(This story, authored by Anne-Marie, epitomizes what RxISK.org is all about. It shows one woman extraordinarily getting to grips with a problem she has on treatment. The hope when RxISK.org is up and running is that we will be able to make it easier for people like Anne-Marie to engage with their doctors to solve problems like this. Unfortunately even though clearly a drug-induced problem Anne-Marie does not want to be identified – David Healy).
I have been asked to write this story to raise awareness about a strange side effect of treatment and my efforts to get to the bottom of it.
Before my problems began I had been working as a health care assistant at my local hospital in Surrey for five years. I enjoyed my job. I had a stable life. I owned my own home and car.
Following the sudden and devastating death of my father I became anxious and over a period of a year developed a fear of choking which got worse to the point that I was avoiding food and losing weight. I realized I needed help.
I went to my GP and was prescribed paroxetine 20mg in liquid form because I couldn’t swallow the tablets. I had nausea, dizziness, felt spaced out and detached but was assured by my doctor that these symptoms would settle down.
After a few months things did start to improve. I noticed my eating had returned to normal. I felt much more energized and more confident and was able to complete a day’s work without feeling drained and exhausted. I started socializing again.
To begin with I was concerned about drinking alcohol on the medication. I checked the patient information leaflet which gave, what seemed to me, to be a mild warning that “although it is always advisable to avoid alcohol whilst taking medication there is no known interactions with Paroxetine and alcohol”. This reassured me that it was safe enough to have a few drinks with friends.
At first I was only having a few glasses of wine but slowly over time I drank more and more. I began saying and doing things I had no memory of later. I got banned from restaurants and bars in my local town and became an embarrassment to my friends. Eventually some of my close friends and family distanced themselves from me. I was losing everyone around me and losing control of my life but I just didn’t care. I felt like I was in a dream and that none of this was real.
I became verbally aggressive and my behavior was reckless. On one occasion I climbed out of a velux window and onto my roof. I was not trying to kill myself. I didn’t even consider the dangers of what I was doing.
I began to get into trouble with the police, in the main for continual nuisance phone calls to the police station. This happened on a regular basis when I was drinking. Sometimes I would ring them 20 to 30 times a night on their non-emergency number with only a very vague memory of doing so. It resulted in me getting arrested on numerous occasions.
After getting arrested several times I began to feel that something was wrong. I started taking time off work. I got cravings for alcohol that were so intense I felt I was possessed. I would start drinking and couldn’t stop. I’d continue until I was either arrested or I collapsed into a coma. Things were getting very out of hand. I felt alone with my problem and couldn’t understand why I was behaving like this. I felt that no one understood what was happening to me or cared.
I began to research on the internet to find an answer and I found other people reporting cravings for alcohol on SSRI medication on many websites. This really shocked me. Yet no one in the medical profession seemed to be taking any notice of it. Why? The first time I saw a psychiatrist I was told that it was due to my drinking problem.
I knew I was drinking too much but I also had terrible overwhelming uncontrollable cravings for alcohol. I printed some of the information from the internet out and gave this to my doctor and tried to explain that I thought the medication was giving me intense cravings for alcohol.
My doctor was very sympathetic but not convinced. Again I was told that I had a drink problem and was in denial. He did however agree to change my medication and prescribed me 20mg of citalopram. I was referred to my local drug and alcohol clinic.
Following the switch to citalopram over the course of a couple of months, I felt less aggressive. However my cravings for alcohol were as strong as ever and I still couldn’t stop drinking. Things spiraled further out of control. I spent time in prison, was suspended and eventually sacked from the job I loved. Even a couple of alcohol free months in rehab, where I was provided with overwhelming help and support, wasn’t enough to stop the pattern continuing as soon as I returned home.
By now I had given up on trying to tell my medical team that I thought it was my medication that was causing the problems. I was accused of being in denial over the alcoholism but I was certain that these intense cravings for alcohol were being induced by the SSRI.
Before I had searched for others with similar problems, now I began searching for answers. First I googled alcohol cravings induced by paroxetine and then by citalopram. The first web pages I came across were from the depression forums and similar websites where people where sharing their stories about the same alcohol cravings and looking for answers. I came across the International Coalition for Drug awareness, the Seroxat Users Support Group and the Seroxat Secrets website where many people were reporting the same thing.
I decided to start looking at research papers but I couldn’t find any on SSRIs and alcohol cravings. I then read a message on one of the forums that mentioned a Yale study from 1994 that had a link to serotonin. This pointed me toward reading about alcoholism and the serotonin system.
I read many papers that I only vaguely understood. I had to learn all about serotonin receptors, transporters and neurons to understand the research papers I was reading. I had to leave it several times and go back to it as my head was hurting trying to understand it. I nearly gave up looking several times but couldn’t because I knew the answer was there somewhere. I learnt that there were seven serotonin receptors and was very disappointed to learn that there were even more receptors connected to these receptors. There was also only one receptor though that had a gateway to dopamine which was the S-3 receptor. I now needed to learn what all these different receptors did and to see if any were connected to cravings for alcohol. There were no easy answers to this.
I wanted to wean myself off citalopram. I knew it was ruining my life. In the first month I couldn’t believe the change in me. I felt as if I had been given back my sight and hearing again. I felt in awe of everything around me. Had I really been like this for ten years and hadn’t realized it? Almost immediately the cravings for alcohol reduced by about 50%.
But withdrawal wasn’t easy and I went through two months of distress with extreme mood swings, panic attacks, sensitivity to noise, feeling like I had the flu with aches and pains. I couldn’t cope with this so went back to my GP and was put on mirtazapine 15mg, which was later upped to 30mg as I was experiencing restless leg syndrome at the lower dose. (I had seen on the internet that another woman had a similar experience as me on 15mg mirtazapine which disappeared at 30mg).
My cravings went completely. I realized that mirtazapine may have the answer. I knew it worked differently to the SSRIs.
I looked up medications for alcoholism and came across a drug called ondansetron, which works by blocking the S3 receptor and eliminating cravings. I discovered that mirtazapine also blocked S3 receptors.
I searched for alcoholism and S3 receptors and found that the S3 was the only serotonin receptor that had a gateway to dopamine and a paper ‘Functional Genetic Variants That Increase Synaptic Serotonin And 5HT3 Receptor Sensitivity Predict Alcohol And Drug Dependence’. I was amazed. It makes sense that if some people have a genetic link to alcoholism mediated through the serotonin system that SSRIs might increase this sensitivity and mirtazapine block it.
I have also just found another research article that was carried out on mice back in 1990’s that also found that if S3 was blocked in mice it stopped the mice from drinking alcohol.
It’s taken me a lot of time, reading and learning but I now have understanding of why I had such intense cravings for alcohol whilst taking SSRIs.
It makes me angry that we never had warnings like they do in the United States. Why were we not being protected here in the UK with appropriate warnings in the same way? If my GP had known that SSRIs could cause cravings for alcohol in some people he would have taken me off these drugs at the very first signs of drinking.
This would have saved me years of suffering and maybe helped many other people too. I’m sure that this is a problem that is more common than people realize. In addition to all the people I have come across reporting these effects on various internet websites, I have met many people who have had similar problems or who know of people who have also had problems on these drugs.
People on these drugs are vulnerable anyway and it is worrying to think how many could be drinking to excess across the country because of a craving for alcohol caused by treatment. It’s absurd to give the impression these drugs are relatively safe with alcohol if the tablets cause some people to experience intense cravings. It’s worrying also that both the drug and alcohol can independently cause confusion, disorientation, hypomania, aggression, and obsessional and bizarre thoughts and behaviors and that the combination in some people can make this much worse.
It’s crazy that patients have to get together on the internet to compare their side effects and discuss their problems because there is nowhere else to go. It has made me look to other people’s experiences for information now regarding drugs as they seem to be more accurate and honest in their findings than companies, regulators or doctors.
I didn’t realize until I came off the medication how bad I was. I feel ashamed and guilty for what I put people through. I have lost my job, had to move home, have a criminal record and lost the respect of family and friends. This could all have been avoided if there had been proper warnings in place and effective communications between different authorities.
I saw my retired GP in Asda recently and he asked me if I was back in Nursing. I told him no, I will never be able to go back now after what has happened to me. He said nothing and walked off. I didn’t mean to sound as if I was blaming him but I think he felt that was what I was doing. I felt guilty afterwards. I don’t blame my GP at all, I blame the drug companies and MHRA. What annoys me is that even the Department of Health wrote back to my MP basically laying the blame on the GP who they said should have noticed any changes in my behavior.
I want to tell my story as a warning to anyone who may be craving alcohol on SSRIs. I also want to tell people that sometimes it’s a mistake to leave it to the experts. And finally I want to tell doctors that your patients can often see that the information you are getting is wrong — we don’t blame you for this, we just want you to listen to us.
(The extraordinary twist in the tail here is how the regulator manages both to deny the existence of this problem and blame the doctor at the same time. This is becoming ever more common in modern healthcare systems — DH).