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Narcolepsy

Been diagnosed with CFS by Dr. Black from Hunter Hopkins Center, which I feel very blessed to have had the opportunity to be treated by her. She is a wonderful doctor as well a wonderful person.
Recently had a sleep study and a MSLT nap study the following day. This was my 4th sleep study and they all have indicated the inability to get Stage 3 or 4 sleep (less than 5 min. per night). The combination of this study and my first MSLT nap study produced a perfect pattern for diagnosis of Narcolepsy.
Has there ever been a study to look at the coorelation between the 2 diseases. Would many CFS sufferers be classified narcoleptic if they took the appropriate test? Narcolepsy leads back to hippothalmus and lack of production of hypocretin/orexin(?). Seems like all things lead to hippothalmus. Thank you!
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642304 tn?1242606724
MEDICAL PROFESSIONAL
I am not sure about specific details, but certainly generalized sleep disturbances are a very common feature of CFS, and narcolepsy has been reported in CFS patients.  
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Avatar universal
I was diagnosed with CFIDS in 1994.  Narcolepsy in 2005.  I get basically no stage 4 or Rem sleep at night.  Its no wonder why our mind and muscles can't heal themselves.  I can go into almost instant dreaming during day (MSLT naps).  I haven't been able to get anyone to help me figure out how to correct my sleep cycle.  If you get any ideas, let me know.  (I am on meds to help sleep and keep me awake at the right times, but it hasn't helped the sleep cycles.)

Thanks Karen
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Avatar universal
I fell asleep in all 4 of my naps and entered REM in 30 secs. on one of them. My average fall asleep time or sleep latency was 3.6 mins and average time to enter REM was 5.4 mins. This was my first time having MSLT, but my other 3 overnight sleep test pretty consistent. I get more REM than I need though, but no Stage 3 or 4. My 2nd sleep test was performed taking 4.5 ml of Xyrem at bedtime and again at around 2:00 am and I still got less than 5 minutes of Stage 3 or 4 sleep. My sleep doctor obviously at that point didn't know what to do.
I'm currently taking 1.5 mg Klonopin, Ambien CR 12.5 mg, Skelaxin 800 mg and 3 mg. of melatonin. I've read that they are starting to look at low doses of Lyrica, Neurontin and the SSRI's taken an hour before bedtime too help with sleep. I'm trying 50 mg of Lyrica, but that's as high as I will go. I've taken it twice and I gained 30 lbs. both times and lost it right back after stopping it, plus it wasn't helping. I have some chronic pain that is addressed with 50 mcg Fentanyl patch.
I did try trazadone a few years ago and it worked pretty good, but I was having an allergic reaction to it about 50% of the time that I took it. My sleep doctor actually was part of a study with trazadone and the key to it's success if it's going to work for someone is that they have to take it 2-3 hours before bedtime because it doesn't promote the deep sleep until it reaches approximately 2/3 of it's half-life and taking it then drastically reduces morning hangover. Most of your deep sleep should be within the first 4 hours of sleeping. You generally start at 50 mg. and work your way up until you reach a comfortable dose, possibly 200 - 300 mg. I'm tempted to try this again in the hopes that maybe I was allergic to the particular manufacturers formulation (i.e. - fillers and such).
I quite often will sit down somewhere and get drowsy and fall into a dream without going to sleep first. Had people tell me that I was acting like I was eating something!
The up side so far is that I do not have any cataplexy. Do you have the cataplexy?
A neurologist did this last test (she specializes in sleep disorders) and she spent about ten years at John Hopkins. She said that they are a couple of test that they can run for a more defenative diagnosis, but it involves a spinal tap!!!, but they are also looking at a protein, or something similar that is unigue to CFS. Based on my test she was not the least bit hesitant to place me on Adderall 60mg / day. It does help a lot, but I'm reluctant to take this the rest of my life.
Last thing - They are pretty sure narcolepsy comes from the lack of hypocretin in the brain and that there are several companies working on a drug to replace or at least mimic what it does in the brain and should be around in 4 - 5 years.
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