please help with answers
Question:
Hi Scott – I have both narcolepsy and sleep apnea. My apnea was diagnosed in 1987 and I have been using a CPAP since then. My narcolepsy was not diagnosed until 1992, when I was 50 years old. We were able to trace the onset of narcolepsy back to age 13, so my narcolepsy went undiagnosed for 37 years, despite my regular complaints to doctors about being sleepy all of the time. Scott Marabillas wrote in message …
|Dear group… | |It seems that the older I get the more I suffer from narcolepsy. I am |totally sick of functioning at this low level and I was hoping some |knowledgeable people from this newsgroup who also suffer from narcolepsy can |help me. I have opted to try to live my life drug-free and without the |C-pap, but I’m not so sure that route is working for me anymore. My life is |in shambles. I have several questions: I seem to struggle more with narcolepsy now than when I was younger, but I don’t know whether it’s because the narcolepsy is getting worse or because I am just less able to fight off the effects as I get older. I certainly don’t have the stamina that I used to. | |1. What is the name of the new wonder drug for narcolepsy that just came |out on February 15? I can’t remember the name of it, but it was supposed to |have been distributed by a small, obscure drug company. That would be modafinil, sold in the US and UK under the name Provigil and marketed by Cephalon in the US. Here is the URL for their web site: http://www.provigil.com/index.htm I printed the ‘Prescribing Information’ and gave copies to my pharmicist and doctor. My doctor is still researching Provigil and has not yet prescribed it for me, so I have no experience to share. From what I have read, several people have abandoned it because it caused severe headaches and nausea that they simply could not tolerate. Others have had wonderful results, saying that it helps them stay wide awake but not ‘wired’ the way that their previous medications did. But even some of those people had headaches at first, but they went away after a while. | |2. What are the names of the proteins that narcoleptics produce (supposedly |there is a blood test for this)? I remember getting the test and I tested |positive for two of the three proteins, but I cannot even remember the name |of the test anymore. I don’t know if this is the same thing that you are referring to, but there is a test where they look for HLA antigens(?). This is related to a genetic marker that researchers have found, but its presence and correlation is race-dependent. | |3. Is it typical for narcoleptics to dream lucidly? I know I do, but I’m |not sure if it’s because I’m narcoleptic. I have very vivid dreams. I also have hypnogogic and hypnopompic hallucinations (HH), which are dreams that are so vivid that they can be indistinguishable from reality. I had already taken a disability retirement before I learned that I have N. I learned about HH while reading about N, and all of a sudden I understood some weird things that had happened during my life. You can have ‘micro-sleeps’ during the day that may last only seconds or less and not realize that this is happening. During this time you can have an HH and not realize that it isn’t real. | |4. Is it typical for narcoleptics to feel disorganized or dizzy or |disheveled or nauseated? I usually feel any combination of the prior |adjectives–and it really makes little difference whether I’ve slept well or |not. I haven’t felt nauseated, but I certainly have had problems concentrating and doing things that I know how to do. It was much worse before I found out that the artificial sweetener aspartame (Nutrasweet) caused me a lot of problems. When I am suffering a ‘nap attack’ I find it very difficult to control my emotions. My doctor says that that is for the same reason that a child who needs a nap gets very cranky. | |5. Does sugar knock you out? Sugar has the opposite effect on me from what |other "normal" people seem to claim–the euphoric, temporary high. If I’ve |had too much table sugar, it makes me sleepy, grouchy, and even hungry! I have found that having too much sugar and nothing else has that effect on me, but not if I have it with a meal. I have found that I do better if I have meat or cheese or an egg or some of those other things the American Heart Association has a fit about that I do much better. | |6. What help is weight training (if any)? Several years ago I joined a small local health club and faithfully went a minimum of 4 times/week for about 18 months. I walked on the treadmill, rode the exercise bike, and used the Keyser exercise machines (weight training). I developed muscles in places where I didn’t have places before. I felt good after exercising, but it absolutely wiped me out for the rest of the day. It’s as if I have only a half-gallon of gasoline and, once it’s used up, I am done. I feel that it might have done me more good if I had been younger, but I was 53 when I started, and I have never been one to exercise or get into any kind of sports. | |Thanks very much if you can help with any of these questions… | |Scott | I don’t know if I was able to help much. I would like to have some more answers, too. I look forward to trying Provigil to see if it will help, but even if it does I won’t be able to take it over the long run because it is simply too expensive and my insurance doesn’t cover medications. Kent Taylor
Response:
Dear group… It seems that the older I get the more I suffer from narcolepsy. I am totally sick of functioning at this low level and I was hoping some knowledgeable people from this newsgroup who also suffer from narcolepsy can help me. I have opted to try to live my life drug-free and without the C-pap, but I’m not so sure that route is working for me anymore. My life is in shambles. I have several questions: 1. What is the name of the new wonder drug for narcolepsy that just came out on February 15? I can’t remember the name of it, but it was supposed to have been distributed by a small, obscure drug company. 2. What are the names of the proteins that narcoleptics produce (supposedly there is a blood test for this)? I remember getting the test and I tested positive for two of the three proteins, but I cannot even remember the name of the test anymore. 3. Is it typical for narcoleptics to dream lucidly? I know I do, but I’m not sure if it’s because I’m narcoleptic. 4. Is it typical for narcoleptics to feel disorganized or dizzy or disheveled or nauseated? I usually feel any combination of the prior adjectives–and it really makes little difference whether I’ve slept well or not. 5. Does sugar knock you out? Sugar has the opposite effect on me from what other "normal" people seem to claim–the euphoric, temporary high. If I’ve had too much table sugar, it makes me sleepy, grouchy, and even hungry! 6. What help is weight training (if any)? Thanks very much if you can help with any of these questions… Scott
Response:
Hi Scott, I’m currently undergoing tests for narcolepsy (in the UK), so am also a bit new to the ’system’, also, I’m just me, a layperson, and not a qualified medic… In answer to your questions though, 1) The new drug is called ‘Modafinil’ or Provigil, I think it’s called in the U.S., but it’s the same thing. 2. The blood test that is taken in order to diagnose narcolepsy (although this isn’t 100% conclusive) is an HLA test. This is supposed to identify a genetic marker in narcolepsy (among other things). HLA= Human Leucocyte Antigen. 3. Speaking from personal experience, yes lucid dreams are common in narcolepsy. Narcoleptics enter REM sleep much quicker than non-n’s. Usually less than 10 mins on falling asleep as opposed to 90 minutes in a non-sufferer. We also sometimes have hypnogogic hallucinations (almost like dreaming whilst awake, I think). 4.In terms of feeling nauseous, absolutely dead on your feet, on a low ebb, dizzy, bad tempered, exasperated (the list is endless…) yes, I can say I feel all these things too. Apparantly, narcolepsy peaks at around the sufferers early to mid-30’s (I’m just 30). I can say for me that this is true, as I’ve got older, particularly the last 18/24 months, my quality of life has disintegrated to such an all time low that at times I feel like screaming!!!! (and have for the first time in years, totally ‘lost it’, my temper I mean…) purely borne out of frustration at my own limitations and other people’s ignorance of this very debilitating disorder. I’ve got 2 kids, one of whom is only 2 yrs old and who also had critical problems as a result of having to be brought out in an emergency section 2 months early. I cannot empathise enough with what you are feeling- I feel it myself almost all the time. I admire your decision to cope with this drug-free. I could not get through a day without medication. (unless I had somebody looking after the kids and was allowed to sleep when I needed, which would be approx 8hours, and still sleep all night and then still feel knackered the next day…!!!) All the things that you describe though are typical in narcoleptics. Do you suffer with cataplexy too? muscle weakness/and or paralysis? This is typically treated with anti-depressants, ie Prozac (which I find helps alleviate symptons but doesn’t rid me of them entirely). Like I say, it’s all new to me too so don’t take what I say as gospel. I’m going on info I’ve read and on personal experience. You can find up to date info on it at Stanford University’s sleep research centre. They have an excellent web-site. The co-ordinater of research in N. is: Michele Okun. Hope this helps a bit anyway. Good Luck and keep your chin up!!!!! (when you aren’t dozing, hehe) sorry-couldn’t resist the little joke. Cathy katri…@x-stream.co.uk
