CH or ADHD?

"I know that cluster headaches are very rare in young children, but I believe my son began having them at the age of 3. During the winter, he began to occasionally complain of pain in his left eye. 'My eye hurt,' he would say. At first, I thought he had something in his eye, but obviously, he couldn't have things in his eye a couple of times every day for weeks on end. Then he began to wake up during the night, screaming. He'd tell me the best he could that his eye hurt. The screaming pain would last for about a half hour. I would immediately give him Tylenol, and rock him and try to comfort him the best I could until the pain stopped, like I said, after about a half hour.

After one week of constant night-time headaches, I became very concerned, and took my poor little boy to his pediatrician. The pediatrician was also concerned, and admitted him to the hospital where he could get an MRI done of his head right away. The MRI turned up a sinus infection, and it was assumed that the pain was due to the infection.

At the same time the mysterious eye pain began to develop, my son began to become very agitated and hyperactive. I always assumed this was due to the pain, but while he was in the hospital, he was evaluated by a neurologist, who told me, "No, your son has Attention Deficit Hyperactivity Disorder" (ADHD). He wrote a prescription for Ritalin. My son was also taking antibiotics for the sinus infection.

The headaches stopped, the behaviors improved. They improved to the extent that I no longer wanted to keep him on Ritalin. I had long suspected that he didn't really have ADHD, and had a lot of trouble accepting this diagnosis. It also turns out that our son is very bright, and although I am not into IQ testing and believe they only tell part of the story of human ability, on one IQ test our son took (I became convinced my son was an intelligent, intense young man and that this intensity and classroom boredom was related to lack of challenge, not hyperactivity), his IQ was 160. More and more I questioned the ADHD diagnosis, and when he was 7, my husband and I decided to stop the Ritalin.

Everything went wonderfully: no more headaches, no problems at all in school (straight A student, A's in conduct) until last year. Our son, just before turning twelve, began to complain that his left eye hurt. It gradually got worse and worse, until the "screaming headaches" in the middle of the night began, and several times a day he would have these headaches, lasting about a half hour. His left eye would tear, his left sinus become congested. We took him to his pediatrician, who suspected - you guessed it - that he had a sinus infection, and put him on antibiotics. My son did not respond, and the headaches only got worse. Next stop was another neurologist, who diagnosed him with migraine, and treated him accordingly, but he only got worse. Finally I began to do more research into headaches, and went to a second doctor for another opinion, suspecting that my son had cluster headaches.

This doctor confirmed my opinion: my son had cluster headaches. Naturally I looked back in time, and saw that 3-year-old boy, his left eye red and tearing, his poor little body rocking back and forth in pain, restless, tired, exhausted, irritable, moody.... and I compared him to his twelve-year-old self, and the similarities were striking. My son never had ADHD. He always suffered from cluster headaches. The Ritalin, I believe, did help him back then - it was better than nothing, and nobody ever suggested that my son, at so young an age, could have headaches. ADHD was a good, cover-all diagnosis, and since my son responded to the Ritalin, it seemed to support that diagnosis. But it labeled him in his school...He had to leave class to take pills... Teachers automatically attributed everything he did to 'ADHD.' Also, Ritalin is not the drug of choice for cluster headaches, and ADHD was not the correct diagnosis.

Now, however, he is on Verapamil and Indocin, and these are doing the trick - he's back to his old self. I thought you'd be interested in this story."

Last modified: 2002