Queen of Sleep

Living with narcolepsy: a personal journey

Posts Tagged ‘narcolepsy

Jane Brody on Narcolepsy – NYTimes.com

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I believe that National Sleep Week has just started across the pond. Excellent awareness spreading – introductory article “Jane Brody on Narcolepsy” in the New York Times today.

Jane Brody on Narcolepsy – NYTimes.com.


Written by Queen of Sleep

March 6, 2012 at 5:34 am

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Parents claim link between flu vaccine and narcolepsy – Telegraph

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Parents claim link between flu vaccine and narcolepsy – Telegraph.

Written by Queen of Sleep

January 10, 2012 at 11:20 pm

Posted in Medication, News

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BBC News – Narcolepsy link to swine flu vaccine investigated

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BBC News – Narcolepsy link to swine flu vaccine investigated.

Queen of Sleep literally got a bit fed up sleeping, reading about sleeping, writing about sleeping, thinking about sleeping and yeah…sleeping so she took a break from it all but is returning with inspired energy in 2012

Sleep Safe out there!

Written by Queen of Sleep

December 12, 2011 at 2:11 pm

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Meet the nodding-off dog: Teenage girl who falls asleep at any time woken by her face-licking friend | Mail Online

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Written by Queen of Sleep

June 7, 2011 at 5:20 am

Shelley Maxwell – Student who can’t stay awake takes watchdog to court – Home News, UK – The Independent

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Shelley Maxwell

A student who suffers from the chronic sleep disorder narcolepsy is to have her case heard by the Court of Appeal in London on Thursday, following a six-year battle against what she perceives to be disability discrimination by her university.

Shelley Maxwell is seeking to overturn a decision by the students’ watchdog, the Office of the Independent Adjudicator, that it could not give a ruling on alleged disability discrimination. The hearing is being seen as a test case by Ms Maxwell and her lawyer. They argue the OIA’s decision closes the door to hundreds of disabled students seeking justice if they have a complaint about how they have been treated at university.

Read More: Student who can’t stay awake takes watchdog to court – Home News, UK – The Independent.

I have never really thought about education in this way before. When you are a student with a familiar condition it must be easier to receive support, and more importantly the right kind. What is the right kind of support? Transcripts of all classes? Looking back at my sleepy days in the classroom -hm yes… that would have been very useful. But even so, reading even reading at home put me to sleep, and still does. I found that I missed out on vital details that would have helped me in getting a comprehensive overview. Taped classes? I tried that for a while but there was always something going wrong with the equipment or the teacher’s voice was different from the one before and therefore difficult to record. At one exam I had a person checking up on me every 5-10 minutes to ensure I wasn’t sleeping, micro-sleeping, automatic behaviour etc. With little additional time the exam went so well that after a couple of months I was offered to teach the introductory class myself. It was, however, a practical class, and I always learn better by doing than by reading.

What kind of assistance would you find helpful?

Written by Queen of Sleep

May 11, 2011 at 4:52 pm

US Celebrities with Sleep Difficulties

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Mariah Carey needs 15 hours of Sleep a Night

Health.com compiled a list of celebrities last week that all have difficulties with sleep, i.e. they don’t get enough of it or it’s obstructed by a parasomnia. 2 out of the 26 celebrities have narcolepsy, namely Jimmy Kimmel and Nicole Jeray.

Natalie Pinkham, British sports broadcaster and reality show competitor suffers from sleepwalking, night terrors, anxiety before sleep but after a visit to a sleep clinic in 2009, and the help of some medication she now sleeps soundly.

Restless Legs Syndrome: Keith Olbermann (US Countdown) and Jon Stewart (The Daily Show) suffers from Restless Legs Syndrome (RLS).It’s an absolutely exhausting condition. Although I only have gone through periods of RLS (in combo with other glorious parasomnias such as sleep paralysis, night terrors etc), I remember waking up in the morning, looking around my bedroom and being unable to move. My body was in pain as if I had been running a marathon or participated in an all-night boxing round. Eventually, you become more conscious and irritation and frustration starts to build up inside especially if you are trying to keep an appointment or get to work. There is nothing you can do but surrender – cancel/reschedule that appointment and get some rest. It’s ironic that you need to get some rest after a whole night’s “sleep”.  [QoS]

Sleep Apnea: Reggie White (NFL player) unfortunately passed away in 2004 at the age of 43 due to pulmonary sarcoidosis. He also had sleep apnea a sleep disorder that is a relatively common condition that affects men more than women. In the UK, it is estimated that around 4 in 100 middle-aged men and 2 in 100 middle-aged women have Obstructive SA. 3 in 4 remains undiagnosed. Could there be a link between sleep apnea and sarcoidosis? or between sleep disorders and sarcoidosis?

Rosie O’Donnell discovered that she suffered from Sleep Apnea after years of “loud snoring”. A doctor discovered that O’Donnell stopped breathing more than 200 times a night, sometimes for about 40 seconds.

Famous Nappers: Leonardo Da Vinci supposedly slept exclusively using power naps i.e. 15min naps every 4 hours. Apparently, it is possible for a human being to survive on 1,5 hours of sleep a day according to research but it’s not sustainable for longer than 2 months. I wonder where this snippet of information originates from? I can imagine that he worked and slept in this way whilst being immersed in a project, invention or only to return to a normal sleep cycle after completion. Thomas Edison called more than 3-4 hours of sleep a night a waste of time and is also known to have relied on cat naps. Winston Churchill is also a world-famous Cat Napper but every  time I point this out in social situations Martha Stewart also seems to favour a 4 hours a night approach. There are not enough hours in the day to sleep more…perhaps it was a good thing she was sent to prison for a 5months.At least she got the opportunity to catch up on her sleep.

Insomnia due to Hectic Lifestyle: Rene Zellweger, James Mercer (from The Shins),

Celebrities who have relied heavily on medicated sleep: Eminem, Michael Jackson, Heath Ledger

Difficulty sleeping because of Children: Jennifer Lopez, Brooke Burke, Brad Pitt

Diagnosed Insomnia: Cheryl Hines (Curb your Enthusiasm, HBO), Justin Chambers (Grey’s Anatomy), Louise Bourgeois

Outstanding Sleeper: Mariah Carey takes sleep to an entirely new level. She needs to sleep 15 hours a day and keeps several humidifier in her bedroom to ensure that her voice will be in tip-top condition to perform. She must be sleeping as much as Queen of Sleep. Only the majestic cat breaks her record with 18h of sleep a day.

Written by Queen of Sleep

May 7, 2011 at 6:50 pm

Queen of Sleep is back from no net reception!

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How many sheep can you count?

I have been on a writing course and a holiday in areas of England with no internet access at all. Who knew they existed in 2011?

It’s been lovely, restful and absolutely amazing and that is just an understatement. I have pushed my energy levels to the max but been with people I trust so I have felt absolutely safe. I wonder why it seems so difficult for some people to understand what living with narcolepsy is really like and so easy for some others. It is probably a combination of life experience and empathy skills that makes all the difference. Imagination and the ability to put yourself in another person’s shoes/situation and really feel what it could be like to have/be “……….” The ability to feel empathy is only the beginning. Some need processing time or will try to help straight away. For example, I can cure you with XYZ. Maturity in facing difference can only come from knowing that 1. Never give advice without having been asked. 2. Listen (properly) 3. realise and accept that you and your history (point of view) is one of many and that your advice might not be right and yet that at the same there could be one of many right answers. People are quick to judge and quick to categorise in order to feel more secure. I have pushed many potential friends away by being too upfront and in your face with explaining EVERYTHING about narcolepsy. Perhaps it’s a stage you have to go through when dealing with and accepting a condition. I feel that I have now left it behind and my personality has started to come forward more.

There are stages in life that could affect the quality of sleep for women, for example pregnancy, here is a summary of these:

20’s and 30’s: Check your thyroid. My neurologist checked my thyroid as part of the Narcolepsy diagnosis. New moms can get postpartum thyroiditis, which 5 to 10 percent of women develop in the year following delivery. If you’re too jumpy to sleep or have extreme fatigue postpartum, see your doctor.

20’s and 30’s: Depression – feeling blue can cause sleep difficulties some antidepressants may also have sleep related side effects. Ask your doctor about your antidepressants!

40’s: Check when/how often you go to the toilet at night! It could be a urinary tract infection because .”Decreasing estrogen levels in the mid-40s leads to a thinning of the lining of the vagina and bladder, which makes perimenopausal women more prone to infection,” says Dr. Corio, author of The Change Before The Change. Talk to your doc if you notice a change in your bathroom habits.

40’s: Deep sleep decreases in your late 40’s making night-time awakenings more frequent. Improve your restorative sleep  (called delta or slow-wave sleep) by exercise more. Aim for 30 minutes of moderate aerobic activity on most days, suggests Wilfred R. Pigeon, PhD, director of the Sleep and Neurophysiology Research Lab at the University of Rochester Medical Center.

Your 50s+: Check the prescription drugs you may be taking for high blood pressure and cholesterol. They could affect your sleep. Check with your GP and if it is a potential problem ask if it might improve your sleep to take the pills in the morning instead of the evening.

Your 50s+: Check the prescription drugs: statins for cholesterol-control can deplete your body’s muscles of co-enzyme Q10, a natural protein required for normal functioning of muscle cells; the resulting muscle aches might make falling asleep a challenge. Ask your GP/Neurologist/Sleep Doctor if you might benefit from taking a co-Q10 supplement.

Your 50s+: Snoring and Sleep Apnea (OSA). There is a greater possibility to develop sleep apnea after the menopause when progesterone levels drop and it’s common to gain some weight.


Written by Queen of Sleep

May 6, 2011 at 2:53 pm