Medications

Taken from Stanford pages on Medication and is not all-inclusive. If you take something different that works (even non traditional things like acupuncture or light therapy or a certain vitamin regiment) I will be adding to this list. You have good or bad reactions to any medications, I'll add some personal comments on them. But the base information is off http://www.med.stanford.edu/school/psychiatry/narcolepsy/

Narcolepsy can be treated using specific medications: Patients with narcolepsy can be substantially helped, but not cured , by medical treatment. Sleepiness is treated with amphetamine-like stimulants , while the symptoms of abnormal REM sleep (cataplexy, sleep paralysis, hypnagogic hallucinations) are treated using antidepressant compounds. Table 1 lists commonly used pharmacological treatments for narcolepsy-cataplexy. These medications also produce a number of negative side effects, and treatment must be tailored to each individual. Not all subjects need to be treated with antidepressants, as sleepiness is often the most important clinically-relevant problem. High doses of stimulants are required for some patients but not for others. Some patients dislike the side effects of the stimulants and prefer to nap every couple of hours to relieve the excessive daytime sleepiness while taking smaller doses of the stimulants.
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Chemical Compound          Brand Name                                    Avg Dose        Comments

Stimulants
Amphetamine            Adderall/has generics     info taken from http://www.rxlist.com 

A single entity amphetamine product combining the neutral sulfate salts of dextroamphetamine and amphetamine, with the dextroisomer of amphetamine saccharate and 6, I-amphetamine aspartate.

Methylphenidate-HCl          Ritalin®, RitalinSR® (extended release)       10-60mg          The regular formulation has a very short duration of action. This is often useful when patients want to tailor their treatment to their daily activities or combine stimulant medication with sheduled napping.
Dextroamphetamine-Sulfate Dexedrine®, Dextrostat®, Dexedrine-SR®   5-60mg          Variable duration of action (Urinary pH and formulation), used in the US
Methamphetamine-HCl       Desoxyn@                                                    5-60mg           Better distribution in the brain vs. the periphery, more potent  and effective than amphetamine, used in the U.S.
Pemoline                             Cylert®                                                        20-115mg       Less potent and effective, long duration of action, hepatotoxicity
Mazindol                             Sanorex®                                                      0.5-6mg         Weakly effective, rarely used except in the U.K.
Modafinil                             Provigil®                                                    100-400mg       Fewer sympathomimetic effects and side effects, long duration of  action, well tolerated but lower potency than amphetamines
Anticataplectic Compounds
Protriptyline                         Triptil®, Vivactil®                                           5-60mg         Anticholinergic effects (dry mouth, blurred vision, constipation, etc.) at high doses, mild stimulant, preferentially adrenergic effects
Imipramine                           Janimine@, Tofranil®                                   10-100mg       Anticholinergic effects
Desipramine                         Norpramin®, Pertofran®                              25-100mg       Same as imipramine but more adrenergic effects
Clomipramine                      Anafranil®                                                     10-150mg       Very effective, mostly used in Europe
Fluoxetine                            Prozac®                                                         20-60mg       Well tolerated but high doses are often needed, less weight gain than with other antidepressants, preferentially serotoninergic
Venlafaxine                        (EffexorSR®)                                                  75-225mg      New antidepressant, slow release formulation, acting on both the serotoninergic and adrenergic system, active on cataplexy; limited clinical experience but positive preliminary results
Reboxetine                          (Edronax®)                                                       2-10mg       New antidepressant, preferentially acting on the          adrenergic system, active on cataplexy, some effects of sleepiness, limited clinical experience but very positive preliminary results.
Hypnotic Compounds
Sodium Oxybate                  (Xyrem®)                                                           3-9g          Short duration of action, resulting anticatapletic effects during     daytime. Was approved on July 17, 2002. Can be toxic at high doses and should be used under medical supervision.

Xyrem is THE BEST medication ever, especially for controlling Cataplexy! It's liquid and tastes like drinking gargling salt water. You take it just before bedtime and then another dose 2 1/2 - 4 hours later. It forces you into deep sleep that are narcoleptic brains fails to provide and therefore your body and brain makes better decisions during the day! Your threshold for cataplexy triggers is much higher so you trigger the reaction much less frequently and severely than before. It is a pharmaceutical form of GHB (Gamma Hydroxy Buterate) But as far as I can find out NO ONE has ever died from taking just GHB. EVERY death has been in conjunction with alcohol or other drugs! During the trial for FDA approval there were two overdoses, the one that overdosed (supposing they tried to kill themselves because it was 15 times the amount of the highest dose suggested, and that was when they found them unconscious and got to the hospital and tested) recovered quickly and with no effects. The other overdose was mixed with other illegal drugs and killed them. They've done a LOT of testing of GHB for like 20 years! When Orphan Medical confronted the US congress to pass this as a dual drug class, they educated them. Congress had heard so much bad talk about GHB that they thought there couldn't be a good use for it and were unanimously against any medical need for it. But after reviewing the trial results and hearing testimony from people taking it for Narcolepsy and the dramatic results they got, they pass unanimously (minus one idiot). Schedule one for those without a prescription or homemade stuff (it's supposed to be easy to do) so that the penalty is extreme for those people, and schedule three for those of us with Narcolepsy and a prescription. High doses of GHB especially mixed with alcohol CAN be used as a date rape drug, it's usually thrown in to the same category as Rohypnol which is THE date rape drug. That is the one that causes blurred vision and amnesia and extreme weakness. I have never forgotten anything while taking Xyrem (well anything more than a PWN would forget in normal circumstances) and I have been able to get up and take care of anything that need to be done despite taking my medicine (like answering the door or phone, or the kids getting sick) and all I felt was dizzy and sleepy (strength of those depending on how long it had been since I took it). DO NOT be afraid of trying this medication. It has helped SO many people with Narcolepsy return to work and take care of their family! I would try this first, you might not need anything else, and there is no long lasting wear and tear like stimulants and other medications because it's natural, your body makes GHB (well a form like it) but people with Narcolepsy just don't trigger the production because of the loss of hypocretin in the brain that regulates that stuff! If your doctor is skeptical have him get in touch with Orphan Medical http://www.orphan.com/. It's expensive for those without insurance. Contact NORD for assistance. http://www.rarediseases.org/

I WILL NOT under ANY CIRCUMSTANCES sell you Xyrem. It's not just the fact that it's a Schedule 1 drug with the FDA and will give you 20 years and 200,000 for a first offense, but the fact that we have gone through SO much to get it approved for those with Narcolepsy, that if even one person miss-uses their prescription all of the bad media will jump on it and say "I told you so" "I told you it shouldn't have been allowed as a medication". And if that comes out and ruins the chance for us to continue to use this. It will be devastating to those who have come back to a more normal life because of this WONDERFUL medication. You have no idea, unless you suffer from Narcolepsy, what it's like to finally get a good night's sleep. To feel rested. To have fewer Cataplexy attacks, or Sleep Paralysis or Hallucinations that plague you every day or night. NOTHING is worth losing this medication. NO amount of money could buy my dignity or my commitment to promote good medical help and information about Narcolepsy!

Other Stimulants

It doesn't have to be an amphetamine to be a stimulant. Some of the Anti-depressants can have stimulating effects just as some of the amphetamines can have some control over mild Cataplexy. Many people have opposite reactions to pain killers such as Codeine. Many times it will be a stimulant instead of a depressant and because people with Narcolepsy tend to NOT have problems with chemical dependency it is an option for many. Of course there are some that have had some chemical dependency issues in the past, but it was probably because they were trying to cope with the Narcolepsy. The biggest complaint I've heard is that doctors believe we (people with Narcolepsy) are looking for drugs. It is proven that they do not affect us like they do people without Narcolepsy. In treating Narcolepsy it's whatever works. I have problems with stimulants, even over the counter like Stacker 2. They tend to make me jittery and over stimulated and then I have problems with more Cataplexy. But I do like to keep them around for the rainy icky low pressure days that I just have to get things done and need to get going. I do well with Percocet (found out by accident when I was given some for a kidney stone, I never had a cleaner house! It didn't seem to over stimulate me), but Hydrocodone wipes me out. They both have the base Codeine in it, but Percocet is oxygen based and Hydrocodone is Hydrogen based. I am writing to Stanford to see what they think about this issue. Is it possible that the catalyst in the compound could be the stimulant? I'll give their response when I receive it. If you think you have an idea, talk to the doctor. Have them contact Stanford or UCLA for some information.

a new look at antihistamines used for EDS, file is in PDF you need Adobe

http://www.npi.ucla.edu/sleepresearch/04 narc John neuron.pdf

Pharmaceutical company links

Ritalin                  Novartis           http://www.novartis.com/products/en/product_list_or.shtml#r
Dexedrine            SmithKline Beecham      http://www.gsk.com/products/prescriptionmedicines.shtml?choice=generic
Desoxyn              Abbott         http://abbott.com/  (they don't have it listed as a product but they are the one's that distribute it. I believe Carnrick        Laboratories actually make it but they do not have a website. Their phone # Medical Information: (201)267-2670)
Cylert                  Abbott         http://abbott.com/ (they don't have it listed either but i KNOW they produce it! Here is a warning about Cylert, you need to have liver/ blood tests frequently [as with ANY stimulant that could affect the liver or kidneys]. Very rare, but is a concern. I do have friends that swear by this medicine though, just be cautious and talk it over with your doctor.    http://www.fda.gov/medwatch/safety/1999/cylert.htm
Sanorex                Novartis (canada)         http://www.hc-sc.gc.ca/hpb/drugs-dpd/product/p5617.html     
Vivactil                 Odyssey         http://www.odysseypharm.com/urecholine.html
Provigial               Cephalon        http://www.provigil.com/patient/index.asp  if you are in canada it is Alertec you can get it 40% off if you pick it up yourself at their offices call 1 877 542 3330 and ask for  Option 2 and find Paul  or any  pharmacist before 6 P M Eastern.
http://www.canadameds.com 

Xyrem                    Orphan Medical    http://www.orphan.com/ 

http://www.narcolepsy.com/path2pub/druglist.pdf a link to another site with good medications for Narcolepsy.

Pregnancy/Child Raising Questions I will be adding to this, most doctors will want you to go off EVERYTHING you don't absolutely have to have. But I'll research what has been studied and what they say is safe and respond here. I went through my pregnancies prior to diagnosis, but if anyone is going through or has been through pregnancy recently can add their input to what their doctor allowed them to stay on, or changed to, let me know. Also any other ways you handled your pregnancy or taking care of the newborn let me know! I can say that for me, the first month (before I knew) I was sleeping like 20 hours a day, I couldn't  help myself. But after that, I actually felt better through most of the pregnancy, my EDS and C were much less strong (my emotions were the pits so that still affected me but my threshold seemed to be higher than before. My sleep more consolidated too). From the people I've talked to it seems really common for this to happen. But everyone is different! You could be worse, not better! After the baby is born I was twice as bad, and stayed that way (but I was also un-medicated and un-diagnosed). My advice for handling a newborn is help from friends and family and make sure if you have bad C, I'd get a rolling carriage to push around the house instead of walking with the baby. I found the most inconvenient times my emotions would swell and I'd collapse. Going up stairs was ok for me, but going down stairs I would get woozy (apprehension) and I found that scooting down them was better, or going sideways one step at a time. 

As the kids get older it was important to make the house childproof to the extreme. Deadbolt locks and chains on outer doors (because I worked late, my son would wake up before Mom and dress himself and go outside before age 3! But if I dead bolted the lock he would come in and turn on the TV which would wake me up!) Put child gates on stairs or kitchen/bath so they don't get into stuff they're not supposed to. Many parents with Narcolepsy would put a gate on the kids room doorway and when it was nap time for them they would lay down on a pallet in the kids room and gate the door, so the child would wake them up when they get up and not sneak out the room. As they get older you can have sippy cups ready and snacks ready in the fridge, you'll often find they will grab their own snacks when they get up and turn the TV on and let Mom or Dad have an extra hour or so before they wake you up. Kids adapt to parents with Narcolepsy, remember they don't know any different, and you'll find they are much more understanding than those kids with normal parents! Have a support network of friends and family and keep the house as safe as you can, and let the kids know what you expect of them. Do as much as you can, don't let Narcolepsy be an excuse, but let it excuse you from what you can't do, and your kids will turn out fine! If someone has a problem with how you take care of them, tell them if they want to help, you'd be happy to accept it! What day would they be able to baby sit for you to take a nap? My friends come to my house on Friday nights. I work to keep my house chores done before they get there. It gives me a goal to stick to, and many times I've gone to bed before they leave, but I'm relaxed because I know I don't have to fight to stay awake and get the kids in the car and back home again before I can sleep. They know that sometimes I can feel fine and suddenly be ready for bed and they don't get upset about me going to bed, they can stay and continue to talk and play games with my husband. As I research more specifics about the medications during pregnancy I'll list them here. 

Alternative Treatments

Diet! Many people on the Narcolepsy list I'm on have talked about carbohydrates causing them more problems with EDS. Some people have noticed that when they went through dropping different foods to check for allergies that they noticed that certain foods caused more Cataplexy or EDS than others, and just eliminating those foods, or when they are eaten (problem foods in evening so it doesn't affect work or activities). Here's a site that's a little off on describing N, and Catalepsy is Cataplexy (different doctors and countries use different words) but the therapies are the same... http://www.herbs2000.com/disorders/narcolepsy.htm

The Atkins diet has hit the news in Narcolepsy research too!

http://www.websciences.org/cftemplate/NAPS/indiv.cfm?ID=20042593

I don't really agree with the Atkins diet. I would rather have people find what foods help or hinder and keep those in mind, and follow a more SAFE diet, the diabetic diet. No one i know of has died or gotten heart problems from it! Use your senses. Just because you can doesn't mean you have too, and too much of anything can be harmful! 

Detox yourself...

many people believe that the preservatives we feed to our animals that we consume, and the preservatives in our food cause us to become unbalanced. Soda drops your PH levels dramatically, and if you compare it to the likes of taking care of fish, low or high PH will kill them. It takes a lot to get started and get used to, but once you do, you'll be better for it. I'm starting to detox, and i'm going to grow a lot of my own stuff this summer and i will can it. I'll keep you posted on how we do, and my short cuts! 

Colon cleanse    your colon keeps a lot of undigested food, yuck! Get rid of it...have only found expensive tablets, I'll keep looking

Liver/gallbladder cleanse    your liver is what cleans out the toxins in your body. Should be cleaned out several times a year, take out the trash!
free recipe...http://www.curezone.com/cleanse/liver/

Yeast cleanse (like the atkin's diet)    it's not so much cutting out yeast all the time, it's what kind of flour and sugar you use. All the processed stuff in the store is what's bad for you. Get a bread maker/pasta maker and make your own with better flour and natural sugars. They have tablets for this too.

Full body cleanse Melt the toxins out of the fat cells so they can be washed out of the system, best if you have access to a sauna. 

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