On March 15, Out of My Mind was published on davidhealy.org. This was one of the first RxISK stories. At the moment it is the blog post that has attracted the most comments. The comments are worth reading – there is close to universal recognition of something that applies to the person commenting that they haven’t found elsewhere. We had no idea the problem would attract such widespread recognition. What we were more struck by at the time was how a woman with no medical or research background was able to put together the pieces of a complicated jigsaw that had defeated many academics, and researchers and almost all doctors. The message from RxISK at the start of the post was that RxISK was created to help ordinary people make just this kind of breakthrough.
Smoke gets in your eyes is very similar. A woman with no medical or research background sorts out a problem that few academics or doctors would think it possible to sort. Both women have also been faced with denial, almost hostility, from doctors and the medical establishment.
My story begins in January 2008, when I was running three times a week and training at kick-boxing. I had changed my diet and everything to get fit, even had my cholesterol checked. I was fit as a person could be. The only thing wrong was the smoking. I smoked about 5 a day and had smoked since I was 12 years old. I had heard some people talking about a stop-smoking drug that gave you no side-effects. So I went with my mum to the local stop-smoking clinic where we got to see the person who goes through your options.
I was expecting to be offered Nicotine Replacement Patches but they kept going on about Champix and how it would work well for me. They made it out to be a wonder drug. I said I’d give it a try. They asked me about my medical history and my mum said that the only thing I have ever really had was a convulsion when I was 18 months old which was due to the fact that I had whooping cough and she had put me in a fleece bed suit. The temperature had triggered the convulsion.
They gave me a form to sign. I asked why I had to sign a form and was told it was a new drug, and it was normal to do this. All the form said was that it had not been tested on people with a history of epilepsy. My mum asked: “Well, what does that mean? What about the seizure she had as a baby?” The woman said: “Oh, it doesn’t cause seizures, it’s just that they have to inform people of what areas the drug has not been tested in”. As I had never been diagnosed with epilepsy – one convulsion is not epilepsy – I signed the form. It asked about epilepsy not about a history of seizures, two different things.
I had to go to my own doctor to get the prescription for Champix (Chantix, Varenicline). I started to take the tablets the next day. I thought they were great. I didn’t want a cigarette after a few days and no side effects. By week two I had stopped smoking.
When I got to week 10 of a 12 week course, all of a sudden, I felt like killing myself. This was completely out of character for me. I am scared of dying, always have been, so this was not right. I went straight to my doctor and told her and she told me to stop the Champix.
I stopped immediately. The thoughts went away after a few days. I thought I was fine and was still not smoking.
Then on the 25th March 2008 my partner Anthony woke up to me having a grand mal seizure in my sleep. He had never seen one before and did not know what to do. He decided to ring my doctor. She told him it sounded like I had had a seizure and said that she would come out to see me.
She came to see me and gave Anthony a diazepam 10mg rectal tube. She told him what to do with it if it happened again and also told him to ring for an ambulance. I started smoking again due to stress and shock. Nothing was said by my doctor, or anyone else, about Champix withdrawal. I thought it had been caused by hormones or something and it wouldn’t happen again.
Then it did happen again. Just the same, in my sleep, but this time I came round in hospital. It took about a week for my memory to come back and even then not all my memory. It still hasn’t.
Now the neurologist got involved. I had an MRI and a sleep-deprived EEG both of which were normal. I was told they thought I had autosomal dominant nocturnal frontal lobe epilepsy – ADNFLE to them. Apparently, even though nothing shows on tests, you are still diagnosed with epilepsy. This is because more than one seizure is classed as epilepsy.
I was put on anti-epileptic drugs. I had side-effects from all of them and I was still having seizures. I just kept being told that it was all about finding the right drug for me. This went on until 2010. I opted to have a hysterectomy, thinking that this might stop the seizures, as I was still being given the impression this might be caused by my hormones. Up till this point I had been working full time as a director of a paint company.
I had the hysterectomy in July 2010. Big mistake, it made things 100 times worse. More seizures and more drugs that made me unable to function. I became very depressed, could no longer work and Anthony had to become my full-time carer. How could someone so fit have turned into this. I was praying to die because I was too scared to kill myself.
Then a friend came round to see me and told me that he had just been to the smoking clinic to ask for Champix. He had taken it twice before and stopped smoking both times but had always started again within a month. This time they refused to give it to him as he had a history of a head injury and they said there was a small risk of him having a seizure because of that. He asked them why he had not been told this before but they did not answer him.
He left and came to see me. I rang my doctor to ask if my seizures could have been triggered by Champix withdrawal. She checked the dates and told me to report it, on the yellow card, as a possible side-effect of Champix.
Angrily I got the laptop out and looked to see if the Champix side-effects leaflet had been changed to mention seizures. It had not in the UK but it was in Canada. So I asked my neurologist if Champix could have triggered my epilepsy. Her words:“I am not prepared to put my job on the line by answering that question” were witnessed by my mum. That made me angrier. This is my life – how dare she say that.
My side-effects got worse. I could not eat or function. I told the neurologist I could not live like this for the rest of my life. She shouted at me, saying my choice was side-effects or life-threatening seizures. I ran out crying. That was it. I thought I am too weak to fight any more, what was the point, nobody was listening to me. I stopped all seven anti-epileptic drugs that day. Anthony, the doctors, and my family did not know. And I prayed to God to take me in my sleep.
I was scared to go to sleep and kept myself awake for two weeks solid. I started seeing visions, was told I was psychotic and was sectioned. I tried to explain to the doctors what I had done and that anyone who had not slept for that long would become psychotic. But they wouldn’t listen and just kept giving me more drugs that made me like a “smack rat”.
Anyway, after being assaulted by the unit manager and left bruised, my father and Anthony complained and told them that what I was saying was true. They diagnosed post traumatic stress and sent me home.
From that day, I have studied epilepsy, drugs, DNA, the brain, RNA and, most important, Champix. I have two boxes full of stuff from two years of study. I know how this drug is made – I could make it.
I have found links to ADNFLE and Parkinsons and other diseases that might be triggered in some people by Champix. I am in touch with lots of people who have suffered in the same way, and worse, without any history of disease. All became ill on withdrawal from Champix and are still ill today, years on. All have told their doctors that they know it’s Champix. And all of us have been ignored until now.
It turns out that changes in cholinergic receptors – in either a4 or b2 subunits – can cause autosomal dominant nocturnal epilepsy. Varenicline is an a4 b2 nicotinic acetylcholine receptor partial agonist – it works by binding to the receptors linked to ADNFLE. The gene changes responsible are the first, and to date only, mutations described in an idiopathic epilepsy.
Champix wouldn’t be such a great cost-saver for the NHS if they had to do this gene test every time they gave it. But how much money is Champix saving if you take into account all the hospitalizations I’ve had since I was given it, and others also.
Samantha’s story also featured in UK newspapers recently. This article states that: “In a letter to Mr Birtwistle [Samantha's MP], Sir Kent Woods, Chief Executive Officer of Medicines and Healthcare products Regulatory Agency (MHRA) said: ‘It is important to note that the reporting of a suspected reaction does not necessarily mean that the drug in question caused the reported event; these may be coincidental occurrences.’In the majority of reported cases the patient had a medical history significant for psychiatric problems and/or concurrent stressful/traumatic events. ‘Based on the currently available data the benefits associated with stopping smoking due to Champix is considered to outweigh the known risks in the vast majority of people who use it.’”
For the record, there is abundant evidence that Chantix-Champix can cause convulsions, suicide, violence, and a doubling of the rate of heart problems in the year after taking it. The heart problems are notable in that the primary basis for taking this drug is to avoid heart problems. In the case of Chantix-Champix, RxISK shows 97 cases of epilepsy,and 975 reports of convulsions.
Makes one wonder if Pfizer want to hide problems on drugs whether they might consider supporting the introduction of an honors system in America, Canada and Australia. Likely a majority of little boys worldwide dream of becoming a Knight, and taking on tasks that require bravery, like riding to the rescue of damsels in distress – except these days the little boys seem to think it a wiser bet to side with the smoke breathing dragon than with a Samantha or an Anne-Marie.
Illustration: How Not to Quit Smoking, 2012 © Billiam James