Devices for Migraine Treatment - Attention Device Manufacturers

AttentionPeople 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,


Migraine Medication Detox, Week Two: Transition Period - The Daily Headache

Worth-a-lookMedication overuse headache (MOH) is very real and can be an enormous problem for people with Migraine. MOH can occur when we use acute medications - those taken to treat a Migraine attack when it occurs - too frequently. Please note that I'm not saying abuse or misuse, but overuse. It's not a criticism of patients at all, nor is it blaming patients. Kerrie Smyres is sharing her experience with "detoxing" on her blog, The Daily Headache. These are great posts and well worth a look!

 

“This too shall pass.” Those words provide immense comfort when my migraine attacks are severe and disabling. They have carried me through many difficult years. As encouraging as this phrase can be, there’s a flipside to it: the difficult, trying times in life pass, but so do the pleasurable ones we never want to end. “This too shall pass” means that everything passes.
When I had migraine attacks last Sunday and Monday after having a remarkable few days, I was too busy panicking to remind myself that they would pass. My mind churned on my most fear-filled thoughts: What if my new treatment isn’t working? What if it’s making me feel worse? What if I will never again feel as good as I did these last few days?

via www.thedailyheadache.com

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Cefaly II for Migraine Prevention - Additional Info

CefalyIIYesterday, I told you about the new Cefaly II that's now available in the United States for Migraine prevention. People in the UK and Canada wondered if and when it would be available to them. So, I asked for additional information. The Cefaly II will be available in Europe (including the UK) in September. I don't have an availability date for Canada yet, but will let you know when I did.

There's also additional information for people in the U.S. who already have the Cefaly I. People with the Cefaly I can order the Cefaly II without getting a new prescription. Your original prescription will be honored for the Cefaly II. Also, you will receive two sets of three electrodes at no additional charge.

I hope the additional information is helpful. If you missed my original post about the launch of the Cefaly II, just follow this link — New Cefaly II Launched for Migraine Prevention.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Hope Is Necessary When Living with Migraine - A Video

MigraineHopeIf you have Migraine disease, nobody has to tell you how hard it is to live with it. You live it... you know it.

Many things are necessities for living with Migraine — good medical care, a strong support system, and many more. When listing those necessities, there's one that's too often overlooked — Hope.

Hope is necessary for several reasons:

  • If we don't have hope when trying new treatments, we could start them with the negative attitude that they aren't going to work. When that happens, self-fulfilling prophecy or the nocebo effect can kick in with our minds overruling our bodies and keeping the treatments from working.
  • Hope helps us with the coping skills we need to live with Migraine.
  • When hope is lost, everything else may be lost as well. We've seen to many Migraineurs lose all hope and take their own lives.

I've put together quite a few images with quotes and sayings about hope. Following a suggestion from a friend, I gathered them into a video and added some soothing music, Pachelbel's Canon in D. I hope you find it soothing and hope-inspiring.

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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Migraine Cures - Even Some "Doctors" Make False Claims

NoCureMigraineDocMigraine is a genetic neurological disease for which, at this time, there is NO CURE. Sadly, that doesn't prevent people who lack ethics, scruples, and common decency from proclaiming that they can cure our Migraines. Even worse, some of those people have medical licenses. I won't refer to them as doctors, despite their being licensed, because that would be an insult to truly wonderful doctors.

Here's an example of what one "doctor" has Tweeted in the last few days:

  • "One more migraine headaches cured. Happy."
  • "we treat almost 98% cure migraine any severity with one treatment session. Children and adult the same way."
  • "Let spread the word for curing migraine. All ages welcome."

When I replied to those Tweets, challenging the promise of a cure, this "doctor" called me a "fanatic" and made excuses such as, "If you do not have access to it. It does not mean it does not exist. Personal worlds are small." When I said to prove it by providing data from double-blind, placebo-controlled trials, I received no response.

Interestingly, someone else on Twitter decided to do a bit of research on this "doctor" and Tweeted an image of a complaint filed against this "doctor" before the Medical Board of California. I also did a bit of investigating. Here's a bit of what I found:

Sanction-Info

I've blocked out the identifiable parts of the image above because I'm not sharing it to get into a battle with that individual. Still, I think you can get a better idea of what's going on when you can see it yourself as opposed to my describing it to you.

The bottom line here is that we simply can't trust anyone who claims to be able to cure us of our Migraines.

In today's world of speedy communication, if someone did develop a cure for Migraine, we would know it. It would be all over television, radio, print media, and the Internet. Personally, I'd be overjoyed and sharing the good news with everyone I could in every way I could.

So, no matter who it is who's making the claim of a Migraine cure, it's simply not true. Please don't waste your time, money, or hope on those claims. Instead, aim your hope at partnering with a doctor who understands Migraine, treats you respectfully as a treatment partner, and isn't going to give up on you; all of the treatments we have; and on the promising treatments in development and clinical trials.

Live well,

PurpleRibbonTiny Teri1
 

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AHMALogoFinal200AHMA Is H.O.P.E.

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Make a difference... Donate to the 36 Million Migraine Campaign!

 

Page copy protected against web site content infringement by Copyscape© Teri Robert, 2015Last updated July 22, 2015.


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.