SSRI Withdrawal

[Nocd39]

I’ve had problems with 2 different SSRIs and am currently tapering down my dose with a view to coming off my current SSRI completely. Had an awful time getting off the last one, and this time I’ve been having awful headaches and nausea with a lot of tapering off still to go. Anyone else had similar issues? Feeling a bit awful and could do with a handhold.

Onto my AIBU… for this SSRI I was very lucky to have a consultant to discuss it all with so was aware there could be issues if I did come off it, and I’m being supported with a liquid version so can taper slowly. (Only went back on an SSRI as I have severe OCD and there don’t seem to be other good treatments.) However I understand this level of support is unusual and often a liquid isn’t offered leading to people having to divide up tablets to taper off (which I’ve been advised is bad because the medicine isn’t always evenly distributed in the tablets.) Luckily not for everyone but withdrawal from SSRIs is a known serious issue for a significant number of people and anecdotally I know a few people who have given up on coming off them because the withdrawal was so bad.

Especially as so many people take SSRIs, I feel GPs should be warning people of the potential for withdrawal effects, and letting people know the risks and likelihood of this happening. Also, as part of their contracts with the NHS, drugs companies who make huge profits from these drugs should do more research into withdrawal/helping people come off the drugs when no longer needed, and should make liquid products more available and affordable (they can be super expensive.)

Am I being reasonable or unreasonable?!

Would especially be interested in views from HCPs and those taking/who have taken SSRIs.

does anyone know how long the withdrawal effects usually last for?

Definitely agree with you in principle, and certainly for some people they can literally be life saving. But, like most medication, it’s not without its risks. I think part of the issue is 1. lack of mental health support through the NHS so people may end up on medication just to get by whilst waiting, even if maybe SSRIs might not be needed if talking therapy is available more quickly and 2. for some illnesses there are few alternatives to SSRIs e.g. in my case I have severe OCD and the recommended treatment is ERP therapy plus SSRIs. If they don’t work, there’s nothing else that has been researched as an alternative

Yes, I had this with fluoxetine, tapered off over about two months but it took another couple of months before the arm jerking and stuff fully stopped. It wasn't pleasant but the ADs absolutely helped me.

I think the problem is there’s very little research, so it’s anything from zero withdrawal effects, to months. I’d be very interested if any HCPs are aware of research into this.

@bellsend I’m sorry you’re suffering with this too. Perhaps as a first port of call you could speak to your pharmacist? See if they have ideas about tapering?

This thread is a really interesting read.

my husband has been taking 50 of citrolopram for 3 ish years. In this time he has gone cold turkey at least 4 times that I know of. First time I realised he was a completely different person and he denied not taking his medication but later admitted he couldn’t be bothered to get another prescription so just stopped taking it one day all together. He vowed never to repeat but a year later I noticed he was irritable and angry again and he was trying to lose weight. I put 2+2 ans realised he had cut the pills as an attempt to lose weight as he blamed them for overeating.

now another year later and he’s awful again and I’ve looked for the pills everywhere none in the house. He was definitely taking them pre Christmas as he had packets in his drawer.

can anyone help confirm I’m not imagining things and it would be likely he would be moody etc if going cold turkey? I can never ask him about it as he gets very defensive and angry

I feel slightly relieved to know it's not just me that struggled with paroxetene/seroxat withdrawal! There was a point where I felt like bugs were crawling all over me.

I actually had to come off it because I was taking it with amitriptyline and they wanted to increase the dose of that. That might not have helped the withdrawal.

Gosh that sounds hard. I’m not a medic but if he was like this twice before when you know he stopped taking them it does sound likely. From what I understand going cold turkey is really unadvisable and can even be dangerous. Is there a way you can safely and calmly discuss this with him? If he doesn’t like the side-effects then his GP might be able to prescribe him something else and then he can taper off this one?

@Nollybolly6 when I started coming off Sertraline I was extremely moody, it improved though.

He doesn’t like being ‘blamed’ so denies or lies sometimes, it’s a thing from his childhood as his parents were strict so his default is to lie.

i don’t think he realises how powerful ssri can be - he doesn’t take it seriously in my books eg still drinks a lot on occasion and I can see the alcohol and AD don’t work well together. He also drinks a lot of red bull a lot and I think this messes with his anxiety and depression and energy levels (big crashes). He’s just not serious that he is not okay a lot of the time.

i wonder what health dangers there are apart from just the unpleasant moods? Might do some googling

This is a useful resource for healthcare professionals tapering people’s antidepressants. I think we knew about it but the importance of an incremental taper at the bottom end is relatively new.

blackwells.co.uk/bookshop/product/The-Maudsley-Deprescribing-Guidelines-by-Mark-Horowitz-David-Taylor/9781119822981

This is helpful thanks. I wonder if this knowledge on tapering is better understood and explained by HcPs working in specific mental healthcare settings. Whereas I imagine many if not most people are prescribed them by GPs/would go to their GP for help coming off SSRIs

If required yes but genuinely cannot remember a single occasion when it was, always managed with tablets, usually dropping dose to every other day, then every third towards end, we used a well published algorithm ( maudsley)to help with dose reduction and stopping

You’re being very reasonable

I’ve spoken to both the gp and pharmacist. Both give different and very vague answers. The gp actually googled it 🤣

im basically down to taking nothing, maybe I’ll try just licking the damn tablet

I’m sorry you’re also having such hard with this too x

When I was on my high dose citalopram, if I’d stopped cold turkey I would have been a nightmare. The withdrawal effects are horrible which in turn would have made me angry, ratty, no patience etc.

Oh my gosh yes it’s all those - angry, ratty, no patience, no tolerance, slamming around the house, agitated, restless. Hates me blames me for everything minor thing going wrong in his life etc. But he doesn’t think it’s the lack of medication he thinks it’s me being an awful person to live with.

I can just tell when he starts changing and I can tell when he starts taking medication again slowly (normally 4-5 weeks and he’s back to calmer him but even within a week he’s nicer to be around). I just don’t know how to talk to him about it without it sounding like blame or criticism, he’s beeh easily hurt and offended

you have my sympathy, it’s hard.
I did it unsupported myself, and did it wrong (unsurprisingly!) I had horrible side effects and the doctor didn’t believe they were related to the drugs. I’d only been on it maybe 8 -10 weeks but knew I had to come off them.

the cutting down gave me a few days trouble but the stopping was off the chart! I did not expect it to be that bad, as I’d dropped to as small as I could cut them (accurate measurements!)
I rode it out, with sickness, headaches and sleepless nights.
I’m left with impulse control issues now that I never had before.

good luck, they are so quick to put you on them there definitely needs to be more looked at getting off them

Yes I have tried unsuccessfully to come off Citalopram twice and the anger I experienced was pure rage.

So much so that I am currently still taking them as too terrified to try again.

I was very lucky to have a GP way back in the late 90s who recommended liquid doses for gradual withdrawal - Seroxat.

Since then I've been on and off (mostly on) Seroxat or similar SSRIs and have come across a gamut of withdrawal understanding from GPs. However, most are open to using liquid forms of the SSRI once they understand it is for long-term dosage reduction. The worst understanding I've come across is the just stop GP advice. I don't think many GPs advise that now.

Deciding to live without SSRIs is an important decision and again I'm lucky to have a GP that understands and supports this. He listened to my solution and so far so good - a bit tough going, but then Jan/Feb always has been.

I've spoken to many GPs who have advised going every other day with dosage and that a couple of weeks and withdrawals should be over. I've been tapering off 10mg Citalopram for 18 months dropping 10% per month. The problem isn't getting it out of your system, the problem is that your brain has to adapt again to the change of being without the drug it's now used to. This can be fine for roughly half of patients while the other half can experience symptoms worse than those that made them reach out to a drug in the first place. This can last for years. The companies making these drugs don't fully understand what they do, so I try to not get furious when I meet a GP giving the wrong advice.

Hi @Nocd39 I saw your post last night and wanted to post something considered and not rushed. I totally agree with you that there's not enough information out there about coming off SSRIs, particularly if you only see a GP. I saw another poster said something about 'this is the protocol' but my frustration is that my GP put me on antidepressants and then none of them knows enough about coming off them! One said 'well when I took them 20 years ago it only took me 3 weeks...' I hope the consultant you're seeing is helpful - I seriously considered seeing a psychiatrist privately at one point. Most people on antidepressants on the NHS, afaik, have only ever seen a GP (or many GPs!).

Here are a few things I've done. I'm trying to keep it positive, as it is really hard. I've been on sertraline for nearly 10 years. I went from 100mg to 50mg to 25mg without too much fuss - I think! On a lower dose it means my biggest side effect of night sweats has stopped (a common enough side effect in women of any age, but not well sign posted...) But for over 5 years I've been weaning off in different ways. Because of covid lockdowns, and also feeling abandoned by the NHS, there have been plateaus, and then also some really lows. My motivation for getting off them is a combination of approaching menopause age and wanting to be sure that the symptoms I then have are menopause and not withdrawal symptoms or actual depression (or side effect night sweats!)and feeling that I can mange without them for the rest of my life. I do worry some of my feelings are numbed while I'm still on them. Or sometimes particularly enraged...

The MIND website is good on half lives of the different drugs, and how long they take to come out of your system. However, they are the ones who quite gaily suggest getting liquid prescriptions. I had to fight to get a liquid prescription - the GP insisted I find out the cost from the pharmacy before giving me the right prescription, the pharmacy would only give me the cost if I produced the prescription. I got some for 2 or 3 months eventually but then realised it expired really quickly so panicked about getting more.

So since then, under some guidance from one GP and then more recently the pharmacists from the GP practice I have been dissolving a tablet a day and using a syringe. This might be an option for you if it takes a long time and the liquid can't always be an option. I take one 25 mg tablet of sertraline and cut it in half (you could grind it up a bit). I put it in 10 ml of water. I leave it for a while to dissolve - have my breakfast, do my teeth. I then use a 1ml syringe (really tiny ones - you can order them at the Boots pharmacy counter) and syringe the correct amount. I'm currently at 0.85ml. In November it was 0.9ml. I was dropping by 0.1 of a ml but now it's been suggested as 0.05ml. I can't do the maths I'm afraid, but it means I'm on tiny amount of the 25mg every day. They key thing it is every day. I tried the cutting up and taking them alternate days and that did not work. In Msy last year I was on 1.4ml. I had thought it'll be another 8 months but now it might be 15 months more.

The 'practice pharmacists' are employed by the GP practice and have been really good - they see patients to discuss new medications and managing medications. One is a bit cold fish about asking 'and have you thought of harming yourself this month' but they know their stuff. I'm on other medications for a couple of other things so I get frustrated sometimes they focus on that, and blood pressure and blood tests but I feel at last I've got some continuity of care. That has taken a while though and has been a bit stop / start. I've also not held back from giving print outs and links to GPs new to me about withdrawal symptoms - no idea if they read it all but I've had to really fight to get heard. My 'usual' GP once said 'well, you could just stay on them forever'.

There's a doctor called Mark Horwowitz who is worth googling. He's written a book about his own experience of coming of SSRIs but is also a doctor treating patients coming off. Also look up Joanna Moncreiff. There is also a community out there called 'surviving antidepressants' that might be worth looking up.

Hope this helps - good luck.

Oh sorry, just seen Mark Horowitz already suggested. I agree, what he has written up needs to go to GPs. All of them.

could you try the dissolving and using a syringe, like I'm doing - see my first long post just now.

Hi @Catza what is CMHT? I was not given a few days to decide - well only that I had the prescription and could decide when to start them. No leaflets. This was nearly 10 years ago. The only side effect my GP mentioned was loss of libido, but said only the men seem to care about that. It did actually affect my ability to orgasm for a while when I was on the higher dose but no one talks about that.

I think it is a GP problem. Most antidepressants are prescribed by GPs and people on them never see a mental health professional. Also when you first go on them, you really really need them, so even if I had been given information about tapering off I wouldn't have thought about it. I did warn a friend off going on them though a few years later.