No one told me how hard it would be to come off anti-depressants

Open thread

When I came off anti-depressants, the withdrawal was horrendous.

Daily panic attacks, vertigo, brain zaps and intense anxiety overwhelmed my nervous system for the first three months. I fell over sometimes, once holding a hot cup of coffee, which ended up all over the floor rug. I cried every day.

Up until six months, I was racey and still cried easily. My brain felt like it was sort of shaking into place, making strange crunching noises (like sand granules moving around in my head) and zapping occasionally.

I shared my experience on X this week in response to a Substack article by Australian medical journalist Maryanne Demasi, asking, ‘Is it time to make antidepressants available over the counter?’

Well-known American psychiatrist Roy Perlis made the case that anti-depressants should be easily accessible without a prescription, in an article in STAT this month, and Demasi’s article was a response arguing against the proposition.

Based on my experience, I’m with Demasi on this one. For me, coming off anti-depressants (interchanged with anti-anxiety meds) was no joke, and should not be taken lightly.

I had tried to come off them unsuccessfully several times during the seven years I was on them, but the intense waves of panic attacks always pushed me back to the little pills until the third time, when I managed to finally push through.

What was different about the third time? A few things. Mainly fate, I think. I had recently switched to a new medication, as my prescribing doctor would swap out brand and type from time to time. Over time, the benefits of whatever I took tended to plateau, so my doctor would swap me over to something else until that plateaued too. Then I’d swap again.

This time, she started me on something new, then went overseas on a long holiday. But I had some very negative side effects, to the point that I couldn’t manage going to work. I called the surgery but as my doctor was out of town, I was handed to a different doctor who didn’t know my medical history.

This new doctor told me I could go back on the old medication or persist with the new one as the side effects would surely wane. Confused, I persisted with the new one. But after another week or so of struggling to function, I just stopped taking them. I obviously wasn’t thinking clearly because this is a big no no - you’re supposed to taper off gently, as I had tried to do a couple of times before.

But I remember thinking that the new doctor seemed to be just making it up, and I didn’t want to go back on the old medication, and I couldn’t face another day of side effects on the new one. So I just stopped taking the pills.

The rollercoaster took off at an intensity I could not have anticipated. Panic attacks, vertigo, brain zaps, anxiety.

I had panic attacks before I went on anti-depressants - that’s one of the reasons the doctor suggested medicating me in the first place. But I had never experienced multiple panic attacks a day for consecutive days and weeks before. It was absolutely, deliriously, exhausting.

If you’ve never experienced a high-intensity panic attack, think of it like this:

I’m driving from A to B, talking to a friend over bluetooth about the coming weekend. She asks me a logistical question - what time shall we meet? I flick to the tab in my brain that handles scheduling, and suddenly the entire window freezes, like when you get the spinning wheel of death on your computer and everything on the screen becomes non-responsive. It’s a simple question, and I’m furiously clicking on the tab to get a response but it won’t load. I realise now that I’m driving, and all the tabs are frozen, including the driving tab. Where am I going? Should I pull over? The breathing tab is also frozen. I realise that I haven’t taken in enough breath and suddenly I’m hyperventilating. Panic rises. What is happening? Why is it happening? Are there other cars? Have I hit something or someone? My friend is waiting for me to respond. ‘Wait’, I tell her. ‘I think I’m having a panic attack. I have to go.’ I hang up, pull over and struggle to breathe through the tears that have started rolling down my cheeks, and I just sit, trembling, and wait. Eventually, my breathing regulates and I shakily restart the car and drive home, heart in my throat.

This whole episode can take anything from 20 minutes to two hours, and can happen anywhere, anytime, over inconsequential things - often small decisions, like which brand of toothpaste to buy, or in which order to do household tasks. On days where it occurred more than once, I might spend several hours in tears focusing on breathing and nothing else, and would fall into bed utterly wrecked, having achieved barely the minimum.

I coped by running, doing weight training, and crying on the phone every day to a couple of friends who had been there and understood. I used to say ‘I can’t do this, I can’t do this,’ and my dear friend who had done it a year or so before me kept saying ‘I did, so you can, and you will.’ It’s hard to explain, but the feeling is that you’re going to die before you make it - if you could die of a feeling.

Also, I suppose my unwillingness to go back on the old medication or to be handballed around between doctors who didn’t know my history and were just guessing meant that there was nothing to do but sweat it out. Having your back against the wall can kind of help in these situations.

I was fortunate to have my own small business at the time, which meant that although there were a couple of days every week where I had to show up and talk to people and do my best not to have a breakdown, I had other days working from home where I could cry and be messy.

Lastly, and perhaps most importantly, I had scaffolding in place that I had not had seven years prior to support myself through the ordeal.

I was in a very bad place when I went to the doctor who initially prescribed the drugs to me. I remember him being a kind man. He recommended that I go to a therapist, who introduced me to Cognitive Behavioural Therapy (CBT), which is a wonderful tool kit for life.

He also suggested that I may have an intolerance to gluten. It turns out that I do, and changing my diet accordingly has made a marked difference to my health and wellbeing.

During this time I worked at my recovery from a gruelling eating disorder, which I have previously shared about, developing my spiritual life and emotional resilience.

All these things together made coming off anti-depressants doable.

I felt like the anti-depressants helped me at first, or maybe it was the placebo effect. I was not functioning, and after I went on them I was better able to function. After about four years I felt like I was managing ok and that’s when I made my first attempt to come off them… a process which ultimately took three years.

I’m doing fine now. I balance a depressive and anxious disposition with sunshine, fresh air, movement, earthing, a clean diet, minimal toxins, little-to-no alcohol, meditation and spiritual development, and allowing enough space to go gently.

Apparently, my experience is not uncommon. But neither of the two doctors who prescribed me these drugs warned me about how difficult they can be to withdraw from.

I wasn’t properly informed about potential side effects either. I experienced weight gain, emotional numbness and night sweats. When I complained to my GP (a different doctor to the gentleman who first prescribed for me) about the night sweats, she never mentioned that this be a symptom of anti-depressants, and I only discovered this fact later. My GP instead prescribed me more pills to treat the side effect of the other pills I was on.

When I shared my experience on X this week, I learned of some other troubling aspects of anti-depressants that I hadn’t heard about before, including post-SSRI sexual dysfunction, which sounds devastating. One person described psychotic episodes on the drugs, and hectic nosebleeds during withdrawal. Several people had been struggling to come off them, describing the ‘rollercoaster’ during the tapering period.

I would hope that when doctors offer anti-depressants as a treatment option for patients, the discussion would include a full briefing on known side effects and the potential difficulty of coming off the drugs. I would also hope that depression and anxiety would be approached holistically - that where drugs are offered, there is also due consideration given to diet, exercise, sleep, other lifestyle factors, and therapy. And where patients choose to start on anti-depressants, there needs to be a plan and support for offramping safely.

So when Maryanne Demasi asked, ‘Is it time to make antidepressants available over the counter?’, my first thought was, no way.

OPEN THREAD: What do you think? Is it time to make anti-depressants available over the counter?

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