With the growth of the Internet, social media outlets such as Facebook have become a primary source of support for many people with Migraine disease, especially those of us with Chronic Migraine. There are countless Migraine support groups on Facebook. Thus has been great for so many of us because attending support group meetings in real life often doesn't work well. We're either too ill with a Migraine to attend, or - if we're feeling well - decide we have other things that need to be done while we feel up to doing them.
There are days, however, when I simply shouldn't post on social media, or at the very least, should do so very carefully. Those are days when I'm tired or don't feel well, and I'm... well, to put it politely, cranky. On those days, I'm overly emotional, and I tend to take things too personally. That means I could end up saying the wrong thing to someone, or say the right thing, but say it poorly. Can you relate?
From what I've been observing in some of the Migraine groups on Facebook, I'm not the only person with Migraine who has this problem. Unfortunately, when one person comments on a post in a not very friendly way, things tend to escalate. Then, moderators have to get involved, comments get deleted, and matters can get heated. It's uncomfortable for all involved when this occurs.
I've adopted a habit for social media on days when I'm cranky, and I've put a big note on the bulletin board next to my desk to remind myself. I call it my STEP method. When I'm having a cranky day, and I'm posting to social media, before I hit the button to publish my comment, I:
Edit the comment, if necessary, then
Publish the comment.
Nobody has a good day every day. We all have our "cranky" days, even though we all want to be kind and supportive of others dealing with Migraine disease. If you find yourself in a similar situation on social media, maybe you'll try STEPping with me?
All of us who struggle with Migraine disease know that there's an enormous need for more research into Migraine. Yes, we need more research to find new and better treatments, but there are other types of research we need also. We need more research into the epidemiology and pathophysiology of Migraine, and we need research to answer specific questions about treating Migraine.
The good news is that there's a trial currently enrolling to answer one of the specific questions about treating Migraine. The trial is the Medication Overuse Treatment Strategy (MOTS) Trial. It's designed to answer questions that are very important to people with chronic Migraine. One of the biggest challenges to all of us with chronic Migraine is that using acute medications more than two or three days a week can very easily lead us to another problem, medication overuse headache (MOH).
Before I tell you more about this important study, let's discuss MOH a bit. First, I realize that the name "medication overuse headache" is a problem for some people. Let me assure you that it's just a name. Nobodyassociated with the study is passing judgement or blaming anyone who finds themselves in an MOH situation.
For anyone who isn't familiar with what MOH is or what can cause it, here's more info. The International Headache Society has set diagnostic and classification criteria for MOH that are quite complete in listing which medications can cause MOH in their International Classification of Headache Disorders, 3rd edition (ICHD-3). For a diagnosis of medication overuse headache, a pateint must experience at least 15 days of headache per month, and meet this criteria:
8.2 Medication-overuse headache (MOH)
8.2.1 Ergotamine-overuse headache Overuse defined as ergotamine intake on 10 or more days/month on a regular basis for more than 3 months.
8.2.2 Triptan-overuse headache Overuse defined as triptan intake (any formulation) on 10 or more days/month on a regular basis for more than 3 months.
8.2.3 Analgesic-overuse headache Overuse defined as intake of simple analgesics on 15 or more days/month on a regular basis for more than 3 months.
184.108.40.206 Paracetamol (acetaminophen)-overuse headache Regular intake of paracetamol on 15 days per month for more than 3 months.
220.127.116.11 Acetylsalicylic acid-overuse headache Regular intake of acetylsalicylic acid on 15 days per month for more than 3 months.
18.104.22.168 Other non-steroidal anti-inflammatory drug (NSAID)-overuse headache Regular intake of one or more NSAIDs other than acetylsalicylic acid on 15 days per month for more than 3 months.
8.2.4 Opioid-overuse headache Overuse defined as intake of opioids on 10 or more days/month on a regular basis for more than 3 months.** Comment:** Studies show that patients overusing opioids have the highest relapse rate after withdrawal treatment.
8.2.5 Combination analgesic-overuse headache Overuse defined as intake of simple analgesic medications on 10 or more days/month on a regular basis for more than 3 months.** Note:** The term combination-analgesic is used specifically for formulations combining drugs of two or more classes, each with analgesic effect or acting as adjuvants.
8.2.6 Medication-overuse headache attributed to multiple drug classes not individually overused Regular intake of any combination of ergotamine, triptans, simple analgesics, NSAIDs and/or opioids on a total of 10 days per month for more than 3 months without overuse of any single drug or drug class alone.
As you can see, any acute medication (medication used to treat a Migraine or headache when it occurs) can, if overused, cause MOH. Even alternating the types of acute medications leaves us vulnerable to MOH (see 8.2.6 above).
More about the study:
This video by Dr. David Dodick, one of the primary investigators of the MOTS trial is a good introduction to the study:
The aim of this study is to compare two real-world strategies for treating patients who have chronic migraine with medication overuse, each with evidence for effectiveness:
Transition from the overused acute medication used during migraine attacks to different acute medication (prescribed with parameters to avoid medication overuse) with optimized preventive treatment;
Optimized preventive treatment without transition from the overused acute medication.
Although both of these treatment strategies are commonly used, there's insufficient evidence to know if one of these methods is superior to the other or if they provide similar outcomes.
Patients participating in the study will be randomly assigned to one of two treatment arms matching the two strategies. It's very important to understand that patients who are randomized into the transition arm, will NOT be left without acute treatments. The treatments causing medication overuse will be discontinued, BUT other treatments will be prescribed to take their place.
There are no experimental treatments being used in this study. Participants must be patients at one of the study locations or become patients at one of them so they get consistent treatment from their own physician during the study. Centers participating in the study include Migraine and headache centers, general neurology practices, and family medicine practices. Centers participating in this study include:
Northern Arizona Healthcare Medical Group; Flagstaff, Arizona
Mayo Clinic in Arizona Headache Center; Phoenix, Arizona
Mayo Clinic in Arizona Neurology Center; Phoenix, Arizona
Pinnacle Internal Medicine and Headache Center; Phoenix, Arizona
Mayo Clinic Thunderbird; Scottsdale, Arizona
Orange County Migraine and Headache Center; Irvine, California
Cedars-Sinai Medical Center; Los Angeles, California
University of Colorado Denver Colorado Headache Center; Aurora, Colorado
University of Colorado Denver Primary Center; Denver, Colorado
Mayo Clinic Florida Headache Center; Jacksonville, Florida
University of Utah Primary Care; Salt Lake City, Utah
University of Utah General Neurology; Salt Lake City, Utah
University of Utah Headache Center; Salt Lake City, Utah
Medical College of Wisconsin; Milwaukee, Wisconsin
The primary investigators for the MOTS trial are Dr. Todd Schwedt and Dr. David Dodick, both at the Mayo Clinic Headache Center in Arizona. I'm honored to be their co-investigator for this trial, my first venture into research. The study is funded by the Patient Centered Outcomes Research Institute (PCORI).
If you have chronic Migraine and medication overuse, I hope you'll consider being part of this important study. It's an opportunity to address your Migraine treatment AND to help answer this important question that so many of us face.
For more information:
Visit the MOTS Trial web site.
Check out the MOTS Trial Facebook page.
Follow @MOTSTrial on Twitter.
Click the "Email Me" button to the right or at the bottom of this page, depending on how you're viewing this post, to send me an email.
Migraine 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!
I "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 IFthey'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.
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.
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 ORon myself.
What About You?
Do 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.
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AHMA Is H.O.P.E.
A Headache and Migraine Organization for Patient Empowerment
"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.
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Have 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!
One 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.
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Whether 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.