• Home
• About
• Products/Services
• Blog
• Resources
• Contact

Archive for the ‘Advocacy’ Category

Migraine Meet up in Real Life

June 14th, 2011

Some of my dear bestest buddies from the forum over at My Migraine Connection were over at my house on Sunday, for reals! It was so wonderful having MaxJerz (and her Mom) and KatintheCorner in my own space. MJ was back visiting my state, where she grew up, after being gone for five years; she came up with the idea. Kat came down from her corner of the state and I picked her up from the train. We were sorry the timing was such that EG couldn’t join us from yet another direction. I also wish we’d thought to take a picture. My old standby heads-together statue will have to serve. I love this photo, though, it makes me think of Migraine sufferers helping each other - putting our heads together.

I always feel super responsible when I host something, and of course I was feeling responsible for our weather - it had been super hot, then thunderstormy, and I worried about everyone’s heads. Why do I think I’m responsible for the weather? The day itself was humid but not too hot, and overcast. All our heads held up well enough. Beforehand of course I cleaned myself half dead (and give credit where due - my Danny man did the same), but was worrying about all the things we hadn’t gotten to.

Everyone was so easy and natural it wasn’t too hard to give up my obsession to make things perfect and just enjoy being in their presence. It’s an amazing thing to meet people you know intimately, but have never been with before. It’s fun to just experience the way people move, their gestures, their voices, when your contact so far has been in words and pictures. And to give real hugs where you’ve sent lots of virtual ones before. People are great in three dimensions! It’s fun to be three dimensional too- to tell my funny stories and ham it up the way I like to. Can you all tell from this blog that I’m pretty goofy? (Yes, intelligent, well-informed, authoritative, but goofy.)

It was a quick visit, but a great one. I’ve gotten to meet lots of great Migraine buddies lately - been meaning to blog about the Migraine focus group I was in for the past month - I promise I’ll get to it soon. It’s a funny thing; it’s not that Migraine sufferers are all that unusual - we’re about 12% of the population. Even those who are or have been chronic Migraine sufferers aren’t that unusual, though we’re a minority of the Migraineur population. But those who are active on-line, are advocates, are seeking help and to help one another, we’re not your common or garden-variety. It’s an honor to be part of this community, and a pleasure to have you all in my own living room.

- Megan

Tags: Migraine activists, Migraine sufferers, migraineurs, on-line activisim, patient advocates
Posted in Advocacy, Weblogs | Comments (146)

Botox News: Can I do Migraine Education without Getting Nasty?

October 21st, 2010

Have you heard the news? Botox has been approved by the FDA for treatment of chronic Migraine. I first heard it from Diana Lee at Somebody Heal Me, but it’s been in the press this past week. This is great news for many chronic Migraineurs. Health insurers who have been refusing to pay for the highly expensive treatment will now lose the excuse that it is not a standard, accepted treatment. The FDA approval probably doesn’t guarantee they will cover it, but makes it much more likely. Like most Migraine treatments, Botox doesn’t work for everyone. As I understand it, for some Migraineurs, the injections into specific points in their heads and necks paralyze muscles that otherwise would contribute to the triggering of Migraines. With FDA approval, the treatments will be available for a much larger group of sufferers.

I guess some jokes are inevitable. Just for the record, the injections are highly unlikely to be into the same spots in your face that would plump up wrinkles, unless you just happen to have a wrinkle on one of those trigger points. Sorry. But I just ran across someone joking about it, and it got my goat.

A friend of mine who is a M.D. and has a great understanding about Migraine, has been very supportive of me, and also happens to work in a company that manufacturers dermatological products (so you could see she has some professional interest in the topic) posted a link on Facebook to the FDA approval of Botox. I commented that it was great news. Another friend of hers (who I don’t know) commented after me, saying “suddenly, I feel a headache coming on. sign me up!” Okay, I don’t know if this woman is a Migraineur or not and I don’t want to go off half-cocked, but it put me on slow burn. First I kind of shrugged, then read it again and was annoyed and gradually I’m getting that agitated feeling in my stomach… that could lead to a Migraine, among other things.

I’m trying to get at my feelings. The implication that I read there is that it’s a joke that you could get Botox for a “headache,” that people should fake headaches in order to get cosmetic Botox treatments. It trivializes our condition, maybe completely unknowingly, but even so. I was inclined to let it go so as to not drum up trouble, but if I don’t take on an opportunity to educate, I’m not being true to myself.  So I’m going to answer her. If you’re reading this post on Facebook, I already have.

Of course I’d love to really let loose, but I want to educate, not alienate, so here’s what I’m saying:

Migraine disease is a serious neurological illness which is one of the top 20 most disabling conditions world-wide. Chronic Migraine sufferers have Migraines 15 or more days per month. For some of us, Botox helps prevent or lessen the impact of some of the Migraine attacks. The Botox is not injected in places that would help anyone with their wrinkles. It may be surprising, or sound strange, but it’s not a joking matter. I don’t think you intended to offend, but please understand that your comment trivializes a very real disease suffered by 36 million people in the USA alone.

What do you think? Am I doing right by our cause?

- Megan

Tags: Botox, Botox for Migraine, chronic migraine, migraine advocacy, Migraine disease, Migraine education
Posted in Advocacy, Communicating, Current Affairs, Medicine, Rant | Comments (66)

Speaking to Pharma Marketers

October 16th, 2010

On Thursday of this week I had a great opportunity. I was invited by Jack Barrette of WEGO Health to be on a panel presenting Health Activists’ perspectives to pharmaceutical marketers. The conference was called the Multi-Channel Pharma Marketing Event, and participants were hearing about how to market in a new world of informed medical consumers, health activists, and social media. My fellow panelist was Allison Blass, of Lemonade Life, a diabetes blogger and activist.

So here’s what I think about Migraine and pharmaceutical companies, what I went into this conference with. First of all, pharma companies want to sell their drugs, because that’s what they do, and how they make their profits. So marketers are looking for new and better ways to… that’s right, market their products. Do their companies make too much profit? Are drugs too expensive? Well it is very expensive to develop new products, and takes years and years. I understand this. The fact that insurance companies are run on a profit motive is a harder one for me to take - their motive will never make them want to give us all we need to treat our disease, and the fact that we have uninsured people, and no universal, single-payer system, so some people can’t afford meds at all, and others are at the mercy of insurance companies that ration meds, those are the real crimes. Don’t even get me started!

So how much should pharma companies profit? I don’t know. I don’t know whether they make more profit than say, banks and financial companies. I do know they make something we need, and our system runs on profit. And here’s where the Migraine angle comes in - they don’t make enough of what we need, the basic research hasn’t been done yet, they haven’t developed the drugs, we haven’t had a real new innovation since the triptans, and we need better products to prevent and treat Migraines. Desperately! You with me so far?  What we really need is a cure, as Allison said, so ultimately the pharma companies should be in the business of putting themselves out of business. Because it’s the right thing to do.

In the meantime pharma companies want to get involved in social media, because that’s where not only consumers but opinion leaders are. I asked a number of you on Facebook to tell me what I should say to them, and there was a fair degree of skepticism about their motives. It seemed to me the people I met were decent, committed people, who are selling things they believe in.  As one told me, he’d rather be selling drugs that help people then a lot of other things.

Anyway, Jack asked us to speak on what the rules of the road are, and what we would do if we had 10 million dollars to spend in our health communities. Allison and I expressed things in different ways but came up with a number of very similar ideas. I said, Rules of the Road: you have the power to educate, use it wisely and well.  Don’t try to sell something like Excedrin Migraine as if it were a one-size fits all solution, a cure, and fail to disclose that 1. it doesn’t abort your Migraine, only covers up the pain; 2. it won’t kill the pain for many of us; and 3. it carries a substantial risk of Medication Overuse (rebound) Headache if used more than a couple of days in a row, or a couple of days a week. It was easy to pick on Excedrin Migraine because so many of us Migraineurs love to hate their ads!

As for the Imaginary 10 million, how about spending most of it to get the basic research about this disease done? Support Alliance for Headache Disorders Advocacy and Migraine Research Foundation. Then if they want to spend some money on line supporting our community, sponsor patient education, Migraine diaries, information about a whole life approach to managing Migraine (an approach that pharmaceuticals are only one part of).  Let some more of us who are committed to helping people with this disease become professionals at it by supporting our efforts with paid positions. Life costs money (as Allison said) and people with the passion to help should be able to make a living at it. And if you support and sponsor what our community needs, and are known as good guys, we will be more eager for your products when they are finally developed, and more likely to continue using your products over time, if they do their job.

The audience was great, asked terrific questions, and it was a great experience. Kudos to Jack who had me really get present again to what I am doing and why. As you may know if you read my sparse postings lately, I have been working a demanding day job as an attorney and mediator, and haven’t found much time to be on line lately. Well, I’m lit up and raring to go, so expect to hear some more from me.

- Megan

Tags: Alliance for Headache Disorders Advocacy, migraine, Migraine research, Migraine Research Foundation, Multi-Channel Pharma Marketing Event, pharmaceuticals, WEGO Health
Posted in Advocacy, Medicine | Comments (146)

Blue Tuesdays

April 20th, 2010

On Tuesdays there are staff meetings at my new office, at 8:30 a.m. That may not be ridiculously early, but it means I have to be up at 7 and racing through my morning to get there on time. The nortriptyline I take as a Migraine preventive makes me good and sleepy, and it’s hard to wake up and move on less than 9 hours of sleep. Today I not only had to be awake but to give a little presentation at the meeting on using Facebook and Twitter for business. I am relearning some things I used to know, like how to get up and go even when I don’t feel up to it. How to push myself through times when my focus isn’t there, or I’m a bit fatigued, or to work with a triptan in my system.

Don’t get me wrong, this new job wouldn’t even be happening if my Migraine prevention regimen weren’t working quite well. My Migraines went down by about 60% in the months before I started the job. The challenges of the work routine have them back up a little again, but it’s still significant progress. If I had tried to take on the challenges of this job a year ago, I doubt I could have done it.

I also work an 8 1/2 hour day on Tuesdays and Thursdays because Monday and Friday are my short days and Wednesdays are a day off. That’s just the way we worked out for me to work a 25 hour week. It makes those long days challenging, though. If I don’t sleep well the night before (like last night) and I still go put in a full day, it can lead to an evening Migraine. Right now I am lying down with the laptop, writing to you all after dinner, with a bit of a headache. Trying to see if I can contain it by resting. That works sometimes.

One of the difficulties for me is that I can’t seem to go to sleep and get up at the same time every day the way my Migraine brain demands. I need plenty of sleep, and if I went to bed early enough to make the Tuesday wake-up hour my standard, I’d never get to see my teenage kids or night-owl husband. I’d be best off if I could take a nap to even things out, I think, but short of napping in my car that’s not an option right now.

All in all, I am very grateful to have a job, to be doing professional work and helping people, to be getting some respect and recognition, and earning a living. I am grateful that I still have Wednesdays to keep working at my Migraine coaching. I had forgotten, as a self-employed person for many years, how satisfying it is to leave at the end of a work-day, knowing I had filled the day with doing my best, and that I am done for the day. I am enjoying my evenings more, and allowing myself to relax. Except that these Tuesdays are hitting me hard!

- Megan

Sleepy law student image courtesy of umjanedoan.

Tags: Migraine coaching, Migraine preventive medication, part-time work, sleep hygiene, triptans
Posted in Advocacy, Managing, Musings, Weblogs | Comments (0)

Support the Future of Headache Medicine in the U.S.

December 9th, 2009

The AHDA (Alliance for Headache Disorders Advocacy) makes us aware of an opportunity to make a difference in the future of headache medicine. Please take action today to support the the Klobuchar / Collins Amendment to the Senate Health Care Reform Bill. Apparently the bill sets up bonus Medicare payments to doctors from certain primary care specialties. This will give an incentive and encourage doctors to enter and stay in primary care practice.

The AHDA tells us:

Physicians who specialize in headache medicine provide primary or principal care for patients with headache disorders and more than 90% of them are neurologists. Unfortunately, neurologists have been unaccountably left out of eligibility for these bonuses. If the Health Reform Bill passes with the incentive program as it is written, it will significantly undermine the ability to recruit and retain doctors to the field of headache medicine. Headache doctors are already very scarce, and it will become that much harder to find one.

Senators Klobuchar of Minnesota, Collins of Maine and Brown of Ohio, created a bipartisan amendment to the bill that would add neurologists to the Medicare incentive program. The AHDA is backing the amendment along with other groups that support sufferers from neurological diseases, including the American Academy of Neurology, the ALS Association, the Parkinson’s Action Network, the Epilepsy Foundation, the Brain Injury Association of America, the Alzheimer’s Foundation of America, and the National Multiple Sclerosis Society.

In five minutes or less, you can add your voice to support for the Klobuchar / Collins Amendment and help encourage doctors to go into and stay in headache medicine. Just go to the AHDA’s special dedicated page: Email Your Senators to Support the Klobuchar/Collins Amendment. They’ve designed it to be really easy - please just take a few minutes and do it now! That is all.

- Megan

Tags: Alliance for Headache Disorders Advocacy, headache disorders, headache specialists, health care reform
Posted in Advocacy, Current Affairs, Medicine | Comments (0)

Express Migraine to Congress

October 24th, 2009

Betsy Blondin, editor and creator of the spectacular book of art and writing by Migraineurs, Migraine Expressions, has created a new advocacy campaign. A friend suggested that people purchase a copy of Migraine Expressions for their U.S. Senator or Representative, to help raise awareness and understanding of our disease in Congress. Betsy loved the idea and launched the effort to “Express Migraine to Congress.” At least 7 books are on the way to Congress!

To participate, purchase a book for $18.95 here: Express Migraine to Congress, and let Betsy know on the PayPal form or via e-mail which Congress person to send it to. Betsy will keep track of the Congress members receiving books so we won’t duplicate efforts on Betsy’s blog here.  For each book purchased for Congress, Betsy will donate $1 to the Alliance for Headache Disorders Advocacy (AHDA) toward advocacy efforts.

If you can’t afford to buy a book, you can use the links on Betsy’s Senate and House of Representatives pages to send a message to your Congress members, asking them to help millions of Migraineurs by supporting Congressional hearings and increased funding for migraine research.

I’ll be going to the AHDA’s third Headache on the Hill day of advocacy in February, and these books sent to Congress beforehand will help raise awareness of what we are lobbying about. Momentum is building for Congressional action. Our lobbying efforts have resulted in legislative report language supporting increased attention by the NIH for migraine research. Cindy McCain coming forward as a Migraineur and pledging to advocate for Congressional hearings, has to increase our visibility.

Let’s support Betsy in this great idea to raise awareness!

- Megan Oltman

Tags: AHDA, Congress, Headache on the Hill, migraine advocacy
Posted in Advocacy, Books | Comments (0)

Socialize my Medicine, Please!

September 23rd, 2009

I went to a business lunch & learn presentation today, given by a very nice insurance agent, all about health insurance. He covered the history of health insurance, how we got in the mess we’re in today, and some ideas about how to fix it. His intention was to give business owners an idea of some options and choices that exist now. Well, we didn’t really get far into that last part, as so much of the time was taken up with people’s impassioned views on the subject of our health care system. Not surprising in the USA today.

A lot of views were expressed about how people overuse medical care, and doctors over-test and over-prescribe in order to cover their butts against potential liability, how we expect higher standards of care than in the past, how we take too many prescription drugs and don’t emphasize prevention enough. I can get with most of that, as far as it goes. I think health education and healthy lifestyle choices could be much more emphasized. I think the practice of defensive medicine is a real problem. But I don’t think the answer is to turn back the clock and say if you injure your knee you should just live with the limitations for the rest of your life, rather than having rehabilitation available. I don’t think having real effective treatments for conditions that were taken for granted throughout human history is a bad thing. People don’t have to suffer like they did - throughout human history.

It was more than I could do in the short time we were together to really make the case for chronic illness, though I tried. We all need to be responsible for ourselves, and take care of ourselves, and looking to a doctor or a pill to solve everything is not the answer. But many of us do not have the option to go without medical care - we cannot function without it. And the advances in medicine that may be seen as excessive or unnecessary by some are not happening fast enough for us, to help us function.

Many of us with chronic illnesses are living the healthiest lifestyles imaginable. We’ve cut out the unhealthy things that others just think they should cut out. We don’t have a choice because these things make us sick now. One guy said he thought it was crazy that healthy people and sick people should pay the same insurance premiums. This shows the problem with a traditional, for profit insurance risk model - but how can any rational person say that you have to be extremely wealthy to be a sick person? Should I pay twice (or five times) as much for my insurance as you? In other words if I get sick, if I have a genetic predisposition to disease, have an accident, or am just unlucky, I should go broke and end up an the street in order to pay for my care? Or maybe I should just die? A pure for-profit insurance model like this guy was championing, that’s the real death panel.  (Choosing who should live or die based on ability to pay. We have that in this country right now!)

I’m responding to things that I couldn’t respond to at the time without completely diverting the conversation. Unlike some wingnuts in town hall meetings around this country, I’m polite enough not to shout people down. Most of the time.

But what really got me was when we started talking about the Canadian model - interestingly, our presenter was a Canadian, living in the US for the last 15 years. He debunked the myth that people wait years for needed surgery in Canada. The same guy whose views I took issue with above said that in Canada the health care is free but the beer is really expensive. He said, “I’d rather have a cheap six-pack than a heart transplant.” Now listen, he was trying to be funny, but come on. Ask anyone on the street if they’d rather have a beer or a heart transplant, and chances are only those who need heart transplants are going to opt for the second choice. Even if you don’t like beer… The point is, that if you need a heart transplant, you should be able to have one without worrying about losing your life savings, or dying without the care you need. And yeah, go on and tax the unhealthy things to pay for the healthcare. Makes sense to me!

- Megan

Hit in the head image courtesy of Pawel Loj.

Tags: chronic illness, health care reform, health insurance
Posted in Advocacy, Current Affairs, Rant | Comments (4)

Don’t restrict Acetominophen - Educate, don’t Regulate

September 22nd, 2009

Please sign the American Pain Foundation’s petition to the Food & Drug Administration asking them to educate the public about the dangers of overuse of acetominophen (Tylenol), rather than restricting its use.  The FDA is considering banning pain medications such as Lortab, Percocet and Darvocet which contain acetominophen as a second ingredient in combination with a narcotic pain reliever, as well as making extra-strength acetominophen formulations available only by prescription.  As the petition states,

When used as recommended, acetaminophen is a safe and effective pain reliever and fever reducer and has been used by millions of Americans for decades.  This medicine, like all medicines, has risks when used beyond the recommended amounts.

Acetaminophen: Educate, Do Not Regulate.

The FDA’s proposed regulations are due to concerns about liver damage from overuse of acetominophen.  Proper labeling could do away with much of this concern, and avoid leaving pain patients without medications they need to get by on a daily basis. Without proper labeling, it’s easy to overuse the medication even at lower doses. More importantly, people who rely on these medications to get through their daily lives will be left without help.

You can also leave comments directly for the FDA - the comment period ends September 30th.

Please take a few minutes to take action on this important issue!

- Megan

Tags: acetominophen, American Pain Foundation, FDA, pain
Posted in Advocacy, Managing, Medicine | Comments (0)

Cindy McCain - A High Profile Migraine Advocate

September 16th, 2009

You may know that Cindy McCain came out of the closet as a Migraineur in the past few weeks, revealing her long struggle with the disease, and very controversially likening her suffering to that of a prisoner of war.  Whatever you may make of that statement, there is no doubt that this will bring a lot of attention to Migraine disease.  A high profile advocate may be just what we need to finally get some recognition for the huge impact of this disease. Cindy McCain gave the keynote address at the International Headache Congress in Philadelphia last week, and Teri Robert got an exclusive interview with her.  You can read Teri’s inspiring article here: Interview with Cindy McCain.

- Megan

Tags: migraine advocacy, Migraine and Headache awareness
Posted in Advocacy, Current Affairs | Comments (1)

Juggling Work & Illness

June 10th, 2009

Some of you may know that for the past few months I have been writing articles on Health Central’s My Migraine Connection on legal issues that relate to Migraine and chronic illness - doctor/patient confidentiality, protection of your Medical Records under HIPAA, Accommodations under the Americans with Disabilities Act, and look soon (in the next day or two) for an article on taking intermittent leave under the Family Medical Leave Act. You may know that in addition to coaching Migraineurs and others with chronic illness in how to manage life, get better, and live well with chronic illness, I am also a business coach, an attorney and a mediator, and I’m helping my husband develop several other web-based businesses for our family.

I try not to make too many recommendations that I haven’t tried myself, and so if I am going to coach and advise people in how to perform the extreme juggling act that is life with chronic illness, I guess I’d better be quite the juggler myself. I didn’t necessarily set out to do it on purpose - it worked out that way. When full time lawyering didn’t fit with chronic fatigue and triggered too many Migraines, when business coaching dropped way off in the current economy, when Migraine management coaching was a great idea but needed some time to develop, I have tried to keep nimble and keep using all my skills, trying new things and renewing old ones, all while getting sufficient rest, managing my triggers, and practicing my intentional relaxation.

I really started out this post to point you to the writing I’ve done on legal topics lately, because I think as you are managing your life with Migraine, these are useful pieces of information for you to have. But I do think a lot about all the many pieces that make up my life, the balls I have up in the air, as I work to manage it all, and to help those of you who work with me to manage what you juggle as well. It’s great to have something to work on. You don’t need to have as many things to manage as I do - I’m probably an extreme case. But it is important for us to have a sense of purpose and to be making a contribution in life - even when we are ill. It may not be work for pay - but if that’s possible, it’s a good thing! I recently added a little part-time job to my mix that keeps me on my feet for several hours, several days a week. Despite some initial exhaustion, over all my stamina seems to be building.

I hope for you that you have something that can get you out of bed and give you a sense of purpose - at least some of the time. Let me know how your juggling act is going!

- Megan

Street juggler image courtesy of Amit Bansal.

Tags: disability rights, managing life with migraine, work-life balance, working
Posted in Advocacy, Managing, Musings | Comments (2)