News archive
Hypocretin nasal spray may not be a cure for narcolepsy but it's a step forward.
A preliminary report on the use of hypocretin nasal spray was presented at a recent European Sleep Society meeting. (read more)
Mechanism of REM Sleep Paralysis
Recent information has been published which throws light on the mechansim by which muscle paralysis occurs during REM sleep. (read more)
New light in Pandemrix and Narcolepsy
Markku Partinen and his team in Finland have just published a new study on the link between Narcolepsy and the vaccine given to prevent H1N1, Pandemrix. (read more)
Is narcolepsy a risk factor for diabetes?
Obesity is common in narcolepsy and an increased prevalence of Type 2 diabetes has also been reported. However, a recent study has suggested that narcolepsy is not a risk factor per se for diabetes. (read more)
High fat diet and narcolepsy
The number of people who have mentioned how a high fat “Atkins” type diet helped with their narcolepsy is legion. However, recent reports have suggested that a high fat diet reduced the ability to sleep at night. (read more)
Xyrem and Alcohol
In a timely warning, the USA's Food and Drug Administration cautions the consumption of alcohol and other depressants with Xyrem. (read more)
Inside Out West and North-West BBC1 Monday 12th December 2011
We have had lots of concerned people contacting the charity after seeing the programme. From the emails received we have drawn together a list of the seven most asked questions and provide, what we think, are honest answers. We hope this helps. If you have any other questions please do contact the charity in the usual way. (read more)
All you need to know about modafinil and the Pill
There has been a lot of concern about the effectiveness of the birth control pill and modafinil. It seems that some GPs are unsure about the effects and are giving out conflicting information, not only to what people may have read but what they are told by specialists.
Narcolepsy UK decided to get a definitive answer and contacted not only the manufacturers but also The Faculty of Sexual & Reproductive Healthcare (part of the Royal College of Obstetricians and Gynaecologists).
The answers are clear. Modafinil may reduce the effectiveness of several types of hormonal contraceptives and not just oestrogen-based ones. (read more)
Arousal effect of bright light mediated by hypocretin
Bright light arouses us. Bright light makes it easier to stay awake. Very bright light not only arouses us but is known to have antidepressant effects. Conversely, dark rooms can make us sleepy. It's the reason some people use masks to make sure light doesn't wake them while they sleep.
Now researchers at Los Angeles have identified the group of neurons that mediates whether light arouses us — or not. (read more)
Lack of effect of IVIg in narcolepsy
Some early papers suggested that the administration of intravenous immunoglobulin reduced the severity of narcolepsy. However, recent studies have failed to confirm such a beneficial effect. (read more)
Narcolepy and craving for sweet foods
It all started on the Narcolepsy UK forum; a member was discussing how they craved sweet things on a regular basis and wondered why. There may be a scientific explanation. (read more)
Nicotine and Narcolepsy
One of the most common sights at narcolepsy meetings and conferences remains the number of people with narcolepsy who “stand in the street of shame” for a quick smoke. (read more)
Narcolepsy does not significantly shrink your brain
Investigators have discovered that, in narcoleptics, whatever triggers the loss of hypocretinergeric cells, attacks just those cells and not other areas of the brain. (read more)
Protein keps us thin and awake
A new study has found that protein and not sugar activates the cells responsible for keeping us awake and burning calories. (read more)
New research on the biological clock
Researchers have discovered what starts up the biological clock each day. (read more)
Obesity research and narcolepsy
A spin-off from research in obesity may be a treatment for narcolepsy. (read more)
EMA recommends restrictions on Pandemrix
On 21st July 2011 the European Medicines Agency (EMA) recommended restrictions on the use of Pandemrix.
Narcolepsy UK were indundated with emails and telephone calls requesting further information. Here is our guidance (read more)
Myelin disorder may be related to some types of narcolepsy.
Disorder in myelin may be responsible for familial narcolepsy a new study suggests. (read more)
Don't want to get narcolepsy? Then have a flu vaccination!
A recently published paper has suggested that narcolepsy can be triggered by flu infection.(read more)
A breakthrough in narcolepsy? Probably not!
There have been several articles published in the mainstream press recently about narcolepsy and how it can be “cured”. (read more)
Pandemrix and narcolepsy.
The European Medicines Agency (EMA) said Pandemrix should only be given to children and teenagers at risk of H1N1 flu if other jabs are unavailable. (read more)
Sleepiness and eating behaviour.
It has long been recognised that people with narcolepsy also have problems in other areas; one of them seems to be appetite control. A new study may explain why. (read more)
Driving and narcolepsy.
We have produced some information on the need to report the fact that you have narcolepsy to the Driver and Vehicle Licensing Agency (DVLA). (read more)
Connor's charity build for Narcolepsy
Connor wishes to Raise money for Narcolepsy UK. He was been diagnosed with narcolepsy and cataplexy and now wants to help with the research. His goal is build a new custom PC made up from donated parts. The machine will be raffled off/sold to raise money.
Show your support on Connor's Facebook page and Donate on Connor's Virginmoney Giving page
The ten most asked questions of 2011
As it’s the time of the year where people put together lists we thought you might be interested in the ten most asked questions from website, phone and email in 20111 – and the answers of course! (read more)
Update on narcolepsy and Pandemrix.
We have prepared an update on the situation regarding the diagnosis of narcolepsy following Pandemrix administration. (read more)
Shortage of Ritalin limited to USA.
Members may have heard about a shortage of Ritalin in America. (read more)
Changes to Pandemrix information.
The CHMP has recommended changes to the information on Pandemrix on the basis of a preliminary review on the association between this H1N1 influenza vaccine and the development of narcolepsy. (read more)
Does amphetamine increase risk of developing Parkinson's Disease?
A recent study presented at a scientific meeting suggests that there may be a link. (read more)
Provigil should not be given to the under 18s.
Recent guidance from the MHRA states that modafinil should not be give to patients under the age of 18 and to certain other groups of patients. (read more)
Narcolepsy and the H1N1 'flu vaccine.
An update on recent developments regarding a possible relationship between H1N1 'flu vaccination and the development of narcolepsy. (read more)
New Rare Disease UK report highlights patients experiences.
A new Rare Disease UK report highlights a number of worrying issues experienced by patients and families affected by rare conditions. The report, Experiences of Rare Diseases: An insight from patients and families, deals with the views and experiences of 600 patients and families affected by over 100 different rare conditions. (read more)
The science of sleep: hope for narcolepsy sufferers.
Claire Allen once laughed so much at a friend's joke, she fell down in the middle of a road. Another time, she attempted to jump out and surprise someone – but was so tickled by her plan that she collapsed before even reaching her hiding place. If the 35-year-old scientist, whose case was highlighted in newspaper reports last week, was not on medication, she could drop off 100 times a day. (read more)
Do you have a sleep disorder?
You may not even be aware of it, but most of us suffer - or have suffered - from a sleeping disorder at some point in our lives. In fact, one third of the population suffers from some type of sleeping problem. Typical disorders range from sleep walking, tooth grinding and sleep paralysis to narcolepsy. (read more)
New evidence on the DQB1* gene and sleep problems.
An interesting study was reported in the November issue of Neurology, the medical journal of the American Academy of Neurology. The study looked at people who have the DQB1 gene variant that is closely associated with narcolepsy. However, having the gene variant does not mean that a person will develop narcolepsy. (read more)
European Medicines Agency updates on the review of Pandemrix and reports of narcolepsy.
The European Medicines Agency's (EMA) Committee for Medicinal Products for Human Use (CHMP) has reviewed all available data on the suspected link between narcolepsy and Pandemrix. The Committee concluded that the available evidence was insufficient to determine whether there is any link between Pandemrix and reports of narcolepsy. (read more)
Narcolepsy and the Pandemrix swine flu vaccine.
You will no doubt have heard or seen news that a swine flu vaccine called Pandemrix has been suspected of causing narcolepsy. It is important to understand the full implications of what has happened and how that might affect you. (read more)