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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?

apatchylass Wed 19-Jun-13 21:36:37

I can't wait to lose the stupid weight either. Hate it so much. 20lbs over the last couple of years - just crept up and up and up. That and the endless sleepiness - I just can't stand snoozing my life away any more. Want to be back to a healthy BMI and have the energy to get through a day without two-hour naps every afternoon and evening.

Until recently, citalopram felt like a brilliant life line - a way to help me feel normal and like 'me' again. Now it feels like poison. Which I guess is the body's way of saying it's no longer effective. I loathe taking it.

I'm looking forward to being able to loose the excess weight , stop feeling so hungry all the time (this has already changed drastically).
I chose to come off them purely because the only thing depressing me now is my weight and the four stone I have put on in 18months is not welcome here anymore.
Already stopped needing to eat all the time to keep myself from feeling dizzy.

apatchylass Sun 16-Jun-13 19:51:13

Queen it's really good that your mood is good.

What are you looking forward to most once you're completely clear of them? Has your exhaustion lifted yet?

End of Week 2 of no meds at all and I really suffered for the 2nd week, slept lots, brain zaps cold sweats and terrible pooping. I lost 4lbs hurrah!
I didn't make life easy for myself as I gave up smoking week 2 so I was fully expecting to turn into a complete hazard to society but I kept it together and very surprised at how easy I've found it.
Mentally I've been very positive and upbeat, just very tired so slept in school hours.
Withdrawals been tough but I was determined, reminded myself it wasn't going to last and didn't put pressure on myself.

apatchylass Fri 14-Jun-13 23:50:49

Queen - keep pooping grin It's great to hear about weight loss as a by-product of coming off ADs. I've put on 20lb since starting on them, having been a stable weight throughout my adult life.

Only side effect I'm having is I'm pooping a lot.....an awful lot. Ohhh weight loss yay!

strawberry17 Sun 09-Jun-13 18:40:23

francesrivis you're probably doing absolutely fine, it does get a bit fiddly at the end but from what I understand it's still best to do no more than 10% of previous dose, which obviously gets difficult to work out the lower you go, have you got anyone in real life who can help you work out the maths? and also at some point you have to decide on your jumping off point. Just don't rush it, listen to your body and how your feeling. It might be worth holding on for a bit to let your body catch up as you've gone quite fast.

Also, bear in mind, that people who end up on sites like SA are going to be the ones who are struggling with withdrawal, because obviously if you've managed it, you're getting on with your life and not hanging around withdrawal web sites. So don't let the site get you down, but use it for information purposes.

francesrivis Sun 09-Jun-13 17:32:57

Thanks strawberry. Am a bit scared now - I thought I had done the hard part but from what I'm reading here and on survivingads it's yet to come!! I'm currently going down by 0.75 mg at a time, sometimes weekly but sometimes taking longer between drops, just depending on how I feel. I found all the maths stuff on survivingads really confusing - do you think I am OK carrying on with what I'm doing or should I make the drops smaller? It's a bit tricky since for some bizarre reason the liquid mirtazapine is 15mg per milliletre - very fiddly!

strawberry17 Sun 09-Jun-13 09:43:15

Francesrives I guess I was quite lucky that my libido came back quickly when I started tapering but I know other people take longer. Take the last 5mg really slowly. It's a horrible side effect and so taboo and difficult to talk to doctors, or anyone, about.

apatchylass I'm glad you realised! I'm able to be supportive because I've been there done that worn the t shirt, done lots of research seeing as my doctor was no use, and I help admin the Surviving Antidepressants web site so I've learned a lot.

apatchylass Sat 08-Jun-13 15:37:20

Thanks Strawberry. You're right. The reduction (only did it for two days) didn't feel right. I got stomach cramps and dry mouth so have gone back onto 20 mg and am going to ask for the liquid form from now on. I really want it to work this time round.

Thanks for link. You're being brilliantly supportive of us all!

strawberry17 Sat 08-Jun-13 10:54:50
strawberry17 Sat 08-Jun-13 10:53:49

apatchylass I'd say that's one hell of a reduction, it's 50%, and don't do the 10/20/10 thing especially as you've been on them many years, it will make you feel dreadful, I can't remember which drug you were on but can you do a 10% or less reduction? I would talk to your doctor about the liquid, he might surprise you, mine did. You can get digital scales to make accurate measurements: scale

Loads of info on this in the tapering forums on this web site:http://survivingantidepressants.org/index.php?/forum/14-tapering/

francesrivis Sat 08-Jun-13 09:27:25

Hello everyone, really pleased to find this thread and realise I'm not the only one! I'm coming off mirtazapine very slowly and have got down from 15 mg to 5 mg over 3-4 months. Feeling pretty wobbly from time to time but probably not much more than I was when I was on them if I'm honest. My main reason for wanting to come off is the effect on my libido, which has been non-existent - I switched from dothiepin to mirtazapine in the hope that this might improve but no joy. I'm a bit worried as despite the very small dose I'm now on there's no sign of improvement - just wondering whether other people have experience of this, and whether libido does improve eventually?

apatchylass Fri 07-Jun-13 22:59:16

Queen, glad you're feeling well, but it sounds from others who know what they're talking about that you may need a more gradual withdrawal long term. You don't want a backlash. Are you doing anything else (the omega 3, the exercise etc)?

I've cut down from 20 to 10 this week, as I don't have any liquid form. Felt ropey and tired today but that could be hormones. For the first time in months I have to remind myself to take them, as I feel so much better generally since starting exercise, omega 3 and vitamins, and other parts of that twelve step, that they no longer feel like essential, which they did for years.

Not sure whether to stay on 10mg or alternate 10 and 20 so it doesn't dip too quickly. Doubt GP will give me any liquid as I've only just begun a system of 6 month supply, picking up from the chemist one month at a time.

I've booked an appointment with my CMHT so will see what they can do. I'm doing really well today, day five and I'm full of energy, creative brain is back and I'm content. Brain feels heavy and I keep getting cold sweats but other then that so far so good.

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.

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

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!

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.

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

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

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

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 ...

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.

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.

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.

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