Queen of Sleep

Living with narcolepsy: a personal journey

UK health officials probe possible flu jab link to narcolepsy in children | Society | The Guardian

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It seems to take years to investigate the possible impact of Pandemrix. A little bit too long if you asked me. People’s lives have been affected.

UK health officials probe possible flu jab link to narcolepsy in children | Society | The Guardian.

Written by Queen of Sleep

March 30, 2012 at 9:09 am

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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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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

Rare Disease Day 2012 Today!

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Click here to go to Rare Disease Day 2012 website which lists national events for today!

Written by Queen of Sleep

February 29, 2012 at 2:17 pm

Sleeping Pills Linked with Early Death

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I was once offered sleeping pills by a GP but they didn’t make any difference to my sleep pattern at all so I stopped taking them. I know it sounds nuts to give sleeping pills to someone with narcolepsy but if I remember correctly it was to help control my sleep pattern whilst traveling. Perhaps you have been offered them too?

Study: Sleeping Pills Linked with Early Death

Written by Queen of Sleep

February 28, 2012 at 3:28 pm

The Somnambulist on The TV Bookclub on Channel 4

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The Somnambulist - Elsie Fox

The Somnambulist - Elsie Fox

Elsie Fox’s debut novel The Somnambulist is this weeks Best Read on channel 4’s book club airing on Sunday the 12/2 at 19:20. The story follows a seventeen year old who visits Wilton’s Music Hall to watch her aunt perform on stage, risking the wrath of her mother who is part of the Hallelujah Army and campaigning for all London theatres to close. The young woman moves out of the city with an enigmatic man, to a house that holds the darkest of truths. Make sure you don’t miss out on Sunday’s show to see what the panel think of this darkly stunning gothic novel.

The Bookclub Channel 4

Written by Queen of Sleep

February 10, 2012 at 8:08 pm

Posted in Books, Television Shows

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Low Salt Diet Tips for Sodium Oxybate Users

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Salt

Salt

Salt in our diet is a vital substance and helps to control the amount of water in our bodies,  the PH of the blood, assists to transmit nerve signals and to contracts our muscles.  It is present in all of our foods to a varied degree and especially processed foods. Most of us eat well over the recommended daily amount (6mg). if you take Sodium Oxybate/Xyrem you should have been informed by your doctor to lower your daily intake, especially if it is over 6 mg a day but how do you do it? Excessive amounts of salt is hidden in so many consumer foods nowadays that it is sometimes tricky to find out and to remember. On a regular basis, I try to avoid, fast food, processed food, ready meals and canned meals as well as eating out in restaurants usually contain excessive amounts of salt (and other additives) so try to stick to whole and fresh foods. Take up cooking as a hobby and make everything from scratch. Whenever I try to cut corners with my food I always end up more sleepy than before. The BBC website offers good  practical steps to reduce salt intake. If you’re checking labels, here’s a guide based on 100g/ml of product:

  • A lot of salt = 1.25g salt (or 0.5g sodium) – would be labelled as red on a traffic light labelling system
  • A little salt = 0.25g salt (0.1g sodium) – would be labelled as green on a traffic light labelling system
  • Anything in-between these figures indicates a moderate amount of salt

More ways to reduce salt intake:

  • Use fresh or dried herbs and spices to flavour vegetables
  • Avoid adding salt to your food when eating
  • Use soy sauce sparingly: one teaspoon contains about 0.36gof sodium (equivalent to 0.9g salt)
  • Buy fresh or frozen vegetables, or those canned without salt
  • Rinse canned foods, such as beans, to remove excess salt
  • Choose breakfast cereals that are lower in sodium
  • Buy low or reduced sodium versions, or those with no salt added

I have also found a US website that lists the top ten sources of salt in your diet: Bread and rolls, Cold cuts/cured meats, Pizza, Fresh and processed poultry, Soups, Sandwiches like cheeseburgers, Cheese, Pasta dishes like spaghetti with meat sauce, Meat dishes like meatloaf with tomato sauce, Snacks, including chips, pretzels, popcorn and puffs. If you visit their website you can also read the percentages broken down across the listed foods. They also write that the food we salt ourselves i.e. home cooked foods only account for 5-6% of our entire daily consumed amount of salt.

Personally, I don’t have a high salt intake – possibly the opposite. On a few occasions on holiday abroad, I have had cramps because I didn’t salt my food enough!! I don’t normally use salt a lot so I just continued to eat the same amount while spending time being active in 30 degrees heat. Not recommended!

Himalayan Crystal salts have been on the market for quite a while and to be honest I am not too keen on the flavour but do have a look at this amazing salt cave cafe treatment space outside of Manchester called Himalayan Salt Cave.

Last time I visited Sweden I found blue salt. It is really pretty salt with blue flecks of salt mixed in with a slightly translucent small pieces of salt. It’s called Iran Blue Salt from la collina toscana.  I have also found a Swedish salt that is supposed to taste like a storm at sea and is suitably called Storm.  The most famous of British salt is Maldon, a delicious variety from Essex. Essentially the bottom line is: don’t eat crap salt, control your intake and buy British (eh or Swedish obviously!)!

Written by Queen of Sleep

February 10, 2012 at 9:33 am