The drug that had me hooked for years

Today is Sunday 5th May 2024. It's a day I will remember as I have just taken my last ever dose of the anti-depressant paroxetine. After nearly two decades, I have got myself off this drug once and for all! In this article I'm going to explore the world of anti-depressants and their impact on me, and I'll make a plea for greater awareness of the dangers of withdrawal.

I've lived with depression and anxiety my whole life. I was first diagnosed at the age of 17 in 1981, when I was put on a high dose of Mogodon, the trade name for nitrazepam, after being told I was unstable. It's a heavy duty, hypnotic drug, used for the short-term relief from severe, disabling anxiety and insomnia. Looking back it's quite scary to think that I was put on this drug so young. It did help me sleep a bit better, and it did knock me out, but it didn't cure me.

My next serious encounter with anti-depressants happened when I was in my late thirties. The severe and debilitating urticaria and angioedema (hives and swellings) that I had lived with for many years as a child suddenly returned with a vengeance. These pictures are of me at that time. I was referred to the specialist clinic at St Thomas' Hospital and put on a cocktail of drugs including anti-depressants, which are known to help with the symptoms. This was at a time when I was pretending to the world that I didn't have anxiety and depression, and when my outbursts (now known to be panic attacks) were put down to me being over-sensitive and neurotic. As with the nitrazepam, the drugs helped with my symptoms but it always felt like a putting a sticking plaster over a gaping wound. The first antidepressant was amitriptyline, which I had to take at night as it causes drowsiness. Citalopram, fluoxetine, and mirtazapine were amongst others that were prescribed and dutifully taken over the years, although I can't remember all the names now. At some point, I was put on 20mg paroxetine. As far as I was concerned, this was just another drug to help with my condition and I thought nothing of it. That bout of urticaria and angioedema (U&A) lasted three years, during which I had a three month sick leave but other than that, I just worked through it. Once it had gone into remission again, I stayed on paroxetine as I was starting to admit to my doctors that I had severe anxiety and depression.

In my late forties, I was dealing with a marriage break-up, caring for my dying father, experiencing menopause symptoms, raising two teenage sons, and working in a full time demanding job, managing services in the not-for-profit sector. Depression and anxiety became increasingly difficult to hide and to manage, and I had a breakdown. I just ceased to function. Getting out of bed was an achievement and getting to the shops a major success. I had another three months sick leave, and my paroxetine was upped to 40mg.

Once I was feeling stronger, I went to the GP to ask if I could stop taking paroxetine. It was only then that I found out that for some people, this is a problem. Paroxetine is a selective serotonin reuptake inhibitor (SSRI), and it's now well documented that discontinuing these can cause severe withdrawal symptoms. Antidepressant discontinuation withdrawal symptoms were in fact recognised as far back as the late 1950s, although this wasn't widely known about at the time. Withdrawal symptoms from the modern SSRIs, SNRIs and similar medications were first reported in 1991, three years after the SSRI fluoxetine was released on to the US market.

A review in 1998 identified over 50 different symptoms, which ranged in severity and number for different people. A whopping 66% of those on paroxetine reported four or more symptoms on the DESS, the criterion for experiencing a ʻdiscontinuation syndrome.' And if you look at the table above from that review, downloaded from Horowitz and Taylor, 85% of those people experienced dizziness and 76% had worsened mood. Most of these studies were done on people who withdrew from the drugs quickly. Despite these alarming figures, many patients and doctors remained apparently unaware of the risks.

More recent and in-depth analysis of WHO data by Gastaldon et al (2022) reveals that paroxetine is way out at the top of the list of all antidepressants in terms of withdrawal symptoms. This analysis also shows that paroxetine and three other anti-depressants have worse impacts on people during withdrawal than the opioid buprenorphine, a drug well known for causing withdrawal syndrome.

This is not to say that the most severe side effects affect everyone, although it doesn't seem clear exactly how many people are affected. The patient information leaflet states that most people find that any symptoms are mild and go away within two weeks, although for "some people" these symptoms may be more severe or go on for longer. This is backed up by some research findings, e.g. Haddad and Anderson. However, other, more recent research says that the figures are much higher. Davies and Read have found that more than half (56%) of people who attempt to come off antidepressants experience withdrawal effects, that nearly half (46%) of people experiencing withdrawal effects describe them as severe, and that it is not uncommon for the withdrawal effects to last for several weeks or months. It's recognised these days that severe discontinuation symptoms can hinder or even prevent patients stopping antidepressant treatment: side effects can be so unpleasant that the patient has to restart the antidepressant to stop the symptoms. How often this occurs, and why some patients experience severe problems when most do not, is still unknown.

It's now recommended that before starting SSRIs, there should be a discussion between the prescriber and the patient about the possibility of withdrawal reactions. The UK government website carries a clear warning on the potential risks, saying that all SSRIs and SNRIs may be associated with withdrawal reactions on stopping or reducing treatment, and that paroxetine and venlafaxine seem to be associated with a greater frequency of withdrawal reactions than other SSRIs.

The most commonly experienced withdrawal reactions vary according to what you read.

The UK government website says they are:

• dizziness

• numbness and tingling

• gastrointestinal disturbances (particularly nausea and vomiting)

• headache

• sweating

• anxiety

• sleep disturbances

The patient information leaflet (pictured) that is inserted into every pack of the drug lists withdrawal symptoms as:

Common (up to 1 in 10 people)

• feeling dizzy, unsteady or off-balance

• Pins and needles, burning sensations and electric shock sensations, including in the head

• tinnitus

• sleep disturbances

• anxiety

• headaches

Uncommon (up to 1 in 100)

• nausea

• sweating (including night sweats)

• feeling restless or agitated

• tremor

• feeling confused or disorientated

• diarrhoea

• feeling emotional or irritable

• visual disturbances

• heart palpitations

The analysis done by Gastaldon et al revealed that the most common side effects were:

• dizziness

• nausea

• paraesthesia (pins and needles)

• headache

• feeling abnormal

• anxiety

• suicidal ideation

• insomnia

• depression

That third list is much more concerning. On neither the leaflet for patients nor the government website is there any mention of feeling abnormal, depression or suicidal ideation. I would hazard a guess that most patients will trust the leaflet that comes from the drug supplier, which in this case, could be much clearer in my opinion.

You may have noticed that most of the items on the lists are in bold. Those are the symptoms that I endured during tapering off, even during really, really slow tapering off. It's been known for years that a slow reduction in dosage is the safest option, but even doing this, I was experiencing symptoms. I had paroxetine withdrawal syndrome, as it is sometimes called. Some scholars disagree with this term because people don't crave to be back on the drug, like they crave something they are addicted to. So the phrase discontinuation syndrome is sometimes favoured.

Back in 2011, it took a few months, but I managed to get down to 20mg and stayed there for the next few years. Getting off it completely was going to be hard and I had a lot going on in my life so I stayed on it. Then in 2019, the urticaria and angioedema returned and the paroxetine was upped to 40mg again, alongside a load of other medication including four times the licensed maximum dose of the antihistamine fexofenadine, which could only be prescribed by St Thomas' Hospital. I didn't care as the U&A was so debilitating; I would have chopped off my arm if I was told it would help. Once the U&A had subsided again two years later, I got back down to 30mg on my own, only to go back up to 40mg during another severe bout of depression and anxiety: I'd tried to kill myself with a paracetamol overdose, and it was felt I needed the high paroxetine dose to be safe. Looking back I wonder if suicidal thoughts were exacerbated by being on the bloody drug in the first place. The UK government website and the patient information leaflet do warn of this.

In 2023, I decided I wanted to reduce the dose again. With the advice and support of the mental health nurse at the GP, I got down from 40mg to 10mg over the course of two months. The patient information leaflet for paroxetine suggests reducing by 10mg a week. This would have been impossible for me, and according to my nurse was not good advice. The worst symptoms I endured were tinnitus, dizziness, sweating, nausea and headache. I had really loud buzzing and ringing in my ears, and dizziness so severe that the slightest movement of my head sent me spinning and made me want to puke. I did this tapering while writing my book as writing gave me the ideal distraction from these symptoms. The mental health nurse said that the last 10mg would be the worst to deal with, so I decided to leave it there.

The decision to get off it once and for all was made about three months ago. Wisely or not, I told no-one at first. I had got to know this drug pretty well, and understood that I needed to do it very slowly. After a few weeks, I told my husband what I was doing. He said he had noticed a change in my mood and was obviously worried. As the NICE guidelines on withdrawal say, it can be difficult to distinguish between the re‑emergence of underlying conditions and the emergence of withdrawal symptoms, especially if, as in my case, there is a history of depression, anxiety and suicidal thoughts. Horowitz and Taylor studied the difference between relapse and withdrawal symptoms, showing that withdrawal symptoms have a a typical ‘wave’ pattern of onset, peak and resolution. I said I would be sensible but that I was going to carry on. That would have been in the onset period. There used to be a liquid form of paroxetine on prescription to help with tapering, but this is no longer available so I had to rely on a combination of cutting up the tiny 10mg tablets and using a chart to gradually reduce and space out the doses.

Today is Monday 13th May, and I've sat down to finish this article, ready for Mental Health Awareness Week. It's just over a week since my last minuscule dose. I can't say it's been easy. I had a definite period of peak symptoms. The tinnitus became deafening and took on various forms, including a high pitch whistle, a low pitch drone and several notes in-between, like a constant badly played piece of bagpipe music. The dizziness and electric shock feelings became very odd indeed, and the aching, sweating and pins and needles were also pronounced. But these were all physical symptoms that I could handle through relaxation and pacing myself. Much worse were my mental health symptoms: my anxiety went through the roof, I became extremely agitated and emotional, and I had suicidal thoughts every night for several days. I also had severe feelings of dissociation or depersonalisation, feelings that I wasn't real. Funnily enough, I used to have this when my urticaria was at its worse, and it's only researching today that I've found it's a possible side effect of paroxetine discontinuation. The only list I can see it on is the one from way back in 1998. "It's just the pill wearing off" I tried to tell myself. But I really struggled. I told no-one about these symptoms and I still haven't until this moment when I am sitting here writing it. I didn't want to burden my husband, kids or friends with it, and I didn't want them to try and talk me out of it, so I just got on with it. I DO NOT recommend this approach, but it's what I chose to do at the time.

The UK government advises that awareness of the risk of withdrawal reactions needs to be increased among both prescribers and patients. I feel really strongly that the government, the drug companies and the NHS could do a lot more to alert patients and prescribers to the awful withdrawal effects of paroxetine (and others), INCLUDING suicidal ideation, depersonalisation, and depression. As Horowitz and Taylor conclude, between a third and a half of patients will experience withdrawal symptoms, up to half of these reactions will be severe, and for some individuals withdrawal symptoms may last months or years. This needs to be known about.

As for me, I am going to be ok. I am over the worst of it now. The physical and mental symptoms have died down, and only the tinnitus is still quite bad. I accept that I may need anti-depressants again. After living with them for over 40 years on and off, they are part of my life. But not paroxetine. Not that. Never again.

You can read more about my mental health journey in my book Bent Is Not Broken. Buy the eBook (various platforms) or get the paperback on Amazon via:

www.books2read.com/BentIsNotBroken

***Queer Indie Awards 2023 Winner:

Best Non-Fiction***

***Readers Favorite Five Star Award***

To read more blogs and to find out more about the author, head to www.bentisnotbroken.com 

References

Haddad PM, Anderson IM. Recognising and managing antidepressant discontinuation symptoms. Advances in Psychiatric Treatment. 2007;13(6):447-457. doi:10.1192/apt.bp.105.001966

Selective serotonin reuptake inhibitors (SSRIs) and serotonin and noradrenaline reuptake inhibitors (SNRIs): use and safety - GOV.UK (www.gov.uk)

Gastaldon C, Schoretsanitis G, Arzenton E, Raschi E, Papola D, Ostuzzi G, Moretti U, Seifritz E, Kane JM, Trifirò G, Barbui C. Withdrawal Syndrome Following Discontinuation of 28 Antidepressants: Pharmacovigilance Analysis of 31,688 Reports from the WHO Spontaneous Reporting Database. Drug Saf. 2022 Dec;45(12):1539-1549. doi: 10.1007/s40264-022-01246-4. Epub 2022 Nov 18. PMID: 36400895; PMCID: PMC9676852.

Quality statement 4: Stopping antidepressants | Depression in adults | Quality standards | NICE

Horowitz MA, Taylor D. Distinguishing relapse from antidepressant withdrawal: clinical practice and antidepressant discontinuation studies. BJPsych Advances. 2022;28(5):297-311. doi:10.1192/bja.2021.62

James Davies, John Read, A systematic review into the incidence, severity and duration of antidepressant withdrawal effects: Are guidelines evidence-based?,

Addictive Behaviors,Volume 97,2019,Pages 111-121,ISSN 0306-4603,

https://doi.org/10.1016/j.addbeh.2018.08.027.

(https://www.sciencedirect.com/science/article/pii/S0306460318308347)