"The hardest weeks of my life." 13 women on what really happens when you go off antidepressants.

“It’s been the hardest four weeks of my life,” a young woman named Sophia* told Mamamia. 

“I’ve had moments when my brain feels so foggy I’ve stopped talking mid-sentence because I can’t actually focus on what I’m saying. My body has ached and I had nausea…”

When I asked women to share their experiences of going off antidepressant medication (an umbrella term that also encompasses anti-anxiety medication) I was struck by two things.

First, the sheer volume of responses. Women were desperate to share what had happened to them.

Second, how alike their stories actually were.

WATCH: How to talk to people with anxiety. Post continues. 

I was reminded of my own experience, three years ago, deciding to taper off my relatively low dose of Lexapro, an anti-anxiety medication.

Within a few days, it was as though there was an electric current running through my body, zapping my brain persistently.

I was nauseous – feeling like I was in a constant state of motion sickness. My muscles were sore and I couldn’t sleep. It felt like my life had suddenly descended into a never-ending panic attack, and my thoughts were no longer my own.

It was – as Sophia put it – one of the worst experiences of my life.

Years earlier, my anxiety had been crippling. Bad enough for me to go on medication in the first place. But this was like anxiety on steroids – as though I was mid-air, falling down a set of stairs, a second or two from hitting the bottom.

Unable to take an extended period off work, I realised I was trapped. I didn’t want to be on the medication, but I couldn’t go off it. What I thought had been a temporary measure to address my mental health, now felt like a life sentence.

Three years later, I’m in the same position.

The possibility of side effects had never been broached by my doctor, let alone the possibility of debilitating withdrawals.

I spoke to 13 women about what happened when they stopped taking antidepressants. Here’s what they said.

Pip

It was awful. I was faint and shaky and my whole body felt completely foreign. I got what I called ‘brain shivers’ and vertigo – it was eight years ago and I vividly remember how it felt.

Millie

I was originally prescribed 10mg of Lexapro and ended up increasing my dose to 20mg per day.

Over approximately a period of 12 months on Lexapro, I experienced severe weight gain. I went from a size six to a size 12 (which I know is a perfectly healthy size), but it did make me feel depressed about my appearance and anxious that my weight would only continue to increase unless I got off the medication. Did the medication help me cope? Yes. Did the medication prevent the feelings of sadness? Yes. Did the medication stop the rush of anxiety? Yes. But while on antidepressants I also felt like I had no emotions, it killed all my creativity and things just weren’t even as funny as they use to be (And I’m a type of person who laughs at everything!). So ultimately these were the two main reasons why I decided to get off the medication.

I weened off Lexapro much slower than medically advised due to anxious thoughts of the horrible side effects I’d read online. I found it five times harder getting off than getting on the antidepressants.

I experienced:
– dizziness
– restless leg syndrome (RLS)
– jitters of my whole body
– parts of my face even twitched now and then
– constant brain zaps (feelings of what I can only describe as brain glitches)
– rushes of random anxiety
– extreme fatigue and sleepiness
– lack of concentration and the inability to focus on conversations

Was it f*cked? Yes. But was it worth it? YES. I couldn’t have made it through that really tragic period of my life without antidepressants. I tend to say: Don’t give up, charge through to week four to six. It does and can get better.

Sarah

I was on antidepressants and I reduced gradually with the guidance of my GP. The worst symptom I had in withdrawal are brain snaps – I’d be in the middle of something and I’d completely forget how to do it or what I was doing. It would be really simple tasks I’d do every day like access an electronic file, I’d go completely blank. It was like the information never existed. It was pretty scary but eventually these symptoms faded away. Headaches, brain fog and extreme tiredness were the other most notable withdrawal symptoms.

Jennifer

I was suffering from anxiety and on the lowest dose of sertraline (also known as Zoloft).

I wouldn’t say there was a sudden withdrawal. It was more a cascading effect within six months of coming off the medication. I’d say for about four months after, I was neutral and felt similar/didn’t notice a difference. But maybe at the five or six month mark, I noticed my initial anxiety symptoms returned, and within eight months, they were back to square one.

I think coming off the medication when I wasn’t quite ready has made me realise what steps I need to take next time.

Lauren

The withdrawals were crap. I gained a bit of weight, got shaky and just generally felt weird. Biggest piece of advice I could give would be to stay on the medication and only come off under medical guidance where they usually reduce the dose slowly to help with withdrawals. I didn’t do this and regret it now.

Sammy

I was on anti-anxiety medication for about two years and I slowly went off as I was going to start trying for my first baby. Because my dad had been on medication for years, I was a bit more aware about how to slowly go off it.

I didn’t have any reactions but I did gain some weight afterwards, more from going back to stress eating though.

Frances

I was on 200mgs of sertraline, and decided I no longer wanted to be on them. I went about it the right way, in terms of seeking advice from a doctor and following their plan, but they did not prepare me for the symptoms. Once they had me down to 50mg, that’s when it really started to kick in.

I remember standing at work when I started feeling extreme nausea, dizziness and sweating. I immediately recognised the symptoms from when I went on the antidepressants – it was literally all reversing. I had extreme headaches, my anxiety came back increasingly, I spent a week in bed unable to function, it literally felt like the flu.

My doctor hadn’t prepared me for the symptoms at all and the combination of my mental health with the symptoms was almost unbearable. I ended up going back to 100mg and have stayed there because coming off them is just so terrifying. I think if I had been prepared for how bad it was going to be then I would no longer be on them, but my first experience was so horrific that I have put it off.

Cat

Over the past six years, I have been on and off six antidepressants in total. I have tried both SSRI and SNRIs. I’m currently on a low dose SSRI, fluoxetine or as it’s commonly known, Prozac.

Each and every time I’ve changed antidepressants, the withdrawal effect was pretty similar. No appetite, shakes, more trouble sleeping, sweats, my tolerance for anyone and everyone was lower, crying a lot more, very busy brain, dizziness, etc.

I think it’s really hard to go on and off antidepressants, and often I personally felt like the doctors had no real idea what they were doing. ‘Let’s try this new one. I think we should try the combination of these two. Let’s change for an SSRI to an SNRI. Let’s try none for a little while,’ they’d say. It wasn’t until I did a DNA test I finally found the one that suited me.

Katelyn

I had dizziness and felt so sick. But then a week or two later I went downhill. I went to the doctor and had to go back on my medication – my anxiety has become worse than ever.

For the past two years I’ve had to start taking two tablets a day for the medication to feel normal again.

I have no idea if I will ever come off it – I need routine and we have recently moved for my husband’s work and I haven’t found a new job. I feel my anxiety is turning into depression as well.

Ashleigh

It’s so much harder than I thought. I ended up staying on antidepressants for over five years for situational depression because each time I tried to wean off, I had the worst withdrawals. I was foggy and felt like I was watching my life happen around me, not to me. I was emotionally volatile and would burst into tears at inappropriate times.

I had a lot of trouble finding a GP that would help me gradually wean – and in the end I successfully did it myself this year.

Natalie

Withdrawing from Zoloft I had bad brain zaps and nausea. I was on and off for around 10 years but truly believe it’s stuffed my memory up for good.

Tiff

I was on an antidepressant for over a year, even though it didn’t work at all, but every time I didn’t take it for a few days, I’d be so sick.

I’d throw up, feel nauseous and get hot flushes. This went on for a year because I was too sick to go off them.

When I was going on a three month trip overseas I even made the doctor give me double so I could have back ups in all bags in fear they’d get stolen or something and I’d run out and get sick.

Eventually I went to a doctor and she gave me other ones to take. I was on them for a month or so then quit them cold turkey and I was fine.

Karen

I went off Effexor cold turkey without telling anyone. It was the hardest week of my life. I felt like I was in a tunnel or underwater or something. I felt completely cut off from the world, like I was three steps behind. The brain zaps were the worst. It felt like my brain was attacking itself. I listened to music through headphones to try not to hear them. And I found I just had to go for really long walks to feel anywhere near normal.

So, how do you go off antidepressants?

A common thread that ran through most accounts was that women didn’t feel warned by their doctor.

When their medication was prescribed, most women told Mamamia there was no discussion of withdrawals, or how difficult it might be one day to stop taking them.

According to research by Harvard Medical School, there is such thing as ‘antidepressant or SRI discontinuation syndrome’ which comes with a host of symptoms such as dizziness, sweating, abnormal sensations, gut issues, unwanted feelings, tremors, ‘sea legs’ (problems with balance), excessive sweating, flu symptoms and insomnia.

Dr Brad McKay, an Australian family doctor and science communication, told Mamamia that the most “odd sensation” is often described as “brain zaps… which feels like you’re getting tiny electric shocks in your head. Brain zaps can last a day or continue for weeks.”

But there are ways to minimise or avoid these symptoms altogether, and Dr McKay says the first step is consult your doctor before changing or ceasing medication.

If you’re unhappy with their advice, or don’t feel listened to, then wait until you find a GP, psychologist or even psychiatrist who you trust.

Harvard Medical School also recommend making a plan with your clinician. Keeping things like a ‘mood calendar’ can be a good way to track your progress. It’s also important if you’ve had a history of anxiety or depression, to keep seeing a psychologist, especially as you taper off medication.

“It’s best to cut down the dose slowly. I normally recommend decreasing the dose at the start of a weekend, so if you’re feeling gross, you can take it easy for a couple of days as your body adjusts, rather than push yourself to go to work,” Dr McKay says.

They also suggest staying active, and letting those close to you know what you’re going through, in case you’re unwell or more irritable than usual.

While going off your medication might seem desirable, it’s also important to recognise that for some of us it’s not going to be an option.

Medication for mental health can be a lifeline, and as essential to our bodies as insulin is to a diabetic.

It’s a personal choice, and the more information we have, the more empowered we are to make the best decision for ourselves. 

If you think you may be experiencing depression or another mental health problem, please contact your general practitioner or in Australia, contact Lifeline 13 11 14 for support or beyondblue 1300 22 4636.