Antidepressant withdrawal and serotonin syndrome: ‘I felt like I was dying, but doctors put it down to my mental health problems’

Guest post by Fiona

In writing this, I am hoping to help others through my experience. I have been shunned, ignored and mistreated due to ignorance and a history of mental health problems being on my records. You know, sometimes doctors are wrong. They need to start listening to their patients, rather than seeing the mental health issue, judging, and putting everything down to that. This could have been much worse if I hadn’t trusted my gut and done what I felt was best for me.

Here is my story.

In April 2017 I ran out of Citalopram and phoned the Health Centre for a repeat prescription. I was advised by the receptionist that a review was required before a prescription could be dispensed, so I asked for an appointment but was told I’d have to call back in the morning. I called the next morning only to be told, again, that there was no appointment. So, again, I asked for a special request for Citalopram, and advised her that I had run out of my antidepressants. I was told there was nothing she could do, and to phone in the morning for an appointment.

I called daily regarding my antidepressants, only to be told the same things. This went on for four weeks and, during this time, I continued to advise the receptionist that I was becoming increasingly unwell and suffering from the effects of not having my medication. By this time I was experiencing severe withdrawal symptoms: hot and cold sweats, shaking, lack of energy, sleeplessness, rattling headaches, feeling sick.

Every day I called again, asking for either a prescription or an appointment. During this time I had a call from a doctor, who advised that I could get a special request prescription. Again I called reception, told her about my conversation with the doctor, but was again told there was nothing she could do, and that I would have to call in the morning for an appointment.

It was May before I was finally given an appointment, and when I attended the doctor asked me why I hadn’t had my medication for four weeks. I explained that I hadn’t been able to get an appointment, or a repeat or special prescription, and she prescribed the required medication.

By this time though I was extremely unwell physically, and my mental health had declined through the stress and inability to take my medication for four weeks. Having finally got it, I was now too scared to take the Citalopram, as I was so scared the same thing would happen again and I’d be caught short. Living with this fear, and my mental and physical health in decline, I chose not to take anything, except the odd sleeping tablet and Diazepam when I was feeling despair. I continued to decline as the year went on, spiraling into a continual cycle of infections and antibiotics, while my eating and sleeping patterns also deteriorated into disarray.

In the following January I saw a different doctor, and advised her that this wasn’t a mental health concern but that there was now something seriously concerning about my physical health. Again she advised returning to my Citalopram, but by this time my fear was manic, and I was too scared to start taking them again. I had recently been diagnosed with vitamin D deficiency, and was taking vitamin D supplements, as well as prescribed antibiotics for a UTI and bacterial skin infection. My body was in meltdown; my entire system felt manic and out of control. At another appointment in March I was still being advised to take Citalopram, in addition to vitamin D and anti-fungal medication Fluconazole. By this point I felt I had no choice but to agree, and went back on a low dose of 10mg of Citalopram.

Meanwhile, an appointment with a psychologist gave me a confirmed mental health diagnosis of complex post-traumatic stress disorder (C-PTSD), but she stressed that my physical symptoms were not “all in my head”. She could tell, from both the visual state of my body and my own description, that these symptoms were very real. The health centre and local hospital had repeatedly brushed them off, ignoring me or putting it down to irrational beliefs, but to this psychologist my symptoms were perfectly apparent and clear to see.

In April 2018 I woke up feeling that something was seriously wrong, and called the health centre at 8am asking for an emergency appointment. I felt I was in danger – that was the only way I knew how to describe it. I told the receptionist it felt like my body was shutting down in some way, and that I was terrified. I was told a doctor would phone me back.

When no one called me back, I got a friend to drop me off at the health centre around 9:25, where I spoke to the receptionist and explained what was happening. She said there were no appointments. I was sweating, shaking, and dizzy, feeling faint, uncoordinated, and frankly terrified. I felt sure the spikes of adrenaline would shut my body down. It was clear to see how distressed I was as I explained all this to reception, and eventually a member of staff told me she had an appointment at 12:05. I explained to reception that I was so scared I would sit and wait for my appointment, and asked her to fit me in earlier if any space or cancellations came in.

I went and sat in the corner to wait, but no more than 10 or 15 minutes later the nurse administrator shouted over to me that there would be no room for appointments that day, even though I’d already been given one, and asked me to leave. She told me I should have gone straight to hospital, but when I explained that I was scared and confused, and asked her to call me an ambulance, she said no.

With my stress, adrenalin and anxiety through the roof, I left, terrified. As I became increasingly unfocused and uncoordinated, I stumbled near the road and was almost hit by a car. For ten minutes I tried to call my friend but had issues connecting the call. When I eventually got through to him, I could hardly speak, only managing to say ‘please come and pick me up at the health centre and take me to hospital.’ I felt like I was dying. I knew that trying to get home by myself wouldn’t be possible; I was in a horrendous state.

When I arrived at the hospital I told them I was experiencing stroke-like symptoms, and that my body was in complete and utter distress. I felt like if it continued my body would completely shut down. I was sat down with a psychologist, in my extremely physically ill and severely exhausted state, and answered his questions while he answered his phone, hardly listening to me. I’m sure that, because mental health problems were on my record, he just tarred me with that brush; I was completely ignored and not taken seriously. In the end he just said he’d fax a request for a change of medication, sleeping tablets and Diazepam. Still in the same condition, I was then discharged – having not been taken seriously or checked for any physical issues at all. The fax was never even sent to my health centre, apparently; they never received it.

At home I was physically sick and bedridden, and by this point had also lost my job. I had been working part time for four years as a personal assistant for a boy with cerebral palsy – a job that I loved – but, due to the state I was in, I’d ended up unable to look after myself, never mind a child with special needs who was confined to wheelchair and required assistance with all mobility. I had to take time off. As it got worse, I had to extend my sick leave, leaving the mother having to employ someone else to look after her child, as I was unable to. Not only did I lose a job that I loved, but the financial loss also left a big dent.

Later that same month I again asked for help, and was told “no”. I was shaking, sweating and uncoordinated, and my speech was slurred. I was told that increasing my dose to 40mg of Citalopram would help, but by this time I suspected it was the 10mg of Citalopram already causing my reactions, so I refused. I begged for help, or a referral – I was terrified – but was told it wasn’t possible. I left the appointment in the same position I’d started in.

I went to hospital again, feeling like I’d been hit by a bus. I felt like I had whiplash in my spine, neck and limbs. I had blood tests taken and was told I needed to change my lifestyle – but I didn’t drink or take any drugs other than the ones being prescribed. I didn’t know what other lifestyle changes I could make. After I was discharged, I decided to come off my antidepressants altogether. After about three days, my symptoms started easing, and the reaction to the drugs started to calm down.

By chance I happened to notice the instructions on the leaflets for my prescribed medication, where it lists all of the side effects. For all of the symptoms I’d been experiencing – those that I’d described to the receptionist and doctors – the leaflet stated that you should contact your doctor as soon as possible. But when I’d done that, I was ignored.

I already had a pre-booked appointment with the doctor later that week, so when I attended this appointment I told her that I would be recording our conversation. I told her what I had found, and only then did she finally believe me. I told her that the side effects listed in the leaflet were all the symptoms I’d been describing to her, which she had ignored – as had both the receptionist and the hospital staff.

“In hindsight,” she said (I could have taken that word and slapped her over the head with it at that point!), “after listening to you today, it sounds like you were having a reaction to the medication. I do know about serotonin syndrome but, based on what you were describing at the time, I had put it down to an attack of health anxiety.” She apologised several times, and I told her that I know my own body and mind, and know the difference between health anxiety and something serious. “Maybe you should start listening to your patients instead of ignoring what they’re telling you,” I suggested. If I had taken the further 40mg prescribed that day, the consequences could have been catastrophic.

Throughout all of this I have been ignored, shunned, tarred with a brush of mental illness and shown that, in every way, healthcare professionals felt it was not their problem and wouldn’t do anything to help. That sheer and utter arrogance, ignorance, and lack of care for a patient is terrifying.

My life has been majorly affected by this. Some friends and family backed away, choosing to believe what the doctors were saying at the time: that I was being irrational, and that it was all in my head. My trust in the health centre has been reduced to nothing. I find it hard to trust anyone, and feel totally wrecked by this whole experience. My memory and brain fog are terrible, and I can still become worn out and weak quite easily. I can’t remember much from the last year and a half. I feel like it had fried my body and brain.

2 thoughts on “Antidepressant withdrawal and serotonin syndrome: ‘I felt like I was dying, but doctors put it down to my mental health problems’

  1. This is what millions of people have gone through and continue to go through including young kids. This class of drug is like no other . Drug companies don’t test them for long term safety . They get sued all the time for how much damage they cause but they are protected by a broken system and they are fully able to lie about the safety. Basically these pills are worse and more dangerous than any street drug . Yet it’s portrayed as safe as a multi vitamin. I feel for anyone who trusts their drs .They are in for a big wake up call

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