Advice on narcolepsy, please?
Question:
Hello, I’m in the UK, and I was diagnosed as narcoleptic via sleep latency tests a little over a year ago, after going through a lot of stress. I went from putting in 12-14 hours of work a day, and enjoying it, with a really good memory, to not being able to stay awake for more than about 4-5 hours a day without tablets, and forgetting things that had happened or been said a short while ago. While the sleep attacks are reasonably well under control, through Provigil, my memory is getting worse and worse. I am now forgetting entire days at a time – for instance, I have very little recollection of what I did last week. I’m also experiencing an increase in cataplexy – before, it was slight – an arm or a leg would go limp – now it’s total body paralysis for up to a quarter of an hour. My GP doesn’t seem to think that the forgetfullness is part of the narcolepsy, but has yet to offer anything substantial as to what it might be. I will be seeing my neurologist, but, being on the NHS, I’m not too likely to see him for at least a month. A few web sites that I’ve seen do mention memory loss and confusion, but my GP’s medical books apparently do not. Has anyone else experienced this, or can anyone shed any light on it? Thanks!
Response:
I don’t really have any advice as yet but I can tell you that you are not alone in what you are experiencing. I also have been diagnosed with narcolepsy after mslt’s and now have to go for another 2 day/2 night study to confirm again. (?) Mine also has come out after going through extreme stress. Although I apparently have had this my entire life (which explains the symptoms I have had all my life) it most recently became debilitating and prevents me from being able to work right now. I require naps every few hours. The symptom that sent me to my doc in the first place was the cataplexy which was severe at work. My muscles felt like they were melting out from under me and I would have to quickly lie down and/or nap. I was falling asleep everywhere and have extreme fatigue. My first sleep study they discovered I have sleep apnea but after being on the CPAP w/CFLEX for almost a year there has been very little improvement. From what I have been told (and read) the lack of memory thing is all part of it and I suffer from that too and it is very frustrating because I feel so stupid at times when I can’t remember simple things I have done even the day before. Embarrassing too. And my memory has always been good. Also I have the blurry vision which is apparently another symptom. I asked my sleep doc why my first symptoms of narcolepsy are not as severe right now but this cataplexy has virtually taken over my life and he said the cataplexy is the last final symptom to show up. I am not on any medication for this yet. I have to wait until after my next study. But you are not alone with that memory thing. My brain feels foggy all the time. If you are very concerned about it, definitely ask your doctor to check you out for some other cause. However, I think your GP’s medical books must not be up to date with regard to the latest findings in sleep research. Hang in there. I would be interested in hearing if you have experienced any side effects from the Provigil since I was told I will probably be prescribed that in the near future and I am concerned since I have drug sensitivities.
Response:
"CPAPHATER" <cpapha…@nospam.hotmail.com> wrote in message
news:8cd7200ad0609b1dd7431b33c962f616@localhost.talkaboutsupport.com… >I don’t really have any advice as yet but I can tell you that you are not > alone in what you are experiencing. I also have been diagnosed with > narcolepsy after mslt’s and now have to go for another 2 day/2 night study > to confirm again. (?) > If you are very concerned about it, definitely ask your doctor to check > you out for some other cause. However, I think your GP’s medical books > must not be up to date with regard to the latest findings in sleep > research. Hang in there. > I would be interested in hearing if you have experienced any side effects > from the Provigil since I was told I will probably be prescribed that in > the near future and I am concerned since I have drug sensitivities.
Thank you for the reply. I will be getting a second opinion in April, but that’s a nice long time to wait! I have had so many tests, I think the national health service has more of my blood than I do! Everything they have done, every scan, every blood test, you name it, points to narcolepsy. I agree that my GP’s books are horribly out of date – I’ll be bringing that up with her very, very soon! As far as the Provigil goes, here’s what I found: I started off on 100mg a day. The initial improvement was amazing. I stopped falling asleep, I could concentrate a bit more, and felt human again. That lasted about 3 months. Then, I was back where I’d been before. They increased it to 200mg a day. Again, 3 months later, another increase. I’m currently on 400mg, and have been for 4 months, so here’s hoping it lasts. The one big problem I found with side effects was not so much when I was taking it, but one weekend when I couldn’t get a repeat prescription, and ran out of tablets for a day. The best description I can give you is ‘cold turkey’. Any of these stupid newspaper articles doing the rounds calling it a wonder drug, or a concentration improver, with no side effects are talking absolute rubbish. It CAN be addictive, and I am very obviously now in that state. Still, if I’m going to be on it for the rest of my life, as my doctor says, then I’m all right – so long as I can get it regularly. 
Thanks again for all the information – it’s very, very helpful.
Response:
I’m glad you are getting a second opinion in April. It’s really not that far away. I still have to get my next study booked so I may be looking at the same time span. It’s good you can discuss things with your GP. There is alot of very good information from the people in this site. I am relatively new here and have found very much useful info here. I find that in the field of sleep disorders you REALLY have to be knoweledgable so you can discern the good sleep docs from the quacks and believe me, I have seen a few. Your NHS sounds like a vampire. I have been through similar experiences with numerouse tests (blood and otherwise). Thanks so much for sharing your experience with Provigil. I am sensitive to most meds and that has been a concern. I will, of course, take it if prescribed because anything is better than how I am feeling right now. I too was under the impression that it was non-addictive. I guess you are right, if we have to be on for the rest of our lives, then so be it. My only concern would be if the dose has to constantly be increased, where would it end, and what about long term effects? I guess we don’t really have too much choice right now. I will let you know how things go when I have my study and if and when I am prescribed the meds and how they affect me. Thanks again for sharing and please post any further info re your second opinion in April.
