'Suicide Headaches' Drive Doc to Clinical Trial

Richard S. Isaacson, MD


December 17, 2019

This transcript has been edited for clarity.

I'm Richard Isaacson, director of the Alzheimer's Prevention Clinic at Weill Cornell Medicine and NewYork-Presbyterian. Today I'm going to be talking to you about something a little bit different—not Alzheimer's disease, but cluster headaches.

Cluster headaches are a very, very challenging condition from a neurologic perspective. They are very severe. Sometimes they've been called suicide headaches, in fact. So why is an Alzheimer's specialist talking about cluster headaches? Well, I'm actually a sufferer.

Back in 2013, I began having episodic cluster, where every June and December I would get what at the time I termed "migraine explosions." Well, I self-diagnosed, and self-diagnosis is not the best idea. I wasn't having migraines or migraine explosions—that's not a diagnosis that exists. I was having episodic cluster twice a year during the season changes.

In 2013, however, after suffering from these headaches that weren't effectively treated when I took the traditional sumatriptan pills, I started getting them more frequently. I ended up seeing a neurologist and another neurologist. Finally, the third neurologist who I saw gave me the diagnosis of cluster.

I was getting Botox injections for migraines for the first time. As the neurologist, a colleague of mine, Dr Safdieh, was injecting my head with Botox, he said, "Wait a minute. Why is your eyelid droopy? Why is your nose stuffed? Why is your eye red? I don't know that this is actually migraine at all. I think this is a trigeminal autonomic cephalgia or—wait a minute, it sounds like you have cluster."

About 4 years ago now, I enrolled in a study investigating CGRP inhibitor treatment. This was the first major, large randomized trial using CGRP inhibitors specifically for people with cluster headache. I completed that study just about a month ago.

For 4 years, once a month, I would take the train from New York City to the Jefferson Headache Clinic in Philadelphia, and I would get three injections of galcanezumab, for a total dose of 300 mg. Guess what happened? After the FDA reviewed the data, galcanezumab was approved as a therapy for cluster headache.

The take-home point with this is, number one, there are new treatments available for cluster headache. If a treatment is out there, believe me, I've tried it. I take verapamil and I've been on a variety of other things. Of course, there's always oxygen, but oxygen is not always easy to come by.

I want to try to make clear that there are now treatments for cluster headache. There is no perfect cure for cluster, but CGRP inhibitors hold a lot of promise. What is a CGRP inhibitor? CGRP stands for calcitonin gene-related peptide, which basically, in my Alzheimer specialist brain, means it helps with the pain and pain pathways.

There are a variety of CGRP inhibitors on the market now, but only one has been FDA approved for cluster so far. Basically, CGRP inhibitors can help with the pain part of cluster headache. For example, sometimes I may feel something coming or my eye will get a little droopy, and I'll feel like I'm going to get a cluster, but then the pain doesn't come. Some people have called this a headache without the pain, where I'm getting the cluster syndrome but no pain because the CGRP therapy is actually taking away the pain.

Cluster headaches are more common than we think. In medical school, I was taught that cluster headaches mostly affect men and smokers. Well, I am a man, but I have never smoked and I really stay away from tobacco.

Also, I've learned by going to different cluster headache conferences and being on a variety of cluster headache support groups online that women are absolutely affected. I don't know if it's similarly to men, but men make up approximately 60% or 70% of the members of these boards. It's hard to know.

Cluster headache is something for which neurologists can make a difference. There are no perfect therapies, but there are new treatments out there. CGRP inhibitors are really exciting. I would say the treatment has made my quality of life better by 30% or 40%.

My clusters are not gone. I still get them, especially in peaks around different parts of the year. However, I'm no longer carrying around a sumatriptan injection—I normally wouldn't leave the house without a sumatriptan injection. For the past year or year and a half, although I do live a block away from my office, I don't have to carry around my shots. That's one aspect of improvement.

Cluster headaches also have really terrible effects on people's loved ones. When I get a cluster, I'm kind of used to it, but my better half sees me suffering, she sees pain, and that's hard on her. I think using CGRPs and the other therapies has made her quality of life better too.

I'm Richard Isaacson, Alzheimer specialist, talking about clusters. Thanks so much.

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