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Conditions

Narcolepsy

The problem with narcolepsy

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Cocooned in our warm bed covers, it’s a wonder we ever choose to leave the wondrous ‘Land of Nod’ in the mornings. But for some people, even when awake, that land is never too far away and could suck them back in at any time. Narcolepsy is a neurological condition associated with a fault in the mechanisms in the brain which control wakefulness and sleep. This commonly causes people to have an irresistible tendency to fall asleep at any time of day, often at inappropriate times, such as eating or in the middle of a conversation. Most people experience the onset of symptoms between the ages of 15 and 30, but it’s only since the late 1990s that great strides in the understanding of this condition have been made.

The cause of narcolepsy is unknown but recent studies suggest that it may be a genetic disorder. Medical research has also linked narcolepsy to a imbalance of chemicals in the brain and to major life events. For example, some sufferers have begun to show symptoms of narcolepsy days or weeks after events such as pregnancy, periods of psychological stress, sudden changes in sleep patterns and head trauma. Contrary to popular belief, narcolepsy is not caused by depression, seizures, fainting or simple lack of sleep.

The symptoms can vary from being mild to very severe and can include ‘sleep attacks’, where the sufferer falls asleep suddenly, excessive daytime sleepiness (EDS) and muscle weakness when responding to emotion e.g. laughter. Other reported symptoms are hallucinations, sleep paralysis, difficulty concentrating and restless sleep. These symptoms normally begin to develop during adolescence but it can start earlier and in rare cases even in middle-age. While narcolepsy does not usually cause physical health problems, the affect on a sufferer’s personal and private life can be very significant. School and work can become difficult as sufferers can be perceived as being lazy. Relationships can also come under strain as a result of excessive drowsiness so it is important to talk through how the condition personal affects those suffering with the condition with family and friends.

Unfortunately, there is no cure as yet for narcolepsy but there are a number of treatments available to control the symptoms. These include taking frequent day-time naps, having a healthy and active lifestyle, taking medication and using prescribed stimulants to combat drowsiness. Sticking to a sleep schedule can help, and it is advisable to avoid using nicotine and alcohol as these have been proven to worsen symptoms.

What the Men in White Coats Say

Comments and Questions

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I am not sure if this is narcolepsy ad would like to inquire about it. The other day i was watch an episode on tv that was 20 minutes long. However at some point during that episode my mind went blank almost and the next thing i remember was the episode being only 17 minutes in but the clock had gone from 3:30 when the episode started to 5:30 yet the episode was only 17 minutes in. And on another note recently i have been waking up at random times in the night. This hasn't happened before so i wasn't sure if it had some relevance to the topic.I am a 15 almost 16 year old male





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I'm 26 years old the last few months I am having problems with weird sleep problem. I will be talking right in the middle of a conversation with my husband and like a switch be out (sleeping?) this can last a long time or very short periods it's not a normal sleep I think of things while in this daze really hard random stuff while in the trance but when I wake up I don't remember what I had been talking about before falling asleep nor what I was thinking about while dreaming. I don't realize I have even fallen asleep. I also have A.D.D I cannot control my dozing off





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Hi. Im in the process of being tested for narcolepsy. In the past my excessive daytime sleepiness and fatigue were blamed on CFS but recently new symptoms such as seeing aspects of my dream during wakefulness, sleep paralysis, insomnia, desperately needing to sleep in the day which will slowly get worse until I do. For example ive woken up with food in my mouth where id fallen asleep whilst eating dinner, fallen asleep talking to someone, woken up covered in water where id fallen asleep whilst drinking a glass of water. I dont appear to have Catoplexy when you suddenly fall asleep and collapse and my symptoms dont appear to be related to any emotions of activity. Ive also had all relevant blood test which have come back fine. I do have a very rare recessive genetic condition called Vogt-Koyanagi-Harada syndrome. My immune system attacks and destroys pigment cells throughout my body. When not in remission it can cause retinas of both eyes to detatch, repeated non-viral meningitis and encephalitis, vitiligo, destroys the hairs of inner ear, can cause brain damage. Im on of around 15 people in the UK with it. VKH can mimic other illnesses such as Crohns except on inspection looked like no other Crohns they had seen, meningitis but its caused by VKH inflaming the lining of spinal cord and brain. Naturaly I cant help but wonder if this is the VKH at play in some manner? Im wondering if it is found that I do have Narcolepsy just what forms of treatment might be avaliable to me? Many thanks! X





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I'm 16 Turing 17 shortly, on my summer holidays or weekends lately I have been going to bed between 12:30-4 in the morning and getting up between 1-3pm 😢 even going to bed for nearly a week going to bed at 10 pm I still get up at 2 pm. My mom and dad think I'm lazy although I tend to get about 1-3 hours of physical activity including, rugby, football and (GAA) hurling. I'm afraid to ask my mom to go to a GP cause I always have a problem with me. Money doesn't seem to be growing on trees lately





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Any theories or home remedies ?

Hi I'm 25 yrs old, iv been falling asleep even when I'm not feeling tierd, it's happened a few times now, today was embarrassing I was at speach therapy with my daughter and I sit at the side of the table and watch and listen to her and speach therapist within 10mins my eyelids started closing and feeling really heavy (I wasn't feeling tierd at all) I struggled to keep them open, the more I tried the more my eyes were rolling and my head dropping forwards, I was really trying to listen to my daughters progress but this was getting the better of me! I forced my head so I could look around to try and gain wakeness but my head just flopped around my shoulders and eyes all fuzzy (it was like I was drunk out of my head!) I was like this for 15-20mins struggling to keep my eyes open! After session was over and I started walking my body felt heavy as if it was sleeping after a few seconds of walking I was back to normal and left feeling like what was all that about as I'm not tierd I'm completely wide away like I was before this happened. This has also happend whilst in car when hubby is driving and also it's happened whilst I was in middle of having my wisdom teeth out at the dentist and now it's bugging me, is there anything I can take to prevent this from happening?





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Can someone 92 years of age develop Narcolepsy ? She has never shown any signs of it until now .





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According to Edgar Cayce in his patient readings Structural lesions affect the nervous system can originate from a glandular disturbance slowing the circulation of the superficial system . Suggest you read Edgar Cayce on Narcolepsy he suggests Atomodine and Castor oil packs (Atomodine is Iodine with extra atoms) its many years since I read the Cayce files but I know it is different from just iodine

Recently I've noticed a huge change falling asleep within minutes anytime of day even close calls while driving of course scary even if I get plenty of sleep also it seems like I have nerve shakes in my face and feel like my knees get weak like a seizure I'm 38 and none of this was normal to me it started around 8 months ago am I Marco or is this a sign of something else





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Oh the never shakes part was when I laugh

You need to see your doctor and set up a sleep study it will give you your answer. Do not drive if you feel as if you could fall asleep, for your safety and the safety of others

I used to have insomnia until I left the hospital with my 3rd child. I couldn't sleep there. I then had a dtap vaccine there. ..ever since I've been extremely tired. One night I woke up hanging off my bed. a could this be a bad effect of the dtap vaccine?





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Hi my 6 year old son for 2 years now and getting worse has been falling asleep at the most random times,like while eating talking and playing with friends he fell asleep on a rubber boat in a swimming pool on holiday this year with lots of kids splashing around him he dosnt sleep well at night and binge eats a lot he also would have really bad nose bleeds day and night even while he sleeps any help wud be greatly appreciated worried mother





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I used to be like that when I was young. We used to go to Nascar & Indy races when I was his age and even fell asleep there. Look up narcolepsy without cataplaxy. It's good you are trying to figure it out at a young age. I was in my early 20'S when diagnosed. I couldn't stay awake in school. Grades bad because I wouldn't concentrate.. too busy trying to keep myself awake. I do not sleep well either.. my quality of sleep is poor. Good luck!

I used to be like that when I was young. We used to go to Nascar & Indy races when I was his age and even fell asleep there. Look up narcolepsy without cataplaxy. It's good you are trying to figure it out at a young age. I was in my early 20'S when diagnosed. I couldn't stay awake in school. Grades bad because I wouldn't concentrate.. too busy trying to keep myself awake. I do not sleep well either.. my quality of sleep is poor. Good luck!

Hi there, I'm 32 yrs old and since the birth of my daughter nearly 4 years ago I have had really broken sleep at night and feel totally knackered all day. I fall asleep in the day all the time, I do things without realising I'm doing it sometimes, for example I could be typing a text message and not remember finishing it! I even fall asleep in mid conversation! I sometimes fall to the ground if I am surprised, laugh too hard or I get scared. I have been to my GP and was sent to have MRI and electrode test to rule out epilepsy, which it did! Then I was referred to a neurologist who sent me for an overnight test and MSLT's at the Hospital, but they said the tests came back negative and it must be down to stress! Which is rubbish coz I'm not stressed like that at all! I went back to the GP and she said I need a better sleep routine so I did what she said and nothing changed then she gave me some sleeping tablets and nothing changed again! Then said just said that I have insomnia and there was nothing else she can do!! I've not been back to the GP for this for 18 months now because of the way she made me feel! I want to know if anyone else has had the MSLT's come back negative but had them done again and they come back positive! Does anyone think I should ask for a referral to a different sleep centre and specialist! I've got two kids and I feel like a rubbish mum coz I really can't do other mums do coz I'm knackered all the time!! Any suggestions would be good thanks!!





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Hello Katie.... I recognize all these symptoms you are mentioning. I had these episodes at the onset of my narcolepsy and sleep apnea at the age of 25 years old. If I could place a bet I would wage my last dollar to say you are Narcoleptic....It may even be sleep apnea...or both. I hate telling u this....its not good news....but u need to be aware of the possibilities because your life...and if u drive....the life of others may be in danger. It took 4 sleep studies here in the Texas And at 3 different VA Hospitals for the sleep specialist to come up with a diagnosis. The test are not easy....I know that with certainty. It took me almost 6 or 7 years to get my diagnosis and treatment to begin. I am a US Veteran so I had to wait my turn because my insurance is only covered at the Veterans Administration Hospital. Hopefully, your's will be a better experience. Yes, see another doctor at a different hospital to set up your sleep study. One of my test had to be done over because the technicians made so many mistakes. You have to stay on these people. Do your research before you go in. This is your life. Dont have them half stepping on you. I promise when u learn how to manage it....It will get better. And whatever you do....Dont ever give up! My quality of life may be considered poor due 2 two sleep disorders and depression....which I fight daily....But I live my life to the fullest. I served my country with no regret...and now Im a teacher....And I kick b**t everyday....and enjoy my life to the fullest. My heart is tired and I know its aging fast, but I want my family to always know when Im no longer here that I was Happy and fulfilled!!! I was a single mom with this disability and 2 small kids at one time as well. Now they are 14 and 17...and my 17 yr old is driving and takes over the wheel when Im too out of it to drive. God also provided with with a loving, understanding family...my mom and sisters, brothers, friends...and my ever so loving and supportive husband. Of course, the didnt always understand what was going on with me until I explained and encouraged them to do the research. I promise....it gets easier...you'll see. Good luck. God Bless you....Always.


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Content supplied by NHS Choices

Narcolepsy is a chronic sleep disorder that disrupts your normal sleeping pattern. It can cause you to fall asleep suddenly, without warning (known as "sleep attacks") and also tends to make you feel excessively drowsy during the day time. Read More »

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