Lauren
Age: 28 | UK
"Since this has happened to me, I find it difficult to gather my thoughts, and even putting sentences together is such a massive effort, but I will try to explain what has happened to me as best I can.
I am a 28-year-old from Newcastle, currently working for the NHS. For years, I have struggled with low confidence/self-esteem and anxiety. Although the symptoms were completely debilitating at times, I continued to persevere without any medical intervention. At this time, I was also struggling with family health issues and other additional stressors.
Over the course of last year, I felt like I was on a downward spiral; my symptoms were intensifying, and I was also having mild issues with sleep at this point due to the stress and anxiety. It finally got to the stage where I felt like I could no longer cope by myself and decided it would be in my best interests to see my G.P, a decision I now live to regret every single day.
In a deeply vulnerable position, I attended the appointment alone on the 6th December 2022 and did not tell my family about how I had been feeling, which was a mistake. Due to my state of mind at the time, I ended up having a foggy five-minute conversation with a G.P. I was handed a prescription for 15mg Mirtazapine to help “lift my mood” and improve my quality of sleep.
I recall explicitly asking the G.P about side effects and was told “there is nothing to worry about if you want to feel better” – a phrase that haunts me every day. The GP asked if I would like any time off work as I was about to start the new medication; I turned this down because I loved my job and it always motivated me, even when I was highly anxious or feeling low.
When I returned home after the appointment, I spoke to my partner and told him I was slightly afraid to take the medication but read the information leaflet several times, did my own online research into Mirtazapine, and didn’t see anything alarming. Later that night I took my first tablet. I remember how miniscule the pills were.
Within a second of taking it, I felt a jolt through my head like a lightning bolt and I was taken aback. I lay down and fell asleep within a few minutes then slept through the night. In the morning, I felt extremely drowsy and found it difficult to get out of bed but over the next couple of days I suddenly felt very calm; a feeling I had not experienced for a long time.
I continued taking the medication and remember on occasion falling asleep during the day. The medication had a positive effect for a week or so but then after that I had periods of mania and times where I would burst into tears uncontrollably and started to act very impulsively. In hindsight, my behaviour on the medication was not normal but I was so spellbound by the Mirtazapine.
The 26th December - Boxing Day 2022, was the last day I felt like a human being. On the morning of 27th December, I woke up and noticed I had visual disturbances like nothing I had ever experienced before. My eyes were extremely light sensitive. Streetlights, car lights, any type of light looked magnified and just completely bizarre with intense visual snow.
Over the next few hours, I experienced a tingling/burning sensation in my head, particularly down the sides of my face and around my mouth which was there continuously for several days. This was also when the symptoms of derealisation/depersonalisation began to emerge; I felt like I was almost floating, no longer part of my environment and almost as though I was watching the world go by as an observer rather than an active participant. It felt completely alien.
Around this time, I developed the most brutal insomnia and was awake days on end with sometimes 30 minutes to 60 minutes sleep. At this point I was still taking the medication. I was travelling down to London for New Year’s Eve and because I felt so strange particularly with the burning in my face, I asked my partner if we could go to the nearest A&E, not something I would ever do without good reason.
After performing numerous tests, they couldn’t identify any problems, so I was left wondering what on earth was going on. I knew it was related to the Mirtazapine but was repeatedly told by medical staff this wasn’t possible; they said I had only taken it for three weeks and reactions like this don’t happen.
I made the decision to stop the medication because I was absolutely terrified by the symptoms and wasn’t warned about the importance of tapering or protracted drug withdrawal. I can’t remember the exact timeline, but everything seemed to occur at almost the same time following the burning sensation in my face.
Since that point, my life has descended into nothing short of a living hell. I have felt what can only be described as a “brain dead, zombie.” Since then, I have led an existence void of any emotion and have severe anhedonia. I cannot feel happiness, sadness, grief, excitement, pleasure. Nothing. I am no longer able to laugh, cry, or express myself. My personality has been totally destroyed, and I have become a shell of my former self.
On the 2nd January 2023, I had to ring my manager to say I was too ill to go into work because the insomnia was so severe. Eight months later I was still on sick leave, something I previously thought unimaginable.
For approximately six months following the medication, I was mostly bedbound and battling the most horrifying akathisia and disturbing suicidal thoughts which I had no control over. I felt as though I had had experienced a brain injury the effects were so severe.
I have always been very sharp but the impairments are absolutely catastrophic. I now have terrible issues with episodic memory, short and long term memory, what I believe to be amnesia, executive dysfunction, my concentration is shot to bits, almost no attention, I forget where I am, I often can't get a thought in my head, I have no interest in anything, feel no pleasure doing activities I used to love, I used to be a quick reader but now I can barely take the words in, I have difficulty making decisions, conversing, looking after myself, completing simple tasks, problem solving, planning, no longer feel hunger, I have a constant pressure in my head, constant fatigue, derealisation, depersonalisation, no longer feel the effects of alcohol, I feel like I've entered a entirely different reality where I'm locked out from the world.
I now have sexual dysfunction, no longer feel aroused, have lost feeling in my genitals. I no longer feel like a human. The list of symptoms is endless.
This experience has been the stuff of nightmares, it is truly horrific and is still continuing over a year on despite being off the medication since the end of December 2022. Weeks after the reaction, I tried to overdose and have self-harmed on a number of occasions just to feel something. It also led me to become alcohol dependent at the start of 2023.
Before taking Mirtazapine, I never felt suicidal but the effects have been so hellish that I continue to have suicidal thoughts every day. Since this happened, I maintain that the medication has caused serious harm yet a handful of doctors, consultants, members of the psychiatric liaison team and a psychologist all say this is not possible.
Opticians and eye consultants say there are no physical issues with my eyes despite the persisting visual impairment. In summer 2023 when I was physically able to, I finally started to search online to try and find some answers because I was so desperate. I stumbled across an article that described everything I was experiencing; I could not believe what I was reading. Shortly afterwards I found out about PSSD and I knew instantly this was my condition along with protracted drug withdrawal.
I am now in contact with many members of the PSSD community and they have all been so supportive – I don’t know where I would be now without the support groups. I feel like this is merely the tip of the iceberg in terms of what it has done to my life; PSSD destroys anything and everything it its path. All of the described symptoms have continued until this day; at times I feel like I am about to shatter into a million pieces.
It has impaired my ability to socialise with people as I once did and it has put enormous strain on the long-term relationship with my partner and my family relationships. I honestly can't see a future anymore and I'm extremely concerned I will have to give up my career because it's become so difficult for me. I did manage to return to work but this is becoming increasingly more difficult by the day due to the visual impairment, cognitive dysfunction, and fatigue.
These are all symptoms I did not experience before taking the drug. When I compare this to my original anxiety/depression, my current situation is a thousand times worse and something a human being should not know exists. At times, I feel like I have dementia. It has also taken a massive toll on my physical health and appearance. My menstrual cycle has gone haywire and I have only had four or five periods in the whole of 2023.
The severe insomnia has persevered, I'm totally fatigued 24/7 and I never feel rested despite previously being very active. Sleeping tablets were even prescribed by the GP in January with no help whatsoever; the pills actually made me feel more awake. I continue to have violent nightmares and even have the symptoms of PSSD in my dreams; there is no escape from this. I have sleep paralysis too on quite a regular basis which I believe is caused by the sleep deprivation.
The leaflet for Mirtazapine does not mention sexual dysfunction as a potential side effect at all, even whilst taking the medication, which is extremely dangerous and misleading. I know from personal experience that it does not spare sexual function in some people. I never realized antidepressants had the potential to be so utterly devastating and despite having no informed consent, every day I can’t help but blame myself for taking those tablets and damaging myself.
I feel like I have constantly been dismissed by doctors and I've ultimately been left to fend for myself. Every day I’m in complete survival mode, imprisoned in my own mind and body. It’s a matter of existing now; this is not a life."