For most mums, their child’s first day at school brings a mix of pride and trepidation.
For Elaine Levy, it was “the worst day of my life”.
Four-year-old daughter Fallon had previously been affected by convulsions caused by fever. But when the school called to say Fallon was shaking, without any sign of her being hot, alarm bells rang.
She was sent home and then suffered a rapid of succession of seizures. She was rushed to hospital by ambulance and later moved to Great Ormond Street.
“We were told that she had a disorder which we now know to be Lennox–Gastaut syndrome, which is intractable epilepsy.
“We didn’t know at the time that what she had couldn’t be cured. There’s a certain percentage of the population that have epilepsy that can have their meds and live a normal life. But Fallon’s was one of those conditions that could never be controlled.”
A “myriad of anti-epilepsy drugs followed”, some of which worked to a point.
“She was always having seizures in spite of the meds, just not as many and without ending up in hospital all the time.
“But really she had no quality of life. The sedative drugs they had to resort to in the end were making her zombie-like. Her head would be forward, she’d be drooling at the mouth and she couldn’t eat properly.
“She was eating mashed potato for years because she was so doped up that she couldn’t actually really chew.
“We’d take her out for an hour or so and then she’d end up having a seizure and we’d have to take her home. I think I spent most of her first 10 years in bed with her, worried that she was going to drop again. So it was a pretty bad time.”
Years later, Elaine reflects on the impact Fallon’s condition had on her other two children.
“I realise now that they couldn’t go on holidays in the heat because Fallon couldn’t handle it. Basically their freedom and holidays were all stopped because of Fallon. They were side-lined, which I didn’t realise at the time.”
The impact of the various anti-epilepsy drugs on Fallon was of great concern to Elaine.
“I remember seeing a neurologist who said ‘oh my God, we need to get her off this because its toxic’. There are all these drugs given to children that, although licensed, can cause so many problems and side-effects.”
One possible solution is vagus nerve stimulation (VNS). A small implanted device similar to a pacemaker sends electrical impulses to the brain to reduce the number and severity of seizures. Fallon tried two of these.
“We’d heard reports that it could stop the seizures completely and so we were very excited at the time. Maybe it reduced some of her seizures but I don’t think it worked well at all.”
The device still implanted in Fallon’s chest today is now redundant, and has been ever since her mum discovered medicinal cannabis.
“She’s 25 now and started taking medical cannabis about two years ago. When I first heard about it, I spoke to two neurologists who both said they’d seen amazing results from patients who had accessed it independently.”
She contacted Hannah Deacon, the mother of Alfie Dingley, a severely epileptic boy who was making headlines at the time following his treatment with medical cannabis in Holland.
“Hannah suggested finding a doctor in Holland willing to prescribe it. I wasn’t going to just go down a back street like some of the adult patients the neurologists mentioned.
“I found one and was astounded that they said I wouldn’t need to bring Fallon if I had her notes. But I was so worried about getting stopped and arrested so I thought it best to go over with Fallon so if I did get stopped, they could see my daughter with epilepsy, and could see that it wasn’t for me.
“I took her across in the July. It was a really hot day and, I have to say, it was a nightmare. From beginning to end she was having seizures, falling down in the street in Amsterdam, in the hotel, at the airport.
“One minute she’d be walking with me and the next she’d be down, with people running around trying to find her a wheelchair because she wasn’t coming around.
“Anyway, we got it and walked through [the airport] with it. My neurologist said he didn’t know a lot about it but advised us to treat her slowly. And it was amazing.
“Within three weeks we started seeing seizures reducing. I remember the carers ringing me up and saying she hadn’t had any seizures that day. Then one day I thought I’d won the lottery – I couldn’t get hold of her and assumed she’d been taken to hospital.
“But actually she’d been out all day and all evening. It was unbelievable. Before the cannabis she was having seizures every day, up to around 200 a month. She could fall over in the toilet and bang her head if you weren’t watching her. But in the last week, for example, she hasn’t had any.”
Although medical cannabis was officially legalised in the UK as a prescription medicine in November 2018, access on the NHS has not yet opened up.
Despite a supportive neurologist trying to help navigate the ambiguous, bureaucratic process of seeking access to the treatment, Elaine was unable to secure a prescription.
Subsequently, she was among a group of campaigning parents who spoke to the health secretary on a visit to Westminster last year.
“It makes me so angry that nothing has been done yet [to open up access to cannabis medicine]. Matt Hancock said, ‘if your neurologist believes there’s nothing else for Fallon then I need to know about it’.
“My neurologist absolutely supported her 100 per cent, he filled out the form for the individual funding request but they turned it down because it wasn’t ‘exceptional needs’. It’s so strict and rigid that 98 per cent of the population that need it get turned down.”
Fallon takes a product called Bedrolite, which contains nine per cent CBD and less than one per cent THC.
Elaine makes a monthly visit to Holland, spending up to £2k per month, plus the cost of flights, on the medicine.
The financial toll of this arrangement saw Elaine forced to put the family home up for sale in September last year.
At the time she estimated that she had spent over £30,000 on Fallon’s private supply. The family has also relied upon crowdfunding.
“I don’t know if we’re ever going to get an NHS prescription so I can’t plan and say, in a month, we’re probably going to get one.”
The imminent house sale and the prospect of a subsequently downsized life for Elaine’s family is of course a sacrifice worth taking, given Fallon’s remarkable transformation.
But, as Elaine and many fellow parents affected by epilepsy believe, it is a completely unnecessary sacrifice caused by the government’s inability to react to cannabis medicine’s resurgence as a potential life-saving treatment.
And Elaine, who will make another protest visit to Westminster in February with campaign group End Our Pain, is not encouraged by recent developments.
In December it was announced that the CBD drug Epidyolex would be fast-tracked into the NHS as a prescription treatment, including for children with epilepsy. Elaine believes the move is too restrictive, focusing only on a product that will not work for all epilepsy patients.
She would like to see other products, including those with THC and made from whole plant extract containing other potentially beneficial compounds, also considered.
She is, however, optimistic about the ground-breaking study recently launched to monitor 20,000 patients through cannabis medicine trials.
Professor David Nutt is leading the two-year trial with the aim of creating the largest body of evidence on the plant’s medicinal qualities in Europe.
Through his research body Drug Science, the ProjectTwenty21 initiative was launched in partnership with the Royal College of Psychiatrists. It is hoped that the trial will help to persuade policymakers to help open up access to medical cannabis.
Elaine is hopeful that Fallon can be part of the trial. In the meantime, she continues to be amazed by the difference she has seen in her daughter since she discovered medical cannabis.
“Pre-medicinal cannabis, Fallon would have to take 10 to 12 pills in the morning and the same at night. Because so many of them were sedative, she couldn’t swallow a lot of them, so we’d be putting them in yoghurts and anything else we could do to get them down – and none of them really worked.
“She’d start her day taking all these pills, we’d get her up and ready and tell the kids we were all going out. But if she got too excited, she might have a seizure – being too happy could trigger a seizure, just like being upset could too. Her epilepsy was emotionally-led, as well temperature and other triggers.
“So I used to end up in bed with her because she’d be safe. That was Fallon’s life. If we made it out for a meal, we’d take a wheelchair and sit in the booth in case she keeled over. We could never finish and meal, we’d soon be saying ‘time to go kids’ and we’d be back in the car. She couldn’t really go out with carers because it would be too much of a worry for them.”
In contrast, Fallon’s life now extends far beyond these restrictive experiences.
“She still does have seizures but there are so few and she’s not standing up one minute and dropping down to the floor the next. She actually walks alongside me now.
“Obviously, I’m still nervous because I’ve had 2o-0dd years of her having drop seizures, but I’m slowly getting used to the fact that she’s going to be able to come out all day or for half a day and be fine.
“She now goes to the cinema, to a club to play with friends and singing – she does all sorts of things that she couldn’t ever do. Her life is absolutely transformed.”
Fallon, whose special needs require 24-hour care support at her independent living flat, is also becoming much more engaged and interactive with her mum, says Elaine.
“It’s amazing. I won’t tell you what she says to me now,” she laughs.
“She’ll always be vulnerable because she has learning difficulties, but her IQ is definitely changing. When she was on sedatives, she couldn’t string a sentence together but now her intellect has risen as she’s dropped a lot of the pills.
“She’ll have a chat with you and her brain’s more active. The more seizures you have the more it affects your brain so she’s obviously having less, she’s more alert, and with it she gets a bit bolshie now!”
From catwalks to cannabidiol – a former fashion model’s journey to CBD discovery
Model Kelly Brooks was forced to give up her dream career when Lyme disease left her unable to get out of bed. She tells Cannabis Health how she is rebuilding her life with the help of CBD.
A few years ago Kelly Brooks, 27, was living her dream on the catwalks of New York, modelling for Jean-Paul Gaultier and gracing the pages of Vanity Fair, Glamour and Italian Vogue.
Now her life couldn’t be more different. In 2018 she moved to the UK with her husband Layton and the couple are looking to start a family in their hometown of Ringwood, Hampshire.
Kelly is the operations manager of a five-star spa and teaches barre fitness classes to those living with an illness or injury.
You would never know that she has endured years of symptoms such as agonising joint pain, extreme fatigue, tremors and at her worst being unable to walk, as a result of chronic Lyme disease.
Growing up in Maine in the United States, Kelly first felt something was wrong in her early teens. She went from being an ‘active, healthy kid’ who was hardly ever sick, to experiencing periods of blackouts and vomiting.
Medics put it down to everything from a sodium deficiency, fibromyalgia and Epstein–Barr virus, to depression, an eating disorder and even attention-seeking. It took almost a decade for doctors to diagnose the tick-borne disease. Even when things took a turn for the worse at the age of 17.
“All of a sudden I was completely exhausted. I went home from school one day, got into bed and didn’t get out for weeks,” Kelly says.
“I had joint pain, migraines and extreme exhaustion – I was sleeping about 20 hours a day. I wish they had taken me more seriously at that point.”
A year later, aged 18, she was eventually tested for Lyme disease at the suggestion of a doctor who happened to be a family friend. It came back positive.
Despite her diagnosis, Kelly was determined to follow her dreams and moved to New York to go to study fashion buying. When a chance opportunity to help out a fellow student ended up launching her modelling career, she ended up quitting college to focus on it full-time.
She was living the dream, walking in runways shows at New York fashion week, working with household brands such as Bumble and Bumble and travelling across the world to Paris and Milan. But she was secretly struggling to balance a blossoming career with her crippling health condition.
“At first I could push through it and rest when I got home, but over the years it became really difficult, especially dealing with the pressure of losing weight – I wasn’t eating enough and was exercising too much – and was struggling to stand for long periods of time. I did faint at a couple of jobs,” says Kelly.
She got into a cycle of treating the Lyme disease with strong antibiotics for several weeks and before returning to the same lifestyle and running herself into the ground.
But as her symptoms became more neurological, leaving her struggling to walk and lift her legs, her then-boyfriend Layton gave her a much-needed wake-up call.
“One evening I came home from doing runway shows at fashion week and I completely collapsed. I couldn’t walk across the room.
“Layton said ‘ I can’t watch you keep doing this to yourself, you need to stop’,” she says.
“It was really hard to give up, I felt like it was so unfair, but by the end, I just wanted to do anything to feel better.”
It was a fellow Lyme disease patient in New York who introduced Kelly to CBD.
“I’ve never really done the herbal route, so I was sceptical,” she admits.
“They sent me a cream and I put it on the joints that were hurting me the most and within a few minutes, the pain had subsided.
“I couldn’t believe how much it helped because I’d had prescription medication for joint pain and nothing had worked but CBD did.”
When the couple moved to the UK to be closer to Layton’s family, the CBD industry was just in its infancy. She struggled to find a good quality, reasonably priced product and was confused by a wealth of conflicting research.
Layton took matters into his own hands to help his wife and reaching out to a colleague with previous business experience, Claudio Santos, they founded CBD Shopy.
Now a leading online retailer, the website aims to help customers find reputable and high-quality products, while also educating people about CBD.
Claudio Santos said: “Studies have indicated that CBD has anti-inflammatory properties and we’ve had numerous customers giving feedback that CBD oil and cream has helped them with joint and muscular pain.”
And Kelly is its biggest advocate, claiming CBD has allowed her to rebuild her life.
“I use the CBD cream on all of my joints every day and currently don’t have the constant pain,” she says.
“I still have some symptoms and when I overdo things it takes me longer to recover, but I’m quite good now at managing how much I can do each day.”
CBD has helped with her mental health too, easing symptoms of anxiety and insomnia.
“I was formerly on sleeping medication, but now I use CBD before bed and no longer have to take it,” she says.
“I do still suffer from depression and anxiety but I have pretty good days where I’m at 80-85 per cent. I even get some 95 per cent days.
“I’m really happy with where I am now.”
To find out more visit www.cbdshopy.co.uk
“I’m not a zombie anymore”: Why this mum-of-five is speaking out about her medical cannabis use
Mum-of-five Kayleigh Compston is the first Scottish patient to be legally prescribed medical cannabis as part of Project Twenty21. Now she’s speaking out to tackle the stigma.
“Medical cannabis has one hundred percent made me a better mum,” says 26-year-old Kayleigh Compston.
A mum-of-five, she has recently become the first person in Scotland to be prescribed cannabis legally, having enrolled in Project Twenty21, the pioneering study led by Dr David Nutt.
Kayleigh, who has fibromyalgia and functional neurological disorder (FND), which cause chronic pain, paralysis and muscle spasms, had spent years being prescribed heavy opiates such as morphine to manage her symptoms.
But now she says medical cannabis has allowed her to feel human again.
“There have been no negative side effects from cannabis whereas with pharmaceuticals there were many,” says Kayleigh, who lives in the Shetland Islands with her partner Matthew Ross and is mum to Tyler, nine, Teegan, eight, Tommy-Lee, seven, Teejay, five and Tianna, four.
“The issue with opiates is that your body gets used to it, so the doses get higher and higher and stronger and stronger.
“Now I’m not a zombie anymore, I lead a much more normal life.”
Kayleigh, whose conditions have been known to leave her bed-bound, continues: “It doesn’t take away the symptoms, but it helps you to forget about them and it relaxes my muscles spasms.
“It’s actually made me feel human and I’ve been able to get on with doing things for my kids,” she continues.
“It’s nice to be able to play games with them and drop them off at school – things which I couldn’t do when I was paralysed in bed for months.”
Kayleigh says she is also less reliant on Matthew now, who is her full-time carer.
“It’s hard work with the kids and I still have to rely on him for things, but much less so.”
And the cannabis – which she grinds and vapes in a herbal vaporizer eight times a day – also helps relieve her symptoms of anxiety and PTSD.
Matthew, 25, is also enrolled in Project Twenty21 and previously had a private prescription for medical cannabis to help manage his Multiple Sclerosis (MS).
The project is aiming to enrol 20,000 patients by the end of 2021, creating the largest body of evidence for the effectiveness of medical cannabis. Its goal is to demonstrate to policymakers that medical cannabis should be as widely available, and affordable, as other approved medicines for patients who would benefit from them.
Project Twenty21 is covering the costs of a private prescription up to £150 per product per month for those with Anxiety Disorder, Chronic Pain, MS, PTSD, Substance Use Disorder (as a harm reduction strategy) and Tourette’s Syndrome and researchers will collect data about their quality of life for up to two years.
It is hoped that the findings will make a powerful case for NHS funding.
Despite first trying weed as a curious teenager, Kayleigh never thought about it medically until a few years ago and admits to self-prescribing in an attempt to find an alternative to opiates.
Now they have legal prescriptions, the couple are advocating for wider access to medical cannabis and are keen to speak out to help change attitudes in their home country.
“I feel like the Shetland Islands are quite behind anyway, and some of the older generation still have outdated views,” says Kayleigh.
“There is still a stigma, but I think people need to open their eyes and realise that all the evidence is out there as to how much it actually changes people’s lives.”
“Like any medication, it can have side effects but it’s not what people say it is.”
Kayleigh is starting her education close to home, by being open with her children about her prescription.
“My older three children know what my medication is now. It’s about educating them that cannabis is a medication, just like any of the others I have taken.
“I wanted them to know before they get told that it’s ‘bad’.
She adds: “The children have seen how much better quality of life I have now.
“They know first-hand how much it has helped mummy.”
For more information about Project Twenty21 visit www.drugscience.org.uk/twenty21-is-now-live
Save your HRT, give me CBD
Going through the menopause hit Jenny hard, with an array of side-effects leaving her exhausted and wanting to hide from the world. Here, she shares her story of how CBD is helping her to rediscover the fun-loving woman she used to be.
As a woman in my 50s, it’s perfectly normal to be going through the menopause. But while I’ve always known it was coming, I had never appreciated how bad it would actually be.
Menopause, as all the women’s magazines tell you, happens to us all. A few hot flushes, bit of difficulty sleeping, stick on an HRT patch and you’ll get through.
For many that may well be the case, but the reality for me has been so much worse.
The sweating at night has to be one of the most awful parts. Waking up night after night, dripping in sweat, the bed sheets drenched, has become the normal over the past 18 months.
And once I’m up during the night, I can’t get back to sleep. Regularly I get up at 3 or 4am, and go downstairs to watch whatever appallingly bad TV shows are shown at that hour.
I’ll then find myself falling asleep during the day if I’m at home, which I feel is me slipping further down the slope into old age.
Hot flushes happen all of the time. And when we say hot, it’s not just a case of taking your cardigan off, the heat is incredible.
Regularly I’ll be out at lunch, sitting in just a camisole while everyone else is in jumpers, fanning myself down with whatever beer mat or menu card comes to hand.
I may as well just have Menopausal Woman written on my top as it’s so obvious.
I didn’t think the menopause would affect me so much, and I also didn’t expect to cope this badly with it.
I have always had a fantastic social life, going to dinners and lunches several times a week, and I love getting dressed up.
Since the onset of my menopause, with the tiredness and the unexpected hot flushes in particular, I’ve lost my enjoyment of it all.
The worry you’re going to fall asleep at the dinner table (that has happened before, but thankfully in my own home) or aren’t going to feel great when you’re there has seen me decline so many invitations.
Friends are asking whether I’m OK, whether I’m ‘me’, as this is so out of character.
And in truth, over the last 18 months, I do feel like I’ve lost my old self to quite an extent – although in the last few weeks, I do feel like I’m getting her back thanks to a chance discovery while online shopping.
While browsing for some new shoes, I hadn’t felt like going out that day, I came across one of those pop-up adverts for CBD.
I knew it was associated with cannabis but didn’t really know much more than that, but I continued to shop for heels and forgot about it.
That night, again, I couldn’t sleep. Having watched three back to back Judge Judy episodes, which is surely enough for anyone, that CBD advert came into my mind again.
I’d read a lot about cannabis over the past few years and the wonderful effect it had had on so many children.
I’d never had a personal interest in or connection to cannabis, but the fact people in desperate need had been denied it was something I believed was wrong.
For some reason, I decided to search CBD and menopause. HRT for me had been rubbish, so it was worth some investigation at least.
To my astonishment, there were so many stories about the strong connection between the two, the many benefits there could be, how CBD could help with so many symptoms.
I couldn’t believe it. I’m not sure I believe in fate, but there was a reason that random advert popped up on my shoe site that day.
I bought some CBD in my local shopping centre – it’s perfectly legal and readily available, which is something I hadn’t realised.
I thought it must have been a banned substance because of how it’s spoken about in whispers.
It’s not something I feel I could tell my friends I’m using as I’m not sure how they’d react. But discovering CBD has been the most fantastic thing to happen to me in a long while.
The past few weeks have been so much better. I have enjoyed a good sleep for the first time since my menopause symptoms began and am sleeping through the night again.
I’ve also felt so much better in myself, like I want to make an effort and put my make up on and put some nice clothes on.
If I had anywhere to go at present, I’d love to put my heels and best dresses on and get back out there. While I still have hot flushes they haven’t been anywhere near the extent they were before.
This is probably due in great part to the fact I’m sleeping, and sleep is at the root of so much in terms of quality of life, but CBD is said to have mood lifting properties, so that could well be another benefit.
Nothing else in my routine has changed apart from my use of CBD so I can only conclude that is the reason.
The difference in only a few weeks has been a great surprise. I do feel like I have the confidence to start accepting those invitations again.
The COVID-19 lockdown has come at a good time for me, as CBD is doing its thing for me, and I’m getting myself back to a position where I feel like ‘me’ again.
There is undoubtedly a taboo around the use of CBD, which I think is unwarranted.
I think we are far too closed-minded as a society and we don’t talk about these things which seem a bit awkward.
Even trying to discuss the menopause with some people is a conversation-changer in itself.
I do think I’d get some difficult reactions if I talked about my CBD use, which is a real shame.
I’d love to share my CBD secret with my friends, and perhaps I will at some point. Or perhaps they’re all already using it anyway.
Jenny did not wish to give her full name.
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