the Aetna rep came to an Aetna requirement for Botox. The patient must have failed at least one preventive from each of three different classifications of medications. She's tried antidepressants, and they failed to help. She's failed two anti-epileptic meds, and they failed. The woman is beyond chronic, and the doctor feels it's time to try Botox. But, oh, no! Aetna insists that she try anti-hypertensives first, regardless of the fact that several of them are contraindicated for her due to other health issues.

Now here's where I just want to scream, "Stupidity and incompetence should be illegal!" Enough is enough. This poor patient has tried preventive medication after preventive medication, but they want her to try more, MOST of which have a might higher potential side effects profile than Botox does.

Anyone who's being honest will admit what's going on here. It's about the $$. Aetna doesn't want to pay for the Botox treatment. SHAME ON THEM?! If they don't want to pay for Botox, they should simply put it in their contracts and not cover it. People whose Migraines are bad enough to need Botox treatment don't need all the useless, idiotic, asinine red-tape run-arounds.

Seriously?! I repeat, stupidity and incompetence should be illegal!

Live well,

PurpleRibbonTiny Teri1
 

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© Teri Robert, 2014
Last updated September 23, 2013.


Don't Tell Me Migraines Don't Kill!

Migraine_Suicide_RosesOne of the most misunderstood and overlooked issues with Migraines is this...

Migraines can and do kill!

I've seen people say, "Yes, I know Migraines can be painful, but come on, a Migraine never killed anyone. There's even a psychologist I know who tells patients that Migraines don't kill because she doesn't want to upset or panic them.

Today, it's time to state the sad truth that Migraines can and do kill. It's not the Migraine attack itself that can kill, but that doesn't make the deaths any less attributable to Migraine disease and Migraine attacks.

Possibly the least direct impact Migraine has on life and death is that it increases the risk of stroke, heart attack, and cardiovascular disease. Greater than 1400 more US women with Migraine with aura die annually from cardiovascular diseases compared to women who do not have Migraine.*

Migraines can also precipitate Migrainous strokes, which can be fatal. I've know this to happen with more than one Migraineur I knew, including a young woman who had a second Migrainous stroke just days before her 21st birthday, and the second one was fatal.

Possibly the saddest and most needless of all, Migraine can and does put people to the point of suicide. Based on a sample of Americans, suicide attempts are three times more likely in individuals with migraine with aura compared to those with no migraine, whether or not major depression is also present.*

This weekend, a bright young woman took her life because she'd lost hope of improvement in her Chronic Migraines. In my book, Migraines killed this young woman. Not a doubt in my mind.

To my fellow Migraineurs - Please, please, please don't ever give up. Keep partnering with your doctor to explore Migraine preventive / management options. If your doctor is out of ideas, I'll work to help you find one who isn't.

To doctors and other health care professionals - Please tell your patients the truth. Think about it this way - If you tell them that Migraine can't kill and they discover that it can, what can that do to their trust in you and other health care professionals?

I don't want to frighten people, but it's important that we recognize that Migraine and it's impact can indeed kill. If we don't admit this and talk about it, how can we work to keep it from happening?

Over the weekend, a 22-year-old young woman took her life because she'd lost hope of her chronic Migraines ever getting better. Migraine disease took this young woman's life. We MUST recognize this issue and endeavor to prevent these tragedies.

* Alliance for Headache Disorders Advocacy. "Fact Sheet." 2010.

Live well,

PurpleRibbonTiny Teri1
 

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© Teri Robert, 2013
Last updated June 10, 2013.


Migraine Research Questionnaire: What Others Think About Your Migraines

QuestionnaireLaptopWhether it's about Migraines or other issues, what others think can influence how we feel and how we think about ourselves.

Researchers in The Netherlands have developed a new tool for measuring the effects of chronic medical conditions on our lives and how other people interact with us. The questionnaire has been used in a rheumatology clinic, and Dr. Dawn Marcus and a colleague want to see how it does with Migraineurs.

How about giving them a hand with their research? Your participation would be greatly appreciated. I've already completed the questionnaire myself.

For more information and a link to the questionnaire, see Research opportunity: What do others think about your Migraines?

Live well,

PurpleRibbonTiny Teri1
 

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© Teri Robert, 2013
Last updated March 4, 2013.


Some People Deserve to Experience a Migraine - Video

WomanBoxingBlack150Good afternoon, my Migraine family and friends! I hope this day finds as many of you as possible free from pain and doing well.

There are more than 37 million of us in the United States alone who have Migraine disease. Many of us really struggle with Migraines. Approximately 3.2 million Americans have chronic Migraines, which means they have a Migraine or headache at least 15 days a month - or more often than not.

For many, many years, I believed and said that I wouldn't wish a Migraine on my worst enemy. Over the years, the unbelievably callous attitudes of people have changed my mind. There ARE people upon whom I'd wish a Migraine.

This afternoon, a Google alert caught my attention and led me to some of those people. The alert led to this video:

As the video went on, did you notice laughter in the background? Did you notice that the guy on the right was laughing so hard he could barely stand? What jerks! Have they ever felt a moment of pain in thier lives?

So, yes, I DO wish a Migraine on the people who created that video. What's more, I wish those who find it funny could experience just one severe Migraine so they'd know what we experience. I'd bet they wouldn't find it so damned funny any longer.

I don't get it. Is the world going to hell in a hand basked as the old expression goes or what? We have innocent people being gunned down in movie theaters and people who are so stupidly self centered that they can't recognize the pain and suffering of others. Obviously, I can't begin to address the problems of the world, but you can bet I'm going to stand up and object when I see such cruelty and stupidity show about Migraine and those who live with it!

To those of you who are working to help others, God bless you! To those of you doing things such as this video -- Look out. Karma's a bitch!

Live well,

PurpleRibbonTiny
 

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© Teri Robert, 2012
Last updated September 2, 2012.


Migraine Awareness Month 29: "More Often than Not."

AwarenessMonth2012BC2Good morning, and welcome to day 29 of National Migraine Awareness Month!

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

Migraine Awareness Month #29: "More Often Than Not."
Today is Chronic Migraine Awareness Day. Think of and share a random act of kindness that you could do for someone with chronic Migraine.

First for anyone who may not understand what chronic Migraine is, let me explain:

As defined in the International Headache Society's International Classification of Headache Disorders, Second Edition (ICHD-II), which is the gold standard for diagnosing and classifying Migraine and other headache disorders, chronic Migraine is Migraine or tension-type headache 15 or more days per month with at least eight of those being Migraine. In other words, people with chronic Migraine are in pain more often than not. Some people actually have a Migraine or headache every day. You can read more about chronic Migraine in Chronic Migraine - What Is It?

Now, on to the challenge. There are several "random" acts I can think of that could be quite helpful to someone with chronic Migraine. For the chronic Migraineur in your life, I'd suggest choosing one that best fits their life:

  • If they live alone, they may get lonely, especially because they may seldom feel like getting out. Give them a call and see if they feel like having a visitor. If they do, offer to bring lunch with you and spend some time with them. As if there are any errands you can run for them before or after your visit. Be sure to ask about what to bring for lunch, not just so you bring something they like, but also to avoid any food that might be Migraine triggers for them.
  • If they have a family, fixing dinner may be an issue for them. Offer to bring a home-cooked meal for them and their family. Again, check to see what foods are good. Pack everything into a basket or box, including disposable plastic plates and utensils so there are no dishes to be washed.
  • Do you have friends with chronic Migraines who have kids? Offer to pick them up from school? During the summer, offer to take the kids for an afternoon or a day.
  • Call a friend with chronic Migraine and just ask how they're doing and what they're doing that day. See if they need anything, want any errands run, or if there's anything at all you can do for them.
  • Call a friend with chronic Migraine and tell them you'd like to learn more about their Migraines and what you, as their friend, can do to help them. It will mean so much to them that you'll be totally amazed!

ChronicMigraineButtonToday is Chronic Migraine Awareness Day! Please take a bit of time today to do something for someone with chronic Migraine. If you've never lived with having that kind of pain more days than not, it's hard to imagine living that way. It's not just the pain and other symptoms. It really wears a person down, saps a person's strength and hope. A small gesture from a friend can go a long way toward restoring that hope.

Live well,

PurpleRibbonTiny
 

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© Teri Robert, 2012
Last updated June 29, 2012.