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Sunday, March 27, 2011

I was diagnosed with narcolepsy when I was 17, about 8-9 years ago.My question's about lucid dreaming. While I experience sleep paralysis (as well as cataplexy), I can't seem to get an answer on whether lucid dreaming and sleep paralysis are related.

Technically, they are related by their mere nature, although I believe the answer to what you are really asking is - they can be.

Sleep paralysis occurs immediately before sleep or immediately upon "waking." It is the same thing as cataplexy, but at a different time under slightly different circumstances. Both are incidents of the body using the mechanism that paralyzes us so we don't act out our dreams at the wrong time. It sounds like you know this.

Most people without narcolepsy associate "lucid dreaming" with dreams in which the setting and actions are just like day to day life, they know they are dreaming, and they can often dictate the direction of the dream. "Inception" is entirely about lucid dreaming.

By extension, the hallucinations we people with narcolepsy often experience are also lucid dreaming. It is also known as "waking dreams" or "daymares," and most often occurs in conjunction with sleep paralysis.

We know we are "awake" and aware of our environment, when we see or hear things, we know they aren't real, but we can still interact with them. Thus, by definition, a lucid dream.

Now, especially when it comes to people with narcolepsy, one does not have to be experiencing a lucid dream to have sleep paralysis, nor does one have to have sleep paralysis to experience a lucid dream. Many of us have stories of seeing people and things that aren't there during the "normal" course of our day.

I suppose some people might argue the difference between hallucinations and dreaming, but in our case, the hallucinations are the intrusion of REM, dream, sleep during waking hours, thus making them the same.

I hope that made sense and answered your question. If not, feel free to ask again, and happy napping!

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Tuesday, March 22, 2011

hi im paul from cannock england im 45 and have been diagnosed with the curse that is narcalepsy . at the moment im on modafinal and dex amphetamine. the modafinal dont seem to do anything for me but the dex do . trouble is im having to eat about 70 a day

Hi, Paul! I have heard a lot of people complain that the modafinil (Provigil, for anyone reading this who doesn't know) either doesn't work at all or stops working after a very brief period of time. For me, it was great...for about two days. Then it did almost nothing without long "drug holidays" in between. It also gave me severe headaches, so eventually I stopped that.

I personally have never tried dex. All of the stimulants I have tried give me migraines. Once side effects from the migraine medication I took became too much, I stopped taking both and now try to manage my narcolepsy medicine free. It is difficult, but I am fortunate enough to be on the milder side of the spectrum and also in a position to be able to sleep when I need to and work when I can. When I tried to fit into a normal 9-5 job, the results were pretty disastrous.

I'm not sure what your question might be, but if you are looking for treatment suggestions, I can tell you there are still more options. Nuvigil (armodafinil) is supposed to be a longer-acting form of Provigil, and some people who have had no luck with the latter due report some help from Nuvigil. Mixed with a shorter-acting drug like the dex or Ritalin, that may be one option. Unfortunately, as with those who use these drugs recreationally, it is common for a point to come when higher and higher doses are needed. It is not unusual for people with narcolepsy to go far beyond "normal" dosing over a fairly short period. One thing that may help is talking to your doctor about "drug holidays," days or weeks you can stop taking your medicine (make sure you are able to sleep all day and don't have to be anywhere) so that when you take it again, it seems to work.

There is also Xyrem, which I understand is difficult to be approved for in England, but it can be done. Although it is not a stimulant, it is the only thing that has been proven so far to improve nighttime sleep, which leads to much better days for some people. Xyrem, however, has a lot of side effects and is certainly not for everyone.

Make sure to talk to your doctor about how you feel your treatment is going, and I suggest joining online or in person support groups where you can talk to more people who understand exactly what you are going through. I am on Facebook ( and we have an independent site, I also highly recommend the Narcolepsy group at That is where I first talked to other people with narcolepsy and consider them all family.

If there is anything else you'd like to know, please write again, and I wish you luck in your struggle with this awful condition.


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