I have never had a problem with medications in general, and in my work as a nurse, I’ve seen how much good they can do. Despite that, I’ve gone off the meds I take for depression a few times, and that’s what this post is about.
My first episode of depression was in 2007. I ended up hospitalized following a suicide attempt, and I spent 2 months in hospital. I continued taking my meds for a few months and I then had another suicide attempt, this time by overdosing on my psych meds. Since I didn’t do any significant damage, I chose not to tell anybody at the time. I decided to hell with it, if I was on meds and still feeling shitty, what was the point of continuing meds? Since I didn’t want my treatment team to know I wasn’t taking meds, I continued picking them up regularly from the pharmacy. I ended up getting into full remission without meds, and I remained well for almost 4 years.
My plan all along was that if I started to have signs of getting worse, I would restart meds. When the depression started to hit me in 2011, I quickly recognized the red flags of poor sleep and low mood, so I made an appointment to see my GP. I had to practically beg for meds. He begrudgingly gave me 10mg of citalopram, although his preference was that I attend group therapy. Two weeks later I ended up in hospital.
Weight gain
It took a year and a half to get fully well again, and I ended up on multiple weight gain-inducing meds (lithium, quetiapine, and mirtazapine). The weight gain was hard to adjust to, although I recognized it was probably a fair price to pay for being well.
After 2 years in full remission, I decided I wanted to try going off the quetiapine, and my psychiatrist was agreeable. We tapered down the dose gradually, and at first, it seemed like I was going ok, until suddenly it wasn’t. I got really slowed down with psychomotor retardation, and ended up having to go back on the quetiapine as well as up my dose of lithium. Clearly, I needed my full med cocktail.
Going without a prescriber
It wasn’t too long afterwards that I experienced some traumatic events and became quite depressed again. My psychiatrist’s reaction was tremendously invalidating, so I stopped seeing him. I’d recently begun seeing a new GP, and when I told her why I wasn’t seeing the psychiatrist anymore, she came out with the same invalidating comments he did. There was no way I was going to see her again, so she booked me to see another GP at the same clinic. That one ended up being even worse.
I couldn’t bear the thought of going to see another doctor, so I decided to do a gradual taper with the meds I had on hand and then stop. It wasn’t that I wanted to stop taking meds, I just wasn’t willing to see another doctor. Not surprisingly, that strategy didn’t work out very well for me. I was barely sleeping despite taking everything over-the-counter I could think of.
It was when I decided that I needed to go back on meds that I found my current GP, who’s very reasonable and pragmatic. Even so, there have been a couple of times that I’ve thought screw it, there’s no point going in to get my meds reordered because I just feel like crap anyway.
My logical mind is very adamant that I need meds. Unfortunately, sometimes depression sneaks in and twists things around. For me, I don’t think that will ever go away, no matter how pro-meds I am most of the time.
Do you have experience going off meds in the past? What was that like?
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Ashley L. Peterson
BScPharm BSN MPN
Ashley is a former mental health nurse and pharmacist and the author of four books.
I have an appt. with my psych today. I actually planned to ask her about tapering off Latuda and just keeping the SSRI. I just feel meh all the time and I want to see if it is the Latuda causing it. Plus, the Latuda makes sleep harder because it makes me so sick. I just don’t eat much so I can’t handle a med that requires me to eat a significant amount to tolerate. I’m pretty terrified of what might happen if I do taper off though, because what if it is part of why I’ve been at a stable meh lately instead of a consistent “why am I even living.” Decisions about meds are so complicated.
Yes they really are.
I went off my anti-depressants a few years back. It was a gradual process and I think I was OK for a while. I think it was less than a year before I had a meltdown and wound up driving aimlessly after a row with my mother and wound up back at my GP. He reassured me that there was no shame in going back on them. I’m hoping to come off them next year and I hope it can stick. Thank you for sharing your story, you’re not alone xxx
That’s always the fear with going off – there’s just no way to know if it will stick or not.
I have tried a number of times to go off antidepressants and it NEVER goes well 🙁 My psychiatrist wants to up my Seroquel, but I am afraid of weight gain. How much weight did the meds make you gain? Have you been able to lose any of it?
I’ve gained about 40 pounds, and hard to say how much is the Seroquel, since the lithium and mirtazapine are probably contributing too. I was able to lose about 20 pounds last year being real careful with my eating, but couldn’t stick with it and the weight came right back on.
🙁 That sucks. I haven’t gained any weight on 50mg of Seroquel, but I worry if they raise it I will.
Yeah really tough stuff
Pets are less stressful than humans. Italy for the history and the food.
Guinea pigs have pretty simple needs, so they seldom annoy me.
Yep, when my ex psychiatrist diagnosed me, wrong, with major depression. The meds they gived me maked me manic, I started to had allucinations and delusions. In a rage breakdown I quit all my meds at once, the day after I was so sick that I couldn’t walk. It was the only time, with bipolar mixed i can’t interrupt meds.
Oh wow, what an awful experience
It was, find the good psychiatrist is so important and difficult
Yes for sure
I only go to my GP for medications, and she has got me on Cymbalta and then Buspar for my anxiety. I often think that I may even need to finally see a psych to possibly find something stronger. I inadvertantly have managed to run out of my meds several times, as I just don’t take the time to get by the pharmacy. Within 3 days I am always a total basket case and rush to pick up the meds. I don’t want to be on meds for the rest of my life, but I always see very quickly how I do need them….
Yes going without for a few days can definitely be strong reminder of that.
I don’t think my meds do much, and they are causing a lot of weight gain (I’m going to need a whole new wardrobe soon, and being overweight is depressing in itself), but if I try to come off (under supervision), I just get worse, so they must be doing something, even if it’s just turning really unbearable depression into somewhat unbearable depression. I’m supposed to be seeing a new psychiatrist soon (if the NHS ever gets its act together) and would like to talk about medication options, and alternative/additional diagnoses, but am worried I will not be listened to.
It’s frustrating when meds are clearly helping somewhat, but they’re not actually leading to being well.
I’ve gone off meds before and eventually go back on. My PCP says that since my depression/anxiety is chronic that I’ll likely need medication long term. I’m ok with that. Great post. Glad you found a good doctor.
Thanks. That coming to terms with long-term medication can be such an important part of the illness journey.
Thanks for sharing :). I think it’s really important to talk about these things, so we can normalize it a bit. It’s exactly like you say- people can generally be fine with “medication”, but somehow “anti-depressants” are different, and our feelings about them can get really confused.
(And also like you say, depression and anxiety themselves interfere with our feelings and our ability to make decisions about anti-depressants!)
I’ve always had a super hard time coming off and on them, and I’m glad that there’s more awareness about it now. The more support we have to cope with the process and the side-effects, the better!
I agree!
Why don’t you get your acetyl l carnithine levels checked? Studies have shown that this this is decreased in depression along with zinz and Vitamin D. Acetyl l carnithine takes our fatty acids to our mitochondria for converting it into energy that might explain the lack of energy that depression is associated with.
You might want to decrease you acetylcholine too as its also linked to depression.
I hope you get better <3 More power to an already strong person <3
Thanks!
Some neuroscientists also claim that probiotics also works in depression as the bacteria in our gut also have an impact in our brain
Yes, I take a probiotic.
It’s difficult to know whether the meds are making us better or if we’re actually better and the best way to test that is to stop the meds. But clearly that’s not a great plan if that’s the reason we feel well.
All I know is that I’ve been advised to stay on my combination (venlafaxine and mirtazapine) for at least three years but I still don’t feel great and I’m reluctant to increase the dose of either.
Yeah it’s so hard to know what’s going to be the best thing to do.
Amazing blog!
Thanks!
I’ve been on 5-6 types of anti depressants and I came off them myself because I felt I was getting more side effects than my actual depression and anxiety was giving me and they made my suicidal tendencies worse, my sleep worse and most of all my dissociation worse. I felt completely numb and devoid of reality.
I still get the dissociation from time to time but I am aware of what my body is telling me now and able to track my depression and my episodes.
That’s great that you’ve figured out what works (and doesn’t work) for you.