DeepBlue: fluoxetine withdrawal

[DeepBlue]

Hello everyone. It’s my first time here and I’m looking for some advice. I really appreciate you taking the time to read this. I’m based in the UK. 

I’ve been on and off antidepressants since 2010 - for generalised anxiety disorder. 

 

I was on 20mg fluoxetine since mid-2017. I was feeling good a few months ago so decided to talk to my doctor about coming off them. He suggested I reduce to 10mg per day so three months ago that’s what I did. I stayed on that for around one month. Then he advised I reduce to 10mg on alternate days. I did that for a month and then stopped completely. My last dose was almost exactly a month ago. 
 

Things were going ok initially but in the last couple of weeks, some of the symptoms have got much worse. Mainly very bad insomnia, muscle tension, crawling/tingling feeling in skin, dizziness, digestion problems. And my anxiety is through the roof.  
 

I feel the taper the doctor suggested has been too quick for me. Given I’m just a month since my last dose, would it be ok to reinstate at the last dose I was on - 10mg every other day and stabilise there for a while? Unfortunately because I’m in the Uk, it’s very difficult to get liquid, so 10mg is the lowest I can go in capsule form. 
 

Thank you so so much for your help

Ryan

[DeepBlue]

Just wondering if anyone could help with this please - I’m really struggling today with terrible insomnia and anxiety? Am I ok to restart the 10mg every other day? As it’s only been about a month since my last dose? 
 

Many thanks 

Rob 

[DeepBlue]

Hi all

 

I’m really struggling right now. I’m about 5 weeks since I took my last dose of fluoxetine and I’m really having a rough time. I’m at a crossroads now of what level to reinstate at? I’ve started doing 1mg per day but my doctors are saying it should be 10mg every other day. Could I push my reinstatement to 5mg liquid per day? 
 

I’d be grateful for any help. 
 

[Shep]

Hi, DeepBlue.

 

Welcome to Surviving Antidepressants.

 

15 hours ago, DeepBlue said:

I’ve started doing 1mg per day but my doctors are saying it should be 10mg every other day. Could I push my reinstatement to 5mg liquid per day? 

 

You are right - the 1 mg a day is plenty. Your doctors are not giving very good advice. Please see:

 

About reinstating and stabilizing to reduce withdrawal symptoms

 

Tips for tapering off fluoxetine (Prozac)

Why taper by 10% of my dosage?

 

Please let us know how you're doing over the coming days. If the 1 mg dose is too stimulating, you can decrease. You may only need as little as 0.5 mg, since it's been 5 weeks since you came off. The first post in the "About reinstating and stabilizing" thread I linked explains more about this. 

 

Please continue to use this thread to ask questions and document your taper. 

[Shep]

@DeepBlueI almost forgot, please see this post about alternating days. 

 

How about taking my medication every other day to reduce my dosage?

 

That post explains the problems with every other day dosing. Instead, it's best to take a very low dose every day, same time, same dose. 

[ChessieCat]

Please note that Prozac has a very long half life and it can take 2-3 weeks for a dose to build up to full level.

 

See:

 

On 7/3/2011 at 4:11 AM, Altostrata said:

Prozac has the longest half-life of any SSRI. After you take it for a few days, half-life is about 16 days. Fluoxetine itself has a half-life of 2-4 days, but as it is processed, your body creates an active antidepressant metabolite, norfluoxetine, which has a half-life of 7-15 days. So Prozac keeps on extending its half-life as it is metabolized.

According to http://en.wikipedia.org/wiki/Fluoxetine , fluoxetine and norfluoxetine inhibit each other's metabolism, extending the half-life of the drug. Because the half-lives are so long, the full effect of Prozac on the brain may not be felt for several weeks.

fluoxetine (1-6 days) ---> norfluoxetine (up to 16 days) ---> other metabolites

 

[Faure]

Hi DeepBlue and welcome to SA.  I’m so sorry you are experiencing withdrawal from fluoxetine. Unfortunately doctors know nothing about how to get people off psychiatric drugs and we see people in withdrawal, like you, every day because of doctors. So the first thing I’d say is don’t ask doctors what to do anymore, listen to the mods on here. They are very experienced and give excellent advice. The downside is that there is nothing that can help other than sometimes reinstatement (you are well within the window for that and there is a good possibility it may help relieve your symptoms) and *time*. Your poor body needs time to recover from this experience. 
 

What you also must not do is skip days. The brain needs a nice steady predictable supply of the drug and skipping days leads to instability. As someone else said take the same dose at the same time every day. How are you measuring your dose?  
 

There is new guidance from the Royal College of Psychiatrists about how to get off these drugs which should reassure you that the advice given here is sound. Altostrata, the owner of the site, contributed greatly to this guidance. My GP was very interested in this when I told him (although I didn’t mention this site) and is sharing it with his colleagues. I hope your GP is as receptive if you decide to tell him. 
 

Please let us know how you are. 

[DeepBlue]

Hi everyone, @Shep @Faure and Chessie, 
 

Thank you so much for your responses. I’m really grateful and actually feel quite emotional that people care.  I’d also like to apologise for my panicked messages over the last few days - I know you are all helping so many other people and also  dealing with everything in your own lives. So thank you so much. 
 

I’ve devoured loads of the great information on this site over the last few days and one thing I know that’s really important in the messages from us looking for help is detail. So I just wanted to send you a bit more detail about what’s happened to me over the last few months/weeks/days with the dates and dosages. I’ll also add some of this detail to my signature as well. Sorry if this is all a bit long winded - but weirdly writing things down really does help my emotions and symptoms. 
 

In April 2017 I started on 20mg fluoxetine. This was after being on citalopram then sertreline and then back to citalopram for most of the time since March 2010. All due to quite severe anxiety which led to me not sleeping. The only time I thought I really successfully came off the ADs was in 2013 - when I was able to come off citalopram for around 8 months. But my anxiety spiked around month 6 of being off them and I was prescribed them again. 
 

In 2020, at the start of the covid lockdown, my anxiety spiralled again. My doctor tried to push me up to 40mg fluoxetine which I refused - thankfully. My partner was dead against me increasing the dose - saying that it’s a totally natural thing to feel anxious during a global pandemic!! - he was right of course. So this time, instead of more meds, I used a combination of meditation, walking, exercise, therapy to get over this spike. And it worked. 
 

That was the start of me realising I don’t want to be on these anymore. But I knew lockdown wasn’t the right time to come off them. So I waited until life was fairly “normal” again and in fact life was going really good - which brings me to July 2022. 
 

21 July 2022: I requested an appointment with my GP to discuss coming off the medication. I actually didn’t even get a face to face appointment. Instead I got a message back to say he sent a prescription for 10mg fluoxetine capsules to the pharmacy. He advised I take 10mg a day for one month. And then take 10mg alternate days for one month. And then stop. To be fair, he did also say if I experienced any major changes in mood or symptoms I should return to the previous dose. Little did I - or he - know that the fluoxetine withdrawal doesn’t start for weeks after stopping. 
 

21 July 2022 to 19 August 2022: 10 mg every day. Felt good. No problems

 

19 August 2022 to 17 September 2022: 10mg every other day. Again felt good, no problems. 
 

17 September 2022: I stopped taking the tablets 

 

The following first few weeks were fine. But then around the start of October I noticed some minor symptoms appearing. Slight twitching in my muscles, waking up in a panic, a weirdly tingling/crawling my my shoulders and arms and some sleepless nights. I did feel a bit of dizziness and a few minor brain zaps during this time too. I did think it could have been the ADs but I was quite stressed with work at this time so I just put this down to that. 
 

10th October 2022: this was when I feel the withdrawal symptoms started to properly show up. I had nights without any sleep and started to feel very anxious. These symptoms sometimes disappeared during this week and I felt ok some days so I felt I could manage them. 
 

17th October 2022: this is when it all kicked off. Extreme anxiety, insomnia for nights in a row, crying lots. I started to develop a symptom where on the nights I could sleep I’d wake up in terror and sit up bolt right in bed in panic. Something I’d never experienced before. 

19th October 2022: extreme anxiety and insomnia. After reading this site and reading I should reinstate at a low dose, I called the doctor to ask for fluoxetine liquid - they said that’s not available and that I should resume 10mg Fluoxetine capsule every other day and stay at that for several months. I took 10mg that day and I’m not sure it was a placebo effect but after taking it I felt almost immediately calmer and slept well that night. 
Dose: 10mg fluoxetine capsule 

20th October 2022: despite feeling good, I started to panic again about what I read on this site - that 10mg a day could build up over weeks and be far too much for me. So I called the doctor again and demanded the liquid - I quoted the Royal College of Psychiatrists guidance and I think that persuaded them. The pharmacist didn’t have this in stock so I had to wait a day. That evening I had terrible insomnia and did not sleep at all. 
Dose: no meds taken 

21st October 2022: I collected the 20mg/5ml bottle of fluoxetine liquid and based on advice I read on here I started to take 0.25ml which is 1mg using a 1ml oral syringe.  Had to check and recheck my calculations on this!! I hope I’m right?? Another terrible night and only fell asleep at 6am with my partner holding my hand. I was in a very bad way. 

Dose: 1mg fluoxetine liquid 

 

22nd October 2022: Took another 1mg today. Things actually started to feel better in the evening. For the first time that week I was able to go out and be with friends. I sat in a theatre and actually felt relaxed. I thought it’s getting better!! That night I slept well but did wake up a few times in panic. 
Dose: 1mg fluoxetine liquid 
 

23rd October 2022: After a decent sleep last night, today was ok. Still anxious and trembling a bit but it was all quite manageable. But I was already in fear about not sleeping that night and I was right. I didn’t sleep at all. This was a very bad one. 
Dose: 1mg fluoxetine liquid 

 

24th October 2022 (yesterday): This was an awful day. I was constantly crying, experiencing surges of anxiety and what I can only describe as terror. I know I shouldn’t have done this - but I was so desperate that I upped my dose to 2mg today (0.5ml of the liquid). I went for a walk and nearly went into A&E. I was in so much fear. I think I must have cried every hour throughout the whole day. My partner came home from work and I constantly cried to him for hours. But at around 8pm, a subtle calm came over me and I started dozing on the sofa. I went to bed. I know I was exhausted from not sleeping the night before and crying all day but last night was one of the best nights sleep I had in over a week. 
Dose: 2mg fluoxetine liquid 

 

25th October 2022 (today): I woke up just so happy I had slept. You can probably tell sleep is my major symptom - and was also the major symptom of my anxiety when I first started taking the ADs. I also woke up this morning to all your amazing supportive messages and realised I need to stick to the plan of 1mg for a few weeks. I also discussed this with my partner who agreed - interestingly he didn’t know anything about the problems with AD withdrawal until last week when there was an article in The Economist about it!!

Dose: 1mg fluoxetine liquid 

So if you made it to the end of all that - thank you soooo much, I’m so grateful. I just find it really helpful to get it all down as it’s all just a big confused mess in my head. 
 

I guess a few questions I have is:

 

- I know reinstatement is unpredictable but it was four weeks between my last dose on the 17th September and taking that single dose of 10mg on the 19th October. I mean I am having some good and some very bad days since starting it. So am I within the window that this small dose could work to reduce my withdrawal symptoms?

 

- Was that initial good, calming feeling from the 10mg fluoxetine just placebo or is it a good sign?

- Have I ruined my stabilisation at all by going up to 2mg yesterday and back to 1mg today?

 

I’m in a better place today and my plan is to stay on 1mg until the 4th November which will be about 14 days since first taking the liquid at that dose. I also need to remember that on the bad days not to panic and get desperate and start to updose myself with the liquid or worse go to the doctor and get another prescription for the capsules. 
 

As I’ve read loads on this site - it’s all about time and patience, time and patience. I’ve been off work for a week now and on ok days like this I just want to go back to normal life - but I’ve decided I need to give myself a more time to see how I stabilise and to take things easy for now. 
 

Thank you again so much everyone. 
x

 

[Faure]

8 hours ago, DeepBlue said:

know reinstatement is unpredictable but it was four weeks between my last dose on the 17th September and taking that single dose of 10mg on the 19th October. I mean I am having some good and some very bad days since starting it. So am I within the window that this small dose could work to reduce my withdrawal symptoms?

There is about a 12 week window when reinstatement is more likely to work. You are well within that.

 

8 hours ago, DeepBlue said:

also need to remember that on the bad days not to panic and get desperate and start to updose myself with the liquid or worse go to the doctor and get another prescription for the capsules. 

Yes, it is extremely tempting to updose when things are bad. The most important thing is to keep the dose steady. Your body needs stability. You will have good and bad days, this is the pattern of windows and waves that comes with healing.  It looks like you already keep notes and it’s helpful to refer to them on bad days to remind yourself you are not permanently feeling bad; this is what WD will make you believe.  Bad days pass. I find it’s best to stay away from the doctor, they nearly always make things worse.  
 

I shouldn’t think you have ruined your stabilisation. Just pick a dose and keep to it. It sounds like you have a supportive partner which is great ☺️
 

Regarding meditation-do it daily! It’s the best thing I ever did and prepared me for my taper about 18 months before I knew I was even going to do it. It works and is amazing!

 

Hope you have a good night tonight & keep us posted on how you are ☺️

 

Edited October 25, 2022 by Faure

[DeepBlue]

Many thanks @Faure - I’ll definitely keep you posted on how things go. 
 

Today was a good day. From the absolute crying mess I was the yesterday to feeling pretty “normal” today. A little bit of background anxiety and awareness of my heartbeat but all very manageable. I know there’ll lots be ups and downs ahead but just think it’s always good to mark the good ones when they happen. 
 

Thanks again to you all. 

[Altostrata]

Good to hear, @DeepBlue It's only been 4 days, even 1mg fluoxetine will continue to ramp up for a while, you should continue to stabilize. Please let us know how you're doing.

[DeepBlue]

Thanks so much Alto. 
It’s a bad night here again for me. Nearly 4am and no sleep. It seems I’m going in a cycle of no sleep at all one night then completely crash out the next night. Sorry to message - I know there’s nothing to do but wait it out but I feel very alone over night when I can’t sleep. 

[ChessieCat]

Non-drug techniques to cope

 

Sleep problems - that awful withdrawal insomnia

 

Important topics in the Tapering forum and FAQ

 

Edited October 26, 2022 by ChessieCat

[Faure]

4 hours ago, DeepBlue said:

It’s a bad night here again for me. Nearly 4am and no sleep

Sorry to hear that. I had a night last week where I was awake till 4, I finally slept for a few hours after that. I know just how distressing and lonely it is. Let’s hope you start to stabilise soon and get some good quality rest. 
 

I read a really useful thing here which is to pretend you’re asleep.  It helps me when I am having trouble getting to sleep but is of no use on nights like we’ve both had recently. Another thing to remember is even if you can’t sleep just lying in bed and trying to relax is restful for your body. Anyway, there are links above to non drug ways to cope so I’ll be quiet now! 
 

Hope your day isn’t too bad ☺️

[DeepBlue]

Hey again @Shep @Faure @Altostrata I’m very low today. Absolutely no sleep at all last night. With no sleep my whole body feels awful and literally buzzing full of anxiety.  When I sleep, I hardly have any symptoms at all the next day. I had a call with my doctor, and he was very nice and understanding. He does agree it sounds like withdrawal but thinks I should try taking 5mg fluoxetine per day. What do you think? Do you think this is something I could do once I’ve been at 1mg for a week - which will be this Friday. My worry is that if I take too long reinstating at the correct dose will I miss my “window”? 
 

He also thinks a lot of what I’m feeling is sleep deprivation. So he’s prescribed some zolpidem for a few days. I’m not sure how I feel about these but at least I have them for emergencies. 

Thank you again 

[Shep]

7 hours ago, DeepBlue said:

So he’s prescribed some zolpidem for a few days. I’m not sure how I feel about these but at least I have them for emergencies. 

 

Definitely for emergencies. Dependence can start in just 2 - 4 weeks with Zolpidem. It's an easy trap to fall into. Glad you're being very cautious with them. 

 

7 hours ago, DeepBlue said:

He does agree it sounds like withdrawal but thinks I should try taking 5mg fluoxetine per day. What do you think?

 

As ChessieCat notes:

 

On 10/24/2022 at 11:05 PM, ChessieCat said:

Please note that Prozac has a very long half life and it can take 2-3 weeks for a dose to build up to full level.

 

 

I re-read your post here where you give very specific details for the past days.

 

Do you think you may be having more insomnia due to catastrophic thinking? If so, you may want to spend the next couple of evenings with a soothing wind-down routine with guiding meditations, a warm bath, calming music, gentle stretching or yoga, etc. and see if that helps. 

 

If you re-read that post, you'll see you had some good nights in the past few days, along with the insomnia nights. This type of anticipatory fear may be causing problems: 

 

On 10/25/2022 at 6:45 AM, DeepBlue said:

But I was already in fear about not sleeping that night and I was right. I didn’t sleep at all.

 

When you're dealing with anticipatory fears, it's a secondary fear -  the "what if" fears. And that's very common during withdrawal. 

 

This is a great article on "second fear":

 

The Anxiety Monster Feeds on Second Fear

 

This is a great video on this subject with Eckhart Tolle: 

 

How to Reduce Anxiety and Fear | Eckhart Tolle 20 Minute Compilation video 

 

I would try listening to these types of videos and set up a wind-down routine in the evening and then if that doesn't help over the next two nights, reassess what you want to do regarding the fluoxetine dose. 

[Faure]

How are you getting on?

[Altostrata]

Hello, @DeepBlue How are you doing?

 

What time of day do you take fluoxetine? How do you feel before you take it, compared to how you feel later, after you take it?