Queen of Sleep

Living with narcolepsy: a personal journey

Posts Tagged ‘sodium oxybate – xyrem

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

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

The Science of Sleep: Hope for Narcolepsy Sufferers

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The Guardian (09/10/2010) reported  that recent medical advances have given narcolepsy sufferers hope of a normal life, but only for a few in the UK. It is great when narcolepsy gets exposure in the media so this is a most welcome article about the difficulties narcoleptics face in obtaining Xyrem/Sodium Oxybate.
The Science of Sleep: Hope for Narcolepsy Sufferers article goes through recent medical advances, and there has been quite a few. There was the swine flu vaccine alleged connection in August which has already been challenged by Narcolepsy UK (Narcolepsy and the Pandemrix Swine Flu Vaccine). In February, Swiss researchers claimed to have identified the overproduction of an anti-body, Trib2, in the immune system of narcoleptics.
Scientists at Geneva and Lausanne universities believe Trib2 is responsible for destroying hypocretin-secreting neurons in the brain. Hypocretin is the hormone that regulates sleep. Other research, mentions that environmental factors could “switch on” the gene (HLA Marker) which exists in a third of the population. In June, a Journal of Sleep  Research paper reported a five-fold increase of the condition among genetically predisposed individuals who had suffered bacterial throat infections in childhood while US studies suggested that exposure to heavy metals and gardening chemicals, as well as passive smoking, could be a trigger.
I am really happy to read and see that there has been a lot of progress in trying to find the cause of narcolepsy and obviously once the cause has been established then the search for a cure/prevention can start. We are still many years away from that and there are many people out there, aware or unaware of their condition, whose lives are touched by the condition every day. Narcolepsy UK are in the process of setting up support groups all over the country and if you are interested in running a support group. They would be very grateful if you could contact them so they can offer their support. I believe that isolation is one of the culprits in managing the condition. Having spent so many years unintentionally refusing to deal with my situation (in my 20’s), my greatest support today are other people with narcolepsy and friends who understand.
The Guardian article continues by mentioning the successful results xyrem-sodium oxybate has shown in treating narcolepsy. As you probably know, it is a derivative of the illicit substance/rave drug GHB. Licensed in the UK since 2006. Xyrem works by mimicking the activity of hypocretin. It then goes on giving the reader examples of the success stories where a patient has been prescribed Xyrem. They seem to outdo the potential side effects and disrupted treatments. Last year at the NUK Conference, I met a man with narcolepsy, who said: Xyrem, it will change your life! Can Xyrem really be the miracle drug/ the raison d’etre everyone claims it to be? And how on earth do you get hold of Xyrem when it is only available to one in 100 UK sufferers. “It’s the drug of choice, finally allowing narcoleptics to live a normal life, yet the link to GHB means it is tightly controlled, and remains under patent,” says John Cherry, director of Narcolepsy UK. And it’s not cheap – a year’s supply sets the NHS back £14,000. Care trusts operate different policies and patients generally battle to  obtain it.
How possible is it to obtain Xyrem when the government is exercising financial pressure on the councils and the primary care trusts? John Cherry, Director of Narcolepsy UK remains  hopeful that publicising individuals’ experiences, coupled with the new findings, will lead to change, yet emphasises that the disorder remains underfunded because “it can ruin your life, but it can’t kill you” (how depressingly true!). He also envisions a future where narcolepsy is a manageable condition treated correctly and efficiently.

Written by Queen of Sleep

November 17, 2010 at 8:33 pm

Narcoleptic woman falls asleep 100 times a day due to laughter

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The Narcoleptic woman falls asleep 100 times a day due to laughter is the Headline of an article on http://www.telegraph.co.uk. Claire Allen, a woman who suffers from an extreme form of narcolepsy, said her condition causes her to fall asleep 100 times a day simply by laughing.

Written by Queen of Sleep

November 4, 2010 at 4:32 pm

Is There a Cure for Autoimmune Diseases?

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Do we listen to our doctors or bodies? Treat the cause rather than the symptoms sounds like common sense to me. How come Modafinil, Xyrem, Amphetamines and Anti-depressants only treat the symptoms?

Doctors say: it’s because we don’t know enough about what causes the disease. We need more research and more money to carry out research.

Read this article about a girl suffering from Raynaud’s disease and make up your own mind.

Written by Queen of Sleep

October 10, 2010 at 9:35 pm

Xyrem – Sodium Oxybate?

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I have so far only heard and read positive accounts of narcoleptics taking Xyrem and Sodium oxybate. Extremely positive and  life changing. So when I came across this webpage I started to think about it in more detail. It is clear that any medication that people take on a recreational basis is bound to harm the body long term, but what to do now?…what do you think about this article from the Zombie Institute’s blog?

Written by Queen of Sleep

August 19, 2010 at 12:11 pm

Athos, Therapy, Sodium Oxybate update

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I am so relieved to get a letter from Athos Medical Services granting me Employment and Support Allowance for another six months.  Perhaps I shouldn’t be surprised but I am so used to being misunderstood/ not listened to  by medical professionals i.e. not specialists.

I am having a couple of weeks break from my therapy.

I have made contact with my local Primary Care trust via the Patient Liaison Service. They put me in contact with a the main body of the “prescribing committee”. I asked if they had received my application for Sodium Oxybate. Unfortunately, she answered that my name did not sound familiar. They log all requests, put it in a queue for the committee, and its then given a date for when it will be brought up and decided upon. My contact said she was normally very busy and gave me the number of her assistant. I contacted her assistant, who was very helpful and sweet, who told me to email all details to her so she could chase up the application for me. Apparently there are 2 systems that the application goes through. Hopefully I will get a reply soon.