Lee Jordan – Midlands Web Developer Web Development, Photography, Media Production, Social Media Collaboration and Marketing
Let’s start off with a disclaimer. Throughout my formative years I’ve never experimented with recreational drugs, I was mildly offended that troubles with my HR department and my GP started with questions about drug taking. It seems however, in the search for a treatment that will combat my Narcolepsy, I’m being asked to do exactly that, experiment with street drugs. Positive though, I’ve lost over 2 stone in weight at about a stone a year, so that’s pretty neat!
The battle to get properly treated on the NHS for Narcolepsy has just got harder due to needing to access the miracle drug Xyrem which now needs my PCT’s approval because it costs £14,000 a year.
As some of you know I’ve been battling to get on top of a rare sleep disorder for the best part of the last 3 years. We’ve traced the onset of Narcolepsy back to a round of glandular fevers and swine flu that I had in 2009. First came the battle to keep my job, which I lost. Almost straight away a battle began to get re-entitled to welfare payments after being found “fit for work” by ATOS. I had to cease driving after loosing a battle with the DVLA to retain my driving licence.
The battle to keep my home keeps being intensified by unjust and unfair welfare reforms. Worthy of it’s own blog post the welfare refoms focus on housing benefit which has seen my entitlement to a bedroom removed (erm, sleep disorder, bedroom? Comment ….). I’ve been in court three times in order to prove my condition so that I can access welfare payments.
Of all the battles,
to keep my job, to keep my car, to keep my welfare payments(the ones I paid National Insurance for) to keep my own home and independence; there has been one battle which you wouldn’t expect … medication.
I’ve been medicated for Narcolepsy now for over two years, however using medication that sweeps things under the carpet, which doesn’t actualy treat my condition. My symptoms worsen due to the progressive nature of this Neurological condition.
To control Narcolepsy my consultant and I have resorted to:
That’s on the stimulation front, on the sedative front we have:
Let me sleep! I just want to sleep, stop trying to keep me awake!
First was Provigil, but it gave me really bad anxiety attacks. I was shaking by the afternoon and shouting at my friends, even on a low dose it was like I was overdosing on Pro Plus (which I’ve not tried yet). Then came the Ritalin or kiddie Cocaine, which made me increadibly high, I was increadibly freindly, even with strangers. The eurphoria of the kiddie-coke was soon followed by a huge crash which resigned me to bed for the afternoon and the evening, not before leaving me with insommnia at night.
What I was afraid of, I was prescribed Speed!
For the past year I’ve been trying Amphetamine in order to stay awake, with as you can imagine, very little success. Symptoms have progressed while my Narcolepsy isn’t being treated properly, including Cataplexy attacks in which I need to sleep and cannot be woken, I can’t move due to paralysis. So I was shoved onto Prozac to deal with the Cataplexy. A lot of anti-depressants are used off label to treat Narcolepsy. So the Prozac gave me night terrors on top of Amphetamine made my blood pressure spike really bad when “excerting myself” for example walking up stairs.
Cocktail of drugs
The cocktail of drugs I was being asked to try, spiked my blood pressure. I like cycling, I tried to cycle; I would get very bad headaches and my eyes would feel as if they were about to pop out. I relied on the lift in my building at that point because walking up the stairs spiked my blood pressure and I was getting dizzy. Needless to say I stopped taking Prozac and my condition improved.
The eurphoria of the kiddie-coke was soon followed by a huge crash which resigned me to bed for the afternoon
LET ME SLEEP *eye twitches*
It might seem obvious, but I need to sleep, on the train, on the bus, in the pub, in the coffee shop, at work, in the car, on the bench, in the park, on the pavement, on the train platform, in the waiting room, at the bus stop, in front of the turkey’s in Tesco, on the phone, while talking to you, while watching TV … you get the idea. Yet I can’t sleep at night. My brain forces me to sleep when it’s not appropriate to do so. You then wonder, well am I sleep deprived? Obviously, yes!
Xyrem is the drug I should be on. Xyrem is like a defragmention program for the brain, it’s also a banned substance of abuse and bloody expensive. BUT is the “first line of treatment in America” *shakes fist at NHS*
My consultant admits, it’s time for Xyrem
Xyrem is the drug I should be on. It has a very high success rate for Narcolepsy at reducing all symptoms and doesn’t require a cocktail of stimulents and sedatives. Sodium Oxybate as its ingredients are known is thought to consolidate REM sleep at night time and so the brain doesn’t need to seek REM in the day when I’m awake. In effect Xyrem is a defragmention program for the brain. In the same way that your files get scattered around your hard drive and you need to “defrag”, my sleep is fragmented over 24 hours. My sleep happens at the wrong parts of the 24 hour cycle, so my REM sleep can happen when I’m driving, while I’m at work, while I’m shopping and while I’m socialising with friends.
So why wasn’t I given Xyrem to start with? Well it wasn’t at first obvious that I had Cataplexy with the Narcolepsy and EDS (Excessive Daytime Sleepiness) wasn’t at the time indicated for Xyrem, which it is now. The biggest problem is the cost of it, which now stands at £14,000 a year. Despite Xyrem being found to be very effective for Narcolepsy the NHS struggle to reason over the cost of it.
Xyrem treatment would be allowed in America!
In America however … Xyrem is prescribed without all this haula-baloo. Given my distain for the UK NHS when it comes to rare disorders and un-common conditions, I really do think US healthcare is better, yes you have to pay for it; but I’d rather be in a helathcare system that works and is expensive, than one which doesn’t work and constantly denies the right treatment on a cost basis.
I’ve been advised to write to my MP, just in order to be allowed this drug!! I may also have to write to my MP about having bedroom entitelment removed by welfare reforms!
What we’ve had to do is prove that other medications don’t work. I think We’ve done that, not only that we know they make my condition worse. I’m heavily sleep deprived, I can only cope if I take regular naps, stims don’t keep me awake. In fact I can take Amphetamine and fall alseep soon after. I can drink strong coffee in the day and I’m out like a light and then unable to sleep at night.
It seems Xyrem could be the answer I’ve been looking for, yet in order to access it I need to remain in my home, which again is another blog post all of its own. To give you a taste of it, Walsall Council have denied me housing benefit for one bedroom accomodation, so I can only get support to rent a shared house. With the medications I have to take, there are security concerns around having strangers be in a position where they can access these drugs!
From now on, my nick name for Xyrem should be dream water, because that’s how you take it in water. Though it has been described as giving a salty blowjob and makes up a high amount of your daily salt intake.
So things move on to the kind of battles you see over Breast Cancer treatment, oh and not to mention Walsall Council have taken away support from me for a bedroom just because I apparently “haven’t worked for my home and it’s not fair on people who work and I should instead live with my parents, because the age of a first time buyer is 37 and people shouldn’t rent, they should BUILD THEIR OWN HOME and yada yada this and yada yada that and deficit this, and spending cut that”! So dig in, we’ve got another war to fight!
If I do get Xyrem, there’s no chance in hell I can be forced to move into shared accomodation with strangers because Xyrem can be used to rape people and I really don’t think Walsall Council want that kind of fuck up banded around in the press! GIVE ME MY BEDROOM ENTITLEMENT BACK!
More to come … “You’re under 35, you don’t need a bedroom. What’s Narcolepsy?” My fight to keep my home and thus a bedroom to sleep in gets harder
To be continued …
Lee has been involved with the web for over 10 years, working on a wide range of web projects and coming from a media background, a digital native with huge ideas of how each project can benefit from an online presence. Learn more about him and his work on the about page.