I recently wrote, on VixPix, that I should tell you about my refusal of Sativex. Sativex is a medication made by GW Pharmaceuticals.
In 2002, I got on the clinical trial for Sativex. After a few days, it was evident that I was actually on the drug and not the placebo (as this was a double blind trial). Evident, to me, because Sativex is the cannabis based medicine and I was suddenly finding that time was shifting very slowly, for me and I remember one day finding myself eating five or six packets of crisps in one go. I was thinking “Why am I so hungry?!” as I reached for another packet… then it dawned on me… I had the munchies!
Now, unbelievable as you may find it, I had not been a weed user before my use of Sativex. When I got my diagnosis, everyone, and I mean everyone (including my grandfather), told me to use cannabis. I had, obviously, tried it before… smoking what was being passed around, but I had not taken up the drug myself. The only effect this previous use had had on me was to send me soundly to sleep and I did not see the need, when I was healthy, to do it again.
Seriously… I wasn’t a toker.
I found, once I got the dosage correct, that using Sativex not only helped me sleep – a real plus point when you are in a lot of pain – but either eased my pain, or made it so as I just didn’t care about my pain any longer. That sounds odd. It’s a difficult thing to describe. My head gets busy with other things… no that’s wrong, too. I get a comfortable emptiness. I’m not just focussed on what hurts. In fact, I’m not focussed on anything.
I also noticed an ease in my stiffness and twitching. I especially noticed this in the evenings, when I was sitting watching TV and at night, in bed. To be honest, it was truly blissful. I could relax and switch off.
However, there are obviously other side effects. I would not use Sativex until I knew I was done driving for the day. There was intoxication. No-one told me (bizarrely) not to drive or operate machinery, like you usually get told with so much as cough medicine. Thankfully, I am not so stupid as to take that as permission to do so.
The munchies are a side effect, for me, of using cannabis. I had to make sure I was aware of that “hunger” not being real and try to ignore it. I fail at that. This is one of the reasons I am as heavy as I am, at the moment.
Another side effect seems to be de-hydration. I can drink water to quench my thirst and wet my mouth, but that’s not the only lack of moisture that occurs. In these circumstances, I opted to use a sexual lubrication product. (I have to talk to you about that, at some point, too).
But, these things are worth suffering, when you get the benefits that I got from using this medicine.
When the clinical trial ended, I was informed that I was, indeed, on the actual drug and not the placebo. Well… durr!
I was also allowed to continue using the drug, indefinitely, and was issued with a card to inform the authorities, should the need arise, that I was a Home Office registered medical cannabis user. I called it my “Get Out Of Jail Free” card.
The only difference now, was that GW Pharm. would no longer send a car for me, to go to Oxford to get my meds. I would have to get there myself. Not a problem, I lived in Swindon, at the time, and it was not too far a trip. On my bike, it took no time at all.
When I moved further away, though, to where I am now, the journey time more than doubled and I was suffering more with my health and finding riding my bike more and more difficult. (I have since had to give up motorcycling, and have finally given in and got a car).
As a result, I stopped going to GW and was discharged from the “trial”. Not a problem, I thought, Sativex looked like it was going to be licensed for use in the UK pretty soon. I could use street drugs, ’till then.
And I have been doing so, ever since.
Street drugs, despite what you might hear from certain media sources, are not that easy to come by.
If you find someone that will sell some to you, you are lucky. You don’t necessarily know where they have come from and it can all be a bit seedy. And of course, illegal.
The best thing that you can do is to find someone that grows their own. Again, this is obviously illegal and, as such, your supply is irregular, to say the least.
I have friends that grow, but it’s hard to buy the drugs off them. I think some people may think I am after a freebie (which is great, of course) but I am willing to pay for my medication. It’s something I need and something they have and I will willingly pay. I have attempted to grow my own, but I am not a gardener and I can kill houseplants with a look, it sometimes seems.
If any of my friends read this, when I say to you “Can I buy some green?” I do mean just that. I am after doing a transaction. You do something I cannot do, and, as with if I need a plumber, or an electrician, or a gardener, I will pay for the goods and/or services. And I will be very grateful.
I digress. Usually, I buy off people that also smoke cannabis. The trouble with stoners is they are, generally, unreliable. If you don’t catch them at the right time, they will have smoked everything they had and will grin at you and say “sorry”.
If I do manage to buy some drugs, I have then to ascertain what it is I have bought. A lot of what is around at the moment is “skunk“. This is not what I want, it speeds my heart rate and gives me a buzz. I am not after that, I want the opposite. I want something to calm my spasticity, ease my pain and aide me to sleep.
So, I buy what I can and then have to start smoking just a tiny bit in a spliff and increase the dose once I know it’s strength. If I get this wrong and put in too much, I am quite likely to puke as my body says “Get this shit out of me!” which I don’t really understand, as I have not put anything in my stomach.
As the supply of cannabis so so unreliable, I have to eke out what I have. I smoke one joint a day. Usually around ten o’clock at night. Occasionally, I will have another, later on. If I am finding my pain (now in my hands, arms and feet, as well as my legs) unbearable. But it is always a hard decision to make. Do I use up my valuable resource like this, or do I continue to be frugal, so as I do not run out?
Anyhoo… earlier this year I heard the magic story, on the news, that Sativex had got it’s licence.
I immediately booked in to see my GP to discuss this. I was told that I would have to see my Consultant Neurologist with regard to this. Thankfully, they referred me and I got an appointment, quite quickly.
I went to see the Neurologist. He was new, to me, and did not know me or my “case” at all. He was dismissive and told me that he did not have any patients on Sativex, and knew little about it. I told him that I had used it before and it really worked for me, and I did know about it.
He told me I should increase the dosage of one of my other drugs and see if that didn’t help and he’d see me in six months time, goodbye.
I was very nearly in tears, and I said again that I knew this medication worked for me and I was using street drugs in it’s absence and I was breaking the law and he was basically telling me to continue doing just that. (Other doctors have actually said “Have you tried street drugs?” which is where I got the term from).
The Neurologist said that, of course, he was not suggesting that. I said I thought that that was exactly what he was saying but I would do as he suggested, with my other meds.
The change in dosage of my other meds has decreased my twitching limbs, but not touched the pain. It has also made me swell up like a balloon. The skin on my hands and feet feels tight and stretched. In fact, the skin on my heels keeps splitting open. Also, I keep getting swollen, reddened ankles.
I went to the GP about this (I saw someone that is not my doctor) and was told I had a fever, to take paracetamol and drink plenty of water.
Then, out of the blue I got this letter.
So there we have it. I’m not worth the money.
My next Neurologist appointment is at the start of January. It is with the same guy as I saw last time. I will be curious to hear what the “scope to optimise other treatments” is.
I will keep you informed.
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