I have not been active on the blog recently because I’ve been in hospital since 28th August after suffering the first manic episode of my life. After extensive investigation and observation, it has been determined that I have bipolar affective disorder (and though it’s not a great thing to have, I like to think I’m in great company given that my idol Stephen Fry has BAD too). My hypersomnia is a component of a wider disease and, though I am now being treated for BAD (with olanzapine / Zyprexa for anyone who’s interested), my hypersomnia is still not controlled.

I have now been discharged from the hospital into Urgent Care (delivery of ambulatory care in a facility dedicated to the delivery of medical care outside of a hospital emergency department, usually on an unscheduled, walk-in basis. Urgent care centers are primarily used to treat patients who have an injury or illness that requires immediate care but is not serious enough to warrant a visit to an emergency department), who will monitor me until I can be released to the Community Mental Health Team and go back to my day job (I work in IT).

This is the reason that the blog and campaign have been so quiet for the past couple of weeks.

Now that I am at home and have access to the technology I need to work on it, I will be making more frequent updates. There are four questions in the queue from the ‘Ask Me’ page that I need to answer and I will do those before anything else.

So apologies for the silence and thank you for sticking with me.

An anonymous reader asked:

I have a question… Have you tried xyrem before and do you know it’ll work? Just because a lot of times even with xyrem a lot of hypersomniacs still have debilitating EDS, I have idiopathic hypersomnia (took 3 years of constantly going to doctors to finally get one who would listen and diagnose me), he told me what my treatment options were and was very optimistic, but now that I’m taking Ritalin throughout the day, it barely does anything I can fall asleep on it still…  I just was asking just in case, you do succeed and it becomes a huge let-down. As a side note, I know this is illegal and whatnot, but with something that may help sometimes you just have to do whats needed you know? So is there any way you can get your doctor to change it from hypersomnia to narcolepsy? I know xyrem is a legal treatment for narcolepsy and has been for about 10 years, at least in America…. Thank you for what you’re trying to do by the way.

I have never had the opportunity to try Xyrem before because without prescription it’s a Class C drug here in the UK (and I know that it is a scheduled drug in the US as well). I don’t know that it will work, but I have spent ten years of my life suffering with hypersomnia doing research into various medications that I am certain that it will have a positive effect on my condition.

Hypersomnia robs you of your deep sleep. This is the deepest possible part of sleep (deeper than REM, when you dream); during this time your body sends out signals and hormones (notably Human Growth Hormone [HGH]) to repair itself. In a person with hypersomnia, this part of the sleep cycle is either completely absent or mostly missing.

What Xyrem / GHB / Sodium Oxybate (call it what you will) does is to force the brain into deep wave sleep, causing it to send out those restorative hormones and to undo the damage that our bodies suffer every day through free radicals, pollution, exercise, stress, and even the food that we eat (digesting food produces a lot of chemicals that can be harmful if not cleaned up by enzymes and other helpers in the liver).

The reason that people with hypersomnia crave so much sleep is that their bodies aren’t repairing themselves due to the lack of deep wave sleep and so we feel tired because our brains want to shut down to repair our bodies, but we can never get an adequate amount of deep wave sleep, no matter how long we sleep.

I currently take modafinil for my hypersomnia, which I would say is about 40%-50% effective - it gets me part way through the day and then I crash. The other night, I sat down on my bed at 19:55 because I felt a sleep attack coming on. I thought to myself ‘must clean teeth before sleep’ so I got out my toothbrush and toothpaste, and the next thing I knew I was being woken up by the hospital staff at 08:00!

I did used to take ritalin (methylphenidate) for the disease, but it provided little relief. Perhaps you should ask about modafinil?

In the UK, Xyrem is approved by NICE (the National Institute for Clinical Excellence) for narcolepsy - I think they’re the equivalent of your FDA. However, consultants are allowed to prescribe any drug off-label if they feel it would be helpful for a particular condition in the UK, and that’s what I’m campaigning for.

Best of luck with your own hypersomnia, and please keep me up to date.

Love and light, Matt.

Ever since Stephen Fry very kindly tweeted the link to my Xyrem Tumblr, visits have become stratospheric (i.e. from a couple of hundred unique visitors to 6,000!).

However, I am currently in hospital
being treated and the only piece of kit I am allowed on the ward (due to insurance purposes - i.e. bring in anything else that goes walkies and it’s your responsibility) is my iPhone 4.

I’m on the Three network and coverage is patchy, and there’s no wifi.

I’m trying my best to respond to all Twitter, Facebook and Google+ messages, as well as Disqus comments on the blog (these are particularly irksome as the JavaScript Disqus uses seems to make the iPhone run as slow as molasses).

So please bear with me. In the meantime, please scroll up to the top of the page and look in the big red box to see how you can help.

Love and light, Matt.

My campaign has been a bit quiet lately. This is because I am currently in hospital being treated for my hypersomnia and other related conditions, so I have limited access to technology.

I have two outstanding questions from an anonymous reader; I have not forgotten about you and I will respond as soon as I am able (they are quite complicated questions so I will need time to think about the reply).

As soon as I am discharged, the pace of the blog, petition and campaign will pick up again.

Thank you for your patience.

Elphias Doge asked:

Hi - I’m still reading through your information about Xyrem before signing the petition, but I noticed that you said you’ve been prescribed modafinil for hypersomnia. My doctors told me that they couldn’t prescribe it to me because my diagnosis is hypersomnia, not narcolepsy. Is that incorrect, then? I would very much prefer to be on modafinil, rather than my current medication, dextroamphetamine.

I did try to answer but for some reason, it is not showing up in my feed, so I have pasted the question into this new post and have answered below.

Hi Elphias,

Thank you for your question, and for the name - I’m a big Harry Potter fan too.

I guess it depends on your neurological team. They tried me first on modafinil and amphetamines were going to be used if the modafinil hadn’t been successful (which it has been to some extent).

Next time you see your neurologist, ask about a trial of modafinil. They may need to titrate you off dextroamphetamines slowly first then increase your modafinil from 100mg to potentially the maximum of 400mg (which is the amount I take daily, split into two doses).

However, I see modafinil as just a stepping stone - it helps me get through the day, but I think GHB / Xyrem is the medication that would successfully treat all the symptoms of my hypersomnia.

Good luck with your neuro team, and keep me posted.

I have a theory that hypersomnia is caused by a lack of endogenous (within the body) production of GHB, which is naturally produced in the brain. Both of my parents get tired easily, falling asleep in front of the TV in the evening. If the faulty GHB production gene is a dominant allele, then two parents who have one copy of the allele (i.e. my parents) would produce children with two copies of the faulty gene, resulting in hypersomnia. Fortunately, the error is in GHB production, not in the GHB or GABA receptors of the brain, so supplementation with GHB restores normal function.

My e-petition to Andrew Lansley, Secretary of State for Health is now live.

Please, if you do one thing today, visit my blog and sign the petition ➡ to get a naturally-occurring chemical made legal and to treat my disabling medical condition that I have suffered from for ten years. I would be forever grateful.

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