Queen of Sleep

Living with narcolepsy: a personal journey

Archive for the ‘Medication’ Category

Swine flu vaccine linked to child narcolepsy: EU watchdog

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This is a newer article from the 21st of September – the number of children that have developed narcolepsy in Sweden as consequence of taking pandemrix/GSK have now risen to 200 confirmed cases.

Still, I wonder where are the UK figures? I know they exist. Do comment if you have heard anything about this…

Swine flu vaccine linked to child narcolepsy: EU watchdog.


Written by Queen of Sleep

October 9, 2012 at 9:42 pm

Posted in Medication, News

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Narcolepsy victims in new compensation bid – The Local

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News from Sweden and the Pandemrix/GSK disaster.

Narcolepsy victims in new compensation bid – The Local.

This article is from February this year 2012. I have written on the topic in the past so this article is a kind of nice follow up. If there can ever be such a thing for these children who developed narcolepsy after taking the swineflu jab from GSK.


Written by Queen of Sleep

October 9, 2012 at 9:35 pm

Posted in Medication, News

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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

Low Salt Diet Tips for Sodium Oxybate Users

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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

Parents claim link between flu vaccine and narcolepsy – Telegraph

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Written by Queen of Sleep

January 10, 2012 at 11:20 pm

Posted in Medication, News

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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

Sodium Oxybate Update

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I went to see my specialist mid-February and he told me that my application for Sodium Oxybate had been declined. My local Primary Care Trust gave 2 reasons: 1. The most recent health update/check was from August and they wanted a newer one. 2. Sodium Oxybate contains high levels of salt which they thought would be bad for my health.

Apparently, it is common to be turned down at the first instance so now my specialist has resubmitted my application with an up to date screening and a reassurance that the levels of salt in Sodium Oxybate would not cause me any danger.

I will keep you updated with any further progress. I can’t believe it has now taken minimum 1, 5 years almost 2 years for the PCT to respond. 2 years ago I thought I was going to move so there was no point applying, and then when I found out that I had to stay my neurologist submitted the application. I called them up after 5 months to check if they had received it, and when they prescribing committee had scheduled a time for it to be considered in a meeting. The assistant who logs and deals with all applications said she didn’t remember my name but she would have a look just in case. She did and it had never arrived so last year in October when I had my appointment with my neurologist I said that it never had been received by my PCT. It had been sent to the wrong PCT by mistake. Oops! Eventually, he submitted an application to the right instance, it got rejected and now he has resubmitted it on my behalf.

Written by Queen of Sleep

April 1, 2011 at 9:05 am