As part of our Cannabis: Medicine or Menace series, Investigative Reporter AASMA DAY talks to a mum who is prepared to risk obtaining a cannabis medicine illegally as she claims it is the only thing that helps her health conditions.
Tracey Gillibrand suffers from constant muscle spasms and tremors which doctors say are like doing an 18-hour workout every day.
Her hands never stop shaking and Tracey says that when she is out and about and begins suffering tremor and jerking, people think she is a junkie on drugs.
Ironically, it is a drug derived from cannabis which Tracey claims is the only thing that helps with her pain and calms down her muscle spasms.
Tracey, 49, who lives in Freckleton, near Preston, suffers from three very complex neurological movement disorders which all have complications.
Tracey has dystonia, a condition where sustained muscle contractions cause twisting and repetitive movements or abnormal postures and tremors.
Tracey condition is cervical dystonia - involuntary and painful muscle contractions in the neck area causing abnormal movements and awkward posture of the head and neck.
She has myoclonus dystonia which affects the muscles in the arms, neck and torso and causes sudden jerking spasms similar to when someone gets an electric shock.
She has also been diagnosed with essential tremor, an uncontrollable shaking or trembling of the body.
Tracey, who has a 22-year-old son, explains: “I have suffered from these conditions most of my life and they have got worse, but I wasn’t actually diagnosed until eight years ago.
“It took doctors more than 20 years to diagnose me.
“I am also unfortunate as I experience pains with my dystonia.
“As well as the pain, the spasms are exhausting and doctors say the tremors are like doing a daily 18-hour workout.
“I have hand tremors where they never stop shaking and I get head tremors too.
“I only got diagnosed after I went private.
“Over the years, I have deteriorated and any kind of emotion makes the tremors worse.
“It is embarrassing getting the tremors in public as people stare and think you are on drugs.
“The pain I get with them is excruciating. I have a higher pain threshold than most people and can withstand a lot of pain.
“But sometimes the pain is so severe, it has me clenching my teeth in agony.
“When I get the pain some nights, I don’t want to wake up in the morning.
“I get very depressed at times and I admit I have considered ending it all when I am really low.”
Doctors have tried Tracey with countless medications including anti-epilepsy drugs and anti-Parkinsons drugs.
However, she says nothing worked and many actually made her condition worse, especially as she experienced allergies and side effects to most treatments.
Tracey recalls: “When I was 32, doctors basically told me there was nothing more they could do and I just had to live with it.
“In desperation, I went to see a homeopath and she basically gave me my life back.
“I changed my diet, kept off preservatives and additives and ate a lot of organic food.
“I cut out all the nasty chemicals from my life and this made things a lot better.”
Tracey says strong emotions make her spasms and tremors worse and she has experienced a lot of tragedies.
Only three months after her diagnosis, her mother died.
Then her fiance died in a freak motorbike accident just seven months before their wedding.
One of the treatments specialists tried on Tracey for her dystonia were botox injections to relax the muscles. However, she again suffered side effects.
She explains: “I was still getting spasms of pain despite the injections.
“Then my hairdresser noticed my head had started pushing back towards my right shoulder.
“I also started waking up choking during the middle of the night.
“I then began itching and discovered I had all these spots where they were injecting me.
“I found out I had acute adverse reactions to the injections and could have died.
“I was then offered a deep brain stimulation operation. This is where they take off the top of your head and put a pacemaker device in. However, they have to change the battery every nine months to two years.
“Around this point, I decided enough was enough and stopped the injections.”
Tracey returned to using homeopathic remedies, herbal remedies, ayuverdic medication and aromatherapy.
Cannabis came into Tracey’s life two or three years ago when someone suggested it might help her.
Tracey says: “I have never been one to take lots of drugs. Like many people, I have dabbled a bit.
“I had tried the odd joint, but as I don’t like smoking, they did nothing for me.
“I spoke to a homeopath as you can get a homeopathic form of cannabis through a registered homeopath and she suggested I try it with a pipe.
“I found the herb effective and it seemed to relieve the tremors and helped with the pain too.”
Tracey then heard about the drug Sativex - a licenced spray derived from cannabis which consultants can prescribe on the NHS for certain conditions.
She says: “I cannot get Sativex on the NHS because my consultant does not have a licence for it for dystonia. He only has it for conditions like MS.
“So I have to acquire Sativex through the black market by going online or through word of mouth and any way I can.”
Tracey says the cannabis derived Sativex spray is wonderful for her pain and alleviates her spasms and tremors.
She says: “I was taking cannabis the herbal drug, but I now use Sativex the medical spray.
“It works amazingly as a pain reliever - better than anything I have ever used before.
“For me, the major thing is alleviating the pain. But it also gives me energy and helps with the tremors and lifts my mood.
“It is written into my medical case notes that I acquire Sativex. My consultant knows I take it.
“One consultant pointed out I could get arrested for getting it illegally.
“But my argument is that without it, I could not cope with the pain.
“Hopefully, one day it will be able to be prescribed on the NHS for people with dystonia too.”
Facts from the Cannabis Skunk Sense charity
• Anyone can become psychotic if they take enough at one time.
• The incidence of schizophrenia is doubled, possibly due to gene variations in families
• THC persists in brain cells, 50 per cent for a week, 10 per cent still after a month. All normal brain functioning is disrupted
• Learning and memory are badly impaired and academic achievements fall. A grade ‘D’ student is four times more likely to use cannabis than one with A’s
• Personalities change. Users become inflexible, have fixed ideas and answers to questions, cannot plan their day, can’t solve problems or find words to express themselves. At the same time they feel lonely, miserable and misunderstood.
• Cannabis can act as a gateway drug. Ongoing Swedish research on animals is finding cannabis primes the brain for the use of other drugs, and a 25-year study from birth in New Zealand has found cannabis use to be the single most common factor in progressing to other drugs.
• Depression can occur, sometimes leading to suicide. Violence is not uncommon due to psychosis or withdrawal. Houses are trashed, parents assaulted and theft of credit cards, money and jewellery are quite common.
• Cancers are caused. Lung, head and neck, children’s cancer, even cancer of the testicles have all been associated with cannabis use.
‘The cannabis that people smoke is not a medicine’
“IF you need to take penicillin, you don’t eat mouldy bread do you?”
That’s the viewpoint of Cannabis Skunk Sense, a charity which aims to raise awareness of the threat to children, teenagers and their families, posed by cannabis use.
The charity was born out of the desperation of parents with children suffering from behavioural and mental problems as a result of drug taking, typically cannabis.
Lucy Dawe, spokesman for Cannabis Skunk Sense says: “We don’t eat mouldy bread when we need penicillin, we don’t eat willow bark when we want an aspirin and we don’t eat foxgloves when we have a heart problem.
“All these plants are fantastically useful, but they need to be medically refined and medically researched first.
“We come down very firmly on the view that the cannabis that people smoke is not a medicine. It has too many toxins in it.
“Cannabis, when it is smoked or ingested, is very hard to get a proper dosage.
“Also, when people are baking cannabis into sweets and cakes, there is a horrendous danger of children getting hold of them.
“Medicines by law, have to be pure substances, single chemicals, so their actions are predictable and controllable.
“Cannabis contains around 400 chemicals. Some of the 60 or so purified cannabinoids have been extracted and are being tested as potential medicines - that is correct procedure.
“There is a medication Sativex which is licensed in the UK as Sativex. In October 2014, it was rejected as non-cost effective by the National Institute for Clinical Excellence (NICE).
“We have no problem with people being properly prescribed Sativex.
“However, doctors are very wary of prescribing it for people in adolescence because it is known that cannabis is linked to psychosis and schizophrenia, particularly in a young brain.
“Research shows that one in 10 people who use cannabis get addicted.
“One in six adolescents that use cannabis get addicted.”
Cannabis Skunk Sense say one of the main problems with skunk cannabis is that it is much stronger today than the old herbal cannabis.
Cannabis is a natural substance from the cannabis plant. Its forms include dried plant material, blocks of resin and containers of cannabis oil.
Lucy says: “THC, the main mind altering ingredient in cannabis, used to make up about one per cent or two per cent of old herbal cannabis.
“But the cannabis you buy on the street has much higher THC levels.
“The last potency study in 2008 found the average THC level in cannabis was about 16 per cent.
“However, skunk cannabis, a stronger type of cannabis, now dominates the market.
“Skunk Cannabis is a completely different phenomenon. It is much stronger with higher potency and THC levels are as high as 46 per cent.”