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to want to get off my antidepressants asap after this evening’s Panorama?

338 replies

GeraniumGirl · 19/06/2023 22:52

Anyone else feel the same after watching the programme tonight?

OP posts:
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9
johnworf · 21/06/2023 07:19

MadKittenWoman · 20/06/2023 20:28

I have been on 20mg of Citalopram for many years, and am happy to stay on for life as agreed with my doctors. With them, I feel like me. Without them, I'm VERY angry and upset, anxious and depressed. Partly chemical imbalance, partly result of a narcissist mother and Catholic convent guilt.

Same. Without mine I wouldn't be able to function as my anxiety is so bad. I have tried talking therapies in the past but they sadly didn't work for me.

Eyesopenwideawake · 21/06/2023 08:16

@melinab - thank you for your incredibly interesting and informative posts.

Dulra · 21/06/2023 08:52

GeraniumGirl · 20/06/2023 14:10

I didn’t take my tablets last night so I’ll see if I can go cold turkey. If not, then I can try the tapering down approach.

Please don't go cold turkey it won't work. What's the rush? Go back to my original post and look at how I was weaned I would strongly recommend going at this pace and in consultation with your gp. Mind yourself 💐

Triptoqueen · 21/06/2023 09:37

I have been prescribed various things over the years, many for sleep or anxiety problems. And I would research every one of them intensely online. And my conclusion is that what suits one person, has 0 side effects, is anothers' worst nightmare with life long issues resulting.

People posting they have ongoing side effects years after coming off.
People posting they have crippling headaches and /or nausea, stomach cramps after the first pill.
Everyone is very very very different.

My mother was prescribed Tramadol for arthritis pain, made her dizzy, sick, ill.
Turned out her cleaner took it twice a day and had done for years.
Everyone is different.

TaraRhu · 21/06/2023 09:49

I find this post quite scary. If you are on here and thinking about stopping your medication please go abc talk to your doctor. Yes, there are instances where anti ds will be placebo ls- perhaps where your mood lightens due to changes in circumstances or your depression is temporary. And not everyone is the same and I worry there is too much encouragement to come off on here.

But I have suffered long standing clinical depression. Anti depression ants saved my life. I do not find they 'numb' my feelings. They make them normal. I do t go into a spiral of worry for 3 days over something silly. I am happy and content but o still get sad, feel things it's not some sort of drugged up euphoria ( be nice if it was!)
@melinab your posts are interesting and no doubt accurate but be careful not to insinuate things are all in peoples heads. You talk about morning sickness like it can disappear with a sugar pill. Those women probably just stopped being sick as their pregnancies progressed. I had horrendous morning sickness with my second. It lasted 4 months and I lost a tonne of weight. I tried pills and they didn't help. No placebo could have helped it. These pills exist because these conditions exist. There are cases where medication maybe isn't the right course or isn't needed but for many it is. It's really important we don't stigmatise those who genuinely benifit from pills.

Restee · 21/06/2023 10:34

@melinab I find your posts really interesting and valuable, but some of your language is a bit dismissive and reductive. You're clearly very passionate about this topic and understandably keen to share what you've learnt with others in order to help them and that's admirable, but it's also worth analysing your own biases (we all have them).

melinab · 21/06/2023 13:22

TaraRhu · 21/06/2023 09:49

I find this post quite scary. If you are on here and thinking about stopping your medication please go abc talk to your doctor. Yes, there are instances where anti ds will be placebo ls- perhaps where your mood lightens due to changes in circumstances or your depression is temporary. And not everyone is the same and I worry there is too much encouragement to come off on here.

But I have suffered long standing clinical depression. Anti depression ants saved my life. I do not find they 'numb' my feelings. They make them normal. I do t go into a spiral of worry for 3 days over something silly. I am happy and content but o still get sad, feel things it's not some sort of drugged up euphoria ( be nice if it was!)
@melinab your posts are interesting and no doubt accurate but be careful not to insinuate things are all in peoples heads. You talk about morning sickness like it can disappear with a sugar pill. Those women probably just stopped being sick as their pregnancies progressed. I had horrendous morning sickness with my second. It lasted 4 months and I lost a tonne of weight. I tried pills and they didn't help. No placebo could have helped it. These pills exist because these conditions exist. There are cases where medication maybe isn't the right course or isn't needed but for many it is. It's really important we don't stigmatise those who genuinely benifit from pills.

@TaraRhu , I made no comment on why these women changed and never mentioned anything being 'in their head' just reported a study that showed that the placebo effect is so powerful that it counteracts the effect of a drug given. Placebo effects exist in cancer treatment, we don't think that cancer is in people's heads surely. Usually there is radiological evidence of cancer. I never stigmatized those who take these pills. I was on them for 19 years. And I never once told anyone whether they should or should not take these pills. That is everyone's own choice. My goal is to provide information from academic sources in an environment where the information people get is from GPs whose life is easier because of these pills and they can get the patient out of their office and pharma companies that have made billions and billions off of these pills and have engaged in some very shady practices https://www.ft.com/content/31c66ed6-f778-11d8-afe6-00000e2511c8

@Restee , I understand what I am posting is uncomfortable to some people but it is based on studies and evidence. I am sorry you find it reductive. You are welcome to post more detailed stuff with alternative evidence. I have a POV on the subject which is hard earned (unfortunately). I am not sure what you find me dismissive of. If you could explain I could perhaps address your concern.

Some people find these drugs helpful. Whether it is because of placebo effect or genuine drug effect is impossible to tell on an individual basis. And as long as it doesn't matter to them, it doesn't matter to me and it shouldn't matter to anyone. Everyone's drug choices are their own. I would never tell anyone what to do with their treatment because I am not the person bearing the consequences. My goal is strictly to inform.

Studies show that ADs do help a few more people than placebos. The number needed to treat - the number of people who need to be taking antidepressants in order for one person to benefit from the drug is 7. So out of 7 people 1 person benefits from the antidepressant itself, but a few more will benefit from the placebo effect.

In trials, numbers needed to harm can range from 4 to 30 for tricyclic ADs. This is more complicated because of how we define harm. With SSRI NNH where suicidal thoughts were considered only was 64 (may have been children)

So if 64 people were treated with SSRI one extra patient of those would get suicidal ideation from the drug itself. This study cites a number needed to harm of 7 for duloxetine in middle aged women where harm is what the FDA would define as undesirable.
https://www.bmj.com/content/358/bmj.j3697/rr-4

https://www.psychiatrist.com/jcp/assessment/research-methods-statistics/numbers-needed-treat-harm-nnt-nnh-statistics-tell/

You do with that what you will.

Subscribe to read | Financial Times

News, analysis and comment from the Financial Times, the worldʼs leading global business publication

https://www.ft.com/content/31c66ed6-f778-11d8-afe6-00000e2511c8

TheOrigRights · 21/06/2023 14:53

@melinab I found all your posts on this thread really interesting, thank you for taking the time to post.

Restee · 21/06/2023 17:05

@melinab No, I'm not here to put forward evidence for a belief or an agenda, because I'm keenly aware that my lived & professional experiences aren't universal (and others are better at that link-gathering stuff than me. And I'm tired...) I do value your posts, as I've said, but I don't think an adversarial approach is necessary or helpful. I'm not going to complete a textual analysis of your posts or pick them apart; it's the overall tone that gives me pause.

You do you, but I'm happy occupying the grey area on this one.

FrazzledMCPremenopausalWoman · 21/06/2023 18:44

Citalopram 40mg here, for the past 2 years. They've saved my life and I've been told I can continue to take them indefinitely- at least until menopause. I'd rather take the risk of a shorter life and poor physical health later, over impaired quality of life due to depression and anxiety now when I have young children and elderly relatives who need my care.

latetothefisting · 21/06/2023 19:55

DemiColon · 20/06/2023 10:27

A lot of this stuff has been known for years. But it's very disconcerting to discover that doctors are basically making a lot of it up, and are making recommendations based on that.

I find it shocking how many people are being prescribed these kinds of drugs due to something like bereavement. It is perfectly normal to be depressed, even seriously depressed, under those circumstances. And unfortunately a lot of the cultural outlets and customs we used to have to support people in that through their communities are now gone.

But that is a very good example of something where in the end, the individual needs to find a way to integrate the realities of death. Which is the case with many kinds of psychological trauma and illness that are situational. And drugs don't help with that much, they typically mask it, which I suspect is why drugs don't tend to create more resilience in the end.

But it is easier to offer a pill than support, especially support around things that many people don't deal well with themselves.

I agree to some extent, but then sometimes people need something extra short term, even if there is a rationale reason for their feelings of depression or anxiety, doesn't mean they don't need support managing them.

e.g. I was prescribed anti depressants during 2020 - I lived alone at the time, worked from home in a stressful job and literally was not allowed to see anyone, at all, for months (lived in an area where we didn't have 'bubbles' etc.) and I got really depressed and anxious.

Like in your bereavement example, technically there might not have been anything 'wrong' with me because the feelings I was experiencing were a very normal and expected consequence of the specific circumstances I was in - obviously most people would feel depressed/anxious/lonely if they were restricted from having any human contact for months!

But that didn't stop me feeling them.

As it worked out, as lockdown eased and those specific stress factors were reduced, and I could also access other support mechanisms (see family and friends again, go to gym/swimming, hobbies, etc.) I felt better and came off them after about 6 months.

I honestly think that going on them was completely the right thing to do at that time, but it was also appropriate for me to then try coming off them when things got better.
It's an issue with lack of ongoing monitoring rather than the initial prescription IMHO.

Exactly the same as if you broke your leg - it would be appropriate to have your leg in a cast for the first few weeks.
Some people might realise that they had an ongoing stress fracture/weakness so would need some form of support for months/years longer, and that would be the right decision for them.
but for lots of others, if the leg has healed completely, the cast can come off. Keeping it on for the rest of your life just in case you ever tripped again would be unnecessary.

But of course it's for specialists to tell and support you with the removal, nobody should just be given a cast because it's the easiest and cheapest option and then just left to get on with it.

stillherenow · 21/06/2023 20:25

@FrazzledMCPremenopausalWoman why until menopause? Just curious as I think I’ve needed them in part because of menopausal anxiety (I can’t take HRT)

I was prescribed them a year ago in a quick phone call (got them the same day! I must have been a mess ). and have had no conversations at all about them with the GP.

kizziee · 21/06/2023 20:29

@stillherenow which AD have you found particularly helpful for anxiety. Your description sounds very familiar to me

stillherenow · 21/06/2023 21:01

@kizziee citalopram. I had a wobbly couple of weeks with massive ups and downs when I started but once I had a consistent level in my system I felt so much better. I’m on 20mg.

RachelHair · 21/06/2023 21:06

I did my taper as

Week one
Day one 30mg
Day two 25mg
Day three 30mg
Day four 25mg
Day five 30mg
Day six 25mg
Day seven 25mg

Week two 25mg a day every day

Week three
Day one 25 mg
Day two 20mg
Day three 25mg
Day four 20mg
Day five 25mg
Day six 20mg
Day seven 20mg

Week four on 20mg

Just continuing in that pattern, but if the symptoms become too difficult then having more than one week stabilising on the lower dose after an incremental decrease, so maybe 2-4 weeks on that dose before trying again with the slow decrease. It meant that I could snap the tablets in half instead of using an alternative method like creating a solution which I worried would not work well.

kizziee · 21/06/2023 22:02

@stillherenow thank you

melinab · 21/06/2023 22:07

RachelHair · 21/06/2023 21:06

I did my taper as

Week one
Day one 30mg
Day two 25mg
Day three 30mg
Day four 25mg
Day five 30mg
Day six 25mg
Day seven 25mg

Week two 25mg a day every day

Week three
Day one 25 mg
Day two 20mg
Day three 25mg
Day four 20mg
Day five 25mg
Day six 20mg
Day seven 20mg

Week four on 20mg

Just continuing in that pattern, but if the symptoms become too difficult then having more than one week stabilising on the lower dose after an incremental decrease, so maybe 2-4 weeks on that dose before trying again with the slow decrease. It meant that I could snap the tablets in half instead of using an alternative method like creating a solution which I worried would not work well.

Hi @RachelHair ,
this pattern of alternating doses is not the best way to come off of the drugs or lower your dose as it creates chaos in the brain. It is better to keep a consistent dose every day. Otherwise you brain becomes sensitized and can go into withdrawal when you come to the lower doses. I don't know why GPs prescribe this bizarre regimen - it has no basis in any clinical studies. It could potentially work for fluoxetine which has a very very long half life but for the other ADs it doesn't.

Basically your brain goes into mini withdrawal every time you do this. I used to get withdrawal effects from skipping one dose of citalopram (lucid dreams). The thing is that even if you don't get withdrawal initially you may get them later at the lower doses. Be careful.
I found a lot of help at Surviving Antidepressants when I went into withdrawal. https://www.survivingantidepressants.org/

Surviving Antidepressants

Tapering psychiatric drugs

https://www.survivingantidepressants.org

FrazzledMCPremenopausalWoman · 21/06/2023 22:32

stillherenow · 21/06/2023 20:25

@FrazzledMCPremenopausalWoman why until menopause? Just curious as I think I’ve needed them in part because of menopausal anxiety (I can’t take HRT)

I was prescribed them a year ago in a quick phone call (got them the same day! I must have been a mess ). and have had no conversations at all about them with the GP.

I'm not completely sure but I remember the GP mentioning that it's not great for kidneys post-menopause?

FrazzledMCPremenopausalWoman · 21/06/2023 22:35

stillherenow · 21/06/2023 20:25

@FrazzledMCPremenopausalWoman why until menopause? Just curious as I think I’ve needed them in part because of menopausal anxiety (I can’t take HRT)

I was prescribed them a year ago in a quick phone call (got them the same day! I must have been a mess ). and have had no conversations at all about them with the GP.

Although I've just had a quick google and can't seem to find anything that backs it up, so I shall ask at my next review.

RainingAtLast · 21/06/2023 22:48

melinab · 21/06/2023 22:07

Hi @RachelHair ,
this pattern of alternating doses is not the best way to come off of the drugs or lower your dose as it creates chaos in the brain. It is better to keep a consistent dose every day. Otherwise you brain becomes sensitized and can go into withdrawal when you come to the lower doses. I don't know why GPs prescribe this bizarre regimen - it has no basis in any clinical studies. It could potentially work for fluoxetine which has a very very long half life but for the other ADs it doesn't.

Basically your brain goes into mini withdrawal every time you do this. I used to get withdrawal effects from skipping one dose of citalopram (lucid dreams). The thing is that even if you don't get withdrawal initially you may get them later at the lower doses. Be careful.
I found a lot of help at Surviving Antidepressants when I went into withdrawal. https://www.survivingantidepressants.org/

@melinab The example tapering plan for Citalopram says to reduce by 50% every 2-4 weeks so that is a big initial drop from 40mg to 20mg in one day. Does that sound sensible?

stillherenow · 21/06/2023 22:54

You can use a pill cutter and be quite accurate. The GP prescribed me 20mg but I wanted to start slowly so cut them in half and I’m glad I did. If I was to taper off I think I’d try and cut them into 4 and spend 2-3 weeks each time I dropped . I wouldn’t vary the doses as I think your body needs to let the amount settle .

justanothermummma · 21/06/2023 23:03

I'm on 100mg sertraline and my pharmacy ran out (live in the sticks). I had 48 hours of none and my god, the sweats I had were horrific, the panic set in.

I'd probably be much worse of having not had them.

I've weaned off it twice before and when I've had my 'dip' (as I call it) it's been more intense each time.

I've never been on such a high dose, but it really, really helps. I need it. I have to stop fighting it.

I have a therapist and as amazing as it is. I wasn't on sertraline when I started and my progression in my mental heath has improved significantly with therapy and sertraline working together.

Thinking back to Covid vaccine scares etc etc, it's all relative. Everything is risky and everything is detrimental if not taken in moderation. Sertraline saved my life. So I'll deal with it, placebo or not.

melinab · 22/06/2023 01:05

RainingAtLast · 21/06/2023 22:48

@melinab The example tapering plan for Citalopram says to reduce by 50% every 2-4 weeks so that is a big initial drop from 40mg to 20mg in one day. Does that sound sensible?

So the harm reduction way to taper psychiatric drugs is what people have used for benzo-s for decades now - no more 10% of your previous dose every 4 weeks. That means you will be tapering for about 2 years but should have no withdrawal symptoms.

It is often easy to drop large amounts at the higher doses - I dropped uneventfully from 30-20-10-5-0 (I was on 30 for only a month so that doesn't really count, I had been on 20 for 19 years prior). I didn't feel any issues until dropping from 5 to 0 and then all hell broke loose and I haven't yet recovered fully 4 years on. Such severe withdrawal may not happen to everyone but happens to enough that I would be careful if I were you.

Your chance of having severe withdrawal increases with the amount of time you have been on the drugs, whether you have changed drugs or skipped doses or alternated doses like you are doing now but sometimes even people who have been on the drug for a short amount of time will get withdrawal symptoms.

Many withdrawal symptoms are confused with relapse. Symptoms can range from physical - tingling, dizziness, loss of balance, hypersensitivity to foods/sound/light, brain fog, aphasia, flu like symptoms, brain zaps, nausea, insomnia (I could only sleep about a total 2 hrs a night being jerked awake with terror every half an hour or so). 4 years on I still can't sleep more than 5-6 hrs a night and still have wake up terrors. Some people also have gut issues (most of our serotonin receptors are in the gut). Others have headaches and pain. Some people have genital hypersensitivity (persistent genital arousal disorder - PGAD)

Emotional symptoms of withdrawal can be just heightened emotions - I had intense bouts of anger and I am not usually an angry person at all. Panic attacks, anxiety, hypervigilance, low mood, lack of motivation etc. crying spells, anything you have ever had intensified, irritability.

Not everyone has these severe symptoms but they are not uncommon either.
If people taper very slowly - by 10% of your previous dose a month - so from 20mg to 18mg then to 16.2mg etc. they experience little to no symptoms though some have difficulty coming off of that as well. Many people are surprised by how resilient they are.

Here is the Lancet paper that shows why withdrawal happens at the lower doses - basically going from 1mg to 2mg of citalopram increases the occupancy of drug receptors in the brain by more than going from to 10mg to 20mg.
https://markhorowitz.org/wp-content/uploads/2021/04/18TLP1004_Horowitz-1-11.pdf (not sure how you are with reading academic papers)

Here is the video that Mark Horowitz the author of the paper above has on the issue:

This sounds discouraging but it really is not as difficult as it sounds - once you learn measuring the drug or getting a liquid version it is a slight inconvenience compared to the risk of withdrawal. I am happy to answer any questions you may have, just tag me :)

Melina

https://markhorowitz.org/wp-content/uploads/2021/04/18TLP1004_Horowitz-1-11.pdf

stillherenow · 22/06/2023 05:41

@melinab thanK you. Question for you - why did you come off them and do you regret it as you still have the withdrawal effects? I think my menopause is ending slowly so I could try , maybe in a year, I’ll have been on them 2 years then. And how do you reduce so slowly the pills are tiny!!

melinab · 22/06/2023 12:23

stillherenow · 22/06/2023 05:41

@melinab thanK you. Question for you - why did you come off them and do you regret it as you still have the withdrawal effects? I think my menopause is ending slowly so I could try , maybe in a year, I’ll have been on them 2 years then. And how do you reduce so slowly the pills are tiny!!

@stillherenow , I wanted to have a baby and I knew they doubled risk of autism and some heart abnormalities. A friend warned me that he had 3 years of withdrawal and I didn't believe him thinking he is just trying to justify the choices he made quitting his job (he was super successful and when he want into withdrawal just quit his job and moved in with his parents but didn't tell us why at the time). I was naive and self important. I did a 5 month taper anyway instead of the 4 weeks recommended - just to be safe.

Surprisingly, even though I had wanted to have babies my whole life - that was the only thing I really wanted in life, once I came off the pills, especially in the beginning I couldn't stand kids. That has gotten much better now but might be just as well given that the baby ship has sailed for me (too old now). Before that there wasn't a baby or a kid that I didn't find adorable. Now I am much more selective :)

I didn't know much about ADs at that time. I had asked my doctor at the time of prescription if they were addictive and she said no, just taper over a couple of weeks. I don't think at the time she knew either. I believed in the chemical imbalance theory and so thought that after the pregnancy would need to go back on them. But because of what happened to me I have read voraciously including the academic literature.

Knowing what I know now there is no way I personally would touch one of these pills or even other psychotropics. Though I used to LOVE the calm from xanax which I used occasionally - once every 1-2 months. The depths of desperation and panic and terror I have experienced during withdrawal are not something that I could have ever imagined. But that is what is right for me and I am not saying that others should do the same. We each bear the consequences of our decisions.

Even when they work for people sometimes they just stop working or start having severe side effects (e.g. cardiac issues or insomnia) - people call it poop-out. That did not happen to me and I haven't seen anything in the literature to explain why it happens but it happens enough that the option of staying on them for life and avoiding withdrawal would not convince me either.

I don't think they ever really did anything for me - my anxiety was situational - I had trouble picking a course of study at uni (which now sounds so stupid but at the time seemed life determining) and once that was done it was resolved which I attributed to the pills that I had started a month ago. With proper counseling I could have probably avoided them but too late now.

On them I have had episodes of ups and downs as well, including severe anxiety, again situational, that all went away as well as the situation changed (I didn't change meds but stayed on these for 19 years because I had bought into the sales pitch of chemical imbalance). I did not take them for depression and this is MY experience so doesn't mean that they haven't had different effects on other people.

For some of these drugs you can get liquid versions to taper (citalopram) and dilute it to get the right dose but the liquid version has 25% more bioavailability (strength) mg for mg so need to do a lower dose when you do a switch (check the leaflet to make sure it is true for your liquid as well, they can change the formulation). Always use a syringe (they have tiny ones) instead of the dropper because the dropper may not be precise. Other people use jewellery scales to weight the pills or dissolve the pill in water. Some pills have tiny beads that are meant to not be crushed (I think venlafaxine) so people count beads - i.e. they will remove a few beads every 4 weeks. I can give you more resources if you'd like.

Note: Not everyone has as severe withdrawal experience as I did but quite a lot do. The risk of having this severity increases if you've withdrawn before (similar to alcoholics kindling), if you've been on them for a long time, if you've ever skipped doses - your brain just gets more sensitized. If you do a proper slow taper (10% of pervious dose every month) you can avoid withdrawal effects altogether - you are basically allowing enough time for your brain to adapt to the new dose.

You can check out a bunch of Facebook groups or Surviving Antidepressants website or tag me if you'd like more info.