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The MIDAS Touch

April 5th, 2009

I recently took a MIDAS (Migraine Disability Assessment) test, and the results were enlightening.   The MIDAS test was developed by Richard B. Lipton, MD, Professor of Neurology at the Albert Einstein College of Medicine, New York, NY, and Walter F. Stewart, MPH, PhD, Associate Professor of Epidemiology at Johns Hopkins University, Baltimore, MD.  It provides an objective measure of how much your Migraines disable you, or impair you from work and acitivities of daily life.  It is a useful test in several ways.  Many Migraine and headache specialists make use of it to determine how you are affected by Migraine disease, and to measure your progress in treatment.  The test is also useful if you need to build a body of evidence for a disability benefits application.  You can find and take the MIDAS test on line at the American Headache Society web site, Achenet.org.

In addition to being helpful in your treatment, the test may be helpful to you personally, in better understanding the impact of your Migraines.  The test has you look back over the past three months and count:

due to Migraines.  Then it asks you for the number of days you had head pain, and the average severity of your head pain.  After you fill in all these numbers, the web site will calculate a score for you, which will indicate mild, moderate or severe disability due to Migraine disease.  Taking the test again on later occasions will provide an objective measure of how your treatment is working.

MIDAS is not brand-new, but my headache specialist does not use it so I had not taken it before.  I do, however, keep a very detailed diary, which is necessary to do this test.  If you haven’t kept track of how many Migraines you had, when, how severe they were and how they affected you, you won’t be able to complete the test.  Here at Free my Brain we will have a diary available for you soon.

What I learned for my self is that I am considered severely disabled by my Migraines.  This might surprise many of the people who know me, as I am up and functioning most days.  I have most of my Migraines in the evenings.  This means, however, that I have virtually no life when it comes to socializing and leisure time, and it also means that I must constantly choose between work and family, work and household tasks.  I have to earn a living, which is a struggle, so I don’t have as much time with family as I would like, very little time with friends, and as for household tasks, ha!  Reading my MIDAS results, you could predict the layer of dust in my house!

I suppose the test confirmed things I already knew.  It is a kind of validation, though, and it helps me focus on what I need to work on.  I need to be vigilant about my lifestyle – getting enough rest, doing my relaxation practice every day, working with my doctor to find the right preventive regimen for me. I need to maximize my health so I can do my work, be with my family, and then if I have a little energy left worry about the house! The MIDAS touch? Keeping that focus is pure gold!

- Megan

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Posted in Managing, Medicine | Comments (0)

Pills, Nasal Sprays, Injections, and Now a Patch?

February 27th, 2009

A clinical trial was begun this past fall, of sumatriptan delivered by transdermal patch.  Sumatriptan, the first to be developed of the triptan drugs, is a Migraine abortive, which acts directly on the trigeminal nerve to abort a Migraine attack in progress.  It was available only as the brand-name, Imitrex, until the past couple of months when the pills and the injectable form came off patent and were approved as generics.  Triptans can be taken by about three quarters of Migraineurs and are effective in aborting a Migraine, if taken early enough, roughly three-quarters of the time.

Regarding the patch, I think it’s a good idea. The injections work better than the pills for most people, me included. Bypassing the digestive system seems to limit side-effects, especially nausea, and personally I’d love to have the faster absorption like the injections without the major ouch of giving myself a shot! That said, I imagine the manufacturer is happy to have something they can patent and charge top dollar for, now that the pills and injections are out in generic. Call me cynical… but only partly!

I have to applaud every advance in Migraine treatment, small though it may be. And though you may call me a broken record, I am still your fired up advocate here and want to point out that we have had no new medications developed for Migraine, other than the triptans, in the past 15 years. So a little yay for another way to deliver triptans.

A way bigger yahoo! would be for more effective abortives, that could be taken by people with heart conditions, AND for effective preventives without hideous side effects that are actually developed for Migraine disease, not hand-me-downs from other diseases. Call me crazy? Well, a girl can dream!

- Megan

Patchwork quilt image courtesy of LePetitPoulailler.

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Posted in Advocacy, Medicine | Comments (0)

Headache on the Hill

February 25th, 2009

I spent the day yesterday doing something I’ve never done before – lobbying Congress.  I’m not entirely sure I would ever have predicted that I would lobby Congress.  It was a great experience, and one that I’m sure will take me several posts to process and tell you about.  But I can at least get started.  The Alliance for Headache Disorders Advocacy (ADHA) is a wonderful group of doctors, advocates, writers and researchers who are fighting for better headache care for YOU.  I arrived in DC on Monday for a training session put on by the AHDA and learned some key things about the underfunding of Migraine and headache disorders research, and about how to lobby.

Nearly 40 of us spent Tuesday on Capitol Hill speaking to legislators and legislative aides.  I visited two senators and three congressmen from my state, along with another Migraine sufferer.  We were requesting that they add language to the 2010 appropriations bill which will direct the National Institutes of Health (NIH) to spend a larger share of their funds on Migraine and Headache Disorder research.

Here are some of the things I learned, straight from the AHDA fact sheet which we shared with the legislative aides:

Headache Disorders are the most prevalent neurological disorders.  This year:

US costs for headache disorders this year will be:

Migraine is extremely disabling, resulting in:

What has the response of the NIH been so far?  The NIH is responsible for funding, with our taxpayer dollars, the basic research that makes medical innovation possible.  So far the NIH funding for research on headache disorders is less than $13 million annually which comes to less than 0.05% of the NIH budget. Research of NIH funding relative to disease burdens (the impact of a disease on society, including prevalence, economics, disability, and mortality, as discussed above), shows that a fair share of funds for headache disorders (compared to other diseases with similar disease burdens) should be at least $103 million annually.

We got a good reception, particularly from our senators’ aides.  There is more work to do, but I think we are making an impact.  You can make an impact too.  Go to the ADHA site and sign up for their action alerts.  On Monday, March 2 we will be asking you to email your congressional representatives, asking them to sign on to the language directing the NIH to do the right thing with regard to headache disorders.  If you sign up for AHDA action alerts today, taking action next week will be as easy as a couple of clicks.

- Megan

We can make a difference!

US Capitol image courtesy of Kim Baker.

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Posted in Advocacy, Current Affairs, Medicine, Science, Uncategorized | Comments (9)

Avoiding the ER

February 16th, 2009

I narrowly averted an Emergency Room visit yesterday. I’m not really sure if I should be saying that proudly or with embarrassment.  The fact is that I have never yet been to the Emergency Room for a Migraine.  It had never occurred to me until I began studying up on Migraine a few years ago that it was even an option. I don’t know why – I just figured, it was pain, you just put up with it.  Since then I’m happy to say that although my Migraines are frequent, they have not often been severe and they don’t often last more than 24 hours.  I have had half a dozen Migraines where I was within an hour or so of deciding to go for emergency care, but the pain abated, the Migraine resolved, and I averted it.

When should you go for emergency care? If you have a Migraine that continues for 72 hours without a 4 hour break in pain while awake, you are in status migrainous, a dangerous condition which carries an increased risk of stroke. Before you hit that 72 hour mark, seek emergency care to break the Migraine.  However, my headache specialist has told me that if my usual abortives are not effective on a Migraine, if my pain levels are unusually high, or if the pattern is out of the ordinary for me, I should not hesitate to seek emergency care.  What you want in the emergency room is probably not narcotics, which are generally not very effective for treating Migraines anyway, what you want is one of several intravenous treatments which will actually break the Migraine cycle. Here is a list of recommended IV treatments at My Migraine Connection.

I woke Friday morning with a severe Migraine. After 2 doses of Imitrex it subsided somewhat, the pain went from about a level 7 to a level 4 and I thought it was resolving.  I still had pain when I went to bed but thought it would fully resolve while I slept.  I woke Saturday morning with pain at about a level 2.  This could still be a Migraine in the process of resolving.  It grew a little worse throughout the day and I gave myself another Imitrex injection in the afternoon. Again, this knocked the pain level back enough that I thought it was probably resolving. Yesterday when I awoke the pain was severe, around a level 8, and pounding.  I took another Imitrex injection, and a reglan, an anti-nausea medication.  Around 10 I took an oxycodone – a narcotic I have as a rescue medication.  A few hours later I took the last Imitrex injection I am allowed for the week.  At this point, the Migraine was almost 60 hours old.  If it did not respond to that last Imitrex, I was bound for the ER.  The combination of the oxycodone and the Imitrex put me to sleep, and when I woke up a few hours later the pain was down to about a 2, the pounding had stopped, and it felt like I was on the mend.  So I did not go.  Today my head feels a little sore, as if it was bruised, but I am not sensitive to light or sound and I believe I have moved on to the post-drome phase.

Did I make the right choice? I don’t know. I’d be more confident talking about this if I didn’t feel deeply reluctant, even fearful, about going to the Emergency Room.  I’m not sure why.  Yes, I’ve heard horror stories about Migraineurs being turned away and mistreated as drug seekers. I’m prepared to go in with my list of IV meds and my assertive husband and tell them I don’t want narcotics, I want something that will break the Migraine. I will also go to the ER at the hospital where my headache specialist practices, where they will call the neurologist on call who will have access to specific instructions about what to give me. I have been treated in several Emergency Rooms for several things and yes, had my life saved there. I do have some life-threatening medication allergies – maybe that’s what makes me nervous. Maybe it’s the old perfectionist’s reluctance to let anyone else be in charge – especially when my life is on the line!

I feel like I was saved by the bell, yet again. I hope that if I had felt no relief from those two meds in the early afternoon yesterday I would have gone off the ER. I believe I would have – Danny was prepared to take me, and I don’t think he would have let me off the hook at that point.  One of these days I’m going to have to get it over with and do it.  Please tell me about your ER experiences!

- Megan

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Posted in Communicating, Medicine, Musings | Comments (10)

There is NO link between Vaccinations and Autism

February 10th, 2009

Doctor who Published False Study Data Exposed as a Fraud:
Please read this Times of London investigative report on the falsification of data by Dr. Andrew Wakefield.

MMR doctor Andrew Wakefield fixed Data on Autism

Wakefield’s fraudulent article in The Lancet in 1998 gave rise to a significant decline in vaccination. (From 92% in the mid-90′s to 80% today), and to steadily rising cases of measles, including several measles deaths.  Measles cases in Great Britain increased 24-fold in that same time period.

Wakefield claimed a connection between MMR vaccine and autism, based on a study of only 12 patients, and The Times recently discovered from hospital records that for the majority of the patients, their symptoms predated the vaccinations. Wakefield falsely reported in the study that the symptoms occurred after the vaccinations.

It boggles my mind that someone would falsify this kind of information. This mis-information, once published, is extremely hard to eradicate from the public consciousness. My heart goes out to every parent struggling with an autistic child, but the public health implications here are staggering. Most of us are too young to remember the rampant epidemics of every period of human life up to the late 20th century. This kind of irresponsible rumor-starting could lead to our next rampant epidemic. Indeed, in third world countries, children die of measles all the time. Measles can kill,  blind and deafen.

Vaccinate your children! It is a serious public health issue!

- Megan

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Posted in Advocacy, Medicine | Comments (8)

Help Us Get Better Treatment

February 7th, 2009

Most of the time we do what we can to manage our own Migraines and support others, but don’t feel like we can have much of an impact on the disease itself or our treatment options. Coming up on February 24th is the Alliance for Headache Disorders Advocacy‘s (ADHA) Annual “Headache on the Hill” – a day of advocacy on Capitol Hill where we will be lobbying our Congressional representatives for a larger share of National Institutes of Health dollars for Migraine and Headache Disorders research. I’m very excited to tell you that I will be in Washington along with Teri Robert and a number of leading Migraine specialists and advocates to speak with my Congressman and Senators. Read some more about what Teri has to say about it here: We Need Your Help to Get Better Migraine Treatment.

So, here’s what happens in the meantime. The ADHA will need your help in writing to your representatives sometime soon, possibly before Headache on the Hill, to inform them about the issues and ask them to lend their support. Could you please go over to the ADHA site today and sign up for their mailing list?  This way you will know when it’s time to write your representatives. Why are Migraine and Headache Diseases so under-represented when it comes to our National Health dollars? Probably because we haven’t had the kind of organized advocacy that other diseases have had, but we can change that now!

I’ll let you know here when it’s time to write to your representatives, but please sign up with ADHA today so that you don’t have to rely on me! Thanks for your help!

- Megan


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Grand Rounds for Women’s Health

January 27th, 2009

Every week there’s a round up of the best medical web writing, called Grand Rounds, and this week it’s being hosted by the indomitable Jenni Prokopi of Chronicbabe.  The theme this week?  “Totally Babelicious: A focus on women’s health care issues.”  As Jenni says, “There’s a ton of health information on the ‘net, but often, medical research and reporting focus more on men—so we thought it was high time the ladies got a little attention in Grand Rounds.”

Leading off is an informative and hilarious post on what to do about a common women’s issue – the lost tampon. There are posts on pregnancy, childbirth, chronic illness, tips from practitioners, advocacy and more. The Migraine contingent are represented by yours truly and my friend MJ of Rhymes with Migraine.

So please visit Chronicbabe for some great reads!

- Megan

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Posted in Medicine, Weblogs | Comments (0)

Fun with Eye Exams – Bright Lights, Big Migraine

December 7th, 2008

Last week I had an eye exam. It’s not something I had ever thought was a big deal. The purpose was to check the pressure in my eyes. A particular type of glaucoma can be a side effect of Topamax, the Migraine preventive medication I am on. In addition, there is a correlation between low-tension glaucoma and Migraine. I learned this about a month ago when I first went in for the eye exam, in the early stages of a Migraine, and asked to be taken out of the bright noisy waiting room. The optometrist scolded me a bit for never having told them (in seven years as a patient) that I had Migraines. My experience has been that most doctors know very little about Migraine, and it never occurred to me to share it with them. I didn’t know it was relevant.

That first visit was a very satisfying patient experience. My optometrist was sympathetic and clearly quite knowledgeable about Migraine; she also refused to dilate me and do the full exam while I had a Migraine. She did a partial exam and I was scheduled to come back in a week. There followed a month where I had a Migraine every Wednesday. It was a good month for me, because those were the only Migraines I had. But for some reason, they kept coming on Wednesdays, and I kept rescheduling the eye exam for the next Wednesday. Finally last week I got a Migraine on Tuesday evening. It was still hanging around, slightly improved, on Wednesday, but I decided I would not cancel the appointment a fourth time. I decided to go ahead with the exam, come hell or high water. I’m not sure whether you would call what followed hell or high water. Maybe both.

First we did a visual fields test. No big deal. Lots of little lights blinking on in my visual field, and I had to press a button when I saw them. Apparently I did well. No blind spots. Then she dilated me. And shined very bright lights in my eyes. Very very bright lights. And then brighter ones. And I had to look directly into the bright lights. That is not something I have done in a very long time. I have spent several years shying away from bright lights.

When I got home I spent the evening in a dim room, blurry eyed, in sunglasses. I tried to read, work on this blog, watch tv. My Migraine came back to life with a vengeance. And hung around another 24 hours, wringing me out like a wet rag. It took days for me to feel well again. So, no, I don’t recommend getting an eye exam with a Migraine. Problem is, if I hadn’t had a Migraine I’d say the chance is pretty high I would have gotten one. The good news is I don’t have any kind of glaucoma, and I was approved to increase my medication dosage. My eyes are in good shape. It’s my brain that’s a little iffy.

- Megan

Eyeball image courtesy of Rob Bell; retina image courtesy of Eliya Selhub.

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Posted in Medicine, Musings | Comments (4)

Imitrex Now off Patent – Non-Brand Name Forms now Available

November 24th, 2008

Imitrex – the trade name of the drug sumatriptan by GlaxoSmithkline – is at long last out in generic form. Imitrex was the first of the triptan class of drugs to be released, and is therefore the first to be coming off patent. When Imitrex came out about 15 years ago it revolutionized treatment of acute Migraine attacks. Triptans work not as pain-killers but work directly to abort the neurological process involved in a Migraine attack. Although they are contra-indicated for some Migraineurs, particularly those with cardiac-related problems, they are tolerated by most, and make it possible to greatly limit the impact of a Migraine attack.

Kerrie at the Daily Headache reported last week that injectable sumatriptan is now available in a generic form, and the Wall Street Journal announced today that Dr. Reddys Laboratories has launched the generic version of sumatriptan tablets. This is great news for Migraineurs – Imitrex has been one of the more expensive triptans on the market, retailing for anywhere from $15 – $25 per pill. Many Migraineurs, myself included, have found ourselves in ongoing struggles with our insurance companies, which limit us to 4 (or 2, or 6) pills per month, forcing us to choose which Migraines to treat and which to suffer through. I am still fighting for reimbursement of over $200 for Imitrex that was prescribed, and which the insurance company said they would pay for and didn’t. But that’s just another health insurance headache story.

- Megan

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Posted in Current Affairs, Medicine | Comments (3)

Migraine Prevention – Early Success

November 12th, 2008

Shhh… I’m whispering so the Migraine monsters don’t hear me and punish me… Oh yeah, that’s kind
of like believing in ghosts. But I seem to be having some success with the topamax I’m on for Migraine prevention. I have a Migraine this evening, but I’ve been running six to eight days between Migraines, for the last three or four weeks. For a year and more before that I had been getting several Migraines a week. So the frequency is cut in half, which makes a big difference. These are early results – I’ve had good 3 or 4 week stretches before, so I can’t predict whether this will continue. But I am hopeful!

I’m still on the minimum topamax dosage. I would have increased it several weeks ago but for a switch in insurance carriers making it necessary to delay the glaucoma test Dr. Gerhardstein wants me to have before increasing the dosage. Now I am happy we have taken it so slowly. Clearly my body has had a chance to acclimate itself to the medication. I am not experiencing any of the side effects I had in the first couple of weeks, either.

The biggest surprise to me is that I have more energy generally. I am not exhausted in the afternoon and evening; I feel motivated and I am getting more done. The constant low level of head pain I lived with most of the time is just gone – it seems to me that pain may have been responsible for a lot of my fatigue in the last year. The last two weekends I have done yardwork and projects around the house that I have wanted to do for ages.

There is a downside, though. It’s very easy to start feeling like Wonder Woman in contrast with how I felt before. So once again I need to practice what I preach! Along with my clients, and you dear readers, I need to find that middle ground! For over five years now I have known that to have balance and well-being, to keep my energy up and my Migraines minimized, I need to pace myself. I need frequent breaks, and shifts in focus. I need time off in the middle of the day where I truly rest. I need to pay attention when I feel myself getting wired, when my blood pressure goes up, when I start moving and talking fast, when I feel the muscles in my forehead and scalp begin to contract. These are danger signs for me. Not least because I enjoy them – I like that edgy feeling of moving fast and powering through. But that energy is inevitably followed by a Migraine crash.

A few energy management tips:

  1. Take a break or shift your focus every 45 – 90 minutes. If you are at a computer get up, stretch and do something else for a few minutes.
  2. Take “green breaks” where you go outdoors, look outdoors through a window, look at a green plant, or at the very least look at a picture of a green plant. 2 – 5 minutes can make a huge difference.
  3. Take deep breaths to slow yourself down if you feel your energy or stress level mounting.
  4. Be sure to take a real break in the middle of the day – don’t work through lunch.

I failed at finding the middle ground today. I got a lot done, but there’s a price and I’m paying it. And so I learn my lesson again. I’m grateful to have more energy and less pain, and I’m committed to maintaining my energy by using it wisely! Let me know how you’re doing with your energy today!

- Megan

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Posted in Managing, Medicine | Comments (2)

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