Conditions
Narcolepsy
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.
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hi i am a 35 year old female, i have been diagnosed with narcolepsy and a couple of sleep parasomnias and cataplexy. it took several years to be diagnosed and many many different drugs trialed it started when i was sleeping almost constantly. however when i sleep i appear to act out my dreams, thoughts and feelings... (as reported from my long suffering partner who also spent many evenings on the couch) i will laugh, cry, shout, scream, call on the dog, even havefull conversations!! i have had a spinal tap done, 2 sleep studies and also had a movement watch on for a few weeks to record my restfulness or lack of it. thankfully i was referred to a narcolepsy sleep specialist at st James hospital in middlesburgh. where the specialist even diagnosed my restless leg syndrome which is also a down side to narcolpepsy! i am now on modafinil and dexamphetamine which has been a godsend to my daily routine and assists my daily wakefulness, i am however also waiting for funding for xyrem as its not widely available in Scotland. as i have been told my condition affects both my rem sleep and my non-rem sleep. (basically i have no natural body clock) and this drug i have been told is the only one strong enough to give me a 'quality' sleep. i have found the more open you are to family friends and employers the more understanding they are about it. be open about it and certainly dont be embarrassed or shy about it. good luck folks.
I am 86,& have had narcolepsy & cataplexy for more than 50yrs.Originaly I spoke of collapse& un conciousness rather than sleep, as a result I was diagnosed as having "anxiety neurosis".The drugs prescribed made me so ill that I stopped takig them, I am still not on medication.To overcome the problem of finding an employer who was sypathetic to my condition , I eventually had to open my own business.This illness requires a lot of understanding & patience from loved ones.
Hi, I'm a 21 year old female and I'm a life model. I've recently found that I cannot stand for 15 minutes or longer as I pass out straight away. Its happened three times, also, I get very cold feet which turn a bluish colour, go very cold and start to tingle. I then get a cold sweat and then I pass out. I have cold feet on a regular bases and struggle to keep them warm unless I rape them up in a duvet. My other two jobs are all standing, but I'm more active in them. I don't know if this is down to low blood pressure or not?
Prolonged periods standing with minimal movement can provoke collapse - it used to be seen in the guardsmen who stand to attention without moving outside Buckingham Palace (London, UK etc), but they have been taught to contract their calf muscles to encourage venous return. Dehydration is another big contributor. The feet thing may be Raynaud's phenominon - very common in women. In either case, if it's troubling you the only sensible thing to do would be to see your doctor as there are lots of questions that would be good to ask to exclude more serious causes of collapse.
Hi I am still at school and sometimes start to nod off to sleep during class and fall in and out of sleep it is normally about 3 minutes before I realise to wake up. I don't go to bed too late and don't feel tried at all also this happens on 2 of 3 occasions a day and the rest of the day I'm fine. I don't feel tried but I really struggle to keep my eyes awake and loose focus in my eyesight while trying to stay awake. I also suffer from astigmatism and wear glasses so I don't know whether this helps. It is so embarrassing when you are sitting next to someone in class and you start to fall asleep. Please help!
I am a 45 year old woman have had a blood test to find out that my vitamin D level is 19. I have been prescribed alfacalcidol. Do you think that will do the trick?
Hi, I am 14 years old, I keep falling asleep everywhere. Anytime. Especially during class. Because of this my grades have dropped. When asked why, I would have no idea how to answer because no one understands what I go through. They just look at me as if Im crazy. I dont know how to explain this to my parents either. This has been going on for years, but its been getting worse. Nowadays when I fall asleep I just have no idea how to stay awake, there isnt anything i can do no matter how much I want to stay awake. my lack of concentration is extremely disappointing. Please help me understand what is happening here.
hi im 21 years old im just wondering if there could be something wrong with me as i always feel tied some days i can manage to keep my eyes open when feeling sleepy but other days i have to have atleast to naps in the day 1 of them is not long after i wake i have 2 young children and dont feel like i have any energy to do anything in the day
I've never randomly fallen asleep but I do fall asleep within minutes of lying down. I turned 19 last month and since I was 14 I've experienced sleep paralysis. I've been having it alot, and I think I experience OBEs and I have flew, it's really lucid and I'm getting scared that it could be the start of narcolepsy. It's quite alot, and my sleep pattern is regular. I can't speak when it happens and my mums said she's heard me making a crackling noise in my throat, which happens when I try to scream. Should I ignore this or tell someone?
Hi.. I have been researching my own condition and Narcolepsy was one of the issues I considered too. Do you have muscle weakness (Cataplexic drops)as well? That is a real good indicator as Cataplexy is often diagnosed as a symptom of Narcolepsy. The thing to do is get a referral to a Neurologist who will order particular tests...which will eliminate other more serious conditions and make an accurate diagnosis first time. It may be that you go to a sleep clinic too so that sleep patterns and REM can be monitored. Narcolepsy can be treated/managed....Best of luck
Hi before I was first diagnosed with narcolepsy I had exactly the same experiences.I couldn't believe that it was not real. I could feel the wind rushing around my body as I what I thought was actually flying.. Also the same paralysis occurred . Even though I was trying so hard to speak or even move only my eyes were working. I am not a doctor but you MUST go and see your gp and tell him/her you think you may have narcolepsy. The tests are painless so there is nothing to be scared of. Despite what the site says about causes of Narcolepsy they are wrong and any suggestion that this is genetic or from life changing events is totally false. Narcolepsy is an anti-immune illness. Basically the body attacks the cells that control the sleep/wake part of the brain. I have suffered from Narcolepsy for 25 years and have researched my illness like most of us have to because info is hard to find in the UK. Also those suffering from cataplexy (muscle drop/weakness) I take Xyrem its ghb or date rape drug. Controlled substance. My cataplexy has improved 95%. It is very expensive and I at the time of being prescribed (3 years ago) was one of only 60 people in the country on this drug. I hope this helps you. Good luck
hi im mark i want to now if anyone can help with a condition i have which is been diagnosed as pseudo seizures this happens to me sometimes with out warnings and ive had numerous of tests but no answer yet please could i get some help of ur doctors or advice of what to do next ive had this for 12 years now they say its not in anyway epilepsy but it gets me down and i dont feel safe sometimes with it thanks mark
I'm 14 years old and I have been experiencing problems with sleep. One second I would be fine the next I would start to fall asleep and I sometimes have about 7-8 naps a day. they sometimes occur in class and I have to literally hold my eye lids open! this has been getting worse lately and Im unsure if I have a sleeping disorder like narcolepsy. I checked on the Internet and I had a lot of the other symptoms like lake of concentration. do I have narcolepsy??? please help!!!
It would be a good idea to see your gp, i was falling asleep at work alot and one night whilst my partner and i stayed at her parents for the night; her mother noticed that i would snore loudly and hold my breath for short periods. I went to the doctor who refered me to a special respiratory clinic where i was diagnosed as having sleep apnea. I have a machine now that the clinic gave me which gently falses the airwaves open. It change my life, i have so much energy now
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