What are the current drugs for cataplexy and mild Narcolepsy?

Question

I've had mild narcolepsy and cataplexy. I manage it w/o drugs, mostly, with naps and sometimes a good night's sleep. In the beginning I took some antidepressants against the cataplexy and a stimulant against the daytime sleepiness, but quit when I started having babies. Now, three years later, I'm finished nursing my children and will look into something to help the daytime sleepiness in the afternoons (driving, etc.)

What's out there now for cataplexy. I hated taking antidepressants and would rather not start them again. Any advice?

Sarina

I have heard about Xyrem. Any experience with that or other drugs from those who know about narcolepsy and have experience with the current drugs would be much appreciated.

Answer 1

Don't take medication geared towards mental health issues lightly. You really should be asking a professional. And if you don't trust the answer, seek a second opinion from another professional. Many of these drugs are addictive or they have very serious side effects. No matter what you decide to do, you need to have a professional observing the effects the drug has on your brain and your body. The people answering your question on this site, cannot make these observations even if they know what they are talking about (don't take that for granted). TALK TO A PROFESSIONAL!!!

Answer 2

I wish I could answer your question. I have narcolepsy, too, and have been managing my symptoms without medication for several years. Like you, I stopped taking the meds when I learned I was pregnant, (nine years ago!) So I don't have experience with any of the current drugs. But I can tell you what worked well for me back then.

When I was first diagnosed at 16, my doctor prescribed the antidepressant Elavil, which was WAY too strong for me. It made me terribly drowsy and lethargic, not good for someone with narcolepsy! My parents could not wake me up for school in the morning. Then my doc prescribed Tofranil (generic: imipramine) which worked really well for me. Of course, it's still an antidepressant, but I didn't notice any side effects at all. I haven't heard of the other one you guys talked about, X??? but what s/he said about it being a date rape drug would make me a little uneasy taking it. It apparently has quite negative side effects.

I should get back on something for sleepiness, but I hated ritalin. It made me irritable and gave me headaches. I would like to try something else. Caffiene only goes so far!

I wish I could have been more help. Just consider that just because a medicine is newer and more expensive, doesn't necessarily mean it is better, regardless of what the pharmaceutical companies would have you believe. Sometimes the "tried and true" is the best option.

Answer 3

Yes you can have narcolepsy without cataplexy. Only around 70% of people with narcolepsy have cataplexy. Some say you can have cataplexy without narcolepsy but some doctors will tell you that's not possible.

Answer 4

As you probbaly know already REM (rapid eye movement) sleep is abnormal in narcolepsy. In fact, narcolepsy is sometimes defined as the loss of boundaries between wakefulness, non-REM sleep, and REM sleep. REM sleep is the active, dreaming phase of sleep. Interestingly, one study observed that narcolepsy produces intense emotional states during REM phases at the onset of sleep. The three best medication out in the pharmacuetical world is Methylphenidate (Ritalin), Dextroamphetamine (Dexedrine), and Methamphetamine (Desoxyn). All stimulants for narcolepsy treatments. These stimulants have significant side effects that may include Weight loss. Dizziness, Nausea, Changes in blood pressure and rapid heartbeat and Headache. Methylphenidate, which is the standard agent for treating attention deficit hyperactivity disorder, is safer than dextroamphetamine. Small studies suggest that high doses may help avert catalepsy, although more research is needed to confirm this effect. Psychosis from overdose is very rare. Psychologic dependence can occur, but abuse has not been reported in children who have taken it for years.
Dextroamphetamine has more severe effects than methylphenidate, which can include mood changes and jerky muscle movements. Prolonged use may cause serious depression. Overdose, which can occur at doses of only 100 to 500 mg, can cause psychosis and even death. This drug should not be used during pregnancy. There is also a risk for addiction and abuse. Modafinil (Provigil, Alertec) is a novel drug that promotes long-lasting wakefulness. It is now approved for narcolepsy. Before treatment, patients in one study were able to stay awake only an average of six minutes out of twenty. After taking the medication, awake time increased to 12 to 14 minutes and some patients had normal wake times. In another study, modafinil increased the ability to stay awake by 50% and reduced the number of involuntary sleep episodes by about 25%. Some side effects of this drug may include Headache (the most commonly reported side effect). Nausea, Diarrhea, Dry mouth, Nasal and throat congestion, Nervousness, Dizziness and
Possible interference with hormonal methods of birth control, including the Pill. (Women of childbearing age who take modafinil should switch to another form of birth control.)

Being an expert in the infectious disease department i can tell you all i know about this sleep disorder. And remember there are medications for sleep disorders that run significant risks or dependency and sexual dysfunctions.
Good luck to you and anymore questions, email me.

-ef

Answer 5

i know nothing about the subject, but i looked into for curiosity's sake, and all i found was a drug recently approved by the FDA for cataplexy treatment called Xyrem, which is a common date-rape drug.

Answer 6

sis & Treatment of Narcolepsy
Provided by: National Heart, Lung and Blood Institute
Last Updated: 01/01/90

Diagnosis is relatively easy when all the symptoms of narcolepsy are present. But if the sleep attacks are isolated and cataplexy is mild or absent, diagnosis is more difficult.

Two tests that are commonly used in diagnosing narcolepsy are the polysomnogram and the multiple sleep latency test. These tests are usually performed by a sleep specialist. The polysomnogram involves continuous recording of sleep brain waves and a number of nerve and muscle functions during nighttime sleep. When tested, people with narcolepsy fall asleep rapidly, enter REM sleep early, and may awaken often during the night. The polysomnogram also helps to detect other possible sleep disorders that could cause daytime sleepiness.

For the multiple sleep latency test, a person is given a chance to sleep every 2 hours during normal wake times. Observations are made of the time taken to reach various stages of sleep. This test measures the degree of daytime sleepiness and also detects how soon REM sleep begins. Again, people with narcolepsy fall asleep rapidly and enter REM sleep early.

How Is Narcolepsy Treated?

Although there is no cure for narcolepsy, treatment options are available to help reduce the various symptoms. Treatment is individualized depending on the severity of the symptoms, and it may take weeks or months for an optimal regimen to be worked out. Complete control of sleepiness and cataplexy is rarely possible. Treatment is primarily by medications, but lifestyle changes are also important. The main treatment of excessive daytime sleepiness in narcolepsy is with a group of drugs called central nervous system stimulants. For cataplexy and other REM-sleep symptoms, antidepressant medications and other drugs that suppress REM sleep are prescribed. Caffeine and over-the-counter drugs have not been shown to be effective and are not recommended.

In addition to drug therapy, an important part of treatment is scheduling short naps (10 to 15 minutes) two to three times per day to help control excessive daytime sleepiness and help the person stay as alert as possible. Daytime naps are not a replacement for nighttime sleep.

Ongoing communication among the physician, the person with narcolepsy, and family members about the response to treatment is necessary to achieve and maintain the best control.
What Is Being Done To Better Understand Narcolepsy?

Studies supported by the National Institutes of Health (NIH) are trying to increase understanding of what causes narcolepsy and improve physicians' ability to detect and treat the disease. Scientists are studying narcolepsy patients and families, looking for clues to the causes, course, and effective treatment of this sleep disorder. Recent discovery of families of dogs that are naturally afflicted with narcolepsy has been of great help in these studies. Some of the specific questions being addressed in NIH-supported studies are the nature of genetic and environmental factors that might combine to cause narcolepsy and the immunological, biochemical, physiological, and neuromuscular disturbances associated with narcolepsy. Scientists are also working to better understand sleep mechanisms and the physical and psychological effects of sleep deprivation and to develop better ways of measuring sleepiness and cataplexy.

How Can Individuals and Their Families and Friends Cope With Narcolepsy?

Learning as much about narcolepsy as possible and finding a support system can help patients and families deal with the practical and emotional effects of the disease, possible occupational limitations, and situations that might cause injury. A variety of educational and other materials are available from sleep medicine or narcolepsy organizations. Support groups exist to help persons with narcolepsy and their families.

Individuals with narcolepsy, their families, friends, and potential employers should know that:

* Narcolepsy is a life-long condition that requires continuous medication.
* Although there is not a cure for narcolepsy at present, several medications can help reduce its symptoms.
* People with narcolepsy can lead productive lives if they are provided with proper medical care.
* If possible, individuals with narcolepsy should avoid jobs that require driving long distances or handling hazardous equipment or that require alertness for lengthy periods.
* Parents, teachers, spouses, and employers should be aware of the symptoms of narcolepsy. This will help them avoid the mistake of confusing the person's behavior with laziness, hostility, rejection, or lack of interest and motivation. It will also help them provide essential support and cooperation.
* Employers can promote better working opportunities for individuals with narcolepsy by permitting special work schedules and nap breaks.

For More Information

For additional information on sleep and sleep disorders, contact the following offices of the National Heart, Lung, and Blood Institute of the National Institutes of Health:

National Center on Sleep Disorders Research (NCSDR)

The NCSDR supports research, scientist training, dissemination of health information, and other activities on sleep and sleep disorders. The NCSDR also coordinates sleep research activities with other Federal agencies and with public and nonprofit organizations.