More sleep talk.

[Romona]

I had a sleep study and sleep latency test. My diagnosis was a form of narcolepsy. Interestingly I found some info about studies that narcolepsy may be tied to immune function (I have a transplant).  I was prescribed Provigil. I got to take two doses until the transplant people took me off of it. The transplant clinic and sleep clinic were working on someting suitable I could take. It took three weeks to come up with Ritalin. I had to wait another week to get the scripts by mail since it can not be called in. I dropped of the scripts and guess what?? My insurance company denied it. So now I will have to have the doctors fight the insurance company. This is not the first time. It took over two weeks to get another drug before. I am frustrated and tired. Thanks for letting me vent. 

[goofynina]

  Romona    I know all too well about those damn insurance companies denying something that you need to help you with your health and it pisses the hell out of me,    I hope your docs put up a good fight  and you get the Ritalin that you need 

[Romona]

I stopped at the pharmacy today. No Luck!

[thegrammalady]

i'd ask a lot of questions. they give ritalin to kids with attention defecate disorder and hyper activity. which may be why the insurance company denied it. when they tried it with my son, it made him bounce off the walls. i do realize drugs react differently in children and adults, but.......

[Ken Shelmerdine]

What a pain in the arse. Is there anything you could get prescribed which would be reasonably effective until you get the dispute with the insurance company resolved?

[Sluff]

I'm not sure what they do for Narcolepsy. I have sleep apnea and (supposed to)use a c-pap machine. The reason I would fall asleep at inpromptu times was because of lack of sleep due to sleep apnea.

Narcolepsy is much different, wish I could help.

Medications     

Disclaimer: No medication works equally well for every individual. In addition, narcolepsy is known to have more than one underlying cause. The following discussion is intended  to provide general information. Only your physician can determine what is right for you.   

The medications prescribed to treat narcolepsy fall into two broad categories: wakefulness medications intended to reduce excessive daytime sleepiness, and REM-suppressing medications intended to reduce the symptoms of cataplexy, hallucinations, and sleep paralysis. 

In the past six years, two medications have received FDA approval specifically to treat narcolepsy symptoms, and are considered by leading narcolepsy experts to be the first-line treatments for the symptoms of narcolepsy. They are: 

PROVIGIL
Provigil is a wake-promoting medication for treatment of excessive daytime sleepiness. Unlike other stimulant medications, Provigil has a mild and more targeted effect on the central nervous system. In addition, it is the only wakefulness medication that does not require a triplicate prescription. Provigil may be prescribed alone or in combination with other stimulants. Provigil can reduce the dosage of other stimulants needed to achieve wakefulness. 

XYREM
Xyrem has been approved for the treatment of cataplexy and excessive daytime sleepiness associated with narcolepsy. It is a strong hypnotic medication, taken in two doses, at bedtime and 4 hours later. Xyrem helps to consolidate and improve the quality of nighttime sleep, which is of particular benefit to the many people with narcolepsy who suffer frequent nighttime awakenings. In addition, Xyrem provides relief of cataplexy during one’s waking hours. Significant reduction in cataplexy is realized from the start, with effectiveness increasing over the first six months. In addition, a recent study has shown that Xyrem also significantly reduces daytime sleepiness. While Xyrem is a highly controlled substance, due to the unfortunate recreational abuse of GHB (a related substance), Xyrem has been shown to be safe when taken as directed.   

OLDER MEDICATIONS

For Wakefulness
Prior to approval of Provigil and Xyrem, medications approved for other uses, including the treatment of ADHD and depression, were found to be effective to varying degrees in treating narcolepsy symptoms. Stimulants that have commonly been prescribed for treatment of excessive daytime sleepiness, in order of increasing strength, are: 

Ritalin (methylphenidate)
Dexedrine (dextroamphetamine)
Adderall (amphetamine mixed salts)
Desoxyn (methamphetamine) 

(Another medication, Cylert (pemoline), was frequently prescribed for daytime sleepiness in the past. It is seldom prescribed today since several instances of sudden and severe liver damage reported in patients taking Cylert caused the U.S. manufacturer to issue stern warnings concerning its use. In Canada, cylert was taken off the market. Bi-weekly blood tests of liver function are strongly recommended for anyone taking this medication.)   

For Cataplexy and Other REM Symptoms
For treatment of REM-related symptoms -- cataplexy, hallucinations and sleep paralysis -- tricyclic antidepressants such as imipramine, clomipramine and protriptyline were found decades ago to be helpful in reducing episodes of cataplexy. In recent years, Xyrem and newer-generation antidepressants have largely replaced the tricyclics as the preferred treatments for REM-related symptoms of narcolepsy. One reason: tricyclic antidepressants have many unpleasant side effects, including chronic dry mouth, which can lead to serious dental decay and loss of teeth. Newer anti-depressants have fewer and/or milder side effects, and have a more targeted action in the brain. Even among newer-generation antidepressants, some have been found to have little effect on cataplexy, while others are mildly helpful and still others can be highly effective in relieving cataplexy and other REM symptoms of narcolepsy. 

The antidepressant most effective for treating cataplexy is Effexor. Like the SSRIs (selective serotonin reuptake inhibitors), Effexor enhances  serotonin, but differs in that it also enhances the brain chemical norepinephrine. Effexor has mild wake-promoting effects in patients with cataplexy. Another medication, Strattera, recently approved for treatment of ADHD, targets norepinephrine alone. Limited clinical experience indicates that Strattera may also be effective in the treatment of cataplexy.   

While Prozac and other serotonin-specific reuptake blockers have shown some benefit in treating cataplexy, they are generally effective only at very high doses.   

Side effects and contraindications
All medications are known to produce side effects in at least some patients. Some cataplexy medications are not recommended in the presence of certain other medical conditions or in combination with certain other medications. Provigil may reduce the effectiveness of hormonal birth control methods. We strongly recommend that patients discuss potential side effects of cataplexy medications with their physicians as part of choosing treatment options. Also, be sure to report any side effects you personally experience to your physician, whether or not they are listed in the prescribing information. Many times, it is possible to minimize side effects by adjusting the dosage, timing and/or formulation (i.e., immediate release vs. extended release) of the medication in question.

This article reprinted from http://www.narcolepsynetwork.org/meds.php