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Ladybuggy: Introduction and looking for advice - fluoxetine


Ladybuggy

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Hi there,

I've been a lurker for a few months and have decided to write a post and hopefully gain some advice.

 

As a child/teen I was diagnosed with GAD and later OCD (my home life was incredibly stressful). My OCD had become debilitating before I was taken to the doctors at which point I was prescribed Oxactin and therapy. After a few years I was able to stop the medication.

 

I was prescribed Fluoxetine 20mg and CBT during my pregnancy 9 years ago (2013) due to re-developing OCD and panic attacks. The OCD and panic attacks resolved once I'd given birth however I was advised to stay on the fluoxetine.

 

This year I decided to taper off as I'd been feeling fine for a number of years and I was in a good place in my life.


Spoke to pharmacy team at my doctors in February 2022 about stopping Fluoxetine. Was told to alternate days for two or so weeks and then begin skipping more days.

 
The alternating days was fine, I noticed a *slight* increase in anxiety but that was all. When I then skipped two days I was hit by terrible symptoms five days after begining the new dosage. I struggled for around four weeks and was told that I either go back onto 20mg daily or hold out. I questioned whether the skipping days and then taking a 20mg tablet was causing my body to yoyo, but was told that fluoxetine has a long half life, so that's not the case. I eventually felt better after a number of weeks and was then told to add another day of skipping medication. Apparently, my body had gone through the worst part and I shouldn't experience any more withdrawal symptoms when further lowering the dose.

 

This was a disaster. A week after beginning to skip three days at a time, I again had terrible symptoms (I was unable to go to work). I've never felt so many different symptoms at once, my body felt like it was falling apart.
I called my doctors and spoke to the nurse practitioner. I explained the previous few months and he was horrified. He said he'd have never recommended to skip days as a way of tapering. He prescribed me 5mg daily Fluoxetine. I called the pharmacy team at my doctors later in the day to be told that there are no 10mg tablets/capsules available anywhere (I called multiple places). I explained how terrible I was feeling and was recommended to actually take 10mg daily for a few days to get myself feeling better, then drop to 5mg. They made up a liquid.

 

I've now been on 10mg daily for over six weeks and am still having a number of withdrawal symptoms. After the initial two weeks, I felt some improvement however I then had my period which seemed to exasperate my symptoms again. I have improved in comparison to when I was skipping doses however I still have a number of symptoms that I struggle with (tachycardia when waking and after eating, severe morning anxiety, a dodgy stomach, low appetite, exhausted). I'm not sure at what point the 10mg has had long enough in my body to take effect, has it had enough time at this point? Is this as much improvement as I'm going to see? I'm looking to now give my body a break and stay on a dose for a number of months but want to feel comfortable during this time. 

Thank you for reading!

2004-Diagnosed with OCD and GAD. Had therapy and prescribed Oxactin (can't remember the dose). Took for multiple (teenage) years.

2009-2013- no medication but felt okay.

2013- OCD came back along with panic attacks during the first few weeks of pregnancy. Reluctantly put on 20mg Fluoxetine alongside CBT.

2022 Jan- After taking 20mg Fluoxetine for 9 years, decided to taper off as I was feeling great. 

2022 Feb- After talking to my pharmacy team I was told to alternate days of taking 20mg Fluoxetine. After the first few days noticed a *slight* increase in anxiety.

2022 Feb-March- Advised to then skip two days at a time. After five days started experiencing withdrawal symptoms: derealization, anxiety/panic, diarrhea, teary. Spoke to doctor who said that I either hold out or go back on the original dose. I enquired as to whether the skipping doses was causing issues, but was told no. Told to add another day of skipping a dose once I felt better.

2022 April- After finally feeling improvement after struggling added another day of skipping the dose (as advised). Was now taking 20mg Fluoxetine every fourth day. Again, after five days I was hit with horrible withdrawal symptoms. Insomnia, night sweats, tremors, tachycardia, extreme anxiety and panic, sadness, vomiting, diarrhoea, no appetite. Tried to again wait it out but ended up calling the doctor as I was missing work due to being so ill. Was told to have never skipped doses as body was now in shock. Prescribed 10mg tablet daily Fluoxetine to cut in half (5mg per day)

2022 May-Now- pharmacy couldn't fulfill prescription. After talking to me advised to be taking 10mg daily rather than 5mg until improved mood, made up liquid as still no tablets.

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  • ChessieCat changed the title to Ladybuggy: Introduction and looking for advice - fluoxetine
  • Administrator

Welcome. @Ladybuggy

 

How has your symptom pattern changed in the last 2 weeks?

 

To help us out, follow these instructions Please summarize your drug and withdrawal history in your signature You may need to use a computer to do this.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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  • 2 weeks later...

Thank you Alto!

For the previous two weeks I've had what I'd consider a window. I was able to distract and ignore anxious thoughts, was sleeping better and felt more like my old self. I did still find that the mornings were the toughest part of my day (racing anxiety, high heart rate, diarrhoea) but by afternoon I felt what I'd consider normal. This gave me so much hope that the daily fluoxetine was finally stabilising and that I was over the worst of it.

 

As of this weekend I again got my period and with that I've now been struggling again. I've vomited in the morning due to what I think is a constant feeling of panic (my body feels jittery, like I have constant adrenaline and shortness of breath). I've had diarrhoea everyday (more severe), migraines and headaches (I've previously been diagnosed with migraine linked to my period), racing thoughts are harder to deal with and my tachycardia is more frequent (it can reach over 130 from me just laying down and panicking). I'm incredibly aware constantly about what I'm feeling and thinking, I feel as though I'm stuck in my head instead of being in the present (continually analysing), my inner monologue is on overdrive. My mind is so busy, it's exhausting. I'm constantly fearing anxiety and live in dread of it, being on watch for it. Even when I'm more relaxed I'm mentally acknowledging that fact, which then triggers anxiety as I'm thinking about how I don't want to start ruining it with anxious/intrusive thoughts (which causes them!).

 

-side note, when I'm on my pc I'll have a go at adding my signature!

 

2004-Diagnosed with OCD and GAD. Had therapy and prescribed Oxactin (can't remember the dose). Took for multiple (teenage) years.

2009-2013- no medication but felt okay.

2013- OCD came back along with panic attacks during the first few weeks of pregnancy. Reluctantly put on 20mg Fluoxetine alongside CBT.

2022 Jan- After taking 20mg Fluoxetine for 9 years, decided to taper off as I was feeling great. 

2022 Feb- After talking to my pharmacy team I was told to alternate days of taking 20mg Fluoxetine. After the first few days noticed a *slight* increase in anxiety.

2022 Feb-March- Advised to then skip two days at a time. After five days started experiencing withdrawal symptoms: derealization, anxiety/panic, diarrhea, teary. Spoke to doctor who said that I either hold out or go back on the original dose. I enquired as to whether the skipping doses was causing issues, but was told no. Told to add another day of skipping a dose once I felt better.

2022 April- After finally feeling improvement after struggling added another day of skipping the dose (as advised). Was now taking 20mg Fluoxetine every fourth day. Again, after five days I was hit with horrible withdrawal symptoms. Insomnia, night sweats, tremors, tachycardia, extreme anxiety and panic, sadness, vomiting, diarrhoea, no appetite. Tried to again wait it out but ended up calling the doctor as I was missing work due to being so ill. Was told to have never skipped doses as body was now in shock. Prescribed 10mg tablet daily Fluoxetine to cut in half (5mg per day)

2022 May-Now- pharmacy couldn't fulfill prescription. After talking to me advised to be taking 10mg daily rather than 5mg until improved mood, made up liquid as still no tablets.

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Also, not sure if relevant but:

 

I started a new bottle of liquid Fluoxetine this week and it's made by a different manufacturer and is a different consistency (still the same dosage).

 

I've also gone back to work the past two and a half weeks after being signed off for 6 weeks. 

 

I've got a doctor's appointment later today and I have a feeling he may want to change my dose of fluoxetine (especially at the moment as I'm struggling). I'm terrified of feeling any worse and am scared of a kindling reaction.  I don't want to go backwards (and undo all the progress) but I also don't want to feel how I'm currently feeling (it's morning here so I'm feeling terrible). I really miss feeling like my old self.

2004-Diagnosed with OCD and GAD. Had therapy and prescribed Oxactin (can't remember the dose). Took for multiple (teenage) years.

2009-2013- no medication but felt okay.

2013- OCD came back along with panic attacks during the first few weeks of pregnancy. Reluctantly put on 20mg Fluoxetine alongside CBT.

2022 Jan- After taking 20mg Fluoxetine for 9 years, decided to taper off as I was feeling great. 

2022 Feb- After talking to my pharmacy team I was told to alternate days of taking 20mg Fluoxetine. After the first few days noticed a *slight* increase in anxiety.

2022 Feb-March- Advised to then skip two days at a time. After five days started experiencing withdrawal symptoms: derealization, anxiety/panic, diarrhea, teary. Spoke to doctor who said that I either hold out or go back on the original dose. I enquired as to whether the skipping doses was causing issues, but was told no. Told to add another day of skipping a dose once I felt better.

2022 April- After finally feeling improvement after struggling added another day of skipping the dose (as advised). Was now taking 20mg Fluoxetine every fourth day. Again, after five days I was hit with horrible withdrawal symptoms. Insomnia, night sweats, tremors, tachycardia, extreme anxiety and panic, sadness, vomiting, diarrhoea, no appetite. Tried to again wait it out but ended up calling the doctor as I was missing work due to being so ill. Was told to have never skipped doses as body was now in shock. Prescribed 10mg tablet daily Fluoxetine to cut in half (5mg per day)

2022 May-Now- pharmacy couldn't fulfill prescription. After talking to me advised to be taking 10mg daily rather than 5mg until improved mood, made up liquid as still no tablets.

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Update- Had an appointment with a very understanding doctor. He said that he feels I lowered my dose far too quickly and that he doesn't prescribe Fluoxetine as other patients fall into the same trap (not feeling the full effect of a lower dose until quite a while has passed by which point many patients will have lowered again, causing issues with withdrawal). He's upped my dose to 15mg daily (from 10mg) alongside support for my anxiety and also recommended meditation as something to practice. He said that he feels I will lead a medication free life, that I've done really well and that I wasn't given the right tools to aid coming off initially. 

2004-Diagnosed with OCD and GAD. Had therapy and prescribed Oxactin (can't remember the dose). Took for multiple (teenage) years.

2009-2013- no medication but felt okay.

2013- OCD came back along with panic attacks during the first few weeks of pregnancy. Reluctantly put on 20mg Fluoxetine alongside CBT.

2022 Jan- After taking 20mg Fluoxetine for 9 years, decided to taper off as I was feeling great. 

2022 Feb- After talking to my pharmacy team I was told to alternate days of taking 20mg Fluoxetine. After the first few days noticed a *slight* increase in anxiety.

2022 Feb-March- Advised to then skip two days at a time. After five days started experiencing withdrawal symptoms: derealization, anxiety/panic, diarrhea, teary. Spoke to doctor who said that I either hold out or go back on the original dose. I enquired as to whether the skipping doses was causing issues, but was told no. Told to add another day of skipping a dose once I felt better.

2022 April- After finally feeling improvement after struggling added another day of skipping the dose (as advised). Was now taking 20mg Fluoxetine every fourth day. Again, after five days I was hit with horrible withdrawal symptoms. Insomnia, night sweats, tremors, tachycardia, extreme anxiety and panic, sadness, vomiting, diarrhoea, no appetite. Tried to again wait it out but ended up calling the doctor as I was missing work due to being so ill. Was told to have never skipped doses as body was now in shock. Prescribed 10mg tablet daily Fluoxetine to cut in half (5mg per day)

2022 May-Now- pharmacy couldn't fulfill prescription. After talking to me advised to be taking 10mg daily rather than 5mg until improved mood, made up liquid as still no tablets.

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  • Administrator

Quite often, women will feel intensified withdrawal-type symptoms at times in their cycle. This does not call for an updose.

 

16 hours ago, Ladybuggy said:

I started a new bottle of liquid Fluoxetine this week and it's made by a different manufacturer and is a different consistency (still the same dosage).

 

There sometimes are variations in formula among manufacturers. The new liquid might have been stronger. You might have been fine with reducing the dosage slightly, perhaps to 9.75mg, instead of increasing to 15mg.

 

How do you feel on the higher dosage?

 

5 hours ago, Ladybuggy said:

He said that he feels I lowered my dose far too quickly and that he doesn't prescribe Fluoxetine as other patients fall into the same trap (not feeling the full effect of a lower dose until quite a while has passed by which point many patients will have lowered again, causing issues with withdrawal).

 

When was the last time your reduced your dose?

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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Thanks for the reply Alto!

How do I feel since taking 10mg daily (past 8 weeks)? Overall better but experiencing windows and waves. I didn't notice much improvement for a number of weeks, only recently. Initially I had this odd constant agitation in my body, burning feelings in the soles of my feet, pins and needles (which lasted a few weeks earlier on but has now passed). Mood can shift quickly with mornings being rough still especially during period week.

 

The last time I reduced was back in April. It was when I was advised to skip three days and then take a 20mg Fluoxetine tablet. That lead to absolute disaster and triggered the worst withdrawal symptoms (I was signed off from work).

2004-Diagnosed with OCD and GAD. Had therapy and prescribed Oxactin (can't remember the dose). Took for multiple (teenage) years.

2009-2013- no medication but felt okay.

2013- OCD came back along with panic attacks during the first few weeks of pregnancy. Reluctantly put on 20mg Fluoxetine alongside CBT.

2022 Jan- After taking 20mg Fluoxetine for 9 years, decided to taper off as I was feeling great. 

2022 Feb- After talking to my pharmacy team I was told to alternate days of taking 20mg Fluoxetine. After the first few days noticed a *slight* increase in anxiety.

2022 Feb-March- Advised to then skip two days at a time. After five days started experiencing withdrawal symptoms: derealization, anxiety/panic, diarrhea, teary. Spoke to doctor who said that I either hold out or go back on the original dose. I enquired as to whether the skipping doses was causing issues, but was told no. Told to add another day of skipping a dose once I felt better.

2022 April- After finally feeling improvement after struggling added another day of skipping the dose (as advised). Was now taking 20mg Fluoxetine every fourth day. Again, after five days I was hit with horrible withdrawal symptoms. Insomnia, night sweats, tremors, tachycardia, extreme anxiety and panic, sadness, vomiting, diarrhoea, no appetite. Tried to again wait it out but ended up calling the doctor as I was missing work due to being so ill. Was told to have never skipped doses as body was now in shock. Prescribed 10mg tablet daily Fluoxetine to cut in half (5mg per day)

2022 May-Now- pharmacy couldn't fulfill prescription. After talking to me advised to be taking 10mg daily rather than 5mg until improved mood, made up liquid as still no tablets.

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  • Administrator
16 hours ago, Ladybuggy said:

The last time I reduced was back in April. It was when I was advised to skip three days and then take a 20mg Fluoxetine tablet. That lead to absolute disaster and triggered the worst withdrawal symptoms (I was signed off from work).

 

 

This was very recent and may have sensitized you to even very gradual reductions.

 

 

16 hours ago, Ladybuggy said:

How do I feel since taking 10mg daily (past 8 weeks)? Overall better but experiencing windows and waves. I didn't notice much improvement for a number of weeks, only recently.

 

You did not jump to 15mg? Sometimes stabilizing takes a while. You may wish to let your nervous system thoroughly settle down before making another small decrease.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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