Living with Migraine: We Must Stop Stigmatizing Each Other

Living-with-migraineResearch has shown that the stigma associated with Migraine disease adds to the burden of living with Migraine. I'm sure that comes as no surprise to anyone with Migraine. What may come as a surprise to some of you is how often people with Migraine stigmatize each other. 

We're all different

One of the best examples of people with Migraine stigmatizing each other occurs pretty much every time I see an online discussion about Excedrin Migraine or the commercials for Excedrin Migraine. Invariably, someone will say something along the lines of, "If Excedrin works for you, you don't really have Migraines."

Seriously? That's just not true for everyone. The truth is that we're all different, and our Migraines are different. Although Excedrin Migraine isn't any more helpful that breath mints for my Migraines and maybe yours as well, for some people, it's all they need. Some people have only a few Migraines a year, and they're very mild, but they still have Migraine disease and deserve our respect and support.

Another example is people saying that someone can't possibly be at their computers or using their phones to be online when they have a Migraine. Again, that's not true for everyone. Some people do experience photophobia (sensitivity to light) during a Migraine that's so severe that they need to retreat to a dark room. Others don't have that problem and may use the internet as a distraction to keep them occupied while they're waiting for their Migraine medications to work.

Finally, yesterday, I posted an article, Going to the ER for Migraine Is Not the Best Choice, to a Facebook group. In a nutshell, the article says that there are times when we'll all need to go to the ER, BUT it's not the best place for Migraine treatment. It also says that we should have a full treatment plan that includes preventive and abortive treatments as well as rescue treatments to use, when our first-line treatments fail, to try to keep us out of the ER. It also suggests talking with our doctors about when we should go to the ER. The response from some people was absolutely brutal. They said I didn't know what it was really like to live with Chronic Migraine, and said all kinds of other nasty things that I'm not going to repeat. You know what? I had lost my job and was confined to bed by Chronic Migraine before some of those people were born. They misinterpreted what I said, went on the attack, and stigmatized me. With people's emotions running high, I asked the other moderators of the group to handle the issue because I felt people didn't want to hear from me, but the damage was already done. 

Sometimes, as was most likely the case with the article I posted, people are in pain, and they lash out. I get it. Still, would we like others to treat us in that fashion? I don't think so. We sometimes forget that posting to social media carries a responsibility, a responsibility to act in a courteous and civil manner. People are forgetting that. I have my own theory about one reason for that, but that's not our topic today. Here's a thought - If we're in pain or feeling especially vulnerable or emotional, maybe those are times when we shouldn't post to social media. 

The bottom line

The bottom line is that we all want to see the social stigma associated with Migraine disease diminish and disappear. Right? There are advocates who dedicate their careers and lives to that purpose. BUT... It's not going to happen until we stop stigmatizing each other.

Live well,

 because a migraine is NOT "just a headache"
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Join Me for the 2018 Migraine World Summit Beginning April 18

MWSexperts300The World Migraine Summit begins online tomorrow. It's the biggest opportunity to learn about Migraine disease all year. The Migraine World Summit will bring together over 30 top experts, doctors and specialists to share new treatments, research and strategies for Migraine and chronic Headache.

WHY ATTEND?

  1. World-Leading Experts: At the Migraine World Summit, you’ll learn first-hand from over 30 of the world’s top migraine and headache experts, doctors, specialists, from leading institutions including the Mayo Clinic, Harvard Medical School, Cleveland Clinic, Stanford, John Hopkins Hospital, and the International Headache Society.
  2. Full Access: Many of these world-leading experts have long waiting lists and fees that are beyond the affordability of the average insurance policy. Skip the waiting period and get straight into the room with these experts.
  3. Free: The event is entirely free whilst live from April 18-26. Visiting dozens of specialists in one field would take years and costs thousands of dollars. This is an incredible opportunity to hear from dozens of leading experts in migraine for free during the week. After April 26 transcripts and interview copies are available to order.

I'm thrilled to have been asked to be part of this year's Summit. You can see my presentation, They Don’t Get It: Educating Family & Friends on Migraine, on Saturday, April 21.

It's important to get your free ticket NOW by following this link. Once you've requested and received your free ticket, you'll receive an email each day with that day's schedule. 

Information about the event including topics, schedule and speakers can be found at https://www.migraineworldsummit.com/schedule/

Summit presentations commence Wednesday, April 18 at 9.00am Eastern Standard Time (New York). To convert this time into your own time zone visit: http://www.timeanddate.com/worldclock/converter.html

From April 18-26, you will be sent a link each day to watch the speakers.

You will have 24 hours to listen to each day’s program, regardless of your time zone. After 24 hours, those interviews will be replaced by the following day's speakers. This is so that as much content as possible can be included in the Summit without exhausting bandwidth restrictions, slowing speed or having to limit volumes during the week.

If you miss some of the sessions, or if you'd like transcripts and videos of the sessions, they'll be available. For your ticket to attend free, or to check out transcripts and videos, just follow the link below.

Please join me for the
2018 Migraine World Summit!

Live well,

 because a migraine is NOT "just a headache"
Visit MigraineDisease.com

 

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New Migraine Education and Support Site Coming May 1

Post_image250Over the years, I've worked on several sites and blogs about Migraine disease, among them, MigraineDisease.com. Mostly due to lack of time, MigraineDisease.com has never been as good as it could be. Well! That's changing!

On May 1st, 2018, an all new MigraineDisease.com will be launched. I've teamed up with Migraine and headache patient educator and advocate Tammy Rome and her husband Brian to build the ultimate site for education, support, and advocacy/awareness. Here are some things to know about our new site:

  • All of the content on the site will be original content, not content copied from other sites and writers.
  • Every piece of content is reviewed by a UCNS certified Migraine and headache specialist for accuracy.
  • Our experienced patient educators have a total of 300+ continuing education hours in "headache medicine."
  • We have a medical advisory board consisting of practicing physicians and psychologists who specialize in treating patients with Migraine and other headache disorders.
  • We're Migraine and headache patients too. We know what it's like to live with these diseases/disorders.

For 18 years, I've written Migraine and headache content for About.com and the HealthCentral Network. Don't get me wrong — they've been good years, and I continue to write part-time for HealthCentral. But, it's also a dream come true to write for a site where my partners and I will set the editorial direction for the site and make our own decisions about editorial and other issues. 

I've had Migraines since I was six-years-old. Have gone back and forth between episodic and chronic Migraine, with times during which I had a Migraine every day. Tammy has both chronic Migraine and Cluster Headaches. We both feel incredibly fortunate to be able to attend the same continuing education conferences that Migraine and headache specialists attend, to have built a network of colleagues we can call upon for information and explanations, AND to be able to write content that allows other patients to better understand their Migraines and/or headaches and be better prepared to work as treatment partners with your doctors. We'll also be continuing to develop ways to offer you the support you need to retain hope and live better. Finally, MigraineDisease.com will always provide you with awareness and advocacy information so you can participate in those efforts — in simple, quick ways and in more in-depth ways, depending on your circumstances and wishes.

We're working hard to be ready to launch our new site on May 1st. For now, please visit MigraineDisease.com, and sign up for email updates and announcements.

Live well,

 because a migraine is NOT "just a headache"
Visit MigraineDisease.com

 

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Sunday Thoughts on Living with Migraine: Types of Migraine

TulipThoughtsGood afternoon to my extended Migraine and Headache family. I hope the day is being as kind as possible to you and your head. 

Migraine is a complex neurological disease. As you probably already know there are several types of Migraine, and getting a full and accurate diagnosis is critical to Migraine treatment and management. In the various areas of medicine, it's common for professional organizations to work together to define classification systems for diagnosis. In "headache medicine," the gold standard for diagnosing and classifying Migraine and other headache disorders is the International Headache Society's International Classification of Headache Disorders, 3rd Edition (ICHD-3).


TypesOfMigraineI've been seeing a lot of online discussions with people talking about what type of Migraines they have. Unfortunately, all too many of these discussions include types of Migraine that aren't the "standard" diagnoses from ICHD-3. This can happen when doctors aren't experienced with treating Migraine. It can also happen when people have been reading inaccurate online content. 

In any case, I thought it would be helpful to provide you with a list of types of Migraine from ICHD-3:

1.1 Migraine without aura

1.2 Migraine with aura

1.2.1 Migraine with typical aura

1.2.1.1 Typical aura with headache

1.2.1.2 Typical aura without headache

1.2.2 Migraine with brainstem aura

1.2.3 Hemiplegic migraine

1.2.3.1 Familial hemiplegic migraine (FHM)

1.2.3.1.1 Familial hemiplegic migraine type 1

1.2.3.1.2 Familial hemiplegic migraine type 2

1.2.3.1.3 Familial hemiplegic migraine type 3

1.2.3.1.4 Familial hemiplegic migraine, other loci

1.2.3.2 Sporadic hemiplegic migraine

1.2.4 Retinal migraine

1.3 Chronic migraine

1.4 Complications of migraine

1.4.1 Status migrainosus

1.4.2 Persistent aura without infarction

1.4.3 Migrainous infarction

1.4.4 Migraine aura-triggered seizure

1.5 Probable migraine

1.5.1 Probable migraine without aura

1.5.2 Probable migraine with aura

1.6 Episodic syndromes that may be associated with migraine

1.6.1 Recurrent gastrointestinal disturbance

1.6.1.1 Cyclical vomiting syndrome

1.6.1.2 Abdominal migraine

1.6.2 Benign paroxysmal vertigo

1.6.3 Benign paroxysmal torticollis

A1.6.5 Vestiblular migraine

If your diagnosis is simply "Migraine" or "chronic Migraine" it's an incomplete diagnosis. Many of us have more than one type of Migraine. For example, my diagnoses are chronic Migraine, Migraine with aura, and Migraine without aura. What's your diagnosis? If it's an incomplete diagnosis, or if it's a type of Migraine that's not included in the list above, a conversation with your doctor is in order. 

Live well,

 because a migraine is NOT "just a headache"
Visit MigraineDisease.com

 

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Sunday Thoughts on Living with Migraine: Say Migraine, Not Headache

TulipThoughtsGood afternoon and happy Sunday to my extended Migraine and Headache family!

We're always looking for ways to get people to understand Migraine disease and it's impact on us. Myths and misconceptions still abound AND continue to feed the social stigma associated with Migraine.

In the last few weeks, I've had occasion to speak with people who don't have Migraine themselves, but care about the Migraine patient population. In a meeting with about 40 people present, one asked me how we can combat the stigma. It was a moment during which I'd know that question was going to be asked so I'd have had an answer prepared. But I didn't have advance warning, so I shared the first thing that came to mind...

We can help reduce the stigma by removing the phrase, "Migraine headache" from our vocabulary.

MigraineHeadacheAttack

Here's my reasoning:

  • One of the most prevalent and damaging misconceptions about a Migraine is that it's "just a headache." When a great many people hear the phrase, "Migraine headache," they don't truly hear the "Migraine" part. All they hear is, "headache," so they think of a "simple" headache that should respond to Tylenol, Advil, or some other over-the-counter remedy. They're drawing on their own experience, so they're thinking of the mild tension-type headache that about 85% of the population experiences at some time during their lives. 
  • Migraine attacks can and do occur with no headache. When that happens, they're described as "acephalgic" or "silent" Migraines
  • When headache does occur during a Migraine attack, it's only one symptom of the attack.
  • The symptom of headache alone is insufficient for a diagnosis of Migraine. There must be accompanying symptoms.

It's easy to forget how much power words can have, but once we think about it, we can begin to harness that power and use it to our advantage in awareness and advocacy efforts. 

I hope you'll join me in this simple effort that can have enormous impact. When talking about an individual Migraine episode, let's say "Migraine attack." When talking about the condition, let's say "Migraine disease" to help people realize that Migraine is indeed a genetic neurological disease. Once we do this for a while, it becomes habit, and we do it without even thinking about it.

Live well,

 because a migraine is NOT "just a headache"
Visit MigraineDisease.com

 

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 drawing on our inner Ninja to live a full life
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Sunday Thoughts on Living with Migraine: After Awareness Month

TulipThoughtsGood afternoon, and happy Sunday to my extended Migraine and Headache Family!

Migraine and Headache Awareness Month (MHAM) was in June, but the need to raise awareness never ends. Lack of awareness in the general public results in:

  • the perpetuation of myths and misconceptions about Migraine, Cluster Headaches, and other Headache disorders
  • the continuation of the social stigma associated with Headache disorders
  • discomfort and reduced quality of life for people who have Headache disorders

Advocacy-All-Year-300So it's important that we strive to raise awareness all the time, not just during Migraine and Headache Awareness Month.

Since you're reading this, it's a given that you spend some time online. Social media outlets such as Facebook and Twitter are magnificent ways to share information and raise awareness! They're easy to use, and quite a bit can be accomplished with minimal effort. That makes them great tools for those of us whose time and energy are limited by chronic Headache disorders.

One easy way to keep track of awareness and advocacy opportunities is to keep an eye on my Facebook page. I'm constantly posting links to educational articles about Migraine and other Headache disorders, Migraine and Headache treatments, and events such as Headache on the Hill and Migraine and Headache Awareness Month. Simply sharing these links on your Facebook page is a quick and simple way to help raise awareness.

If you're looking for the most recent information about Migraine and other Headache disorders and their treatments as well as support and advocacy and awareness info, check out our HealthCentral Migraine Management group on Facebook.

A don't-miss source of information and support is the American Migraine Foundation's Move Against Migraine campaign. You can check it out on the American Migraine Foundation web site or through the widget below.

There are many ways to raise awareness year-round. I've barely scratched the surface here. If you have ways to raise awareness that you'd like to share, please leave a comment, and tell us about them. 

Live well,

 because a migraine is NOT "just a headache"
Visit MigraineDisease.com

 

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Sunday Thoughts on Living with Migraine: Choosing Civility & Kindness

Migraine-SignGood morning, and happy Sunday to my extended Migraine and Headache family.

Sorrowfully, this week's thoughts on living with Migraine aren't at all pleasant. In fact, they deal with a situation that made me not only extremely sad this past week, but physically ill. The various terrorism attacks around the world have  been really bothering me, as I'm sure they have all of you. The attack in Manchester last week had me crying every time I watched a news broadcast. For months now, another issue that I've found absolutely heartbreaking is the gratuitous public displays of people speaking so rudely and nastily to and about other people. People of power and authority — people who are role models — are employing name-calling and worse when speaking publicly. Instead of being leaders, they're sinking into the muck rather than speaking intelligently and in a manner befitting leaders. This horrible example is being emulated by others, either consciously or subconsciously. It's all been bad enough that I recently told my husband that if we were young newlyweds, I don't think I'd want to bring children into this world.

One way I've dealt with such sadness and grief has been to spend extra time with other Migraine and Headache patients, largely in closed Facebook group that's intended to be a safe place for all of us to share information and support without having to worry about spam and nastiness. I've also been spending some extra time on my own Facebook page, sharing links that I think will be of interest to my Facebook friends, both on Migraine and Headache, and on related issues such as health care.

Whether it's on my Facebook page or in the Migraine management group I own and manage, I don't expect people to always agree. It's not a black-and-white world. Besides, it would be horribly boring if everyone always agreed on everything. Disagreeing and discussing are just fine. That said, being rude and nasty are not fine — either on my Facebook page or in the Migraine Management group. People can disagree with each other and comment about that disagreement with civility and kindness. Whether one responds with civility and kindness or rudeness and nastiness is a choice people make when they write their comments and responses.

Last week, several people chose to respond with rudeness and nastiness both on my Facebook page and in the Migraine group. It was pretty quickly apparent in the Migraine group that part of the problem was members who commented about an article that was posted based on the title, without clicking through and reading the article. Even so, the rudeness and nastiness was an unnecessary choice.

In writing you to implore everyone to stop and think before they post comments and replies, and to choose civility and kindness over rudeness and nastiness. I'm convinced that the increase in this kind of posting is directly related to the increased rudeness and nastiness that we've observing publicly, especially in politics. Still, each of us has a choice in our behavior.

I said earlier that this had made me physically ill this week. It did, and that was enough to make me realize that I needed to do some serious stress management. One of the first things I learned in the college psychology classes I took is that only the person who owns a problem can solve it? I can't solve the problem of the way people talk to and about each other, but I can work toward solving how it impacts me. So, here's how I'm handling it. My Facebook page is just that — MY Facebook page. Any inappropriate comments posted there will be deleted, and the person who posted them will be blocked from my page. In our Migraine management Facebook group, rules have been posted about what is and is not appropriate behavior. Anyone who violates those rules will be removed from the group and banned from coming back. When it comes to the group, I owe that not only to myself, but also to the other members who count on it being a "safe" place.

Are any of you having problems with similar issues? If so, please feel free to comment and share your experiences and/or your suggestions for coping with them.

Live well,

 because a migraine is NOT "just a headache"
Visit MigraineDisease.com

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Matt Harvey Owes People with Migraine an Apology

DiseaseNotExcuseIn case you haven't seen this news, New York Mets player Matt Harvey called in sick from Saturday's game, saying he couldn't play because he had a Migraine.

The events leading up to his calling in sick aren't totally clear, but what is clear is that he was out past curfew Friday night, drinking champagne, vodka, and tequila. Saturday morning, he was out playing golf. For missing Saturday's game, Harvey was suspended for three games, which cost him $84,016.

One report quotes a friend of Harvey's as saying that he did have a Migraine Saturday afternoon, but Harvey didn't mention having one when he publicly apologized for his behavior yesterday. Harvey apologized repeatedly and profusely to his team mates and to Mets fans.

Did Harvey have a Migraine Saturday? I don't know, but if he did, I have to wonder if it was triggered by the partying Friday night, a lack of sleep, and/or the golfing Saturday morning. What I do know is that Mets rules include a curfew the night before a game, and he definitely broke that. I also know that a responsible person with Migraine disease would have been at home getting plenty of rest Friday night and taking care of himself in order to avoid a Migraine and be prepared for the game.

While Harvey apologized to his team mates and Mets fans yesterday, he left out another group of people to whom he should have apologized — people living with Migraine. We live with more than enough social stigma and more than enough doubt when one of us needs to miss work because of a Migraine. Harvey's very public behavior reflects badly on all of us. It's a very public example of someone who used Migraine as an excuse.

Mr. Harvey, Migraine is a disease, NOT an excuse. You owe us a very big, very public apology.

To all of you reading this who have Twitter accounts, please tweet this post, use the hashtag #Migraine, and tag Mr. Harvey. His Twitter ID is @MattHarvey33.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"
Visit MigraineDisease.com


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