Narcolepsy/Excessive Day Sleepiness

[Turkish Delight]

Inanna - thanks for that post. Again it shows how passionate you are! I cannot express my appreciation enough.

The first ENT specialist who ordered the sleep study (SS)did not give me a copy of my whole results when i asked him. I was going to seek a second opinion after i saw the first time as i was not impressed by his manner. He gave me only a page of it, which i cannot find. If i find it (i will do some searching today), i will post the results here.

From what the ENT dr told me, I do recall however that i had no restless leg movements during the SS. I know for a fact that my legs aren't restless during the night and i don't wake from it.

I had read about the MSLT and i told DH that i might possibly have this done at hospital. The test sounds interesting as it will be a sleeping holiday for me! I tell you, i will sleep every two hours, because that is how i am normally. The second my fat bum hits the couch, i want a snooze!

As for cataplexy , hmmmmmmmm. I'll tell you what i have and you tell me if it is cataplexy. When i am overly happy, or sad (doesn't matter which end of the spectrum), i bloat. My bowels start to spasm and collect all the available gas in my system and my tummy blows out to that of a 6 month pregnant lady. That is the only loss of muscle control i have during strong emotions. I have IBS, which is triggered by lactose, but also strong emotion too!

As for Hypnagogic hallucinations. I need a better example to identify it if i have it. The definition you have given is very text booky!

As for sleep paralysis - is that when you are sleeping, your eyes are open, you can see but can't talk or move? If so, i get that, but not too often. It is very scary indeed.

Narcolepsy has been used as a reasoning behind homocide, suicide and other violent attacks...

Often people who do have narcolepsy suffer from depression due to the terrifying experiences they have during sleep. Also the social implications of falling to the floor etc etc.Often they cannot work or live alone. It is very challenging.

Hands up for the above. I have been suffering from depression since i was about 16-18 and a very bout of it just recently.
My severe PND could (and i believe is due to) have been triggered by this illness as DS wouldn't sleep at all as a baby and toddler and i loved sleep so much but couldn't get enough of it. Mum and dad would complain that all i could think of was sleeping after DS's birth and that is why i wasn't coping well. If i have such a condition, of course i would want to sleep!

You know it is scary because sleep is dominating my life. I have only just woken up from a good nights sleep and all i can think of is when DD might have her afternoon nap, so i can have a snooze too.

[Inanna]

No problem TD - I wouldn't say I'm passionate about it though... I actually found it mind numbingly boring in the end... I have a scientific mind so I loved actually seeing the physical patient & reading what was actually happening in their brains at that moment... However, watching other people sleep for a living got a bit... tiring! I did enjoy the brief time I spent reviewing studies during the daytime and doing the sleep latency testing...

Anyway... Basically from a polysomnograph it is clear almost immediately if there is a possibility of narcolepsy. This is because most healthy individuals will have REM onset about 1/1/2 to 2 hours after they go to sleep. Narcoleptic patients enter REM very quickly & have more periods of it. Also most healthy individuals will fall asleep fairly soon after going to sleep but narcoleptic patients will do so within 30 seconds or slightly more. So whenever we saw that we would examine everything more closely.

Restless leg syndrome is a separate syndrome & one that does cause day time sleepiness. This is because the patient moves their legs constantly, wakes and resumes sleep throughout the sleep night. This causes a lack of consistent rest and an inability to reach REM sleep.

However, what happens with narcolepsy often is that the patient moves their whole body. Changes position, moves limbs, tosses a lot. Of course this can happen in the absence of narcolepsy - it is just that it is observed often in these patients. It is used when observed by the nurse or scientist conducting the study as a pointer to diagnosis.

Hypagognic hallucinations are very trippy. It's often a feeling of being semi conscious of our surroundings but not being able to respond. I think of it as being as if in a coma. Aware but not able to react or respond. As I said in my last post sometimes it even feels that one cannot breathe - but it is clear by the polysomnography & observations that they are. It is often a terrifying experience.
Studies have found that people in the hypnagogic state are awake and aware of their surroundings, but their brain waves show their brain as asleep. During REM sleep the brain blocks the signals that make our limbs move, so we don't act out our dreams. With hypnagogia, we seem to enter the REM state too fast, or wake up from it without fully waking. Many people during a lifetime will experience this (without being narcoleptic). Pregnancy interestingly can trigger it, as can excessive tiredness & shift workers are also at risk due to the interference with their circadian rythms.
People can report believing they were abducted by aliens, demons, being attacked - a feeling of having your legs and arms pulled etc. It truly is terrifying.

Usually narcolepsy has an onset in adolescence & I know when I last worked in this field there was extensive studies being carried out to query an hormonal trigger. Though I understand that more males are narcoleptic than females. So to me that indicated less of a hormonal trigger... I have had one such episode in my life & it felt like I couldn't breathe. I was conscious but couldn't talk & really felt as though I would die as I believed I couldn't breathe... It was terrifying. I was working as a nurse & had worked for 24 hours without a sleep & I was exhausted... I am assuming this is why. But I can remember it as if it were yesterday it was so terrifying!

Cataplexy isn't what you describe with your bowel symptoms. Though patients I have read can have incontinence of urine & faeces during episodes of cataplexy. It is a sudden loss of muscle control. Legs collapse and usually the person is asleep. This happens during a conversation, driving, walking, working. When it happens frequently it is so disabling that people cannot work or function "normally" due to this. What you described above sounds classically IBS to me of course that is only an opinion & if you have been given a diagnosis of this it does fit...

It is interesting to note that you say you have had depression. I just want to add that if you are on antidepressant therapy this greatly affects your REM sleep pattern. People on antidepressant therapy are more predisposed to hynagogic hallucinations due to the fact that these drugs disrupt the "normal" sleep cycle. So people typically have less REM which makes them more sleepy and disproportions of stage 1, 2 and 3 sleep.

Anyway - if I think of anything else I will let you know!