Cluster-headache sufferer offers advice

DEAR DR. GOTT: I am 80 years old and have spent some 40 years in radiology as an X-ray technologist. Now that I’m retired, living in Pennsylvania, I write adult and children’s books.

When I was 19 years old, I developed cluster headaches that, at times, became unbearable. I presented all the classic symptoms. Our radiology office was located in a professional building, along with 40 other specialists. At the time, I became a guinea pig. I had everything from Novocain injections into my cervical nerve to histamine injections in my arm, all to no avail. I tried all the known remedies available at the time.

My agony lasted until I was about 33 years old. My episodes were predictable. Every day, they lasted from one minute to several hours, for over a period of six months. Then, just as rapidly as they appeared, they vanished for six months.

Then, as luck would have it, while reading a medical magazine, I spotted an ad from a pharmaceutical company advertising a brand new drug called Sansert, which I believe is now off the market. I asked the radiologist I worked for if he would please contact the company and ask for samples, which he did, knowing that everything else I had tried had failed.

Already in the throes of a cycle, I took the pills according to directions without success. After a period of calm between cycles, I was prepared to make another attempt. Typically, the cycle of pain would ensue and build in crescendo, until reaching its pinnacle, after which it would act in just the opposite manner until I was pain-free; usually all within a minute. Only this time, as soon as the pain started, I popped a pill and did so for one full week, after which I began to notice that the excruciating pain began to abort and then lessen, finally disappearing completely. Then I skipped a cycle, only to become disappointed when it once again returned.

After a period of remission, the pain returned. I immediately began taking the Sansert again with success. After that last bout, at age 33, until this day, I have not had another recurrence.

DEAR READER: To my understanding, Sansert is no longer available in the United States but is still available in other countries. It carries some serious side effects, and this is likely why the United States chose to remove it from the market.

Sansert is chemically similar to lysergic acid diethylamide (LSD), a well-known, potent hallucinogenic that has been purported to relieve the pain of cluster headaches and migraines. To my knowledge, no legitimate research has been done on this subject. I discourage everyone from trying LSD as a treatment because it is an illegal substance that carries stiff legal penalties, not to mention the potentially serious side effects that may last for years in some people.

I bring the similarities of these two substances up only because Sansert carries the side effects of mood changes, hallucinations, delusions and more that are also associated with LSD.

While I am happy to hear that you have success with this drug, there are safer options available. Unfortunately, Sansert has too many strikes against it for me to feel comfortable recommending it to others.

I suggest anyone suffering from cluster headaches be under the care of a neurologist familiar with the condition. Many of my readers with this problem have found relief using supplemental oxygen. Other options include the triptans (sumatriptan, zolmitriptan), local anesthetics (lidocaine, etc.), certain antihypertensives and others. Rarely, surgery may be recommended for those who don’t respond to aggressive treatment or cannot tolerate other treatments.

To provide related information, I am sending you a copy of my Health Report “Headaches.” Other readers who would like a copy should send a self-addressed stamped No. 10 envelope and a $2 check or money order to Newsletter, P.O. Box 167, Wickliffe, OH 44092-0167. Be sure to mention the title or print an order form off my website at www.AskDrGottMD.com.

About Dr. Gott