Who has been diagnosed with narcolepsy?
Question:
Well I am a double dipper. I have been diagnosed by a nuerologist/sleep specialist. I am 6 times more sleepy than the average person on the MSLT. He diagnosed me with narcolepsy and sleep apnea. What a combination. The CPAP machine has helped a lot. Also I have a prescription of Imipram (Torfinal) and Methylphenidat (Ritalin). The Torfinal helps me to sleep soundly at night. I use the Ritalin sparingly, primarily only on days that I have meetings at work. Don’t want any microdreams during a meeting. I suggest that you ask your doctor about Torfinil. About half of my neurologists patients are narcoleptics and he has had quite good success with it. He avoids things like Ambien because it takes narcoleptics in the wrong direction. Don’t ask me to explain it. Do you know there is a separate discssion group for narcolepsy? There are not very many messages posted there. Since seeing this neurologist 2 and 1/2 years ago my life has improved quite a bit. But I am still nervous about the possibility of falling asleep while driving. I also have all of the symptoms but cataplexy. About the closest I get to cataplexy is a ring of fire tingeling around my head during times of emotion. How long has it been since you have developed symptoms? Took me about 16 years to get proper treatment. I always assumed I was lazy. LEO HENTON
Response:
Hi! I have been diagnosed for a year and a half now and have been on various meds. I have all symtoms including cataplexy. I have been on various antidepressants for my cataplexy and fortunately I found one that works fairly well called protriptyline. I am also on the new drug called modafinil for the sleepiness. This is a new drug that has been aproved here in canada. It is excellent, I was previously on ritalin but it didn’t help . Modafinal actually helps alot with the EDS so if I were you I would ask your doctor about getting it. anyway good luck Carolyn – Hide quoted text — Show quoted text ->– >Architectonic SynthesisPraxis | Information Architecture >http://www.geocities.com/Athens/7910 (netscape) >—– >If you want to make money as an architect, >you have to do something else. >—– >PGP & ICQ info upon request.
Response:
I was finally diagnosed with narcolepsy 3 years ago after a long battle with doctors who felt that I did not fit the %22classic%22 definition. I started out on dexedrine (a very low dose). However, my heart was constantly racing, and I had dry mouth vey badly. I also did not like the artificial feeling it left me with. I was then put on Ritalin. I did not like this drug either because it made me very moody. Currently, I am taking Cylert. This drug seems to be working, however there is a risk of liver damage, so I am frequently blood tested to insure no damage has occurred. I am also currently taking Anafranil for hypnagogic hallucinations. I should add that I do not take the Cylert as directed by my physician. I decided when I was diagnosed that I was not going to become addicted to the pills, so I take tham only as I need them. Although I am always tired, I have come to recognize when I REALLY need to take the pills, which i not every day. Recently, my doctor pushed me to start taking them daily, so I did try it for a month and a half. Not only did I feel worse, but I found that instead of taking only one Cylert a day, I was taking two or three just to make it through the day. I went back to my original routine, and I am feeling much better. My doctor told me this evening that Monafinil should be available by February, and he wants me to try it when it comes out. He said that it is much safer because it does not affect the liver like the Cylert does. Good luck to all of you!!! -**** Posted from Supernews, Discussions Start Here(tm) ****- http://www.supernews.com/ – Host to the the World’s Discussions & Usenet
Response:
I guess I fit right in. Diagnosed with sleep apnea 8 yrs ago and narcolepsy 2 yrs ago. I take 50mg of dextrostat 5 times a day and 45 mg of dexadrine sr 3 times a day and luvox as an antidepressant. I am waiting for modsafinil to come to the US
Response:
I have both sleep apnea (diagnosed in 1987) and narcolepsy (diagnosed in 1992 when I was 50). Once I knew I had narcolepsy and had learned some of the details, I traced the onset back to when I was 13. College was a real struggle because I couldn’t stay awake, and my work career was also a struggle. Like Leo posted earlier, I always figured that I was lazy or had some deep, hidden psychological aversion to my studies and work, despite thinking that I really loved them. In a way, discovering that I had narcolepsy was a relief, because now I knew why I had struggled. Sadly both of my parents had passed away thinking that I was a terrible underachiever. I take 56.25 mg of Cylert (pemoline) per day for drowsiness. It helps some but not much. I rarely have a problem with cataplexy, so I don’t bother having it treated. I live in upstate NY in the US, where we do not yet have access to Modafinil (except some test subjects). I have heard a lot of positive things about it and would like to know how effective others have found it to be compared to other treatments. I appreciated Carolyn’s remarks in an earlier post. I heard that it was being studied by the FDA – does anyone know where it stands in the approval process? Kent
Response:
The compay that is handeling Modafinil in the United States is Cephalon. They have a web site that the search engine will locate using the company name. They have a name, phone number and e-mail address for product information. For about the last 3 years theyhave been saying that Modafinil is 4-6 months away from being available to the public. I’ve tried Cylert before and didn’t care for it at all.
Response:
amythegr…@webtv.net wrote: > [...] Currently, I am taking Cylert. > This drug seems to be working, however there is a risk of liver damage, so I > am frequently blood tested to insure no damage has occurred. I am also > currently taking Anafranil for hypnagogic hallucinations. I should add that > I do not take the Cylert as directed by my physician. I decided when I was > diagnosed that I was not going to become addicted to the pills, so I take > tham only as I need them.
Exactly! That’s what I do! I only take it when I have to stay awake all day. When my psychiatrist reduced my dosage to half a tablet a day for fear of the liver damage, I was livid! We found something that worked, and he wanted to muck it up! I STRONGLY urged that we leave the dosage alone and begin regular blood testing and monitoring of hepatic function. But nnnooooooo! At half a tablet, sometimes it works, sometimes it doesn’t. So when I HAVE TO remain AWAKE (read, awake without the pain & sleep pressure associated with not sleeping for 72 hours –which is what I usually feel like) I take an entire tablet. Additionally, I discovered that I have to take it before I eat breakfast, otherwise it absolutely will not work. I don’t see how it’s addictive. I get no buzz, no rush, no warm feeling, no delusions, no high… I just feel NORMAL. Not giddy, silly or hyper the way caffeine makes me feel. (I’m a fool when I’m on caffeine.) Kelly Architectonic SynthesisPraxis | Information Architecture http://dallas.webstaff.com/hoskins (netscape) —– If you want to make money as an architect, you have to do something else. —– PGP & ICQ info upon request.
Response:
How much Cylert do you take? They come in different strength pills. I take an 18.75 mg and a 37.5 mg every day, but only 5 days/week to avoid building up tolerance or becoming addicted. BTW, although Cylert is a controlled substance, it is in the lowest category (below even marijuana, IIRC). The liver problem is a concern, of course. However, it doesn’t help me much. It is the only medication that I have tried since I was diagnosed in 1992. I, too, am wondering how effective Modafinil is. Kent E. Taylor (Mongo)
Response:
I just want to clarify why I believe Cylert (aka Pemoline) may be addictive. According to Reader’s Digest book of Prescription & Over-the-Counter Drugs (1998 edition), "After you stop taking pemoline, you may exhibit unusual behavior and experience severe mental depression or unusual fatigue. Consult your doctor if you suffer from these symptoms. PEMOLINE CAN CAUSE PHYSICAL AND MENTAL DEPENDENCE IF TAKEN FOR A LONG TIME. Signs of depedence include a strong desire to continue taking the medicine, a need to increase the dose to attain the same effect, and withdrawl symtoms when you stop taking the drug."
-**** Posted from Supernews, Discussions Start Here(tm) ****- http://www.supernews.com/ – Host to the the World’s Discussions & Usenet
Response:
What is the statistical rate of these symptoms occurring? What is the length ot time before onset of possible addiction? The patient is dependent from the onset because they have need of something to correct a neurophysiological flaw. I’ll examine JAMA and few other sources to more information. Supernews User wrote: > I just want to clarify why I believe Cylert (aka Pemoline) may be addictive. > According to Reader’s Digest book of Prescription & Over-the-Counter Drugs > (1998 edition), "After you stop taking pemoline, you may exhibit unusual > behavior and experience severe mental depression or unusual fatigue. > Consult your doctor if you suffer from these symptoms. PEMOLINE CAN CAUSE > PHYSICAL AND MENTAL DEPENDENCE IF TAKEN FOR A LONG TIME. Signs of depedence > include a strong desire to continue taking the medicine, a need to increase > the dose to attain the same effect, and withdrawl symtoms when you stop > taking the drug." > -**** Posted from Supernews, Discussions Start Here(tm) ****- > http://www.supernews.com/ – Host to the the World’s Discussions & Usenet
Kelly — Architectonic SynthesisPraxis | Information Architecture http://www.geocities.com/Athens/7910/ (netscape) NonGeoCities Mirror: http://dallas.webstaff.com/hoskins —– If you want to make money as an architect, you have to do something else. —– PGP & ICQ info upon request.
Response:
Carolyn, I am a narcoleptic in the US and keep hearing about Modafinil from people in the narcolepsy NG who live in the UK or Canada. Do you have any side effects? Is it as strong as Ritalin? Do you have the feeling you might become resistant to it? Betsy
Response:
I have recently been diagnosed with narcolepsy. I didn’t want to believe it, but I’ve done some research, and I now believe that the diagnosis was correct. The doctor came to this conclusion after examining the results of my MSLT and factoring my medical history. I have all symptoms except cataplexy. To those diagnosed and living with narcolepsy, are you on some medication? Has it helped? How many did you have to try before you found one that worked? What are the side effects? Anyone’s personal experience would really be appreciated. Sincerely, Kelly Wm. Hoskins (I use my middle name in everything to try to prevent receiving more free samples of feminine hygiene products in the mail.) — Architectonic SynthesisPraxis | Information Architecture http://www.geocities.com/Athens/7910 (netscape) —– If you want to make money as an architect, you have to do something else. —– PGP & ICQ info upon request.
