Samantha’s Story (Excerpts)
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… So I went with my mum to the local stop-smoking clinic where we got to see the person who goes through your options.
Champix: “A Wonder Drug”
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. 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.
Champix: “I felt like killing myself”
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.
Champix: “A Small Risk of Seizure”
Then on the 25th March 2008 my partner Anthony woke up to me having a grand mal seizure in my sleep… I was told they thought I had autosomal dominant nocturnal frontal lobe epilepsy – ADNFLE to them… 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.
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.
Champix: A Doctor’s Denial
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…
Champix: Finding the Truth
From that day, I have studied epilepsy, drugs, DNA, the brain, RNA and, most important, Champix… I have found links to ADNFLE and Parkinsons and other diseases that might be triggered in some people by Champix… 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.
Read Samantha’s full story on RxISK.org: Smoke & Pfizer get in your eyes
Follow Samantha on Twitter: @varenicline
Related Research Papers:
- Suicidal Behavior and Depression in Smoking Cessation Treatments PLoS, 2011
- Varenicline-induced grand mal seizure, Epileptic Disord 2010
- FDA Warns of Adverse Events Linked to Smoking Cessation Drug and Antiepileptics, The Journal of American Medicine Association, 2008