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Is anyone else trying to come off long term ADs right now? Support thread

(40 Posts)
apatchylass Sat 25-May-13 22:35:07

Hi

I've decided to give it a go. Been on SSRIs for years and years. And though they have really stabilised my mood brilliantly, the side effects are finally outweighing the benefits. I am two stone overweight and constantly sleepy - snoozing 12-14 hours a day. Can't bear this any longer.

so I'm going to try this programme to very gradually wean off the ADs.

If anyone else is also trying right now, would you be interested in giving it a go?

I'm pretty nervous as have been depressed all my adult life and the only respite I've ever had has been while on citalopram. But also, I've never tried another method, and this one looks well thought through.

Can't wait to be back to my normal weight and energy levels.

Biggest fears are irritability and social paranoia. I'm not exactly Mrs Bucketsoffriends to start off with, so am nervous that depression will make me even more socially inept than I am already. And I'm really scared of getting shouty at the kids again. But really hoping that the steps in the programme will prevent this from happening.

How are others doing?

monicalewinski Sun 26-May-13 14:43:33

Hi, I'm in the process of coming off citalopram at the moment, I've only been on them for just short of a year so not as long term as you. I've been on ADs once before about 11 years ago and was again only just shy of a year but it went fine then, which is why I'm not "scared" to this time.

I think the longer you are on them, the more psychologically dependent you get on them, the thought of being like you were before is so scary and the side effects of withdrawal as you wean off are frightening in as much as it feels like you are reverting to what you were like pre ADs. For me, the trick has been to not dwell too much on what might happen to your mental ability to "cope" and to wean off very, very slowly.

Have you had good support from a CPN or been able to address the reasons behind your initial depression? Again, this helps as you are not relying just on the meds to keep you on an even keel but have the understanding of "why" certain situations are triggers and you can recognise when you are getting anxious and deal nip it in the bud sort of thing.

I have had a bit of a struggle over the last few weeks coming off them, I have been shouty with the kids and been feeling increasingly manic at times with big crashes afterwards (but with reasoned thinking, I KNOW that it is not on the scale I was before). It has not been helped that I've decided to come off them whilst my husband is away for a few months and I am on my own juggling work and kids etc - my sister's bollocked me for doing it now and so has my husband, but I just feel in myself that I am ready if you see what I mean??

I think that if you feel "ready" in yourself then you probably are. Make sure you are seeing the GP / CPN regularly whilst you come off them, be aware that you are going to suffer side effects but acknowledge that they are side effects and not you being ill again, take it at your own pace and don't feel like a failure if it takes a long time to wean off.

I hope you manage ok, I'm not a social butterfly myself but have a job where I am forced to wear a sociable face (in fact most people would be shocked to know I am on meds and am not this super happy, gregarious person that they think I am!) sometimes I think it helps to force yourself outside your comfort zone in that respect, even though it is so hard to do!.

Sorry for such a long post, good luck and don't beat yourself up if/when it doesn't happen as smoothly or as quickly as you would like - lots of love xx

strawberry17 Sun 26-May-13 18:36:03

Hi, yes this something I too much about and this is my blog:

Withdrawal Blog

In my experience the longer you've been on them the longer you will need to take with tapering off them, please don't be alarmed about my experience, everyone's experience is different but you do need to take it very very slowly and carefully, I have put lots of useful links on the right hand side of my blog with info about withdrawal and how to do it, in particular the 10% taper method, which means reducing by 10% or less and holding until you feel you are well enough to make the next 10% or less cut, I can thoroughly recommend a book from Amazon called "Coming off Antidepressants" by Joseph Glenmullen although bear in mind his examples in this book do taper off very fast. The best thing you can do is get liquid Citalopram from your doctor and use this to taper off, whatever you do don't do the alternate day thing. Hope that helps smile

apatchylass Sun 26-May-13 19:53:58

Thanks Monica and Strawberry, really helpful posts with some brilliant advice. I had no idea the alternate day thing was a bad idea.

My problem is that the symptoms as you come off - the shoutiness and neurosis are what led me to start them. I hate being unreasonable with my DC, as if there was any nurture element to the cause of my depression (and I tend to think it's hereditary) it's that my dad was an untreated depressive with filthy mood swings that dominated our childhood in all sorts of very unhealthy ways. I promised myself my own DC would never have to tolerate that but know it's a potential danger.

How do we know what's just the symptoms returning and how do we know what's withdrawal?

Strawberry - I'd love to read your blog and some of your side links but the only page I can access is the original page. The links just head back to it. Any chance you can relink?

monicalewinski Sun 26-May-13 20:34:20

I don't know how you know! You just have to take it as it comes I think. Probably I would say personally that if I can go to a different room for a few minutes and cool down and retain my sense of reason, it's a side effect to coming off. The key is to do it very, very slowly and make sure you have support from GP / CPN ready to go - the fact that you've been on them so long probably makes it harder to make the leap than it is for me but I'm no expert!

My dad was the same as yours in as much as the wild mood swings from spitting rage to as if nothing had happened and I hate it that I see it in myself sometimes, but my depression was as a result of several years of cope, cope, cope then a massive curveball that stopped me coping so I don't have the same fear that you do in that respect.

My side effects have been panic, rage and insomnia and also overwhelming fatigue at times. I've also felt physically sick and quite manic at times, but for me the reason I know I'm "better" is because I don't feel overwhelmed by it and am not crushingly sad about everything - I know that I can cope and live the day.

Sorry that it's not really an answer, but I can only articulate how I am feeling. If you are truly ready to move on and it is just fear holding you back, then you will probably know in yourself - if you are not ready then don't self-pressure into rushing things.

strawberry17 Sun 26-May-13 21:57:55

I think I cover that question in one of my side links apatchylass, the page entitled "Distinguishing withdrawal from psychiatric relapse, the book I mentioned goes into all that in detail as well. Sorry about my crap link, I'll try again, if this doesn't work, google "Prozac withdrawal blog" and it should be at the top of the page:

prozacwithdrawal.blogspot.co.uk/

strawberry17 Sun 26-May-13 22:00:40

I've researched this subject a lot, doctors nearly always tell you to the alternate day thing, and for many people it just aggravates the nervous system and your brain doesn't know if it's coming or going, a slow taper is the best way to go. The drug companies' information to doctors and patients is way way too fast for most people and sets them up for failure and back onto the drugs over and over.

peachypips Sun 26-May-13 22:14:57

This is an extremely helpful thread and a great idea OP- well done!
I have had generalised anxiety disorder and major depressive disorder. At my worst I was on 200mg of Sertraline and 45mg of Mirtazapine, and a shed load of tranqs too. I started weaning off my drugs last spring 2012. I firstly dropped the Mirtazapine and have been free of that since Nov 2012. Then started gradually dropping Sertraline and it has taken me til now to get down to 25mg, so nearly a year!
Each time I have waited around six weeks between each drop as I wanted to theoretically let my serotonin levels start to normalise. Am terrified about last drop from 25mg to nothing. Argh.

monicalewinski Sun 26-May-13 22:37:07

strawberry17 I was advised to do the alternate day thing and that's when I struggled massively. I sort of did my own thing in the end and cut my pills in half etc and slowly weaned myself off my own way. It worked for me, but I think that I had more of a definate feeling that I was ready to move on prob because I was not as long term on the meds as so many are - I think I've been very lucky with the extra help I've received also.

All the links are super helpful, I scoured help threads all the way through my depression and a big help is realising you're not the only one going through it all!

peachypips - good luck with the last step, it's probably the scariest! I'm about 3 days now with nothing (trying not to think about the time length!) and feel ok, but have been very busy so have too much else to occupy my mind than "oh shit - I've missed my pills" which I think has helped me too.

strawberry17 Mon 27-May-13 09:33:05

monicalewinski and Peachypips, well done for figuring it out and listening to your own feelings on the matter, I think that's really important, I do think as well the longer you've been on the drugs the longer it will take to taper off.

Peachy can you ask your doctor if he'll prescribe the last bit of sertraline as liquid? then you can make accurate measurements with tapering.

If not, you can make your own liquid suspensions, links here with info:

Tips for tapering Citalopram

Tips for tapering Sertraline

Using a digital scale for measuring doses

Hope my links work ok, there is lots of info in the Tapering forum on that site you can use.

strawberry17 Mon 27-May-13 09:34:38

Peachypips I wouldn't go straight to nothing from 25mg, the last bit can be notoriously difficult, I would cut it down using the 10% method.

strawberry17 Mon 27-May-13 09:51:32
apatchylass Mon 27-May-13 13:50:48

This is a really brilliant thread everyone. Fantastic, solid, carefully considered advice. Thank you so much. I feel I'm learning so much from it - about tapering and making solutions if GP won' prescribe. it's really helping develop my confidence that I'm ready.

I don't have any solid advice yet, except to say that i've decided to pre-empt coming off them by doing other things first to build up a sort of reserve of positivity.

Sport
I'm doing loads of exercise (having done none due to drug induced lethargy for about five years.) Aiming for at least 1 hour daily. So far - running; walking, hot yoga; zumba; bootcamp; cycling off road.

Positive attitude training
I have started a gratitude journal (not as airy-fairy as it sounds. It's a bit like CBT - just helps you ground yourself and keep perspective on factual evidence of good things happening in your life each day - however small)

Diet
Have ordered some omega-3 and am meantime going to eat more fish and walnuts.

Not yet off the alcohol, refined carbs and sugars but that's also in the plan. I read up on diet - and those who don't produce enough seratonin are short of omega 3 and VitB-6 and 12. Other side effects are dry skin, brittle nails, lethargy - all of which I have, so the diet change could well be vital.

Strawberry - thanks so much for new link. Off to look at it now. How are you doing these days? Do you feel well?

strawberry17 Mon 27-May-13 21:12:42

apatchylass it's good to have lots of healthy strategies in place because you still have to learn how to deal with depression/anxiety, and the beauty of tapering slowly is that you learn to adjust and deal with the "real unmedicated you" emerging from underneath the drug.

I had a few years of failed cold turkey and alternate day withdrawing always ending up back on sertraline, then I discovered how to taper properly, and had five years of successful tapering down, and feeling really well, last Autumn I got to below 3mg Prozac, and suddenly everything unravelled again, I've just got through 6 months of depression/anxiety/insomnia and long story short ended up up dosing to 8mg Prozac, I'm now stabilizing on that dose and feeling well again, I think for me after so many years my brain is so used to the drug being there, plus I probably still have some underlying tendency to depression anxiety that I'd have to go into rehab for 2 years to withdraw from it, and since that isn't an option on the NHS or the real world I'll probably stay for good on that dose or something similar. Many people do succeed though, I just may not be one of them, it's about quality of life in the end.

LornaGoon Tue 28-May-13 10:56:14

I've been thinking about asking questions about AD withdrawl and here you all are!

I've actually been completely free of Sertraline for a few weeks and definitely agree about doing it by gently tapering. The 'one every other day' strategy was truly flipping horrific. I got every side-effect mentioned in Strawberry's link. I still got them with tapering but much more manageable. The rushing feeling has only just stopped.

However, I think I'm still getting side-effects of coming off them: waves of fatigue, really strange numb feeling in my mouth/ tongue, massive irritability, and my nerves feel assaulted by too much noise/ touch - not helpful with two young DC!

I'm taking a St Johns Wort and evening primrose supplements but I feel like my brain is trying to re-balance itself and is struggling.

Does anybody know anything about long-term side-effects of withdrawl?

Sincere thanks to Strawberry for the links. Really helpful.

strawberry17 Tue 28-May-13 20:00:23

LornaGoon how long were you on sertraline and how fast did you come off? it sounds like you may have still come off too fast hence the withdrawals you're feeling now. If it doesn't get any better it sometimes helps to reinstate a small amount of the drug to stabilize yourself and then when feeling better taper off that bit even slower. However it seems that if it was well over 6 months since the last tablet reinstatement is less likely to work.

Withdrawals are a bit like "how long is a piece of string" it varies and no one can really know in advance, there is a lot of collective wisdom on the site I have linked to in posts above.

LornaGoon Tue 28-May-13 20:47:06

Thanks for getting back to me Strawberry. I think I was only on Sertraline for about 8 months. I know this was certainly not what is recommended but just couldn't take the side effects of taking it any more.

In fact the whole episode, from getting child care so I could get to the GP, getting repeat prescriptions, support from DP was a fucking nightmare, let alone side effects.

Anyway, it was about 8-9 weeks ago that I stopped taking it at all. I will give some thought to reinstatement and will take a further look at the link.

findingme Wed 05-Jun-13 11:36:45

I decided a few months ago to come off Fluoxetine 20MG (Prozac). I have been on AD's for 9 years, specifically Prozac for the last 1.5 years. I did some research, and decided to ask my doctor for Liquid Prozac so I could measure out smaller doses. I have already previously tried the every other day methods and they do not work for me. I am now down to 2MG each morning but have been feeling low.

The 12 Steps link provided me with some food for thought. I am thinking that exercise would really help, and have realised that I need to stop lying in on my days off and day-napping (I have the excessive tiredness symptom and could randomly take a nap at any time in the day). Strawberry, your blog has made me realise that I have been rushing this. I am feeling so low today so I think I will go back up to 5mg (or more if needed), wait until I feel better again then go down a mg at a time, in my own time.

Just wondering, if there are any articles or forums etc that anyone could recommend for partners of people coming off AD’s. DH is being very supportive but I just wish he understood what I am dealing with. I don't want to sound like I am wallowing if I sincerely tell him how I feel sometimes.

Thanks for the great advice on this thread and I wish you all luck.

kizzie Wed 05-Jun-13 14:48:29

Hi strawberry - just popping on to say hello. (For everyone else Strawberry and I have a very similar experience of trying to come off AD's.
Im really sorry that you've just gone through that big dip but gald everything levelling off again now.
Im on the equivalent of about 8mg at the moment too. Still very slowly reducing but I do wonder if there is now a point where I cant go below?? (I think weve chatted about that before.)
Anyway good luck everyone.

And I completely second the - dont do alternate days ...

kizzie Wed 05-Jun-13 14:51:26

findingme theres an american forum - paxilprogress.org
Lots of different experiences on there - including from UK.

strawberry17 Wed 05-Jun-13 18:11:37

Hi Kizzie yes I remember you!

There is also this site, but don't think I've ever seen anything specifically for partners but I have seen other family members of people there:

survivingantidepressants.org/index.php?/index

flossieflower Wed 05-Jun-13 21:37:38

I recently came off lofepramine after taking it for several years. I had to reduce the dose by a quarter of a tablet at a time, with a week between dose drops, and I still had a whole day of throwing up after each drop. Also two months of constant dizziness and nausea as withdrawal effects. I was on three tablets per day so it was a long journey but I'm now totally off them and feeling better physically but not emotionally!!

Before the lofepramine I was on venlafaxine which is notorious for being awful to come off. I chose to do it 'cold turkey' as the kids were away for a week so rather than prolong it I decided to accept having a week of hell but it be over more quickly. It was the most ill that I've ever been in my life, I literally couldn't move for a week. I felt sick, dizzy, hurt all over, had 'electric shocks' in my head constantly and it was so bad that I will never take venlafaxine again even though it helped my mood enormously while I was on it.

Since stopping another tricyclic and feeling very unwell I'm unsure if I want to have to go through the withdrawal from one again even thought my mood is now dropping by the day. I took mirtazapine for a couple of weeks but stopped it a few days ago as I was constantly short of breath on it (I'd had it briefly in between the venlafaxine and lofepramine and had had the same side effect then so changed). I have been on several SSRIs and had side effects so don't want another of those. Which leaves me with very little choice!

My GP is useless- I just fill in a prescription request now for whichever drug I think I need having read the BNF and she issues it. I'm sure they are supposed to monitor you a bit more but she doesn't care. Can't change GP as live in a rural area with only one practice and the other female GPs aren't taking on patients. Can't have a male GP due to bad experiences in the past.

I hope other people have better experiences than I've had.

I'm starting to poop myself after reading this thread.
I've done a silly thing but I've done it and can't take it back and determine to stick to it.
I ran out of venalafaxine four days ago and I'm refusing to go back for more. I do not want to be on them anymore.
I'm freezing even in this hot weather and I've got a fuzzy brain zap feeling. Please don't tell me it gets worse!

findingme Fri 07-Jun-13 07:29:32

I have no personal experience of that AD but just wanted to reply. Please get an emergency appointment with your GP and they will discuss the best way to taper off them. They will probably recommend alternate days but tell them it won't work for you and request liquid form so that you can measure out the doses and reduce very slowly every few weeks. Some people can just quit cold turkey but the success rate is much better the slower you taper (from what I have read). Take care thanks

strawberry17 Fri 07-Jun-13 07:48:09

QueenFaeriecakes I think findingme is spot on, please go and see your doctor and see if you can get this in liquid form, I understand the withdrawals from venlaxafine can be horrible and cold turkey could make you feel very ill.

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