My Experience of Sativex - Lizzie Gilchrist (MSRC)

It must have been a couple of years ago that I first heard of Sativex. At this time I was already smoking Cannabis occasionally to help with twitchy legs at night. I have never really been a smoker so I was never terribly happy about doing this. So a cannabis spray seemed like the perfect solution to the problem. I tried to keep up to date on the latest Sativex news and hoped that it would soon become available.

At the start of summer 2005 a nurse I know told me about a Sativex trial going on in London and so I contacted them. After a long drawn out process they unfortunately turned me down for the trial. However in November 2005 the Home Office decided Sativex could be imported from Canada and prescribed to individual MS patients in the UK as an unlicensed medicine. I was one of the lucky few who managed to get through this process with no problems.

 

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It took a week or two for my GP to make sure it was all ok and for the pharmacist to get the sprays from the warehouse but other than having to sign a disclaimer for the GP to say I understood this was an unlicensed drug it all went quite smoothly.

I was pretty excited to finally be getting Sativex and couldn't wait to start it. I had to build up the dose gradually to see how I tolerated it and to find the right dose for me personally. I had absolutely no side effects from it which I was very glad about, however, I didn't really feel any benefit from it either.

I ended up on quite a high dose of it in order to see if that would help. It may have slightly improved the spasticity in my legs during the day but not to any significant degree and unfortunately it didn't help the twitches in my legs at all.

I perservered with Sativex for a few weeks but unfortunately it just didn't help me. I know of various people it has helped greatly but like many things it just seems to be a case of different things helping different people.

 

I recently took part in a controlled medical trial, one of many currently funded by the NHS, using a cannabis extract sprayed under the tongue, to relieve symptoms of MS; in my case stiffness, spasms and bladder control.

The first shock came on the very first day of the trial. The written guidance I had been sent beforehand said that I should not drive for up to four hours after taking the spray. In fact it was only after that four hours were up that the full effect on my brain kicked in and I felt extremely weird for a further four hours after that. Apparently my delayed reaction was unusual.

This is my point. When it comes to drug use every individual is different. I've heard people say that cannabis helps them to think clearly. For myself the best way that I can describe it was like taking a shot of something designed to induce instant dementia!

Sitting at my computer I could not for the life of me remember what I was trying to do. My sense of proportion was distorted. This affected my sense of space. (How big was the room? I no longer felt clear of its dimensions); time (without looking at my watch I really had no idea whether minutes or hours had passed) and emotional too. When my daughter came home from school upset about something I could feel myself having to work desperately hard to think what to say although normally this would have been second nature to me.

After that first traumatic day I built my usage up very slowly, giving myself a chance to become tolerant of the drug so that I could see if there would be any benefits to my symptoms. I also concentrated my dosing at night so that I would be able to think clearly during the day.

In 10 weeks neither spasm nor stiffness improved although there was a slight benefit in terms of not having to get up at night and go for a pee. However, in spite of a longer night's sleep, I would feel more tired in the morning so that this couldn't particularly be seen as a gain.

Another symptom that worsened whilst I was taking the spray and improved after the ten week trial was astigmus, i.e. the eyes not tracking together properly; 'eye wobble' as I call it.

I asked the wife of a man involved in the trial what his experience had been. She was disconcertingly enthusiastic. "Oh, it's been marvellous", she enthused. "He's in bed by 9 o'clock every night these days." I make no judgement at all about the experience of this particular family but none the less her comment sounded a warning bell in my mind. As with the use of other medication the question has always to be asked, is the aim to improve health or to ease the burden on those in a caring role?

I am concerned in case important questions about widespread therapeutic use of cannabis, in particular its long term effects on fatigue, memory, the ability to respond to situations and stay in control of one's own life, get lost in the hype.

http://www.msrc.co.uk/

 

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