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,
Thoughts on Living with Migraine: No Excuse for Poor Behavior
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"
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