Sunday, 9 March 2008

Sleep Eaters, Unite!

By M.D. Spenser

Sleep eaters of the world, unite.

Together we can share information on what works in fighting this disorder. And together we can show the scientific community that there are far more of us than is commonly known, giving greater impetus to research for a cure.

Those who suffer from this problem need no description. For those who have never heard of it, it involves compulsive eating while one is fully or partially asleep. The episodes, as in my case, can take place almost every night. Recollection of them can be fragmentary; sometimes there is no recollection at all, only empty food wrappers and a distended belly as evidence.

In television documentaries on sleep disorders, insomnia and night terrors are treated as serious problems. Sleep eating is used as comic relief.

But there’s nothing funny about it. Not when you are afraid to sleep at a friend’s house for fear you’ll empty the refrigerator or take a bite out of tomorrow’s wedding cake. Not when it affects your weight and therefore your health. Not when you have to start each day of your life poorly rested and bloated.

Nightly episodes

I am 54 years old, and I’ve had sleep eating since I was about 20. I eat in my sleep every night, and have for decades. A night with one episode is a good night. Nights with four or five are bad.

I have a successful career. I’ve even managed often to keep my weight down through vigorous gym work and lots of running. But an injury guarantees significant weight gain. And it is hard to charge out of the house full of ambition when you wake up sick from overeating.

Having sleep eating is not the end of the world. But it is a handicap.

If you don’t believe this is a real disorder, Google it. Try NSRED, for nocturnal sleep-related eating disorder. You’ll find that it was first officially described in 1991 (after I’d already had it for 18 years); that it is now being researched at a few institutions around the world; that statistics show that sleep eaters often also have restless legs syndrome; and that sleep eating rarely if ever responds to psychotherapy.

Researchers suspect neurological or chemical problems may cause the syndrome. Some people have had success with some drugs. Sometimes the syndrome subsides on its own. But the cause is not known and no cure has been found.

A common disorder

Estimates are that as much as 3 percent of the population suffers from sleep eating. But many sufferers assume they are the only person afflicted. Shame prevents them from telling their doctors. Because of that, some experts believe the estimates are too low.

Even assuming the number is 3 percent, that’s a lot of people – far more than many non-sufferers would suspect. The tendency is to think this syndrome is something unheard of, or at least very rare indeed.

But we know now that this is not so. Godalming, the town in southern England in which I live, has a population of 21,000. If the number really is 3 percent, that means that there are about 630 fellow sleep eaters living near me – most of them, presumably, suffering alone in embarrassed silence.

In Greater London, where I work, 225,000 people can be presumed to have the disorder. That’s a lot.

Uninformed experts

Those who find the gumption to tell their doctors are usually in for a frustrating experience. I have been to sleep disorder centres on both sides of the Atlantic only to realize quickly that these so-called experts had never heard of my disorder.

In Atlanta, the sleep expert began by prescribing me clon-azepam, an anti-convulsant some-times used to treat epilepsy. In the mornings, I felt as groggy as if I’d been hit on the head with a hammer.

When I told the doctor that drugs with a sedative effect make the problem worse – something anyone who’s dealt with this disorder can tell you – he prescribed Ritalin before bed. Taking a stimulant just as I hit the sack solved the problem after a fashion – because I didn’t sleep at all. No sleep means no sleep eating.

But that solution was obviously not sustainable in the long term. In frustration, the sleep expert dismissed me.

“You quit smoking,” he said. “And when you’re ready, you’ll quit this, too.”

It was an offensive remark, and an ignorant one.

In the U.K., it also became clear that the sleep disorder expert I saw in Oxford was unfamiliar with sleep eating. But that didn’t stop her from offering her opinion as to the cause. She was positive the problem arose because my childhood had been less than perfect.

I have no objection to psychological counseling. I’ve benefited from it. But there were two problems with this expert’s proposed solution.

The first is that various studies, while failing so far to identify a cure, agree that counseling has no effect on sleep eating.

The second was that the sleep expert proposed to cure my deep-seated psychological problem by talking with me for 20 minutes once every three months. That’s stupid.

Different cures tried

Usually, I try not to focus on my sleep eating, preferring not to waste time on a problem that cannot be solved. It’s not the worst affliction in the world; I could be paralyzed or even deaf – which would be a big problem for a music critic. Better to concentrate on what is good in my life and push sleep eating into the background than to have my hopes dashed time and again.

Still, if there were a way to cure the disorder, it would noticeably improve my quality of life (and that of the other 1.8 million residents of the U.K. who presumably have it, as well, not to mention 9 million sufferers in the United States).

So occasionally I troll the Web, seeing if researchers have come up with anything yet. And I have found a doctor forthright enough to acknowledge he knows nothing about the disorder – and willing, when I present credible research, to allow me to try drugs normally prescribed for other things.

I read on the Web that some sleep eaters had responded to SSRIs – selective serotonin reuptake inhibitors – a family of antidepressants that includes Prozac.

It was nearly a miracle. About a week after I started on Prozac, the sleep eating stopped, as if someone had turned off a switch. It was incredible. I went to sleep in the evening and I woke up in the morning, refreshed and hungry.

About three weeks later, however, the sleep eating returned. Nothing I could do – not switching to a different SSRI, not increasing the dose – would bring effect back again.

It was a cruel blow. It was almost better never to have experienced normal sleeping and eating patterns than to have elation turn to dismay.

Topiramate ineffective

Next up was topiramate, another anti-epilepsy drug. Dr. John W. Winkelman – an assistant professor of psychiatry at Harvard Medical School and medical director of the Sleep Health Center of Brigham and Women's Hospital – claims to have had encouraging results with it.

Topiramate is a very powerful drug. Patients have to start with small amounts – which nevertheless addle the brain – and work their way up to massive doses. The drug often scrambles the vocabulary.

I tried to tell someone once about an article I had written, but I said instead that I had written a song. The wrong word would pop out of nowhere; sometimes no words would come to mind at all.

That is not good for a writer. But, desperate for a cure, I persisted. If the results were as good as Winkelman reported, maybe the side effects would become manageable.

But my sleep eating did not abate. Finally, I got so tired of feeling stupid and inarticulate that I had to quit.

Most recently, I have tried bupropion, an antidepressant of a different class than Prozac. It is marketed in the United States as Wellbutrin, and prescribed in the U.K., under the name Zyban, to help people quit smoking.

Bupropion is a dopamine reuptake inhibitor. According to an article by Scott Eveloff, assistant medical director at something called SomniTech Inc, in Kansas, sleep eating and restless legs may both be rooted in dopamine deficiency.

The relationship between the two disorders, which so commonly coexist, needs to be explored. If Eveloff had identified the connection, that was good news. So I was particularly enthusiastic about trying buproprion.

Alas, no result. The drug had no bothersome side effects for me. On the contrary, it seemed to have a slight stimulant effect that was mildly pleasant. But there was no reason to keep taking a drug that wasn’t curing what ailed me, so I stopped.

Pooling our resources

Sooner or later, a cure for this disorder will be found. I think there are two ways we can hasten this discovery.

One is to come out of the closet. If someone mentions that I’ve gained weight since I hurt my knee and stopped running, I’ll have no hesitation in saying, matter-of-factly, “I have an eating disorder.”

This is not a failure of will, not a character flaw. There is no shame in this whatsoever. And by coming out of the closet, by telling our friends and our doctors, we can make the world aware of how many of us there are.

Researchers and drug companies should realize that there is big money to be made in finding a cure.

Secondly, we can share information. If anyone has found something that works, please leave a comment. Others of us can try the same thing.

Together, we can make sure that, one day, sleep eating is a thing of the past. For all of us.

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