Cascade Neurologic / Headache Clinic

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International Headache Congress Report

Every two years the American and International Headache Societies combine to have the world’s most important symposium on headache research.  It is always exciting to attend these meetings with 500 headache experts from every continent of the world.  This year, as I’ve done a few times in the past, I was pleased to present a research paper.  This time it was on the experience our clinic has had with patients. As mentioned before, we have a unique and compassionate approach that has earned us the highest ratings of patient satisfaction ever published.

During the meeting I had the opportunity to attend almost 40 hours of lectures from the headache thought leaders from around the world. I also was able to review almost 400 studies and talk with the authors about them.  I want to share with you my perspective of what I think are the highlights.

1) Headache and Migraine are clearly the most disrespected, yet most disabling, conditions in the world. The funding for research has been pathetic. Cindy McCain (wife of Senator John McCain) launched a “36 Million” campaign.  Her and my old colleague from Mayo, David Dodick, presented the program on the Today Show that morning and then joined us later in the day.  The reason the 36 million number was chosen was to raise 1 dollar for research for every migraine sufferer in the US.

2) The new and exciting treatment that may be coming is using natural antibodies to block one of the most important chemicals of migraine, CGRP.  The animal studies and preliminary human studies are done and it looks very promising. Nationwide migraine studies will begin this year. It could be both an abortive and a preventative. The preventative approach would almost be like a migraine vaccine, where you do an injection once a month for a while to block  migraines from coming.  It appears that the possibility of having side effects or long term risk are almost nil, but more research is needed.

3) Several studies were done looking at natural, non-drug treatments. Unfortunately none of them scored higher than placebo, which is disappointing. We always are looking for treatments that patients would consider “natural” because that is what they want in this culture. Unfortunately, while the Internet and airways are full of claims that so-called “natural” cures work . . . in reality none of them do more than the placebo effect. The only exception might be (too early to tell) is an electrical stimulator that you wear like glasses (  It is worth trying.

Since we know that implantable occipital nerve stimulators can be very effective, my hope is that a simpler stimulator, which you wear stuck to the skin, might be coming.  One trial of such an external stimulator (Fisher-Wallace Device) wasn’t more effective than a placebo.

4) The Nocebo effect was explored.  This is where patients are led to believe that medications are dangerous or have terrible side effects . . . and then they do have such side effects because of their psychological fear.  This problem can stop a patient from even trying safe medications or if they do take them, they never get to therapeutic doses.   Even if you give these patients fake pills (flour) they will have the side effects if they believe they will.

Real medications do have real side effects and we have to use them with care. I am proone to side effects, so I know what it is like. But few are dangerous none are as dangerous as driving to the store.  There is a growing trend of mis-information that states that medications are “unnatural” or only cover up the disease. Actually, medications are the only thing, (meaning good medications not bad medications like pain killers), that treat the underlying problem.

It was a little strange when an American headache specialist came to the microphone and stated that it is the pharmacist that scares patient and gives them such negative expectations.  The European speaker looked surprised and stated, “The pharmacist should never, ever be allowed to tell the patient to expect bad side effects.”  The Americans in the audience had a wave of laughter.  America is a very litigious country, which is why health care is so expensive and complicated here. I am confident that even the pharmacist must tell patients of the 1 in a million chance that the medication could cause their hair to fall out, because if they didn’t, and their hair did fall out, the patient could then turn and sue the pharmacy for millions of dollars. That is why medications now must have these horrible disclaimers on TV that gives the public the false feeling that drugs are dangerous.

5) Basic brain research is unraveling more and more of the complex nature of migraine. This will not yield results soon, but in the future . . . surely it will. Most patients are unaware of the depth of knowledge we now have about the nature of migraine disorders and eventually this knowledge with bring amazing breakthroughs in treatment.

6) For cluster headaches a new hope. An implantable stimulator of the Pterygopalatine  ganglion (a nerve deep, behind the nose) seems to block an attack when turned on with a wand (like TV remote) and may prevent attacks as well.  Cluster headache patients often suffer horribly with little comfort.

7) Two present medications had a new look as far as helping to prevent migraines. A study showed promise for the medication candesartan (Atacand)  working in migraine prevention. I tired it for years and only had one patient whom had good results. I may start trying it again.  Amiloride (Midamor) also showed promise as a preventative medication.  I have never used it.  I need to study the medication more, becoming familiar with the side effects and risks (if any) before I start prescribing it.

8) A few other research points were that, in the lab, smoking seemed to make the nerves that cause most headaches more vulnerableto pain worse but not caffeine.

9) Another “take home” for me was evidence that if DHE 45 injections made the headaches worse (which it rarely can), that if you continue using it, it will eventually work for most patients. I typically give up when it makes the headache worse with the first dose.

10) They are still working the DHE 45 inhaler, the sumatriptan patch and the magnetic migraine gun.  Some of these may be available this year.  I saw the gun and it is a little more user friendly than the one they used in research.

11) A new patient advocacy has been formed called American Headache and Migraine Association. Rather than me trying to tell you why it is different than other organization, I suggest that you follow the link and read for yourselves.

12) Probably one of the highlights of the conference was a debate between plastic surgeon Dr. Bahman Guyuron and Dr. Hans Diener over the role of plastic surgery in migraine treatment.

Dr. Guyuron is the pioneer and promoter of the notion of doing plastic surgery to “decompress” nerves around the head in order to prevent migraines from coming.

Dr. Diener is a brilliant headache researcher and clinician from Germany and president of the International Headache Society.  Dr. Diener also played a key role in blocking the payment by European insurance companies from paying for plastic surgery for migraine as an unproven therapy.

The debate was civil and productive.

Regarding Dr. Guyuron, while I know of him, this is my first exposure to the man in person.  I took away that he is a kind and sincere man, who does want migraine sufferers to be well.

I’ve known of Dr. Diener for many years and I respect him as someone equally devoted to helping migraine sufferers get well and he is a staunch supporter of the scientific method for proving safety and efficacy.  So I don’t question either man’s motives.

While I’ve had many patients question this treatment I would say my final opinion is that 1) migraine surgery doesn’t make sense for what we do know about migraine, that it is a complex “dance” of seven or more genetic mutations.  This doesn’t mean that it could not work. There are many things that we use in headache treatment that we do know that works but we don’t know how.

2) The next point is that there are no good studies to show that migraine surgery is effective more than placebo.  Procedure placebo effect is very high and the one study Dr. Guyuron published has some limitations in design.  But there does need to be good studies to answer this question once and for all.

3) At one interesting point Dr. Diener asked the audience for a show of hands of headache specialists who have patients who have had the surgery but had no benefit.  Quite a few hands went up.  He also pointed out that some of the surgeons, who trained under Dr. Guyuron, boast nearly a 100% “cure rate” for migraine. Dr. Guyuron did humbly agree to try and take those claims down from the websites.

So, while we can hope that this works, I remain quite skeptical . . . but time will tell.

Mike Jones

Posted by on July 7, 2013.

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