Devices for Migraine Treatment - Attention Device Manufacturers

People with Migraine disease and other headache disorders are constantly searching for new and more effective treatments to add to our tool box. Recent years have seen more devices developed and introduced to the market. One device is even FDA approved for use by adolescents age 12 and above. When I talk to fellow Migraine patients, many tell me their doctors have never mentioned any of these devices. When talking with people who work in developing these devices, some express frustration that so many doctors prescribe medications only and don't recommend devices.

Personally, I've tried some of these devices, both for preventive and acute Migraine treatment. One of them has proven to be the best Migraine treatment I've ever had, both for prevention and for aborting Migraine attacks. Here are some of the things I love about it:

• It doesn't have the list of potential side effects that most medications carry.
• It's considered safe for people like me who are heart attack survivors.
• It can be used as often as needed for acute treatment without the risk of medication overuse headache.
• Using one treatment for both preventive and acute use is wonderfully convenient.

Unfortunately, I'm not going to be able to continue to use that device. 

I hit Medicare age in June of 2019. Before that, my insurance reimbursed me 60% of the cost of the device rental. Now, I have NO coverage to help pay for the device because it's not covered by Medicare. When I contacted Medicare, they told me that they won't consider it because the manufacturer has never submitted information to them to request their approval. When I tried to get it covered by my Medicare supplement plan, they "reminded" me that they're a supplement plan; they don't replace Medicare.

The Medicare issue is what I want to bring to everyone's attention, especially the attention of the companies that develop and manufacture these devices. Not working toward Medicare coverage of your devices is a mistake, a BIG mistake, for multiple reasons:

• You're missing out on some of the Migraine patients who may need your devices most - patients who have had to turn to Social Security disability benefits. Whenever there's news of a new device that could potentially help there patients, their response is one of disappointment and sadness rather than excitement and hope. That's because they know it's unlikely that they'll even be able to try them.
• Commercial insurance companies often take their cues on what to cover based on what Medicare does and does not cover.
• It's frustrating to doctors and patients alike when they can't get coverage for a promising new treatment.
• All of the above make it less likely that doctors will jump on the bandwagon OR that patients in my situation will recommend a device to others, even if it has been effective for them.

I recently got one of the disposable devices for acute Migraine treatment. It's one of those you use for a certain number of sessions, then throw it away and get a new one. It has worked well so far. Will I be able to continue to use it? I'm not sure. It's new, and I have no idea if Medicare is going to cover it. 

The situation I find myself in as this:

• I love the device I've been using for both prevention and acute treatment. That said, I need to use treatments that are covered by Medicare or my Medicare Part D prescription drug plan.
• My Migraine frequency has increased from an average of one Migraine attack per month to six.
• If the frequency keeps increasing, I'm going to have to go back to finding effective preventive medication.
• As someone who has had a heart attack, I really shouldn't use triptans, BUT I need to abort my attacks quickly because they send my blood pressure into stroke range, and it stays there through the Migraine attack. Thus, I feel a dose of triptan is less risky than the spiked blood pressure.
• I'm loving the new acute device. Whether I'll be able to continue to use it depends on whether it gets covered by Medicare.

Admittedly, as a Migraine patient, I'm angry about this situation. As a patient advocate, I'm angry and frustrated.

To my fellow patients: I hate this situation we're in. That's why I'm speaking out. If you're in a similar situation, please feel free to leave a comment below and share with us.

To the device manufacturers: I'm very disappointed. There's really no room to complain that doctors aren't getting into the habit of recommending devices until and unless we get to a point where they're covered by Medicare.

Live well,

Living with Migraine: Shame on United Airlines

As if it's not difficult enough for people with Migraine disease to travel, United Airlines has stigmatized, inconvenienced, and just plain mistreated a Migraine one of us. 

On Christmas Day, Sunny Intwala reported on Facebook:

"This morning, I was treated horribly on UA flight 1976 from Phoenix to Newark. I was having a terrible migraine and experiencing nausea and got up to use the bathroom, but the flight attendant was extremely rude to me and wouldn’t let me use the First Class bathroom even though it was visibly unoccupied and we were sitting in First Class - Instead, she told me to go use the Economy bathrooms, which were occupied. I had no choice but to use a paper bag. Instead of asking if I was okay, the flight attendant demanded I get off the plane right away..."

Here's the Facebook post:

United uses the slogan you can see in the image above:

"The United difference
Connecting people. Uniting the world."

Seriously? Actions speak louder than words, and the United employee who first insisted that a First Class passenger use the economy restroom, then demanded that he leave the plane because he was ill with a Migraine attack certainly makes that slogan appear to be a total fabrication. 

The question now is whether United will respond and take any action. More than 39 million people live with Migraine disease in the United States alone. Is this how United employees are trained to treat people with potentially debilitating neurological diseases? I've flown United many times, and — until now — they were my preferred airline. If and how they respond to this atrocity will determine whether I continue to fly United.

The actions I'm taking:

• Write and publish this blog post.
• Share this post on Facebook, including on United's Facebook page.
• Send a message to United through their Facebook page.
• Tweet the URL to this post. (@TRobert)
• Tag United on Twitter. (@United)

Will you join me?

If those of us living with Migraine disease don't stand up for ourselves and for each other, we really can't expect others to do so. Will you join me in asking United to step up to the plate and address this shameful incident? Please join me by:

• Sharing the link to this post with your friends.
• Share this post from my Facebook page.
• Comment on United's Facebook page and send them a message from their page.
• Retweet the link to this post from Twitter.

Live well,

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

 

 drawing on our inner Ninja to live a full life
Visit Migraine.Ninja

Thoughts on Living with Migraine: No Excuse for Poor Behavior

Greetings, everyone! I hope your heads are being as kind as possible to you today.

Perhaps it's due to getting older, or perhaps it's because the death of my husband last year has changed my priorities, but for whatever reason, I'm increasingly having problems with the way people "talk" and behave online.

I've observed conversations becoming increasingly petty, argumentative, profane, and even violent. People who have been friends (at least on Facebook) have been saying horrible things to and about each other instead of having the productive conversations that I used to see. I used to see people "agree to disagree" on certain topics, debate that topic, and remain friends. These days, it seems there are no limits to how nasty or personal the comments are, and the flaming goes on and on.

Some personal Facebook pages have turned into battle grounds. In the days leading up to Kavanaugh being confirmed to the Supreme Court, my own Facebook page got totally out of control for a few days. I shared a Facebook post that expressed the sentiment that lifetime appointment to the Supreme Court is so important that any allegations against Kavanaugh should be investigated. It didn't say he was guilty or that he was a bad man. It was simply pointing out the importance of a lifetime appointment. It said nothing about either the Democratic or Republican party (alphabetical order here). A woman who had been a Facebook friend of mine was instantly very, very angry. She asked if I'm a "liberal." I had to think about that one because I look at people and issues, not parties or sides. I ended up telling her, "I'm not a liberal or a conservative; a Democrat or Republican. I'm an American." People really started going at it on my FB page, being so very nasty with each other that I ended up stepping in and telling them to cut it out. In addition, I deleted the nastiest comments because they had no place on my Facebook page. Most of my Facebook friends became my friends because they have Migraine and follow my work. A colleague suggested that maybe some of the objectionable comments were written when people were in the middle of a Migraine attack. Well... maybe, but that's really no excuse for being downright nasty and disrespectful.

Sadly, I'm seeing a great deal of disrespect and anger even in Facebook groups meant to offer support and information to people with chronic diseases. I belong to and moderate some groups for people with Migraine disease and other Headache disorders. In one of them, a woman came to the group asking for advice in handling a difficult situation with her son's Migraine attacks and his school. Now, this is a topic where all the members should have come together to offer her constructive and productive advice, right? Many people did just that, encouraging the young mother and providing her with links to resources that could help her resolve the situation. Many of us were angry on her and her son's behalf. That's quite "normal" and natural, and that anger could have been channelled into support and advice. Unfortunately, some group members resorted to profanity and suggestions of violence against the school principal and others. Both of those behaviors are violations of the group's policies and guidelines, which everyone agrees to read and abide by when they join the group. Moderators removed the inappropriate comments. By the next day, more profane and violent comments had been posted. As a result, those comments were removed, AND the thread was closed to further comments. This meant that support and advice for the mother who started with the original post were cut off. It also meant that the moderators had to spend valuable time "policing" and "babysitting," when that time could have been better spent offering support and encouragement and posting links to valuable information for group members. Again, it's possible that the people who posted the inappropriate comments were in the middle of a Migraine attack or headache, but that's no excuse for the behavior. The group members are adults, they're informed of the policies and guidelines, and they shouldn't need babysitting.

The bottom line here is that Migraine isn't an excuse for poor behavior. Migraine can indeed affect our mood, making us feel cranky or even angry during attacks because of the fluctuation of neurotransmitters such as serotonin, norepinephrine, and dopamine. So, when we're feeling like that, the responsible course of action is to either not post and comment online, or to do so very carefully. This isn't a new situation. In June, I blogged, Living with Migraine: Sometimes We Need to STEP. 

I don't know if my reaction to this issue is influenced by age or by losing John last year. I do know that I no longer have any tolerance for this type of behavior. Live is just too short, and nobody needs the stress. As adults, we should be able to have a conversation in which we disagree with someone, but remain polite and respectful. Adults should be able to read and adhere to the rules of social groups such as Facebook groups without someone having to police comments, then take abuse from people who don't like the rules. If they don't like the rules, they're welcome to leave the group and find one with rules they can follow.

Freedom of speech is a vital constitutional right in this country. That said, it's not to much to expect common courtesy and mutual respect. It's not too much to expect adults to act as adults, accountable for their behavior. 

Please consider this as well — There is such a huge social stigma associated with Migraine disease. It doesn't help when people with Migraine are rude and behave poorly. It only serves to perpetuate and even build the stigma.

This post may offend some people. So be it. If someone is offended by my speaking out about unnecessarily rude behavior, they're probably not someone I need as a friend. 

Live well,

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

 

 drawing on our inner Ninja to live a full life
Visit Migraine.Ninja

Living with Migraine: Sometimes, We Need to STEP

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:

Stop

Think

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?

For an interesting look at the issue of taking things personally, please see Migraine Agreement #2: Don’t Take Migraine Messages Personally.

Live well,

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

 

 drawing on our inner Ninja to live a full life
Visit Migraine.Ninja

National Migraine and Headache Awareness Month Begins Tomorrow

June is National Migraine and Headache Awareness Month, and there are a number of easy ways in which everyone can participate. Below are just two of the ways you can participate this year. 

Break the Silence

Help the National Headache Foundation break the silence for the millions who suffer from Migraine and Headache by sharing your story! June is Migraine and Headache Awareness Month, and this year, the NHF is collecting stories from around the world at the newly launched headachestory.com.

Anyone can submit a story through headachestory.com, either through words or video. The goal is to empower Migraine and Headache sufferers by showing them that they are not alone. Not only that, increasing awareness of the disease will lead to further research and treatments.

Join the Social Media Challenge

MigraineDisease.com is kicking off National Migraine and Headache Awareness Month with the 2018 #MHAM Social Media Challenge. This year’s theme is “You Are #NotAlone – Partnering for Better Migraine and Headache Care.” 

As in previous years, there are plenty of opportunities to spread awareness through blogging, tweeting, or posting on just about any social media platform. Each morning, we’ll post a new challenge on MigraineDisease.com. We’ve streamlined the process to make it easier for everyone.

There are three ways to participate:

1. Quick and Easy
   Click on the icon for your favorite social media platform to share each day’s post.  A window will pop up, giving you the opportunity to add your own unique comments before posting to your choice of platforms.
2. A Little Effort
   Write a brief response to the day’s challenge in the comments section at the end of our daily posts. Take minute to tell us what excites you the most about the 2018 #MHAM Social Media Challenge. Just enter your comments below.
3. A True Challenge
   The more ambitious in our community may choose to write a blog post in response to the Challenge. When it’s published, don’t forget to share the link as a comment to that day’s challenges so we can promote you, too.

It’s all up to you. Participate as much as you want, on as many days as you are able. There’s no penalty for skipping days. Self-care comes FIRST, especially during the 2018 #MHAM Social Media Challenge. If you'd like to receive an email with each day's challenge, you can register for that HERE.

These are just two of the activities for National Migraine and Headache Awareness Month. I hope you'll participate as much as you're able to. We can all stand to be reminded that You Are Not Alone!

Live well,

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

 

 drawing on our inner Ninja to live a full life
Visit Migraine.Ninja

Living with Migraine: We Must Stop Stigmatizing Each Other

Research 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"
Visit MigraineDisease.com

 

 drawing on our inner Ninja to live a full life
Visit Migraine.Ninja

Join Me for the 2018 Migraine World Summit Beginning April 18

The 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

 

 drawing on our inner Ninja to live a full life
Visit Migraine.Ninja

New Migraine Education and Support Site Coming May 1

Over 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

 

 drawing on our inner Ninja to live a full life
Visit Migraine.Ninja