taniaaust1
Senior Member
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- Sth Australia
My night sleep time is getting better and better .. (Im getting to sleep about 11.30-12.30 with 3mg melatonin). This morning I actually almost woke up with sun (6.50am), feeling refreshed...but suddenly fell asleep 50 mins later. Woke up after a bit feeling okay again.. then suddenly fell asleep again (this happened 3 times in a matter of a couple of hours)
What is sucking now ... is since my insomina is now really good and under control... Ive now been having a heap of "sleep attacks" which are obviously some kind of sleep (brain?) issue rather then being caused by me feeling tired. They come on extremely suddenly.. eg feeling great one moment but have irrestible need to go to sleep due to "sleepy tiredness" the next (not physical tiredness, no exhaustion).
So this morning I started researching "sleep attacks" and from what Im reading it appears ive now developed Narcolepsy (Narcoleepsy is classified as a neuro issue).
quotes below from wikipedia
When one of these sleep attacks take place.. I do slurr my speech, my vision does blur... and I tend to dangle my head due to needing to sleep so like start to nod off.. basically I start to fall asleep while doing whatever Im doing. (this thing is also a post exertional symptom for me eg happens day after shopping...but one which I get without any exhaustion)
umm interesting that a "virus" part
sighs.. I do have circadian rythm issues and hence why I need meds for sleep (melatonin and at times other meds too). All this time trying to get my sleep hours normal and I finally manage to do it and now this (feeling frustrated about it.. I DO NOT want to have to sleep during the day).
Usually when I have a sleep attack .. if I give in to the attack.. I do then usually wake up completely refreshed after a short time but then can be hit with another one.. a bit later.
The waking dreams I have= hypnagogic hallucinations
thou I do remember it.. I have been getting noticable automatic behaviour. I posted recently on a medication thread about recent issue I had when taking my drops.. went into automatic behaviour (not a completely aware state) and keep on dropping my seleium drops onto my tongue .. I came too and realised I'd put 10 in my mouth instead of 6 due to this autopiloit state Ive sudden.y gone into (I'd keep counting and counting during that incident as it was all part of the autopiliot..fortunately i did come too as otherwise i may of taken the whole bottle).
Thou I seemed to possibly have had narcolepsy at times in the past with the ME.. I put the sudden falling asleep down to due to just sheer ME exhaustion..cause i was like beyond tired and always like that
To have this now suddenly coming in again (I havent had sudden falling asleep issues for years), when the ME exhaustion and tiredness hardly exists for me no more.. Well it truely sucks. It sucks that I develop problems faster then I can solve them. Looks like this will be yet another thing I need to take to my specialist to try to sort out (probably wont get time thou as next appontment we need to sort out my latest abnormal blood tests and any new test results).
How do people keep up with this illness? Im seeing my specialist once a fortnight and it isnt enough, we cant keep up.
What is sucking now ... is since my insomina is now really good and under control... Ive now been having a heap of "sleep attacks" which are obviously some kind of sleep (brain?) issue rather then being caused by me feeling tired. They come on extremely suddenly.. eg feeling great one moment but have irrestible need to go to sleep due to "sleepy tiredness" the next (not physical tiredness, no exhaustion).
So this morning I started researching "sleep attacks" and from what Im reading it appears ive now developed Narcolepsy (Narcoleepsy is classified as a neuro issue).
quotes below from wikipedia
Narcolepsy is a chronic sleep disorder, or dyssomnia, characterized by excessive sleepiness and sleep attacks at inappropriate times, such as while at work.
It often manifests as muscular weaknesses ranging from a barely perceptible slackening of the facial muscles to the dropping of the jaw or head, weakness at the knees, or a total collapse. Usually speech is slurred and vision is impaired (double vision, inability to focus), but hearing and awareness remain normal. In some rare cases, an individual's body becomes paralyzed and muscles become stiff
When one of these sleep attacks take place.. I do slurr my speech, my vision does blur... and I tend to dangle my head due to needing to sleep so like start to nod off.. basically I start to fall asleep while doing whatever Im doing. (this thing is also a post exertional symptom for me eg happens day after shopping...but one which I get without any exhaustion)
Narcolepsy is a neurological sleep disorder. It is not caused by mental illness or psychological problems. It is most likely affected by a number of genetic mutations and abnormalities that affect specific biologic factors in the brain, combined with an environmental trigger during the brain's development, such as a virus.[3]
umm interesting that a "virus" part
Some people with narcolepsy have a nocturnal body clock and are helped by selecting an occupation that properly coincides with their body's natural sleep cycle (such as sleeping in the day and working at night). This allows sufferers to avoid the need to force themselves into the more common 9 to 5 schedule that their body is unable to maintain
sighs.. I do have circadian rythm issues and hence why I need meds for sleep (melatonin and at times other meds too). All this time trying to get my sleep hours normal and I finally manage to do it and now this (feeling frustrated about it.. I DO NOT want to have to sleep during the day).
A person with narcolepsy is likely to become drowsy or fall asleep or just be very tired throughout the day, often at inappropriate times and places. Daytime naps may occur with little warning and may be physically irresistible. These naps can occur several times a day. They are typically refreshing, but only for a few hours
Usually when I have a sleep attack .. if I give in to the attack.. I do then usually wake up completely refreshed after a short time but then can be hit with another one.. a bit later.
This has several consequences. Night time sleep does not include as much deep sleep, so the brain tries to "catch up" during the day, hence EDS. People with narcolepsy may visibly fall asleep at unpredicted moments (such motions as head bobbing are common)
The classic symptoms of the disorder, often referred to as the "tetrad of narcolepsy," are cataplexy, sleep paralysis, hypnagogic hallucinations, and excessive daytime sleepiness.[7]
The waking dreams I have= hypnagogic hallucinations
Automatic behavior means that a person continues to function (talking, putting things away, etc.) during sleep episodes, but awakens with no memory of performing such activities. It is estimated that up to 40 percent of people with narcolepsy experience automatic behavior during sleep episodes
thou I do remember it.. I have been getting noticable automatic behaviour. I posted recently on a medication thread about recent issue I had when taking my drops.. went into automatic behaviour (not a completely aware state) and keep on dropping my seleium drops onto my tongue .. I came too and realised I'd put 10 in my mouth instead of 6 due to this autopiloit state Ive sudden.y gone into (I'd keep counting and counting during that incident as it was all part of the autopiliot..fortunately i did come too as otherwise i may of taken the whole bottle).
The other symptoms may begin alone or in combination months or years after the onset of the daytime naps. There are wide variations in the development, severity, and order of appearance of cataplexy, sleep paralysis, and hypnagogic hallucinations in individuals. Only about 20 to 25 percent of people with narcolepsy experience all four symptoms. The excessive daytime sleepiness generally persists throughout life, but sleep paralysis and hypnagogic hallucinations may not. A rare subset of narcoleptics also experience heightened senses of taste and smell supertaster, phenomenon.[citation needed]
Although these are the common symptoms of narcolepsy, many people with narcolepsy also suffer from insomnia for extended periods of time
Thou I seemed to possibly have had narcolepsy at times in the past with the ME.. I put the sudden falling asleep down to due to just sheer ME exhaustion..cause i was like beyond tired and always like that
To have this now suddenly coming in again (I havent had sudden falling asleep issues for years), when the ME exhaustion and tiredness hardly exists for me no more.. Well it truely sucks. It sucks that I develop problems faster then I can solve them. Looks like this will be yet another thing I need to take to my specialist to try to sort out (probably wont get time thou as next appontment we need to sort out my latest abnormal blood tests and any new test results).
How do people keep up with this illness? Im seeing my specialist once a fortnight and it isnt enough, we cant keep up.