How do you know when to come off anti-depressants?

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Medication can play a vital role in managing mental health issues. I’ve been on an anti-depressant called Dosulepin since December 2009 and at the end of last year, felt stable enough to try to come off it.

However, my GP told me that Dosulepin is one of the hardest anti-depressants to come off. It’s an older, tricyclic version and there aren’t many people still on it. Which begs the question, ‘Why was I put on it in the first place?’ I don’t suppose I’ll ever know; I was at a different practice in 2009 and was in no fit state to question the doctor at the time.

At Christmas I was taking 150mg a day and my GP advised a very slow and gradual reduction by 25mg to start with. Imagine my surprise when I felt like a complete mental raving lunatic within a week. It was so unbearable that I immediately went back up to 150mg.

A few months passed and I decided to have another go at reducing the dose. I dropped by 25mg again and the exact same thing happened. I decided to try and withstand the withdrawal effects and mustered up all my strength and determination. I had two weeks of intense mood swings, feeling unsettled and bad nightmares, but sweated it out as I can be very stubborn and didn’t want to be beaten by a tablet. It was hard to separate the feelings from my sense of ‘myself’ but tried to see it as a purely biochemical response; a change in brain chemistry that was bound to make me unsettled. It didn’t mean I had lost control or slipped back into depression. Things stabilised at the end of the second week and it seemed like my body had become used to the change so I dropped my dose by another 25mg. This immediately made me feel I had been thrown into turmoil again and I noticed that my anxiety, which had never been far away, had now reared its head again with a vengeance.

It’s been two months since the last reduction and although my GP is keen for me to keep dropping the dose, I now don’t feel confident enough to attempt this.
I realised there were a lot of psychological issues coming up that I was confused about. For one, I can’t remember what I was really like before the anti-depressants. I don’t know what I will be getting back to and I don’t know what my ‘normal’ was. I’m not sure if I’m permanently changed now from life experiences and simply being older and I don’t know how I will know when I am ok enough not to need the tablets.

I do remember that I always felt things intensely, always felt anxious  and always struggled with low moods, even without the bereavement that pushed me over the edge and onto anti-depressants.

During the last two months of being on 100mg, I’ve definitely felt different and not in a good way. I’ve settled into feeling generally low and noticing that I’m struggling a lot with my Neutropenia and M.E. My health problems have always been difficult to cope with, but I have a new sense that I’m at the end of my tether with them and can’t take it any more. They are lifelong conditions though, so I need to find a way around this! But do I need to have come off the tablets completely and had a ‘settling in’ to the new brain chemistry period to really know how I am going to deal with things?

The way I’m feeling right now is that I’m having to constantly draw on everything I’ve learned from counselling and CBT in the last five years to keep a grip on my mood. My anxiety can be all-consuming and whether it’s a biochemical withdrawal reaction or not, it is difficult to cope with. It’s knocking my confidence and it’s demoralising that this is how I am without a third of my tablets. After two months, I’m obviously through the turbulent upheaval of the last reduction and this is what I’ve been left with. I’m thinking maybe I’m just one of those people who needs medication and I should not try to reduce the dose further. I don’t have a problem with that, but Dosulepin has some pretty nasty side-effects if you take it long term and if I’m going to be on tablets, I don’t think these are the best choice.

I’m intrigued to know what’s on the other side though and to see if I could cope without them. I’ll never know if I don’t try. I don’t want lack of confidence to stop me trying, but I also don’t want to take risks with my mental health, as its taken most of the last five years to rebuild it.

Ultimately, I want to feel as ok as possible and as though I am coping and I don’t mind taking tablets to achieve this. I don’t want to come of the tablets for the sake of it, or stay on them for the sake of it, but this period is a useful experiment in seeing where the boundaries are between the tablets and my own mind. I’m surprised it’s so hard to reduce the dose and also surprised that a lot of my old ways of feeling have resurfaced so for now, I’ll tread carefully and think long and hard about whether to drop the dose any further.

Has anyone else experienced similar difficulties? How do you know whether you should come of anti-depressants or not?

 

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8 responses »

  1. I think part of the problem is that nobody can really know for sure if they can manage coming off antidepressants unless they’ve tried it.

    I spent a year and a half on Wellbutrin when I was a senior in high school but my psychiatrist thought it would be ok to phase it out before I left for college. He felt my depression (and subsequent suicide attempt) had been a result of a bad situation and was a singular occurrence. At the time I didn’t have the knowledge to realize I had been experiencing depression for years before that… and while everything was ok for about six months after I was medication free I quickly slid into another psychiatric hospitalization.

    For eight years I relied on the tools you describe to manage my symptoms (mine turned out to be bipolar disorder). It wasn’t until I felt completely exhausted from constantly having to keep myself in check that I approached the medication route again.

    One thing I did was keep a journal of the periods that were the worst, and when I feel like convincing myself I felt totally fine, I can go back and read the truth.

    I think it is totally valid to want to find out what being unmedicated feels like, and I also think it is smart to explore other medications if the one you’ve been taking could be dangerous in the long run.

    The two things that have really helped me make comparisons in the state of my mental health are journaling (as I mentioned) while I’m at my worst and mood tracking each day to track my symptoms. Not only has this helped me recognize that I DO have a lifelong disorder, but it has helped me wade through the process of trying new medications (and having something to compare the results to).

    Good luck!

    • Hi Sarah, thank you so much for your comments and advice. I’m sorry to hear you have struggled with bipolar disorder and medication issues. That’s a really good idea to keep track of my moods with journaling and mood tracking. I used to do this on a website called Moodscope, don’t know if you have heard of it. I was able get to a plateau where I didn’t need to do it any more, but I think it would be useful right now to see where I’m up to with the process of coming off medication.

      As you say, I won’t know how things are until I come off them completely but I agree it’s a smart thing to monitor yourself closely.

      Like you, I feel my disorders are lifelong and it’s about the best ways of managing them. I don’t have a problem with being on meds if that’s what I need to do.

      Good luck to you too and thanks again for stopping by to read and comment!

  2. Hi Laura, sorry to hear you’re struggling to reduce your meds. I know what it’s like as i’ve been withdrawing from dosulepin for the past year, due to NICE concerns about the drug. I’ve been taking it for the last 20 years with no ill effects (i’m 41) but have had to reduce from 150mg to 25mg in order to start taking a different antidepressant. I had problems not being able to sleep at first but thankfully that’s improved now. I’ve also found that if I take less than 75mg my mood is generally pretty low & it is a real struggle to motivate myself or socialise so at times it feels like i’m slipping back into the depths of severe depression which is scary. Currently I’m trying to find a suitable alternative to dosulepin but haven’t been able to tolerate the side effects of the other anti depressants I’ve tried. So far I’ve tried citalopram, lofepramine, mirtazapine & trazodone. The only one that I could bear to try again was trazodone as the others made my anxiety & insomnia worse, so that’s the one I’m trying to wean myself onto now. It’s much more sedative than dosulepin but I’m told I should get used to this if I increase the dose gradually. I’m not sure if any of this info will help you as i appreciate you’re trying to come off dosulepin without going onto another antidepressant necessarily, but I guess it can be useful to know about alternatives in case you need them in the future.
    It sounds like you’re doing all the right things to come off your meds successfully. I think you have to give yourself time to get used to each gradual dose reduction & if you feel you can’t manage the depression / anxiety with such a reduced dose & CBT in the long term, it might be worth looking into taking another antidepressant.
    I’m also finding it useful to test out how I am on a lower dose as I’ve noticed my depression has changed over the years & or maybe depression affects me differently now i’m older? When I tried to come off dosulepin in my 20s I felt panicky & had to go straight back on it, whereas this time I surprisingly don’t feel panicky, I just feel generally low in mood & lacking in motivation & energy which doesn’t seem to shift regardless of what CBT techniques I use, food I eat or exercise I do. I therefore feel like I still need meds, even though I wish I didn’t.
    I wish you all the best with stepping down your meds. Feel free to email if you need to ask me anything. I don’t know anyone apart from myself who’s ever taken dosulepin, so it’s helped me reading about your experience 🙂

    • Hi Jill, I’m glad to hear that my post has helped you 🙂 Thank you for commenting as I also don’t know anyone else on Dosulepin so I wasn’t sure whether my withdrawal effects were ‘normal’.

      I’m totally prepared to take another anti-depressant if that’s what I need to do, so it was really useful to hear about your experiences with other brands. Before I started Dosulepin I tried Prozac and Amitryptiline and they both severely disagreed with me. But since then I believe developments in anti-depressants have come on in leaps and bounds so I’m fine about trying a more up-to-date one.

      It’s interesting that you say your depression may have changed over the years as I feel this too. I think it’s easier as I’ve got older to ‘talk myself round’ from minor dips, probably as I’ve had that much therapy but I think my anxiety has got worse over the years. I don’t really understand why my brain won’t stay ‘programmed’ though and why it is always hard work to stay on top of my moods.

      I also wish I didn’t need meds but I think it’s ok to take them. For me it’s the same as taking meds for any other health problem, it’s not a weakness.

      Good luck and thank you for your well wishes, please feel free to get in touch again if you want to chat more! 🙂

  3. this is actually common and possible with all psych meds not just that old tricyclic…it’s possible to come off by tapering in micro-doses…you can take months or years to do it if need be…otherwise you run the risk of harming your nervous system and that can take years to heal in worst case scenarios.

    see: Psychiatric drug withdrawal and protracted withdrawal syndrome round-up http://wp.me/p5nnb-8iQ

    that page is a collection of links on the largely denied phenomena of psych drug withdrawal syndromes with resources for help and support.

    best of luck to you.

    • Hi Monica, thank you so much for your advice and for the information you included which I will certainly be checking out! It is good to know there is support out there for people withdrawing from meds.

      I am definitely taking the slowly but surely approach to reducing my meds and monitoring myself closely every step of the way. I do feel that since I wrote this blog post I have settled somewhat, but that could also be because I am back at work after my holidays and back in a routine, which I have always found stabilising. I wish I knew whether it was getting used to the latest reduction or being back at work though! It’s so hard trying to fathom it all out.

      Interesting that you say this happens with all psych meds, not just the ones I’m on. Wish the doctors would have told me this when I was put on it!

      Thanks for your well wishes, I really appreciate you reading and commenting on my blog 🙂

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