Queen of Sleep

Living with narcolepsy: a personal journey

Posts Tagged ‘research

BBC News – ‘Child behaviour link’ to snoring

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1 in 10 children snore regurlarly. Scientists have linked snoring i.e. disturbed sleep such as sleep apneoa etc which restricts oxygen uptake in the brain and can result in interrupting the “restorative processes” of sleep or disrupting the balance of brain chemicals. Symptoms in young children such as disturbed night time sleep result in “unruly” behaviour/hyperactivity.

I find it strange that parents who have children that are active/lively in their sleep doesn’t link it to the reason why their day time behaviour is unusual or extreme. It makes perfect sense to me. Could it be bordering on parental neglect not to notice the symptoms at night?

I have been told by friends that many children in the UK with narcolepsy has been/was diagnosed with ADHD or similar hyperactivity condition before getting a correct diagnosis by a sleep specialist. Then on top of that the medication prescribed for both conditions is the same if not very similar. Seriously, how can they be so closely linked and so different?

BBC News – ‘Child behaviour link’ to snoring.

Written by Queen of Sleep

March 5, 2012 at 4:21 pm

Light Channelled to Brain through Ear Canal: The Valkee is Here!

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Valkee - Light headphones

When ever I go to Sweden to visit my family, I try and keep an eye out for new thinking, therapies, products that fight the winterblues. After all Scandinavia gets pretty dark during the wintermonths although the snow lights up the landscape somewhat many people struggle with SAD/Winter blues. So I was not surprised to read about the Valkee from Finland. Like most useful products, it came about because it filled a need that wasn’t being covered as effectively by other products/companies out there. It all started when Antti Aunio asked his childhood friend Juuso Nissilä if he had any tips on how to improve his mood during the winter months and he replied: “You don’t need bright light in your house. You need to light up your brain – that’s where your mood lives”. I know, it might sound as surreal as the Moomins that we have a collection of moods that live in our brain, a small mood collective but it is true.

The Valkee is a new light therapy product, also referred to a light headphones, that channels light through the ear canal to photosensitive regions in the brain. It has been tested by the Swedish University Uleaborg to see how effective it would be in the treatment of SAD (seasonal affective disorder) and the results have been incredibly positive. According to the company Valkee when you use the light headphones you only need to use them 6-12 minutes a day because the light doesn’t have as far to travel in comparasion with regular light therapy. This will be top on my next birthday/Christmas wishlist! Here is a link to some reviews on the company’s website. Check also out evidence: 92% of SAD/winter blues sufferers that tested the product experienced total symptom relief when used daily for 8-12 minutes.

The Valkee doesn’t just treat SAD and Winterblues. Valkee increases energy, and can act as a preventative or treatment of mood swings, reduce the need for excess sleep and help regulate the circadian rythm. It can also be beneficial for PMT/PMS symptoms. They are also planning to test the effectiveness of using the valkee in treating anxiety.

The Valkee is a product of the 21st century. It works, it fits into any lifestyle,it’s portable and it’s damn sexy. AND Valkee has CE Class II(a) medical device certification and has been clinically tested.

“I have been testing this in many ways. I tried going without Valkee for 5 days to see if there was a difference. I got immediately the migraine and restless legs back! I will not leave my Valkee anymore! THANKS! ” -Feedback email to Valkee, Female 30 years

I wonder what it could do to improve the symptoms of Narcolepsy? If you have one and have tried it please leave a comment to let me know how you got on!

 

 

Written by Queen of Sleep

February 6, 2012 at 12:37 pm

Nicole Jeray is Swinging for Sleep at the US LPGA Tour

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Learn more, donate and help improve awareness of narcolepsy: Nicole Jeray is Swinging for Sleep
More information about the US golfer:  Nicole Jeray Website and Narcolepsy Network

I wish you the best of luck for the coming season’s LPGA/LPGA tour(s) and an unbelievable amounts of birdies for “Swinging for Narcolepsy”! It’s such a clever and fun idea to help raise money for an incredibly worthy cause.

Queen of Sleep

Written by Queen of Sleep

July 30, 2011 at 10:34 am

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‘Swine flu jab ‘narcolepsy risk’ – BBC News

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BBC News – Swine flu jab ‘narcolepsy risk’.

It [EMA – the European Medicines Agency] said studies had shown a six to 13-fold increased risk of narcolepsy in children and adolescents vaccinated with Pandemrix compared with unvaccinated children.

 

Written by Queen of Sleep

July 25, 2011 at 2:13 pm

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Pregnancy and Narcolepsy: A Survey

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Narcolepsy Network and  Sara Kowalczyk (Ma Mph) are studying women’s perceptions of managing past, current, and/or future pregnancies with narcolepsy. All women with narcolepsy and/or idiopathic hypersomnia are invited to participate in this preliminary survey. The Survey: Narcolepsy and Pregnancy will only take 10-20 min – and the more women that participate the more credible and clear the results. No information or data from individuals will be published in a way that can identify a specific person.
The inital “pilot” data that will  be used to write an article for the NN website and newsletter.  This data will also be used to form a larger, more comprehensive research study. More information.

Don’t forget to visit Narcolepsy Network’s website for information on News and Events. This year the annual conference will be held in Las Vegas, Nevada (14-16 October 2011). I would love to go not just because of the conference but because it is a brilliant place to hold a narcolepsy conference, as long as you don’t let the demon of gambling catch you ;), the casinos are doing their best at keeping you awake (to gamble obviously). No windows, oxygen pumped into the casinos and visits the oxygen bars for a top-up and massage helped me stay awake a great deal when I visited last.  On top of holding the conference in Las Vegas, Narcolepsy Network are also celebrating 25 years of supporting the narcolepsy community in the US and worldwide!  A seriously well deserved congratulations to NN!

Written by Queen of Sleep

June 28, 2011 at 2:04 pm

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Neurology care ‘is lacking’ for UK patients

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BBC News – Neurology care ‘is lacking’ for UK patients.

I am not surprised reading the above article on the state of neurology care in the UK as the diagnosis of narcolepsy is on average delayed by 12 years.  Steve Ford, Chair of the Neurological Alliance, said: “Patients with neurological conditions need to see the right specialist at the right time in the right place, but evidence shows clearly that this isn’t happening due to poorly organised services and not enough specialist care.”

The Department of Health takes the opportunity to  say that this is a reason to push for the new NHS reform. Giving more power to GP’s  and moving decision making closer to the patient? I’m not convinced that is such a good  idea considering GP’s knowledge of narcolepsy (and other sleep disorders)  appears to be very limited. How do they envision the relationship between specialist and GP? Who will be making decisions? Who is the most suited to making decisions?

Written by Queen of Sleep

June 7, 2011 at 9:15 am

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Cavefish Sleep Patters May Help Understand Sleep Patterns

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Written by Queen of Sleep

April 15, 2011 at 2:17 pm

Queen of Sleep Blog will reach 10,000 visitors whilst at Narcolepsy Conference in Sheffield

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What a coincidence that I will be in Sheffield at Narcolepsy UK’s conference when the blog’s visitor numbers reaches 10000. Thank you so much all of you that read Queen of Sleep and especially you who subscribe!

If you want to find out more about Narcolepsy UK’s Spring conference in Sheffield which is taking place tomorrow you can find it here.

If you can’t attend the conference I will do my very best to report back to you the most informative and entertaining parts of the day.  I hope I will do a better job of this tomorrow than what I did last year in Cambridge 2010. On Saturday afternoon I was starting to feel so out of it I had to miss the entire afternoon. Fingers crossed that everything tomorrow will go brilliantly. Not just for me but for the conference and for everyone attending too! I am hoping to meet some familiar and some new faces.

I will report back on topics such as: The EGM, What happens on Monday? GP Fund holders and the new landscape, Sleep hygiene and medication update (Dr. Paul Reading), Interactive session with Dr. Paul Reading, Advocacy Support: Where we got it right with Director John Cherry,Interactive session  on local groups/support groups, Update of the website and the new tools available to users, Help us help you: local fundraising for Narcolepsy UK and Summary of Conference and closing remarks with Chairman Bill Harris. During the morning and afternoon there will also be opportunities for 1-1 sessions on benefits as well as a presentation on The New Benefits Agenda. I will hope to cover most of the sessions above.

 

Celebrating the Birthday of Queen of Sleep: 1 year and 10,000 visitors

 

 

 

 

 

Written by Queen of Sleep

April 1, 2011 at 3:06 pm

Sleep Walk 2012 with Julie Flygare

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Julie Flygare

Julie Flygare

 

I regularly read Julie Flygare’s Rem Runner blog. The blog is always well written and she is actively informing the public on narcolepsy by participating in marathons, interviews, and as part of National Sleep Week she organised a Sleep Walk, in Washington DC. If you want to participate next year follow her blog here: Rem Runner.

She also has a website: Julie Flygare

 

 

Written by Queen of Sleep

March 15, 2011 at 9:36 am

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WASM (the World Association of Sleep Medicine) 2011 Meeting

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WASM 2011 Meeting. The   is holding a congress on sleep, health and society. It’s for sleep professionals but it’s never the less interesting to see what they get up to.

Written by Queen of Sleep

March 15, 2011 at 6:04 am