This page is intended as a testimonial to all those who needlessly suffered the severe side effects and withdrawal problems now known to be associated with the antidepressant drug Venlafaxine Hydrochloride (Marketed as Efexor or Effexor).
Background information.
In June 1996, just days after starting a new job, my estranged wife took it upon herself to abandon our four young children outside my home with their only belongings being the clothing that they had on. Given the distressed state of the children I found myself, in the circumstances, with no choice but to give up work to look after them and to hope that my doing so would in time rebuild their confidence and emotional well-being.
Shortly afterwards I was diagnosed with depression by my GP and prescribed an anti-depressant medication known as Effexor/Efexor (Venlafaxine). Unbeknown to me this drug had only just been licensed and made available but because it had been heavily marketed to GP practices as an equally safe and effective alternative to the SSRI (or "Selective Serotonin Re-uptake Inhibitor") type drugs, like Prozac (Fluoxetine), for example, my GP decided to prescribe it.
At the time, based on the information which had been made available by the manufacturer of the drug, my GP was under the impression that the drug was relatively safe in use and had no significant withdrawal symptoms. Indeed, the patient information sheet at the time stated as follows "If Efexor is stopped suddenly some patients may experience symptoms ..... these symptoms are generally non-serious and disappear within a few days".
Serotonin Syndrome (also known as Serotonin Toxicity) Over the next 18 month period (following; (i) an increase in dosage from 75 mg/day to 150 mg/day, (ii) a failed attempt to discontinue the drug at 150 mg per day and (iii) an increase in dosage from 150 mg/day to 300 mg/day), I experienced, on at least two separate occasions a very serious and, indeed, potentially fatal medical condition known as "Serotonin Syndrome" (now known as "Serotonin Toxicity") which is, in simple terms, a toxic reaction to extremely high and out of control Serotonin levels resulting in a loss of control of, first, voluntary bodily functions (like control of movement, logical speech and going to the toilet) and then, secondly, involuntary bodily movements (like breathing and body temperature) eventually progressing to coma then death. On each occurrence of the syndrome the symptoms increased in severity and on the third of those occasions I know, as well as anyone can, that I reached the tipping point at which, unless I somehow pulled back, I would lose my life.
Below (on the left) is a list of the usual signs and symptoms of Serotonin Syndrome as set out in an FDA Alert concerning Venlafaxine & Serotonin Syndrome (eight years later). I have also marked at the side of each sign or symptom, those which I experienced. Also, (to the right) is a table containing the new decision rules used to diagnose Serotonin Toxicity known as "the Hunter Rules" (full text article available here). From either one it is quite clear that the condition which I developed was Serotonin Toxicity (Serotonin Syndrome).
1. Restlessness (yes)
2. Diarrhea (yes)
3. Hallucinations (yes, audible and visual)
4. Coma (no)
5. Loss of coordination (yes)
6. Nausea (yes)
7. Fast heart beat (yes)
8. Vomiting (yes)
9. Increased body temperature (yes)
10.Fast changes in blood pressure (not known)
11.Overactive reflexes (yes, including involuntary body movements, arms/legs flailing out of control etc.)
Note: In 2009 the FDA issued a further Safety Related Warning about Venlafaxine which confirmed the possibility of developing Serotonin Syndrome or Neuroleptic Malignant Syndrome-like symtoms when Venlafaxine is used on it's own.
Venlafaxine (or SSRI) Discontinuation Syndrome.
Simultaneously to the development and re-occurrence of this potentially fatal medical condition I also found myself unable to get off the drug as missing even one single tablet would lead to devastating and extremely severe withdrawal symptoms which included severe electric shock-like pain directly in the brain, which felt like a knife was slicing through it every few seconds, and the worst possible flu-like feelings that I have ever felt, making it impossible to stand or sit-up or to eat or drink anything other than the occasional sip of water without being overcome by never-ending fever, dizziness and nausea. Combined Consequence.
As a consequence of these two opposing but interwoven problems, I found myself, effectively, addicted to and/or physically and psychologically dependent on (i.e. unable to get off) a drug that had the potential to kill me and it wasn't until the near fatal occurrence of Serotonin Toxicity (Syndrome) that I simply became too ill to manage the medication itself and, as a result, I went through the withdrawal symptoms which I have described lasting several months.
Memory Loss.
Throughout the entire period that I was taking Venlafaxine I also persistently suffered impairment of my short-term memory and during the last six month's of treatment with Venlafaxine this developed into something very similar to that seen in people with senile dementia. In turn this "dementia-like" memory loss resulted in a great deal of confusion making it impossible for me to deal with my own affairs and leaving me needing the assistance of friends and family to do this on my behalf. Which is something that I would have never thought to be remotely possible, given my background in the legal profession.
Subsequent Events.
After stopping Venlafaxine all of the symptoms described above stopped and they have not reoccurred since.
In or around March 1999, after I had recovered sufficiently to do so, I started undertaking research myself to try to understand what had happened to me and in order to do this I taught myself to understand the fundamental nature of the depressive illness, the chemicals involved in regulating the various processes which are thought to cause depression, the nature of the various medications available, their methods of action, their classification and all of the relevant terminology associated with all of these things.
After spending a considerable amount of time on this "project" what I discovered was that the side effects and withdrawal symptoms which had effected me were actually being reported all over the world not only by individual patients but also by all types of medical professional, but that nobody had actually sought to "join the dots" and identify the pattern, which was to me glaringly obvious by this time.
As a consequence I myself collected together all of the information that was available concerning the side effects and withdrawal symptoms associated with the drug and I incorporated direct links into all of these pieces of information (e.g to published medical reports) into a new website which I created under the name "EffexorFX". This therefore made all of the information that currently existed concerning the various problems associated with the drug readily available to medical professionals (and, of course, members of the public) in a format which individual medical practitioners would recognise and accept as being valid, genuine and reliable and through which they could access information about the drug very quickly and without having to trawl through a huge number of medical reports which may or may not be relevant. (There is a similar sort of thing nowadays at AntidepressantsFacts.com) Within just a few months of the site's creation it soon became accepted by a number of influential medical information publishers (some of which are linked to below) as a leading and authoritative source for medical professionals looking for information about the adverse reactions and withdrawal symptoms associated with this particular drug's use.
By the beginning of 2000 the website had received over 250,000 visits and had, to my surprise, been nominated for and had then become a short-listed finalist in the prestigious mental-health media awards (along with websites run by the BBC and the Samaritans, for example), which I like to think was quite an achievement in the circumstances (even if I do say so myself!). By this time I had also received over 1000 emails from patients experiencing difficulties with the drug (particularly withdrawal difficulties). Also by this time, the site had also managed to help to create sufficient cause for concern amongst the medical profession to prompt the Food & Drug Administration in the United States to re-examine the drug's trials database and licensing literature and in March 2000 the FDA forced the manufacturer to include warnings in the literature supplied with the drug about the various side-effects and withdrawal symptoms which I and many thousands more had suffered as a result of taking a drug - A drug which we and our Doctors were told was safe, even though (as the wording of the warnings confirmed) the manufacturer knew from the clinical trials database that they could in fact occur, but had failed to disclose this information to the various regulators.
As my personal objective had been achieved I brought my site to an end in early 2002 and I moved on to other things (whilst continuing to research and monitor issues concerning the drug out of personal interest).
Over the years which have since elapsed, the US and UK drug regulators have required the drug's manufacturer to issue numerous other warnings about the safety of the drug, it's potential to cause Serotonin Toxicity (Syndrome), it's other potential side effects and it's withdrawal symptoms. Eventually this has led to the drug being regarded by many in the medical profession as one which should be prescribed only as a last resort when other drugs have failed.
Regrets & Lessons.
My main regret concerning all of the above is that the drug's manufacturer has never been forced to compensate the patients who suffered as a result of it's failure to provide full and frank disclosure at the outset of all of the problems which, it is certain, it knew to exist. I suppose that this injustice is why I have chosen to create this page on my new site at this time - at the very least the injustice itself should be recorded as a testament to all those who suffered as a result of the lies and half-truths which they were told by the manufacturer of this drug.
Also, I would like to think that the medical profession and the various drug regulators may have learned a lesson from the manufacturer's dishonesty about Venlafaxine, but, even today, many doctors prescribe the drug without any apparent awareness of the true nature of the drug's side effects and withdrawal symptoms and (in the UK) the regulators still do not insist that all of the clinical trials data is disclosed, allowing pharmaceutical companies to continue to withhold crucial information from doctors and patients alike.
Links to further, more detailed, information:
For further information about the matters which I have mentioned on this page, please see the following links:
Social Audit - home of "The Antidepressant Web"
You may also find the following article about Venlafaxine withdrawal which was published in the New York Times and written by a the patient himself, Bruce Stultz, enlightening. The article is entitled "Self-Nonmedication".
If you find any other links that you think should be listed here so that other people may benefit please do let me know.
REPORTING VENLAFAXINE ADVERSE REACTIONS
Finally, but perhaps most importantly, if you live in the UK and have experienced adverse side-effects or SSRI Discontinuation Syndrome through taking or stopping Venlafaxine please consider reporting this to the UK drug Regulator (the MHRA) through the Yellow Card Reporting Scheme. You can do this online or by using the printed form which can be downloaded here: Yellow Card Reporting Form. The MHRA do take these forms seriously, so reporting your experiences will help them to understand exactly what effect this drug has on the lives of real people.
Thanks for taking the time to read this page.
Best wishes,
Steve Whiting