Those who have read enough of my posts on this site will be able to anticipate what I’ll say about this new study.

The study reports that people with chronic pain can get relief from smoking small amounts of marijuana.  Now, I don’t have any particular views about legalization of marijuana; honestly, I just don’t care that much.  But what bugs me about this study is that it really shouldn’t be understood as saying much about chronic pain.  The study only tracked people for a few weeks.

A terrible misunderstanding among both patients and medical professionals is that chronic pain is just like other pain, except that it lasts a long time.  Evidence has been piling up for a long time that this is simply not the case.  Chronic pain should be treated as a disease in and of itself.  Failure to appreciate this fact causes a lot of unnecessary suffering.

One of the things that’s so difficult about chronic pain treatment is that use of pain killers and other medications becomes counterproductive if they’re taken over a long period of time.  However, over a short period of time, those same medications can have a temporary positive effect.

So, as someone with chronic pain, if I were to take opiates every day, I’d experience lower levels of pain for a while.  But over time, if I were to continue taking those same opiates, my body would compensate for them, and they’d become ineffective.  Even worse, my pain levels would likely increase beyond where they were originally.

Now, we have a new study that reports that people with chronic pain experienced lower pain levels for a few weeks when they smoked marijuana.  Well, of course they did!  And if you were to give them opiates, they’d experience lower pain levels for a few weeks, too.  But this has no bearing at all on how to treat chronic pain.  The question with chronic pain is not whether a medication can temporarily lower a person’s pain levels — there are tons of drugs that can do that!  The real question is what works over the long run.

Honestly, I’m really fed up with this kind of study.  To be more precise, I’m really fed up with how these sorts of medical studies are communicated.  It may be important to know whether marijuana has the effect reported in the study (I’m not a medical professional, so I don’t know if it’s important or not).  But it’s entirely inappropriate to communicate these results as having any bearing on chronic pain.  It encourages people to think that there’s nothing distinctive about chronic pain, and that it can be treated like any other kind of pain.  And that misconception is responsible for a lot of suffering.

I met a very nice person at the pain rehabilitation center who had been having migraines since she was a little kid.  Unfortunately, they hadn’t been diagnosed properly until many years had passed.  And because migraines are more likely to become chronic if they are left untreated, this is especially disturbing.

So it’s nice to see an article like this one about pediatric migraine.  Not only is it more difficult to diagnose almost anything in children because they might have a harder time explaining their symptoms (of course, if they’re really young, it’ll be impossible), but also because migraines often have different symptoms in children.  I mentioned in an earlier post the phenomenon of “abdominal” or “stomach” migraines, in which the pain is felt in the stomach instead of the head.  That is also more common in younger patients, and is more likely to be misdiagnosed.

Not only is migraine not “just a headache”, it’s also not just one kind of condition.  If anything, the fact that kids experience migraine differently just shows one more reason why it’s so important to ensure that we’re getting the best available medical advice.

As someone with chronic migraines, I’ve been told flat-out by my physicians that I will have migraines for the rest of my life.  But I disagree.

The reason I disagree with this is because there are so many exciting research results coming out on migraine and related disorders (such as chronic pain, epilepsy, and so on).  This one is particularly cool.  Reuters is reporting that researchers have discovered a genetic link to migraine.

Of course, we’ve known for a long time that there is a powerful genetic link to migraine.  We know this the old-fashioned way: by looking at how migraines affect people in the same family.  If your mother or father has migraines, you are much more likely to develop them yourself; and this is true even if you were brought up by different adopted parents.

I remember when the debate was raging about the human genome project, and whether it was worth it to try to map all our genes.  A lot of people promised incredible medical advances as soon as the genome was mapped, while others said that nothing good would come of it, because it was too hard to understand how genes cause physical and psychological differences.

As it turned out (and as a lot of people knew at the time), both sides were wrong.  Mapping the genome doesn’t lead immediately to new medical advances, but it’s definitely not useless, either.  The genome project gave us the data, and now biologists are getting better and better at reading that data and finding patterns in it.  To take a simple analogy, before you can develop the techniques for predicting the weather, you’d have to spend a lot of time making measurements of the weather first.  You’d need to collect lots and lots of data, and then you have the difficult task of figuring out what it all means.  The same is true of the genome project, but on a massive scale.

Now we’re seeing the fruits of that hard work.  We can scan the genomes of different groups of people and find genes that they share.  Then we can discover what those genes do, and how they work.  That leads us to understand the conditions that those genes cause.  So in the case, they’ve now found genes that are more likely to be found in people with migraines.  Once we understand how those genes actually work, we may be able to discover new therapies that work against migraines in new, potentially exciting ways.

Anyway, we’re far from that cure now.  But news like this makes me very hopeful.

I’ve been meaning to get to this topic for a long time, and the newest entry into the New York Times “consults blog” has reminded me.

A friend of mine has a daughter who suffers from stomach migraines.  I’ve spent a some time talking with her and her family about them because she’s unfortunately had a lot of the same experiences I’ve had regarding treatments.  Eventually, she also wound up going to a pain rehabilitation clinic (at the Cleveland Clinic) and had excellent results.  The last time I saw her, I would have had no way of knowing that she had migraines; this was wonderful to see.

As this Mayo Clinic physician explains in the New York Times, stomach migraines appear as abdominal pain, often quite severe.  And then there is also the usual collection of annoying symptoms: nausea, sensitivity, and all of our other good friends.

My understanding (based on second-hand reports) is that they are often misdiagnosed because they’re less common than the usual migraine.  And although we don’t know why they are focused in the stomach instead of the head, they do respond to the same treatments as the more common migraines. The trick is to get the right diagnosis as quickly as possible.

Soon, I’ll be traveling from Mississippi to Basal, Switzerland for work (part of the reason I don’t mind traveling for work is that I seem only to get sent to really cool places).

When I think about it too much, this trip does get me really stressed out.  The worst pain I have ever been in from a migraine was on a plane.  I was traveling from Missouri to Colorado, and during the final descent into Colorado, my head nearly fell off my neck.  At least, that’s what it felt like.  It was the first and last time I actually screamed in pain, because it was so intense and so sudden.

That was extreme, but airplane travel really sucks for people with migraines, and I’m no exception.  My typical flights throughout the United States are pretty short, rarely more than a couple of hours at a time.  But they almost always at least double my pain levels, and it takes a few hours after landing before my pain gets down to its usual, baseline level.  This flight will be nearly twelve hours, which could really, really suck.  (“suck”, by the way, is a highly technical term indicating an increase in pain levels, nausea, tremor, balance problems, and impaired cognitive function).

As usual, there are no drugs I can take (this is part of the whole “pain rehabilitation” thing that I’ve learned to rely on), and that includes sleeping medication.

Ugh.  So there is really only one thing to be done about it: distract myself.  I’ll be taking along enough gear to distract a bus of hyperactive seven year-olds: my computer, iPod, books, paper, coloring books, crayons, my favorite stuffed bunny-rabbit, a yo-yo, games, my toy dinosaur, and so on.  I just feel sorry for the poor soul who sits next to me.

When I was really sick with daily migraines, and they were so severe that I couldn’t get out of bed, I was eventually misdiagnosed with a deadly form of vasculitis.  In the midst of all this, I got really angry.  I put up a little blog (nothing like this one), and posted updates on my health, fights with insurance companies, and so on.  It basically gave me something to do when I was stuck in the hospital.

I insulted a lot of people on that blog.  I went after my insurance company, my doctors who had misdiagnosed me, and lot s of others.  I compared some of my colleagues to the munchkins, and put a picture of Dorothy on the site.  I was very offensive.

But nothing got people so angry as when I suggested that acupuncture doesn’t work.  People wrote nasty emails to me, they accused me of being unscientific, of being embittered by my medical problems, and so on (the last one might have been true, by the way).  I can’t help but think that if I had suggested that a prescription medication didn’t work, nobody would have been offended in the slightest.

So I was absolutely dumbfounded when I saw a study in the New England Journal of Medicine, which just came out.  It studied acupuncture’s effect on another chronic pain problem — chronic lower back pain.  Yes, I know that this isn’t migraines, but I do believe that most research into chronic pain is relevant for us migraineurs — chronic migraine has a lot in common with other chronic pain problems.  So I do watch all this stuff as it comes out.

Anyhow, the findings of the study were that acupuncture does not work for chronic lower back pain.  It is about as effective as a placebo.  This means, of course, that when you give acupuncture to someone, they are likely to report that they feel better.  But the same would be true if you gave them a placebo — when you give someone a sugar pill and tell them that it’s medicine, they will also report that they feel a bit better.

This is why, in order to be approved as a medical treatment, it is necessary to show that it is better than a placebo.  So we give the treatment to a group of randomly-selected people, and we give a placebo to others, and we test whether the group that received the real treatment is better than the group that got the placebo.  If there’s no difference, then we judge that the treatment doesn’t work.  And we don’t approve medical treatments unless they’re superior to placebo.

So you’d expect, that since the study in the New England Journal of Medicine concluded that acupuncture is no better than placebo, that they would not recommend using acupuncture for this purpose.  Well, surprise!  They conclude that we SHOULD use acupuncture, because it’s as good as a placebo!

For those who are uninitiated, the New England Journal of Medicine is quite possibly the most prestigious, most influential medical journal in the world.  Huge numbers of physicians and researchers (and even nerds like me) read it.  So it’s a big deal when the New England Journal of Medicine makes a recommendation.

Imagine, for example, that they had said the same thing about a medication.  So imagine that a drug company had come out with a new pill for pain.  The pill is tested, and it does no better than a sugar pill.  And then the authors of the study conclude that you should go out and pay for this pill and take it.  That would be shocking, and there is no way on earth that the New England Journal of Medicine (or any other respectable journal) would ever, in a million years, print such a thing.

So why is it that acupuncture gets this special consideration?  Why are normal standards of evidence disregarded when it comes to acupuncture?  I’ve heard lots of arguments about this, from people who are strongly in favor of using acupuncture.  Even one of my neurologists at the Mayo Clinic recommended it, so these are not stupid people, by any means!  Here are some of the arguments I’ve heard:

• It does no harm, so why not try it? — This isn’t true, of course.  We have only a limited amount of time and money to spend on medical care, so every time we try one thing, we’re delaying or missing out on another.   Acupuncture can be expensive, just as expensive as lots of medical treatments.  It’s usually not covered by insurance (for good reason).  In this world, we simply don’t get to try every available option; we have to pick and choose.  And since there are dozens and dozens of proven effective medical treatments for migraine, it does harm us when we spend our time and money on something else.
• It’s an ancient treatment that’s been used for thousands of years — This one baffles me.  It is no evidence whatsoever, if some treatment has been used for a long time.  For many, many years surgeons used to perform surgery without washing their hands.  But if a surgeon told you that that was evidence that they didn’t need to wash their hands, you’d be shocked!  Modern medical science is very young — we’ve only been using scientific studies in medical science for about a hundred years.  So anything that is that old was used for a long time without ever being studied in any systematic way.
• My friend/cousin/co-worker used acupuncture and they got better — This may be true, but that doesn’t prove that it works.  If, for example, I get a cold and then I drink a Pepsi, I will get better.  But that’s because I’d get better, anyway.  No single case ever proves anything; it might be the placebo effect, or it might be a total coincidence.  That’s why we never, ever approve a new medical treatment on the basis of one person’s experience.

Alright, I’ll stop.  If experience is any guide, I’ve already angered a lot of people.  Sorry about that!  I have only the best of intentions, I promise!

Of course, migraine attacks can make anyone feel cranky.  But we often overlook the fact that migraines often have a mood component as well.  Before the onset of the pain — sometimes long before — migraineurs can suffer from sudden mood swings, depression, and irritability.

In my own case, I didn’t really believe I was having these symptoms.  That is, until my wife started predicting when I was about to have an attack; she’d just wait for me to get suddenly irritated, depressed, and angry.  Then, within an hour or so, I’d have the full-blown attack.

Of course, that was in the good ol’ days before I started having migraines continuously.  Nowadays, I’ve just had to figure out how to maintain my mood all the time (exercise, proper diet, and regular sleep are the big ones, plus a healthy dose of antidepressants).

But now that we all know that migraines affect the entire brain, and that they’re more like a neurological condition than a vascular one (although there certainly are vascular components of the attacks, too), it’s not too surprising to discover that they have many more symptoms than we usually admit.

So it’s been nice to read in the New York Times “consult” section about these mood swings that accompany migraine.

But as the physician writing about migraine notes, it’s important to be aware of all the signs that lead up to the acute phase of the migraine attack.  This is because the abortive medications typically are much more effective when they’re given early in the migraine attack.  As a general rule, after you’ve reached the point of so-called “central nervous system sensitization“, it’s much more difficult to abort the attack.  That’s the phase when we feel like even tiny amounts of stimulation cause pain — for instance, if you feel like your clothes or a soft touch on your arm from a friend or loved one hurt — then you’re probably in central nervous system sensitization.

Again, this is a case where the more information we have, the better off we’ll be.

Well, I’ve recently moved from the miserable, hellish existence of mid-Missouri (apologies to anyone from mid-Missouri, but maybe you understand) to northern Mississippi (Oxford, MS, in particular).  This was mainly for a new job (which is very cool), but I was also interested in trying an experiment.  My migraines, although they are daily, are made much worse by changes in the weather.  Missouri is a pretty bad place for weather — everything is very unstable and it’s not unusual for two or three different low pressure fronts to roll through on the same day.  Mississippi, on the other hand, is much more stable.

The result of the test? My head is way better.  I’ve still got the daily migraines, but they are dramatically less severe and much more predictable.  My quality of life has definitely improved.

And why is this unfortunate?  Well, my wife still lives in Missouri.  I was kind of hoping that things would be awful here, and I’d be sent screaming back to Missouri.  Maybe we can both move to San Diego, where the weather is almost always exactly perfect?  Anyone in San Diego need to hire a nerd with a background in academic philosophy?  (no?  I didn’t think so.)

But at any rate, this little experiment makes me wonder why we don’t make radical changes to our lives more often.  For instance, if you know that your job makes you sick, why not look for a new one?  (yes, I know this is easier said than done, and I have failed terribly in about a million job searches, some in humiliating ways…)  Why not move from a place with awful weather to a place with good weather?  Personally, I started to wonder what I would do if I knew that there was something in my water that made my migraines worse.  Of course, I’d move!  And what’s the difference between having something in the water, or something in the weather?

On an unrelated note, I’m drinking a really weak iced coffee right now, and that makes me very sad.

There’s a great deal of hype nowadays about vitamin D, but also a lot of useful information.  Physicians at the Mayo Clinic have long noticed a strong correlation between people with chronic pain and vitamin D deficiency.  In fact, patients at the pain rehabilitation center are routinely tested for low levels of vitamin D.

Every time we learn something new about the benefits of a vitamin, there is an immediate reaction in which it’s touted as some kind of miracle cure.  You might remember, for example, all the hype about taking mega-doses of vitamin C.  Separating the hype from the facts is difficult, because the hype usually contains some truth, too.  Of course, vitamin C is important for the immune system and other aspects of our health, but if it were a miracle cure, that would be, well… too miraculous.

A good article came out recently in the New York Times about vitamin D (readers of my blog will notice that I’m a big fan of the NYTimes and its science and health sections).  If you’ve got chronic migraines, my personal opinion is that it’s worth asking your doctor about taking a vitamin D supplement, because of the association between deficiencies in D and chronic pain.  On a cost/benefit analysis, D is cheap and harmless (if taken in reasonable doses).