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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

SSRI Withdrawal

66 replies

Nocd39 · 09/01/2025 17:24

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.

OP posts:
fatphalange · 10/01/2025 15:21

I'm on sertraline and amitriptyline. I wouldn't be unless I seriously needed them so have never tapered off them.
However I've had withdrawals a couple of times thanks to chemist fuck ups and i felt like I was Alice in Wonderland and jumpy.
Headaches wouldn't bother me if I was withdrawing gradually- I get them anyway from time to time.

Catza · 10/01/2025 16:44

NameChangeBirthTrauma · 10/01/2025 14:54

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.

Community Mental Health Service. Granted, this is more of a specialist service for people with enduring MH illness. I am not sure how things work in GP surgeries, presumably they don't have a luxury of a separate appointment. My post was more to reflect on the fact that OP seems to be suggesting big pharma are hiding withdrawal information which isn't the case and this information is freely available and is used in specialist services.

NameChangeBirthTrauma · 10/01/2025 17:14

Thanks @Catza Yeah I'm not sure I agree about big pharma hiding anything, but I do think that outside specialist services there is not good enough expertise and awareness of how to do tapering. It's a bit like the lack of knowledge around menopause in General Practice. And I stand by my point that most people on antidepressants have never been seen by a psychiatrist or a mental health specialist. t's not 'freely available' unless you're seeing a specialist...

Nocd39 · 10/01/2025 17:16

NameChangeBirthTrauma · 10/01/2025 14:43

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.

Edited

Thank you for sharing

OP posts:
AlisonWonderbra · 10/01/2025 17:18

It took my 18 months to get off Venlafaxine (which is an SNRI, but similar) when I wanted to TTC. It was absolute hell. The psychiatrist just told me to taper over a period of two weeks, but that was ridiculous. Even if I was late by an hour with a dose of that stuff I struggled to function.

I'm on sertraline these days and would love to lower the dose but I'm scared of the consequences.

Nocd39 · 10/01/2025 17:19

I don’t think it’s big Pharma hiding withdrawal effects so much as these aren’t consistently communicated by GPS/HCPs when people go on SSRIs. I think where big Pharma come in is that there isn’t enough research on withdrawal/how likely this is, side effects, and how these drugs work. Currently big Pharma aren’t incentivised to do this, so I suggested unthread one approach could be that this research into withdrawal etc is a condition to supplying the NHS. Not saying that’s the only/best solution but I do find it concerning that we understand so little about these drugs when sooo many people take them

OP posts:
Carlou · 11/01/2025 04:15

Nocd39 · 09/01/2025 17:24

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.

am a health professional... what do you mean about the tablets not having equal amounts evenly spread in tablet so you can't cut them? That's false. You CAN divide doses by cutting tablets. Whoever told you that should be shot...they aren't professional

Nocd39 · 11/01/2025 11:11

Carlou · 11/01/2025 04:15

am a health professional... what do you mean about the tablets not having equal amounts evenly spread in tablet so you can't cut them? That's false. You CAN divide doses by cutting tablets. Whoever told you that should be shot...they aren't professional

Shooting seems extreme! As I’ve had such serious issues with SSRIs I’m under the care of a consultant psychiatrist who can keep an eye on my medication. I trust his view. Basically what they meant is the active medication may not be evenly distributed as compared with the other stuff they pad the tablets out with. That certainly makes sense to me. I think if cutting/dissolving tablets is the only option that’s better than nothing, but if someone is really struggling with withdrawal then they could also be sensitive to small fluctuations in the dose. I think they should be offered the liquid.

As a health professional, what’s your experience re the information people are given on withdrawal and help/support they get when coming off SSRIs?

OP posts:
HoppityBun · 12/01/2025 21:26

Carlou · 11/01/2025 04:15

am a health professional... what do you mean about the tablets not having equal amounts evenly spread in tablet so you can't cut them? That's false. You CAN divide doses by cutting tablets. Whoever told you that should be shot...they aren't professional

I was told that by a nurse years ago: in fact she was telling me off!

Nocd39 · 12/01/2025 21:40

NameChangeBirthTrauma · 12/01/2025 21:21

Do antidepressants work? This British professor says they don’t

https://www.thetimes.com/article/1a4dd9b0-e8e6-4ffe-8e23-da8b5c319dce?shareToken=7b5743363ac4e00594fe1cd7cb808a7c

some bits here about big pharma

Thanks for sharing. That’s a really interesting article

OP posts:
SKLM · 12/01/2025 22:09

The likelihood of experiencing withdrawal syndrome when stopping a medicine and its severity is linked to the half life of the medication. Longer half life, smoother withdrawal from the medication. Shorter, worse, as the medication very quickly leaves the system and withdrawal symptoms are more likely to occur.

Of all the SSRIs, fluoxetine has the longest half life and paroxetine/fluvoxamine the shortest so avoid those two.

If you need to be specifically be on an SSRI fluoxetine would be the safest bet if you are worried about missing tablets.

But, if SSRIs are not suiting you there are lots of anti depressants to choose from.

I hope you are okay, can be a rocky road this anti depressant journey. Sending positive vibes.

AlpacaMittens · 12/01/2025 22:17

Just to say I've been on 100mg sertraline for about a year and it's absolutely changed my life for the best. However I have horrendous night sweats with it, to the point where I have such broken sleep I'm constantly tired. I'm now slowly tapering down to 50mg to hopefully address the night sweats. I had such an easy ride with sertraline so far, absolutely no side effects when starting it, and I went up to 100mg fairly quickly (although still gradually) as I had zero side effects with it, absolutely nothing. This makes me hopeful I I'll come down just as easily hopefully, although my GP is very very thorough and had me on a slow gradual tapering.

I'm hoping I'll eventually go down to 25mg and stay there although not sure what 25 would do for my anxiety, but I want to try it.

Nocd39 · 12/01/2025 22:21

@AlpacaMittens glad the sertraline has been a positive experience and it sounds like your GP is very on the ball. Hopefully as you’re tapering slowly and not coming off you won’t have any issues

OP posts:
Missingthe80s · 12/01/2025 22:22

I’m on old school Seroxat- not prescribed anymore due to the law suits. I have been on it for 25 years now down to 10mgm. I have tried twice ti get off it and it was impossible- just stuck

NameChangeBirthTrauma · 13/01/2025 08:02

@AlpacaMittens that sounds very similar to me. I hated the night sweats! I still sometimes get them after drinking alcohol, despite my now very low dose of sertraline.

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