'Mimicing' Narcolepsy ?

[Alinar]

I'm 25

On strong emotions,my muscles become weak,particularly when I am laughing(I could fall). When I sleep,many times,I feel heat on my head and vibration,then after,I feel paralysed and hallucinate. I am also sleepy everywhere. As well I am very sensitive to light. I also have memory problems. I searched and researched,studying from psychotical cases to other psychiatrical problems,or others,to come up with the conclusion that nothing describe what I have,  until recently, where my night schedules were disturbed,I started to have exaggerated paralysis problem, then I decided to search about sleep paralysis, and tried to find out what could create it,I found the word narcolepsy in one of those sites, then I searched for that word, all what I knew I had for years was there as symptoms. While because of my disturbed sleep schedules my nights were very disturbed as well, and my discovery(Narcolepsy),I finally decided to consult my GP,to my surprise, he said he do not believe that it may be narcolepsy, he thought that those things are new. He asked me questions,while it was evident that he was thinking that depression, panic or obsessive problems may explain..I know it

[CCF-Neuro-M.D.-JT]

Narcolepsy is characterized by 4 things:
1.Excessive daytime sleepiness
2.Sleep paralysis-brief paralysis while falling asleep and less commonly on waking
3.Cataplexy-temporary paralysis during emotional states such as laughter
4.Hypnagogic hallucinations: visual, auditory, feelings that parts of your body are abnormal - growing/shrinking/etc..., and sense of motion while you're falling asleep

I'm not sure what your GP meant, but all of these things have been known to be associated with narcolepsy since the late 1800s and early 1900s. You of course don't have to have all 4 clinical manifestations, but if there is a strong clinical suspicion then you should definitely undergo a sleep study to further evaluate whether or not you really have this. There are specific things they look for on the sleep-EEG to make the diagnosis.  This is an important diagnose to make so that you can get the appropriate treatment.I don't know of any other disease, except perhaps other forms of narcolepsy, sleep disorders that causes this constellation of symptoms. But please keep in mind I have not personally examined you nor have I reviewed your clinical history in detail to give an accurate medical opinion.

Get a sleep study, and if your GP is reluctant to do so, get a neurologist to help you. GOod luck.

[Alinar]

Thanks mikesgirl, but I have all 4 of the major symptoms(including cataplexy). I wonder if your patient had all of the symptoms as well. Beside that I have Crohn disease, and treated for it as well, since Narcolepsy is now considered to be an auto-immune disease, I wonder if the two could be linked.

[mikesgirl]

I need to point out up front that I am the caretaker of a patient and NOT a doctor.  I have been studying sleep disorders for months while waiting for a sleep study to be performed, trying desperately to find help for a man who has baffled dozens of doctors over the course of the last four years.  Actually, he has excessive daytime sleepiness, and muscle weakness that could have been an unusual presentation of cataplexy - there are times when his knees give out and he nearly collapses, but then recovers his control quickly enough to keep from falling.  He had tremors with that weakness, and general confusion, disorientation and a number of other symptoms.  One sleep doctor suggested that it could be narcolepsy even though it looked a lot more like apnea to me.  He then suggested that the two could co-exist in the same patient.  One strong indication of narcolepsy in a sleep study is early- or sleep-onset REM sleep.  You won't know about this without a sleep study as there is no real way to tell.  As soon as I saw the graphs and report of my patient's 'sleep architecture', it was obvious that we could rule out narcolepsy.  He had, in fact, very delayed REM sleep, and none without CPAP treatment.  He is currently being treated with CPAP, but it is a very difficult thing for him to get used to, and I almost wish it had been narcolepsy because the treatment for that is medical rather than mechanical.  It really would be easier to implement.  As things stand now, we have no idea which of his symptoms will resolve as he regains his sleep balance, which could take up to a couple of months, but he has four years worth of sleep deprivation and exhaustion to resolve.

In your position I, too, would be very curious about a link with autoimmune disorders.  I have not seen anything about that.  Have you looked at PubMed, NIH's Library of Medicine?  If you can stand to wade through a lot of very technical and confusing language, there is awesome information there.  Also, may I suggest Sleepnet?  There is a forum there specifically tailored for narcolepsy patients.  I'll try to put some live links below here for you.

http://www.sleepnet.com/

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?SUBMIT=y

Good luck!  Remember there is treatment no matter what your condition and you just need to get a diagnosis so you can start feeling better.

[mikesgirl]

I have to agree and strongly encourage you to get that sleep study!!  There ARE treatments if it is narcolepsy, and you may find that you have a different sleep disorder.  There are about 80 of them even though most people only hear about a couple of them.  My patient was exhibiting symptoms that could have been perceived as similar to narcolepsy, but it turns out he has severe obstructive sleep apnea.  I was prepared to deal with narcolepsy, and was relieved that wasn't the problem, but in fact, it may be easier to treat than trying to deal with CPAP issues with apnea.  In any case, I just felt it is really important to add my words of encouragement to you in getting a sleep study.  Good luck!  It sounds like you're on your way to a diagnosis, and whatever it turns out to be, knowing is better than not knowing.