Crepe: fluoxetine withdrawal

[Crepe]

Just discovered this forum after researching potential fluoxetine withdrawal symptoms.

Spent all last year tapering off after being on the drug around 5 years. Now haven't taken any for 9 months.

Struggling with debilitating nausea, doctors can't find anything wrong with me, conclude it's due to anxiety. Still getting brain zaps.

Maybe I'm suffering a prolonged withdrawal syndrome? Been prescribed anti emetics which don't resolve the nausea. Precribed gabapentin now to treat nausea & anxiety.

Anyone out there having long term problems after fluoxetine withdrawal?

I don't cope with the nausea now it seems to never end & I've run out of reserves to manage it.

Waiting to talk to psych about reintroducing a little fluoxetine.

Thanks for reading.

[Onmyway]

Hi @Crepe

this sounds like post acute withdrawal especially because of the brain zaps. How did you taper? 

A reinstatement this far out may not work but if you do reinstate we recommend a very low dose. Have a look at this thread. These drugs are very potent at the low doses. Your doctor will try to reinstate you on a high/regular dose but it is better to start with something like 1mg and see how you react to it. People in withdrawal can sometimes be too sensitive to any new drugs. 

 

About reinstating and stabilizing to reduce withdrawal symptoms - Symptoms and self-care - Surviving Antidepressants

Why taper by 10% of my dosage? - Tapering - Surviving Antidepressants

Why taper? SERT transporter occupancy studies show importance of gradual change in plasma concentration - Tapering - Surviving Antidepressants

 

We ask all our members to fill in their drug signature so we are better able to assist them. Once you have done that we can help you better. 

How to List Drug History in Signature - Introductions and updates - Surviving Antidepressants

 

Nausea is a brutal symptom - I had it non-stop for over 4-5 months but it does go away. For me distraction helped significantly (board games, crafts as they take your attention away in a focused way). You can find things that help you not think about it and you enjoy ideally. 

 

Hope you feel better soon, 

OMW

 

[Crepe]

Hi @Onmyway, thanks for your response and the info. I really value the chance to hear from and be heard by people who recognise & even share my experience.

 

From January to May last year I reduced my fluoxetine from 60mg to 40mg to 20mg with no problems. From May I tried 20mg every second day. I spent June & July with nausea, vomting & diarrhoea. Had 2 hospitalisations for rehydration  & investigations (ct scan & ultrasound & blood tests identifying no causes). Back to 20mg daily with another attempt at reduction around October. Mid November I was splitting capsules in half to give myself approx 10mg every second day before ceasing altogether by the end of December. This taper was well & truly over the top as far as doctors advice.

 

The brain zaps were pretty bad but I expected & accepted them. They're the kind of thing that scream "I'm a withdrawal symptom!". I feel a little foolish for not connecting the nausea & other symptoms with withdrawal. These are more subtle, coming about a bit later & inconsistently. My restless legs started in April. Night sweats come & go seemingly at random. I'd also had shocking headaches (not anymore!), again seemingly random.

 

Looking back over the last decade I see these same symptoms (which in hindsight correlate with psych drug cessation, always tapered more gradually than directed), for which I've sought medical help. Gastroenterologists, colonoscopies, gastroscopies, ct scans, ultrasounds, countless blood tests, all to no avail. In 2016 I sought advice about night sweats along with the intestinal issues: perhaps it's perimenopause?!  I had come off fluoxetine the previous year.

 

Anyway, last week I figured I still have some capsules left (20mg seems to be the smallest dose available here in Australia unless you're a pet & the vet writes a script for a compounding pharmacy - people give this to their dogs????). So I've split a capsule, pretty hard to get an accurate dose but aiming for 1mg daily. Day 1: brain zaps gone. Holy crap. Now Day 6: nausea may have eased just a little, can't expect a miracle.

 

I have learnt so much in this last week. I'm overwhelmed & still in shock as I research my own medical & psychiatric drug history, along with online research.

 

I aim to get a clearer picture of all this before my next psychiatrist appointment on 1 September. I will be asking the doctor for a script for 1mg fluoxetine through a compounding chemist. Woof woof.

 

I was hesitant to put down my whole psych drug history in my signature but I will get to that. It's kinda the point isn't it? What a shocking amount of chemicals experts have put into my body over nearly 30 years from age 16.

 

Thank you for reading, I'd love to continue this conversation as I learn more. I hope that I may be able to help others out there too.

 

Crepe

[Onmyway]

Hi @Crepe, 

it is quite shocking when you learn of this in the beginning. I considered myself quite educated in terms of drugs and pharma only to discover how little I knew once withdrawal hit.  This one might shock you even further. 

https://psycnet.apa.org/fulltext/2014-33307-003.html

 

It is not unusual for the initial lowering to be uneventful - I didn't feel anything until I went from 5mg to 0mg of citalopram. That is because the drug's impact on the body increases very steeply at the low doses and evens out at the higher doses so when you lower from 40 to 30, you are lowering receptor occupancy by let's say 5% but when you go from 5 to 0, by 50% (look up the articles on SERT occupancy above). 

 

The other thing about fluoxetine is that it stays in your body for over a month so the effects are not felt immediately. Doctors think that it is a drug that does not have withdrawal effects because the effects are felt late and they attribute that to 'original condition returning'. 

 

This thread has tips for tapering fluoxetine - https://www.survivingantidepressants.org/topic/759-tips-for-tapering-off-prozac-fluoxetine/

You may be able to find it as a liquid but there are other techniques by making your own liquid or weighing your tablets with a sensitive scale. You will find all the info there. Once you reinstate though (full effect won't be felt for a week or more with fluoxetine), you should stabilize for months on that dose before lowering again. You may try increasing your dose slightly to 1.5mg if the nausea has not relented in another week or so. Once stabilized and with minimal symptoms you can lower by no more than 10% of your previous dose every four weeks. I personally can't go over 5% a month. You will find what you can tolerate yourself. 

 

For me it took about 4-5 months to get to stability after reinstatement though the worst symptoms got better much sooner than that - esp akathisia but the nausea stayed for close to 5 months. We are all different but want to give you an idea of timelines. But do know that it does get better and you will get through this even when it seems like you won't. 

 

One thing you should never do is skip doses. It's a surefire way to create withdrawal issues or make them much worse. 

https://www.survivingantidepressants.org/topic/22958-never-skip-doses-to-taper/

 

I am really glad you found your way to us and hope we can get you to health and stability quickly! 
 

OMW

[Crepe]

Thanks @Onmyway you're wonderful.

[Dan17S]

Thanks for sharing your story @Crepe. It's interesting to hear your experiences as I'm reducing fluoxetine. And to read @Onmyway's replies. I'm learning a lot every day about this process and feeling more and more armed for what comes next.

[Crepe]

Hi @Dan17S, thanks so much for your reply, I've had a look at your thread & will say Hi there when I get the chance. By your signature it looks like you're doing the sensible thing with a gradual taper, oooh how I wish I'd done the same...

 

I've spoken to my pharmacist who confirmed that the lowest dose of fluoxetine available here in Australia is 20mg. He said it can be given in tablet form which "allows you to halve or quarter the dose".

 

I'm nervous about seeing my psychiatrist next week. No idea how he'll respond to my request for a script for 1mg fluoxetine via a compounding pharmacy. I'm trying to gather "legitimate" info from published journals & "clinical guidelines" etc. including from this site, thanks again @Onmyway These all state that a gradual taper is the way to go but honestly, how many doctors out there are writing scripts for compounding? Why is it up to us as patients to inform the experts on their own clinical guidelines? Grrrr.

 

In July my GP was on leave and I was desperate for some help with my nausea so I saw a doctor I hadn't met before. He'd obviously seen in my notes that I have issues with anxiety and he wanted to be honest and up front about his lack of knowledge in this field of medicine. He told me he'd spent many years working in Africa where there was no "anxiety" as a medical condition, "people there were just surviving". Well said, Doctor. If only someone had helped me to "survive" when I was 16 instead of doping me up with chemicals in a ward where I was exposed to all kinds of further trauma (oh god don't get me started). It's important not to dwell on the past but it's so important to recognise it and make changes so that history doesn't repeat itself.

 

I keep writing then deleting stuff. I want to try to curb my perfectionism (writing 6000 drafts before posting) and share my story, bit by bit. There's so much that needs to be said and I'm so glad to have found this community where people say it! Thank you. Thank you. Thank you.

 

On the nausea front I only spent a couple of hours moaning & groaning yesterday, so that's good. Ha.

 

Going to end this post before my brain explodes. Thanks to all, sending out love.

 

C.

 

  

 

 

[Onmyway]

Hi @Crepe

good news that the nausea is abating! 

A couple of things: it might be easier to make your own fluoxetine liquid than bother with a compounding pharmacy. You'd dissolve the tablet in water and then take the equivalent of 1mg. Compounding is definitely an option but you need to guess ahead of time how much you need- i.e. how many days at 1mg, how many at 0.9mg etc., you would not control the generic from which the tablets are made every time and there could be tiny variations to which you could be sensitive. It would also save you from arguing with the doctor and worrying about it. 

 

I would encourage you strongly to not take quetiapine and diazepam if you are not in a critical situation. Insomnia is unpleasant but a part of life with WD that you can live with. I struggled against it in the beginning and tried benzos and made myself sicker. When I accepted that I am ok with the amount of sleep that I get I started actually sleeping better. Most people here find melatonin is ok and doesn't come with the issues of diazepam and quetiapine. Every time you are taking a psychoactive substance (even supplements, some vitamins, alcohol, pots, other drugs etc.) you are hurting your brain further. 

 

You might enjoy the writings of Sami Timimi on the overdiagnosis of mental illness. 

You don't have to be perfect here - we are all different and very imperfect here. 

 

So glad you have joined our lovely community. 

OMW

 

[Crepe]

Thanks for your wisdom @Onmyway about the compounding etc. I hadn't taken into account the future minuscule reductions and the filler content.

 

As far as the quetiapine & diazepam go, I wholeheartedly agree. I've always kept the diazepam for crisis only.  My doctors have encouraged me to increase the quetiapine, and the last few months I have used it more often but at a smaller dose. The insomnia's difficult but I'll take that over nausea any day. This morning I was still lying awake after the birds had called their morning song. Maybe it was their lullaby to me coz I drifted off for a few hours.

 

Indeed we are all perfectly imperfect aren't we?

 

Thanks again for the support, wishing you well,

 

C.

[Dan17S]

6 minutes ago, Crepe said:

Thanks for your wisdom @Onmyway about the compounding etc. I hadn't taken into account the future minuscule reductions and the filler content.

 

As far as the quetiapine & diazepam go, I wholeheartedly agree. I've always kept the diazepam for crisis only.  My doctors have encouraged me to increase the quetiapine, and the last few months I have used it more often but at a smaller dose. The insomnia's difficult but I'll take that over nausea any day. This morning I was still lying awake after the birds had called their morning song. Maybe it was their lullaby to me coz I drifted off for a few hours.

 

Indeed we are all perfectly imperfect aren't we?

 

Thanks again for the support, wishing you well,

 

C.

I love that! “Perfectly imperfect” 🥰. X

[Crepe]

I was gonna print it on t-shirts.

[Crepe]

I feel sick. I'm sick of feeling sick. The nausea and the ability to cope with it both fluctuate. Really struggling with the coping side today.

 

I'm trying to take advantage of this place where I can say these things. I feel I'll become a burden to those around me so I'm careful about how much I open up to my people.

 

I'm so strong, I always get through and I know I'll get through this. But right now I'm so tired of being strong and getting through things. So let me just say again, I feel sick. Woe is me.

 

How about a cup of chai tea and some crap tv huh?

 

C.

[Dan17S]

I don't know if it helps but sometimes when I feel really anxious I just totally give up any kind of struggle. Release any holding or tension in the body. Totally surrender to what I'm feeling and let it be there as long as it wants to be. That mental process of thinking about total surrender can help open us up to what is there and take some of the edge off. Not sure if it will work for you but thought I'd share! x

[Crepe]

Thanks @Dan17S, I seem to be having a problem with the totality of the surrender but yes, it's helpful.

[Dan17S]

I don't know if you've heard of Pema Chodron, she's an amazing American Buddhist nun. Her book "When things fall apart" really helped me totally surrender during the emotional turbulence I had in my personal life a while ago. If you haven't read it you might like it:

 

https://www.amazon.co.uk/When-Things-Fall-Apart-Difficult-ebook/dp/B00B0PFN9C/ref=sr_1_2?crid=2WJEAHQOCJ9YZ&keywords=pema+chodron&qid=1661850853&sprefix=pema+cho%2Caps%2C102&sr=8-2

 

There are some podcast episodes looking at it:

 

https://podcasts.apple.com/us/podcast/holding-it-together-when-things-fall-apart-pema-chodron/id1087147821?i=1000475649043

 

All about welcoming the unwelcome.

[Crepe]

@Dan17S I'll check them out, I know of Pema Chodron but haven't read/heard these. Thanks so much.

[Crepe]

As I write this I have tears streaming down my face. It's good to cry if I can. I'm crying because I've been despairing. If this is what life is then I don't want to live. But then I try to find hope. I look to Baylissa Frederick's site. She gives me a little hope. Stories of people who have come out the other side of withdrawal give me a little hope. But mostly, I feel hopeless.

 

I spent all yesterday in bed. Today too.

 

It's nearly 4 months of nausea. I must remember that I've had little windows and they will come again.

 

I have coped with the other symptoms, and some of those have now gone. I'm tough, always have been. I can put up with an awful lot. But the nausea....it's...

 

Over the last 10 years I've been a mystery to my doctors. Headaches, sweats, chills, tremors, pain, nausea, diarrhoea blah blah blah. CT scans, ultrasounds, colonoscopy/gastroscopies, blood tests.  Well now I see the correlation of my symptoms with changes of psych drugs. So many drugs over the years. "If this one doesn't work we'll try another". These psychiatrists gave me hope that the drugs would help me. I didn't want the drugs. They never helped. But I clung to that hope and I took the drugs.

 

My previous bouts of illness have lasted weeks or a month, maybe two. They've set in weeks or months after a drug change, making it difficult to see the link. I see it now.

 

Baylissa used the word "horrific". She's right.