Narcolepsy/Excessive Day Sleepiness

[Turkish Delight]

So i think i have narcolepsy or excessive day sleepiness. Narcolepsy is

Narcolepsy is a chronic neurological disorder caused by the brain's inability to regulate sleep-wake cycles normally. At various times throughout the day, people with narcolepsy experience fleeting urges to sleep. If the urge becomes overwhelming, patients fall asleep for periods lasting from a few seconds to several minutes. In rare cases, some people may remain asleep for an hour or longer.

I went to a fantastic ENT specialist yesterday and he diagnosed me with possible narcolepsy. I have suffered all my life. Wanting to sleep ALL the time and wherever.
He referred me to a professor at the Epworth, who i'll see in March. i knew it wasn't all in my head. I knew there was an illness for too much sleep!

The ENT specialist had a look in my nose and saw that i had a deviated septum in one side of my nose which will get operated on, but it isn't the cause of the sleep apnoea. He reckons its definitely narcolepsy. I am over the moon, knowing that it will get treated as sleep as dominated my life.

Any other narcoleptics??

[Lulu]

Yeah Xp is. But he is the kind that falls asleep standing up, has to keep moving to stay awake. Had a few head injuries over the years....

[Turkish Delight]

Like me. I need to be moving too Lu. Otherwise i fall asleep. I can't watch telly without sleeping, so i iron or cook as i watch.
Did he take any meds for it?

[Lulu]

Nah, he is supposed to be going in for a sleep study, but things have improved over the years. He can function fine (not like before), and as long as he goes to bed at a decent hour and he is woken at a decent hour.

He wouldn't take meds anyway. Too wary of them and he would be on them long term. He has learnt to live with it, because it's the way he was born. Like I said, things have improved HEAPS but it's been down to getting a good routine.

[Inanna]

Hi TD - I actually worked in a sleep disorders clinic for a couple of years & am trained to certicate level in this.

Narcolepsy is very very rare. It is also very very over diagnosed. To be diagnosed you need to have a sleep study. This is where you will go in to a centre overnight (most centres are hospital based). You will be wired up for an eeg, ecg, oximeter, pressure bands etc. You are filmed whilst you sleep and a nurse will watch you and report on her observations of your sleep and what your ecg/eeg etc are saying.

If you have sleep apnoea this is very likely why you are so tired. Sleep apnoea as you are probably aware is a condition where a person ceases to have respirations (apnoea) whilst they sleep at intervals. There is an apnoea and when o2 levels drop the patient usually (we hope!) arouses. This causes a loud snort or snore and then the process goes on. We can see from an eeg what stage of sleep you are in & how long you spend in each stage, how frequent your apnoeas are, how long they are etc. Sleep apnoea is very very dangerous due to the sleep deprivation. Due to the constant arousals patients never get regenerative sleep. Thus the tiredness. Patients fall asleep driving, eating, etc. With narcolepsy the sleep is more inappropriate. Pts will drop to the floor, sleep for only a second or two during a conversation etc.

I have only seen in 2 years at a very large centre 2 cases of narcolepsy. The others were ? narcolepsy but really were from sleep apnoea.

Good luck with your appointment - if you need any other info let me know...

[Yael]

I also believe from everything i have heard from DH sleep specalist that most people with excessive day time sleepiness are actually from having sleep apnoea at night and being so sleep deprived.

DH also can't in the evening stop moving or he will fall asleep = i found him last night sitting on the floor cleaning up the toys with his hand reaching out leaning on the edge of the toy box - he fell asleep trying to put the toy in.

He is a lot better then before he was diagnosed (then he would do it at like 5pm), but the night before he forgot to wear his CPAP mask and hence was bad the next day.

The dr said he has patients constanty fall asleep at traffic lights etc, one was a pilot who fell asleep flying a place (EEK!)

It is all from sleep apnoea, but not narcolepsy, i believe those are people who actually look like they are putting it on but literally just fall asleep randomly (like from Moulin Rouge)

How did your sleep study go?

Do we want the name of this sleep specalist? Or i can refer you to a good ENT surgeon who operated on DS.

[Lulu]

I wish xp would go in for the sleep study, but he just wouldn't . He has hit his head on benches, coffee tables, the fridge door when he drops down.

I'm not sure what they would find - as a child he would sleep ENORMOUS lengths. He had to be woken for feeds as a baby and once he was at school he had to eat dinner by 4pm because he would be asleep by 5 and had to be really roused awake in the morning. Once he slept through nearly 24 hrs after an excursion.

It looks like we will find the answers soon, he has started dropping again and goes all floppy on the floor. He is in for a CAT scan soon - hell knows what's going on. It happened the other night - asleep on the couch then woke up with shooting pains in his eyes, jumps around in pain then falls to the floor

[Turkish Delight]

Far out Lu he seriously need help.

I had my sleep study at home a few weeks back and got my results just 1-2 weeks ago. I have mild sleep apneoa, not severe enough to go on a CPAP, thank God. There was no real physical symptoms as to why i feel so sleepy during the day. Just the one deviated septum and that was not enough on its own to cause such sleep obstruction. So the first ENT just didn't know. he had no explanation. The second ENT said the same about the septum, but guessed it was narcolepsy as there was no other physical symptoms.

he asked if i dream a lot. And i said OMG, yes. All the time and they are so vivid. So he said that it was REM sleep, so the good sleep another reason which made him suspect narcolepsy as i was getting really good night sleeps and enough of it.

This has been happening throughout my whole life. Like Lu's XP, i was a baby that would sleep constantly and have to be woken for a feed. As a child, i loved long car trips as i would sleep all the way and never complain if we were there yet. I remember groaning about arriving at the destination!

My father and uncles also sleep alot during the day. Another sign was being able to sleep within 5 minutes of going to me. Hand up. That's me. I can sleep within 2 mins of my head touching the pillow.

I have fallen asleep whilst driving and found my car swerving towards the other side of the road.

yael - does your Dh have physical abnormalities with his nose/throat etc, which may cause Sleep apnoea?

I can't wait til 5th of March when i see the professor!

[Inanna]

My apologies TG I didn't realise you had already had polysomnography. (sleep study)
So, they really should be able to give you a fairly clear picture from that. It is very clear from a PSG when there is narcolepsy due to the rapid onset of REM & the frequent limb movements that are not due to apnoea events or RLS (restless leg syndrome). Though I suspect if they are concerned you will be asked to attend an overnight clinic for a polysomnograph. The usual course of events in diagnosing narcolepsy is to have an overnight PSG & then a MSLT (multiple sleep latency test). This is a recording of your tendency to fall asleep durin the day. It shows an objective measure of daytime sleepiness and the REM abnormality present in all narcoleptic patients. Usually narcoleptic patients have at least 2 but usually more sleep onset REM periods during the multiple sleep latency test.
As you probably have learned there are symptoms that form the narcolepsy pentad. These are cataplexy which briefly is a sudden but transient loss of muscle control usually triggered by strong emotions. This is present in at least 75% of narcoleptic patients. Hypnagogic hallucinations which is a distorted perception occurs in roughly half of narcoleptic patients it occurs when a person goes from sleep to wakefulness. This is usually described as bizarre and sometimes terrifying. The other is sleep paralysis where there is an inability to move or talk and it can last seconds to minutes. Sometimes people feel like they can't breathe during this but on polysomnography they are shown to be breathing it just feels like they are not. (to the patient)

Usually with narcolepsy there is a very disturbed sleep pattern so during PSG the practitioner will note frequent movements and awakenings not necessarily caused by apnoeas.

To diagnose narcolepsy according to the "International Classification of Sleep Disorders" a patient can be diagnosed based on only clinical symptoms only if both cataplexy & excessive day time sleepiness is observed. (using PSG)

If cataplexy is not present (have you had this TG? - they would have noted it) a diagnosis is made on the PSG findings.

How this looks on PSG is that the 1st REM sleep period in a healthy person is roughly 80-120 minutes after the onset of night sleep. In narcolepsy this initial REM period occurs within 15 minutes.

Narcoleptic patients will typically sleep within 30 seconds of lying down. (sometimes a little longer)

The other part of narcolepsy that I find particularly fascinating but which is incredibly disturbing for the patient and those around them is automatic behaviour without awareness. Narcolepsy has been used as a reasoning behind homocide, suicide and other violent attacks...

I hope very much that you don't have this as it's a very very disturbing condition. Usually treatment is required using drug therapy - typically stimulants (Ritalin is often used) MAOI's & other antidepressants. 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.

Good luck with your appointment. I did some work at Epworth years ago now... I think it was 1996!

Lulu the falling down your X is displaying does sound narcoleptic... A CT of the head is obviously important to rule out any shadows etc. I hope he is seen by a respiratory physician/ent as well... He really does need to see a sleep specialist - often they will be seen by a nurse first to have an array of tests and interviews and then the specialist will see them.

TG a deviated septum is a cause of obstructed sleep apnoea so it's great that you are having it corrected. Even mild sleep apnoea can play havoc with ones energy levels and daytime sleepiness.

Good luck on your journey & don't forget to let us know how you go.

[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!

[Lulu]

The other part of narcolepsy that I find particularly fascinating but which is incredibly disturbing for the patient and those around them is automatic behaviour without awareness. Narcolepsy has been used as a reasoning behind homicide, suicide and other violent attacks...

Put the screwdriver down TD - don't forget it's very very rare.
I find that part fascinating too Inanna - I remember and old case I read back from I dunno the 1800's or something, was that was they called somnambulism? (sp?) The poor fella ended up spending his nights in a locked room....

Hypagognic hallucinations - oh far out they are TERRIBLE.( Now I know what it's called) I suffered from them for years to the point all my friends knew to shake me fully awake and talk to me. It started with horrific nightmares but I "trained" myself to wake up from them but Oh NO, my stupid brain wanted me to cop it so it got to the point I would dream I woke up and fell back asleep to the same horrors. Then I would dream I had woken up and walked around the room to make sure I was awake...then fall back into the horrors again.
Even though I couldn't move I managed to eventually breathe in puffs - and therefore that was the signal to shake me awake . Sometimes I could manage to lift my arm and slam it down on xh...and break the paralysis.
After awhile I stopped having them and it hasn't happened for about 6 years now PHEW.

Enough about me though - from what you have said here Inanna I'm not sure about Narcolepsy. When xp sleeps he does not move. He has woken up in alot of pain from his neck/shoulders being on a funny angle, I was always worried about him falling asleep twisted in a funny position and doing nerve damage.
Hope he gets the CAT scan soon....

[Yael]

TD - my husband has a very narrow airway, and that combined with a small, set back lower jaw is the primary cause of his sleep apnoea.

He had a soft tissue xray done of his throat, and it was around 1/2 the size of a normal adults when standing, and when we sleep our muscles relax and it narrows (especially made worse by being very overweight.. but my husband was underweight when diagnosed, so it took the xray and sleep study for drs to believe he had sleep apnoea, and not just bad snoring)... so basically he had no chance of not having apnoeas.

Have you had xrays done of your throat etc?

Sorry if i sounded like i was doubting the narcolepsy thing, i didn't realise that that was what the dr actually told you. When are you seeing the proffessor?

Deb - speaking of strange things and sleep, for years and years now people tell me they wake me up un the night and the morning and i will sit up with my eyes open and have a conversation with them, but in the morning i will have no recolection of it what-so-ever... i talk in my sleep a lot also. I never used to beleive my friends (they used to do it to me on school camp to ask me things about boys etc, and i thought they were making it up), but it used to happen with my dad waking me up in the morning with a glass of OJ for school, and 2 hrs later i would wake up for real and find a glass of OJ next to my bed and dad would tell me i had a proper convo with him.. DH says i do it to..

Is that strange?

[Turkish Delight]

Wow Yael. That is freaky my dear!
I have slept walked a few times, i always talk in my sleep and i snore so bad!

I haven't had an xray of my throat as yet. The second ENT surgeon said that i have nothing physically too wrong that he could pinpoint which could cause mild sleep apnoea and my excessive daytime sleepiness.

I have overbite, so my lower jaw sits just a tad back from my upper jaw and th second ENT specialist said that could be a reason of my gagging/choking at night when all the muscles relax and my jaw falls back when asleep. He didn't mention the dental splint, like the first ENT surgeon had (no way am i having that splint in to keep my jaw forward!). My soft palate and tonsils are okay, so there is no blockage in my throat either.

I had an appt with my booby surgeon yesterday and i mentioned it the septum thing to him as i want to get plastic surgery on my nose too at the same time, and he said that in most cases a deviated septum doesn't need to be corrected as it really isn't doing too much damage, so he gave me a referral to get a CT scan of the face done, but he was more than happy to do it

Oh no, the second ENT mentioned that it is possible narcolepsy with all his findings and the stuff i told him about the history. He did say that anti=depressants can cause excessive sleep too, but i told him that my symptoms began waaaaaaaaaaaay before then.

I see the Professor on March 3rd. I can't wait.

[Yael]

DH also has a minor overbite, and normal tonsils etc, but the thing is that everything looked normal before the x-rays, and nobody believed him about the sleep apnoea, until he demanded a referral to a sleep specalists and then when he saw that dr he demanded a sleep study (after which he went back with the xrays and the sleep study results, and they were like, oh golly, you do have really bad apnoea!)

So i'm saying everyone might tell you that it looks normal, but xrays to help, and trust your instinct, you know it isn't 'normal', so keep going until you find somebody who can help you.

[Turkish Delight]

I am so over it. I haven't had a good night's sleep for the past 3 nights as DD is not sleeping well atm. Lack of sleep can most people of the edge, but for me it is 10 times worse. I am so sleepy all the time. I find that it is exacerbating my depression too. I tell DH that i need to sleep in the arvo after work and he cracks it. I tell him that i have an illness and he makes fun of it by saying "well you have all these tests and reports and drs to say that you can sleep a lot"

I need sleep. I am really getting quite irritated that i can't sleep in the arvo and i am so sleepless. Sleeplessness really wears me out. I become psycho *****!

[Life is Good]

Oh TD, what you are going through sounds awful. I am glad you have that appointment booked and I hope you find the answers you need. I can well sympathise with your daytime sleepiness and how it gets totally out of control when the little ones keep you up!

As it happens I am booked in for a sleep study on Friday for suspected Periodic Limb Movement Disorder. I think I have had it all my life but now that I have had perpetual sleep disturbance since the boy was born, I am also really taking strain. I know it isn't the same, but trying to operate when you have have a night of disturbed rest because of little ones AND a medical condition is just the pits . Big - please keep us posted on any developments x

[Turkish Delight]

thanks babes. GL to you too.

I hate when you don't get the support from family and friends just because the illness you are suffering isn't visible ITMS.