This post is by Tracey G. Tracey approached me and as you’ll see others in October 2020 for materials on antidepressants to give her Member of Parliament, Johnny Mercer. She had been in touch in 2018 – “lost in the world of not being taken seriously or believed with regards to a possible protracted withdrawal”. It was easy believe her but not easy help – no-one knows how to help when this happens – See Side Effexor Withdrawal, Protracted Antidepressant Withdrawal and Helping H.
I ended up on an antidepressant called venlafaxine (Effexor) and knew when I missed a dose I would be sick. I’d never heard they could cause problems or that they’re hard to come off, so I never acknowledged that missing a dose and the subsequent dizziness and brain zaps – I didn’t have the language at the time to describe them that way – were signs that I’d need to taper off slowly. There was no information at all. I barely used the very new internet, other than for social media, mostly sharing funny animal animations. I never considered looking up the effects I felt when I missed a dose.
The media education around mental health was hardcore “you have a chemical imbalance and tablets correct that imbalance” but that never felt right to me. I liked philosophers and looking at the bigger picture. If a plant is struggling maybe it needs more or less water, more or less sunlight and definitely more or less love. Something was irking me very early on, but I couldn’t put my finger on it.
Fast forward and lots of time going through the mental health system, sometimes wanting diagnoses and medication. I felt uneasy in the world and wanted validation that I was unable to give to myself. I’d never been able to soothe myself and even as an adult I looked to others to “parent” me. Psychiatry suited that. At the time it gave me the security I thought I was looking for.
I ended up trying lots of different types of medications and in the end settled for a combination of Venlafaxine, Quetiapine, Pregabalin and Amitriptyline. Pregabalin – Lyrica – at the time was very new. I’d be tapered off Valium in 3 weeks in a detox unit. My anxiety, amongst other feelings I couldn’t put words to, was atrocious. The first dose of Pregabalin brought me powerfully and noticeably “back into my body”. I never had that experience again after the first dose. Higher doses were needed to get the same effect. There was no warning about addiction/dependence and no-one told me about the awful withdrawal from this drug. (See Kicking Lyrica).
Fast forward and a decision was made with my family doctor to stop three of the meds. I was about to cold turkey three medications with no warning that it could be dangerous.
I became very unwell. I’m, for some unknown reason, able to focus myself and distract myself (sometimes) despite intense suffering. Other times I just have to lie down until the nightmare subsides. I didn’t go back to the doctor because I didn’t appreciate the risk I’d taken. I did try to hang myself. No questions about withdrawing off the drugs were asked, and I never considered it a determining factor at the time.
I made the further decision to stop my venlafaxine cold turkey, so I could be free from all medications. I had been on it for fifteen years. I still can’t put what happened into words. I walked through an invisible wall into a nightmare of suffering that no one else could see or appreciate. I stopped sleeping. I had less than an hour a night for over a year and experiences I can only describe as vaguely paranormal. I still didn’t appreciate this was all withdrawal.
When I saw a TV program with a woman called Tabitha, talking about venlafaxine and protracted withdrawals, the penny dropped. Up until then, I’d been going to primary care doctors randomly sobbing, feeling very physically unwell and vulnerable, and was frequently met with anger, denial and hostility. I had to keep trying different doctors.
I went with my partner to a new doctor, feeling somewhat hopeful he’d look into the evidence about venlafaxine and protracted withdrawals but he point blank refused to consider this. I was having night time fits at this point, and unbearable sound sensitivity, and other symptoms, but he wouldn’t investigate the fits because they weren’t witnessed. I was not trusted as a witness to myself.
I numbed my distress, felt ashamed and considered his suggestion of quetiapine to help me sleep. I hadn’t slept for a year and a half at this point and I could tell he suggested quetiapine as much for the “mental health” I was experiencing, as for the sleep. He was certain I was in a mental health episode unrelated to withdrawals. My body told me that was untrue.
I’d joined the withdrawal groups on Facebook and was starting to see a pattern of cold turkey and fast tapering and atrocious symptoms. People in crisis daily. I’ve lost count of the people I’ve spoken to over the years, in forums and directly messaging, who were in the same prolonged distress that I was in with the same experiences with primary care doctors.
I’d supported people who’d taken their own lives. One was cold turkeyed off venlafaxine by a doctor in America. She’d also been isolated from her family by the doctor who convinced them she was mad and that the forums she was on for support and understanding were making her worse. This is the standard akathisia story.
Another man was local and came to me through a Kinesiologist I see (the only therapy that brought a lot of my suffering down a level). Tom (not his name) was in the same distress and my kinesiologist thought I’d be able to support him in some way. He’d been “bridged” off one drug onto another a few years back and had never been the same since. He took his life.
The Quetiapine I’d been put on made me feel worse, even though I got some sleep. The nightmares I experienced were haunting. When my doctor asked how I felt I told him and he said, “Quetiapine can cause depression” and offered me an anti-depressant to counteract what he thought was a side effect. At this point, because I’d been through poly drugging (symptom chasing), I took control and tapered myself off. I crawled off quetiapine tapering as best I could, feeling like Tom did, desperate to get off the drug as quickly as possible. I had aggressive persistent looping suicidal thoughts and serious physical symptoms. I had no medical support. I’m lucky to be alive.
I wanted to find a way to make a change, somehow. I was learning how medications can cause mental health episodes – a friend of mine had only ever experienced voices on medications. This is something I still frequently come across. I was seeing heart-breaking preventable long-term life changing nervous system injuries. It was very distressing to see this over and over again with people being blamed for their suffering.
I thought educating prescribing doctors was the only way to break the cycle of what is perhaps abuse or at least negligence. Medical schools didn’t seem the best option. Someone independent seemed needed.
I approached my Member of Parliament, Johnny Mercer, who was really keen to help, with talk of setting up an independent panel of educators to reach newly trained doctors.
Then I received a phone call stating he shouldn’t have offered me that. After that, the emails from his office started. They bombarded me with “proof” – the NICE guidelines – and how they were being adhered to. It was frustrating, invalidating, and disrespectful. They were determined to prove I was wrong.
It took me time to get my strength back. By this time I’d spent three summers in bed, had to take three baths a day to calm down and was frequently overwhelmed and full of self-doubt. There was lots of back and forth through emails. Then the acknowledgement of my emails stopped.
I decided to keep sending proof of what was happening. I sent videos of doctors who were struggling to come off medications – Mark Horowitz and Peter Gordon. I sent up to date articles clearly stating that there is a massive problem. I posted on the Let’s Talk Withdrawals page, requesting people to send me a message I could send my MP telling exactly what happened to them. They never replied.
I built up strength to ask for a second appointment. I was incredibly nervous, which I stated when I Zoomed. A lady was present who wasn’t introduced, which made me feel really intimidated. We did not communicate well and in retrospect I realised he’d not looked at one thing I’d sent. He’d made his mind up that everything was in order and told me I was a very difficult woman and insinuated I was a conspiracy theorist.
I was devastated, came off the call and cried. I have no family around me and I’d just split from my partner. I really struggle to trust now and don’t make or keep friends easily anymore. I was vulnerable. Covid was happening and I was very isolated.
I wanted to assess the interview and emailed to ask if I could have a copy of the meeting, assuming because we were on screen that it had been recorded. For my sanity I wanted someone else to look at what happened because I couldn’t make sense of it at the time.
Johnny Mercer’s office haven’t replied to either of my requests for a copy of the meeting.
I came away from all support groups. I couldn’t cope with the day-to-day crises anymore. It took me months to find my voice again and its still very shaky.
Apart from the three posts above, there was another RxISK post about Venlafaxine withdrawal in June 2020 Managing Effexor and SSRI Withdrawal that featured an image with the British House of Parliament in the background – before Tracey got in touch about contacting JM.
Johnny Mercer portrays himself as having inner demons from childhood – these things can stay with you, he says, for 50-60 years.
He is ex-army, a Captain in Afghanistan. He became a British Conservative MP and was in Boris Johnson’s Cabinet but resigned in April 2020 saying the British government needed to stop harassing soldiers who had been linked to the killing of innocent civilians in Northern Ireland during the Troubles there.
He has been contacted about this post. There will be a follow-up post next week with more details.