Hello again! Advice and support needed

Hi
I posted last time a year or so ago on here and found the timetable thread to be a lifesaver!
So I stayed well for a year, going back to work on a covid ward, coping with homeschooling and lockdown and I genuinely thought I would never be in this place again.
2 weeks ago I woke with anxiety and here I am still struggling 2 weeks later.
So I was taking 40mg fluoxetine and suffered sons extreme side effects at the beginning. I had no intention of stopping taking it.
But as per my normal pattern, I felt so well that I just kept forgetting to take it and thought well OK that's a way to wean off or reduce the dose. I'm so annoyed with myself.
Some weeks I maybe only took it on 2 days.
Then bang, anxiety starts and depression kicks in.
I spoke to the GP and she said to go back to 40mg straight away so I did.
Now although I'm nowhere near as ill as last year I am experiencing the extreme mood swings, the anxiety first thing on waking and then the tearful low mood until it slightly lifts in the evening.
I just wandered if anyone can offer some advice, some light at the end of the tunnel.
Is it likely that the fluoxetine will need to settle again considering I hadn't fully stopped taking it?
I'm really struggling to know I will get better.

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Originally Posted by KayMK

So I was taking 40mg fluoxetine and suffered sons extreme side effects at the beginning. I had no intention of stopping taking it.
But as per my normal pattern, I felt so well that I just kept forgetting to take it and thought well OK that's a way to wean off or reduce the dose. I'm so annoyed with myself.
Some weeks I maybe only took it on 2 days.

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While fluoxetine can be a little more forgiving of missed doses than other SSRIs these meds don't work if they are not taken. Even worse missing doses frequently will increase the risk of them not working at all at any dose. These are meds than must be taken daily, every day, with only very occasional fails. Sorry, but there is no way around this. :sad: There is a slow-release once a week version available if that helps, but it still needs to be taken every week, week after week.

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Is it likely that the fluoxetine will need to settle again considering I hadn't fully stopped taking it?
I'm really struggling to know I will get better.

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Antidepressants don't directly ease anxiety (or depression) in the way say aspirin eases a headache. They work by stimulating the growth of new brain cells (neurogenesis) and it is these new cells and the connections they forge which provide the therapeutic response. Your infrequent dosing seems to have stopped this process and it may take some weeks to restore it. It takes about 7 weeks for new cells to grow and mature, though they may begin producing some positive responses a week or two earlier. How .long have you been back on the 40mg dose?

Thanks for your reply. Hope you are well.
Its been 2 weeks since I started taking them properly every day.
I'm suffering with such swings in mood. Very low and tearful and then by the evening it's lifted slightly.
GP has mentioned changing them to another drug but I'm not keen as these have always worked in the past.
I'm so furious with myself for not learning last time as it took a good 8 weeks to be feeling better.

Don't be furious with yourself - these things happen, and it happened. It will all work out... Be kind to yourself. Maybe some part of you didn't really want them? But that part now knows it needs them.

Thankyou. Lesson learned though, I will not be coming off them again.
You live and learn I suppose

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Originally Posted by KayMK

Thanks for your reply. Hope you are well.

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I am, thanks for asking. :)

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Its been 2 weeks since I started taking them properly every day.
I'm suffering with such swings in mood. Very low and tearful and then by the evening it's lifted slightly.

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These are fairly typical responses to what you've been through. The problem with fluoxetine is that it has a very long half-life, up to 6 days for fluoxetine itself, plus up to 16 days for its active metabolite which actually does most of the work so it can take a while for it to become active. It takes up to a month just for plasma levels to stabilise to a steady state. But that half-life also has advantages. If you'd missed doses with the other SSRIs which all have much shorter half-lives you would soon have been deep into withdrawal.

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GP has mentioned changing them to another drug but I'm not keen as these have always worked in the past.

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Given that fluoxetine was working well before you began skipping doses I think that might be jumping the gun. I'd wait to see if you respond, but that is going to take a while, unfortunately. :sad:

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I'm so furious with myself for not learning last time as it took a good 8 weeks to be feeling better.

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We are contrary creatures. It is what makes us human. Never repeating mistakes might make our lives easier, but kicking over the traces rebellion and just sheer crazy bloodymindedness can be soooo good for the 'soul'. I suspect we'd lose more than we gained if we wised up. Who wants to be a timid robot! :ohmy: But don't go tempting fate a third time, okay? :yellowcard: My navy friends tell me big waves come in threes and it's the last one that usually sinks you! :scared15:

Well I'm on 18 days of taking 40mg every day properly.
Pretty much following the same path as last time, waking at 3am with anxiety and not managing to calm it much until the afternoon, by which point I feel gradually more normal until bedtime and I'm feeling normal. I remember typing last year that I go to bed one person and wake another.
Very tearful still and mood is low. I must be driving my family round the bend asking them if I'm ever going to feel better.
The difference I have noticed this time is that the anxiety is not as desperate, I'm not sure if that's because I hadn't stopped the medication completely.
It amazes me how every time I'm ill I think I'm gonna be able to conquer this beast quicker and it always takes longer.

My thinking seems a bit clearer the last few days, I'm able to reason with myself and talk myself down quicker. Hope this continues.
Then I get moments when Im genuinely terrified that the meds won't work and I will never get back to myself.
It's a bumpy road!

There are things I've learnt though that I think have helped this time, clearing my schedule, no plans and no pressure helps and not feeling guilty about that. I've been doing some breathing and meditation techniques too.
As much as possible ending the day thinking positively.

Kerri x

24 days in!! Wondering how long before I stop counting the days!
Still feeling brighter and calmer by the evening. Even managed to read my book a few nights.
But oh my god the mornings!
The despair and crying is starting to get boring now! It's so frustrating because I wasn't even depressed before and now it seems to be my main problem.
Coupled with the lack of sleep, no appetite and its pretty hard to make it through the day.

This morning I had a very strange sensation of my body vibrating when I woke up. Every time I tried to go back to sleep it started again. So 4am is pretty much my pattern for waking.

The ups and downs are the hardest to grasp because I'm so desperate for a concrete example of getting better.

It's so strange to go back and read my old posts, like I'm giving myself advice from the past!

Anyone else around the same sort of time as me?!

Trying to keep positive that better days are coming x

Hi Kay, I am 8 weeks on fluoxetine now but 4 weeks of that into an increase to 40mg and feeling very similar. Waking up every morning with a feeling of dread, OCD is still bad throughout the day but I am much calmer by the evenings.
I’m feeling at the end of my tether as I have already tried escitalopram which pooped out after a couple of months then did 2 years on venlafaxine which never really made me feel like my old self. I’m also on quetiapine and mirtazapine which I also reduced at the same time as my fluoxetine increase so I suppose I have the withdrawal from that complicating things a bit. I just want to feel like me again and really hope this time the fluoxetine will help me 😞

Hi Jo
Isn't it just bizarre that feeling of improving by the evening and then waking up back to square one!
You would think I would be used to it, I've been here a couple of times, but I never get used to it.
I've only ever taken fluoxetine and it's always worked eventually so I'm hopeful but god it's such a long proccess.
Have you read the timetable thread?
I literally read it every day. It's what got me through last time.

I'm the same, desperate to feel back to myself. Ive read that these ups and downs mean the medication is working.
It took me a good 8 weeks to feel better last time but every day I worry I'm never going to find myself again.

Are you managing to work or anything?

Hi Kay,
Fingers crossed we will get there soon, although I’m convinced I’ll need to go to the maximum dose as I have on every other med I’ve tried 😒

I’m lucky that I have a really flexible job working from home where I can choose how many hours I work each week, between 10 and 30, so if I’m feeling really crappy I just do the minimum but usually manage 20 a week. I have a little boy too so it’s great for fitting around school hours too 🙂

I keep telling myself I have got through this many times before and I will again eventually, it’s just this time around I am one of the unfortunate ones who has to try a few meds before I get there!

That's good your job is flexible. It's great that you are even managing to do any hours. I'm signed off now. I didn't think I would need to be, was sure I would be OK to go back by now but it's taking longer than I thought.
I've got a daughter who is 13 and a son who is 7. It's hard to be struggling with this with kids to look after too isn't it. I feel guilty all the time. My 13 year old understands, she's so good helping with stuff. They have been on half term this week and we have literally done nothing.

I had a bad day yesterday. I knew I had to speak to the Dr about my sick certificate and every time I called and it was engaged I could feel the anxiety getting worse. It's ridiculous really.
I'm pretty sure I used to a competent woman 😜
I ended up not being able to get up or eat all day.
But again by the evening felt OK. It doesn't seem to matter how bad I am in the day I still get a little better come the evening.
I remember that from the last few times I was ill and I'm pretty sure that means the meds are working.
It sounds like a good sign if you are having the same happen so fingers crossed this works for you.

I cannot wait to feel like me again!
Keep updating. It's so nice to hear from someone going through the same thing. X

We’re the same, half term this week and have done nothing but my son has his birthday party tomorrow so my mum dragged me out to buy stuff for that, It was really hard and I am dreading tomorrow but I can’t let my son down. Luckily the mums of the kids who are coming all know what I am going through so that makes me feel a bit easier!

I think this week is probably the worst I have felt for a very long time and I have read that it can get much worse before I get better. I also seem to feel normal like clockwork from 5.30 to 6pm every evening m, it’s so strange but I’m not knocking it! I really do hope it’s a good sign. X

Oh I've been there with the birthday parties and not feeling up to it. It's so hard. Hope it all goes well and your little boy has a good day. If it makes you feel any better I completely missed my little boys 6th bowling party, I just couldn't manage it all, and I asked him if he remembers I wasn't there and he said no! He remembers one of his friends got him an iron man toy but that's about it.

I think this week has been the worst for me too but with moments that were better. It will be 4 weeks for me on Sunday.
X

Crikey I had a bad day yesterday!
So odd as I had slept OK Saturday night and the waking anxiety wasn't too bad but the depression and crying and the feeling of complete despair just would not leave. I couldn't get up or eat.
Still felt OK by the evening though. What is that all about!!
This morning I was awake at 3.30. Not feeling too bad and then I had this complete and utter calm feeling and I felt totally normal for an hour or so.
Got up and the crying starts!
This all over the place situation is really hard because there seems to be no way of controlling or gauging recovery.
I feel like I'm wishing my life away just to get to the evening and a little break from it all but then I have to start all again the next day.

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Originally Posted by KayMK

This all over the place situation is really hard because there seems to be no way of controlling or gauging recovery.

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Unfortunately, this is all too common with ADs at the beginning. :weep: But such variations are usually a good sign. The problem with an uninterrupted linear improvement is it may owe more to the placebo effect than the med. Also, by my reckoning you're now at day 30 which means plasma levels will have stabilized and now be consistently at their highest level which may account for some of the problems you're experiencing until the bio-feedback mechanisms begin easing serotonin driven side-effects.

Thanks for your reply. As always very helpful.
Actually had one of my better days yesterday, managed to eat, stay out of bed and moments of feeling like myself.
Different story today. I think this may be the worse I've felt so far. Was awake at 3.30am.Can't stop crying, shaking and shivering. Had a full blown panic attack, couldn't breathe or sit still.
I just keep thinking that I can't carry on feeling like this, however much I tell myself it will get better there's still part of me that doesn't believe it and I can't see a way out.
I'm just feeling like a massive burden on my family. My husband is trying to work and look after the kids and me.

Your reply has made me feel slightly more optimistic for the future. I feel more hopeful when I know the reasons for the terrible feelings.
Thankyou

I am 5 weeks today on 40mg and I think this week has been the hardest. OCD through the roof and just cannot stop the compulsive googling. My OCD is focused around my relationships with people, mainly my partner of 18 years. I feel myself getting so wound up and irritated by him, don’t know if it’s the real me or just the meds. I also feel the same way about my mum at times and feel like I can’t stand my OH’s parents when before I could just take or leave them and it wouldn’t bother me much. I’ll get thoughts such as ‘maybe you should just leave’ and then that will start off the obsessive spiral of panicking and googling relationship issues, trying to figure out if what I’m feeling is normal, then googling about meds worrying about when fluoxetine will start working for me. I keep telling myself the googling is only making things worse, like a vicious cycle..but then 5 minutes later I’m at it again 🤯😞

Oh Jo isn't it awful. I'm the same with trying to find an answer to why I'm feeling like this, I keep reading and re reading these posts and asking the same questions over and over. It's exhausting. I just want a bit of a break from thinking about how I'm feeling.
It's so weird you should say about thinking about relationships. I was having a real meltdown this morning and I started to analyse how I feel about my parents and if they are a trigger and I feel like whats happening is my brain is rooting around for any reason to feel like this. My husband got a bit angry with me and it caused a big panic attack and I was telling him he doesn't care about me, which I know isn't true, he's very supportive and we have been married for 20 years! It's just crazy the places my brain is taking me to.
I can't settle today at all. Normally I can at least manage a nap even if the anxiety wakes me and I've got pretty good at dealing with it but today it's just not happening.
I just feel so sorry for myself and guilty and sorry for putting everyone through this. I'm desperate to feel back to normal.

I just keep repeating over and over again it's just a bad day, it's not forever.

I really hope you feel a bit brighter at some point today.
Are there any techniques that work to calm you?
I do the 4 7 8 breathing when I can but I find I can't concentrate on any stuff like that when it's really bad which is annoying because that's when you really need it.
Xx

I called my psychiatrist in a panic yesterday as I was worrying so much about the meds not working. Her secretary said she would call me back with an appointment which she did this morning, but it’s not until 25th June, so the the psychiatrist must think I need to wait a bit longer. I have just started doing CBT but it’s a lot to take in, and sometimes I try mindfulness meditation but I find my thoughts flying around in all directions.

Funny how you’re having those thoughts about your family too (well not funny but you know what I mean...) I mostly have thoughts that I don’t feel anything for my partner but annoyance, but then I start panicking that he has had enough and is going to leave me. I also get very frustrated with my mum, we used to be so close and best friends but now I find her so overbearing and she still talks to me like a 10 year old even though I am 41 😏

Oh you are a similar age to me, I'm 43! I think... I keep forgetting my age with this brain fog!
Yeh the mindfulness takes practice and you can't really practice it when you are feeling so bad. I always mean to keep on top of these sort of things when I'm well but life sort of takes over and you forget.
I find that when I'm first well everything seems so great that I can't bare to remember how awful it was so I just box it away in my brain.
I'm pretty good at compartmentalising and then it all comes back to bite me in the arse!
I'm pretty close to my mum and dad but I've always felt more like the parent. I'm a people pleaser and I never want to worry anyone or upset anyone and it plays on my mind if I do.
My sister is an addict and it's caused lots of turmoil in our lives that resulted in me having a massive breakdown 3 years ago. I haven't seen her since and there is a lot of pain that I'm good at putting aside until the anxiety and depression rear their head.
I think most people's families are tricky, it's never as perfect as you think it is.
Are you on Facebook? I just joined a fluoxetine support group, dunno if that would help you or make it worse with the googling

Yeah I’m on Facebook. Is it this one?
https://www.facebook.com/groups/1915...337/?ref=share
I just joined but will try not to get too hooked 😆

That's it. You will see I posted a rambling post earlier in my desperate state! 😜

Panic down under do you think I might have serotonin syndrome? Googled it and now I'm panicking because I have some of the symptoms. Or is it just side effects. Feel like Im getting worse not better. Awake at 2.30 this morning and just can't settle. Feel shaky and sick and I keep clenching my jaw.
Would I still be able to feel better in the evenings if I was suffering with it? The rational part of me says no but then the fear kicks in again.
So annoying because Monday I really felt like I had turned a corner.

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Originally Posted by KayMK

Panic down under do you think I might have serotonin syndrome? Googled it and now I'm panicking because I have some of the symptoms.

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No, it almost certainly isn't serotonin syndrome/toxicity (SS/T). It usually occurs when two serotonergic meds with different modes of action are taken together. Most serious cases involve MAOI class ADs plus another med. It is rare when taking only one med even in massive overdose. Most of the online information about SS/T is nonsense and that includes in medical journals and FDA, MHRA and WHO, etc, advisories. Not my opinion, but that of Dr Ken Gillman, one of the two leading experts on the syndrome, for example: Regulatory Agencies (WHO, FDA) Offer Ill-Conceived Advice about Serotonin Toxicity (Serotonin Syndrome)...

You might find this useful: Demystifying serotonin syndrome (or serotonin toxicity) - PDF. Note that neither jaw or teeth are mentioned.

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Feel shaky and sick and I keep clenching my jaw.

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Jaw clenching and teeth grinding is a relatively common initial side-effect of most ADs, but they are not symptoms of SS/T. They can also be triggered by anxiety.

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Would I still be able to feel better in the evenings if I was suffering with it? The rational part of me says no but then the fear kicks in again.

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Your fluoxetine plasma levels have now stabilised to a steady state so you have the same amount of drug in your system 24 hours a day. If it were SS/T then the symptoms would be fairly constant.

Thankyou. It's crazy how I panic about this stuff when I've been here before. In my better moments I know 100% I will feel better, in the bad moments all rational thought leaves my brain!!

God this is hard work! 🤯 woke up to the usual feeling of dread this morning but managed to get myself out to meet a friend for coffee first thing, then did a bit of work and had a moment of feeling slightly more positive but it was gone in a flash, anxiety went sky high this afternoon and had to take a diazepam as I really felt like I was going to lose it 😞

It is bloody hard work. I had a better afternoon/ evening yesterday. Really had moments of completely feeling like myself.
Today I haven't managed to eat or stop crying yet! There's just no rhyme or reason.
That's good you managed to get out.

I am literally hanging on by the skin of my teeth. Do not know how I'm getting through.
Hope you have a better evening Jo.

Week 5 and the sh*t really hit the mental health fan yesterday putting it bluntly!
I had been struggling for a few days getting worse but just keeping on trying to tell myself it's the medication it will get better but the mornings were getting worse, my appetite had gone again and it was taking longer to reach some sort of normal state by the evening.
Between the lack of sleep, the anxiety jolting me awake every time I tried to rest and the constant crying. I was pretty desperate.
I have experienced all this before but this time felt different like I was less able to reason with myself. I have had moments where I've felt better so I know the medication can and will work but omg I just couldn't get through another day without any help.

So starts my story of the terrible mental health services in the UK.
Yesterday morning I knew I was in danger, I just couldn't see a way out and while I don't want to die I did want the pain to stop and I wasn't in my right mind.
I had called the gp the week before and was told by the 3rd different locum I had spoken to(only over the phone cos of covid🙄) that I need to change my dose and that I shouldn't be taking the promethazine every night only adhoc. The previous Dr had said every night.
He said phone back In 2 weeks if I wasnt any better.
Yesterday called 111 mental health crisis support told them I couldn't do another day without some help that I wanted to crawl up and disappear. He said could I do some breathing exercises or go for a run!!
Advice was call Gp first thing but you sound OK to last until then.
So off I went to A&E. I was in a real state. I hadn't stopped crying or shaking for 12 hours, my legs had zapping feeling up them, I couldn't sit still or eat.
I really was at the end of what I could cope with, I had done 5 weeks with no extra help and I think I was just tired.
I saw the mental health team at A&E and they wanted to admit me but gave me the choice of going home with some medication and the support of the mental health team. So I went home.
They were amazing at the hospital. I wish I had asked for help sooner. So now hopefully I will get to see a psychiatrist to review meds.
I had a diazapam at the hospital and she sent me home with a small supply of lorazapam and zoplicone.
Still woke at 3.30 this morning with anxiety but it was manageable. I've never taken so much medication in my life but when you need it you need it.
I've slept all day and so far no crying.
I feel hopeful that I'm going to get better.
Phew what a ride it's been!!

Oh Kay! I’m so sorry you’re feeling so rubbish at the moment. You’re right the NHS mental health system is appalling. It took me a trip to A&E and then another few months before my local CMHT would agree to take me on and let me see a psychiatrist.

You will get there, 5 weeks is still early days. I am 6 weeks tomorrow and had a few hours of feeling quite good this morning!

Hopefully the lorazepam/zopiclone will help you sleep a bit better but you could also consider trying a small dose of mirtazapine at night. It really is brilliant for sleep but can give you a huge appetite. See how you go for a couple of weeks but it’s something to consider if you’re still struggling xx

So glad you went to A&E. SO glad they helped. YOU are amazing, just take it a minute at a time, it WILL get better, you are getting the help you need now.

Thanks for being so supportive to others. xx

Thankyou so much both for replying.
I literally slept all day yesterday. Missed the visit from the home treatment team so I'm sitting here stressing waiting for them to call back with another time.
Can't stop crying today although the anxiety is definitely less. I think I'm just scared how bad I felt. It's an awful feeling to feel so out of control.
Hope you are both having good days.
It took me 12 weeks to feel better last time so hopefully I'm half way x

Hi, crying is important, even if you don't know why it's happening. Tears wash through us.

My day has turned out different... there is some very noisy work going on in the house next door, and just as I was wondering how I was going to cope with work, the flooring company rang very apologetic because someone is off sick and they can't come today!

HOWEVER, I took the opportunity to double-check that they are going to move the fridge and washer and they are, so that anxiety has entirely gone.

You will be ok. Take it a minute at a time... xx

You sound like you have a handle on it.
Pleased you are coming through it.
The home treatment team were very good. They are going to refer me to psychiatrist in the next 10 days and advise my gp to prescribe short course of lorprazam to get me through next couple of weeks and then follow up from there. Feeling bit more hopeful now. I've never needed any other medications before I've always just pushed through it but the mental health team were amazed I had managed 5 weeks with the height of the anxiety and no help.

Hope you carry on having a bright day xx

I agree, it sounds as though you have done amazingly well. You will be able to look back on this to remind yourself of just how strong and resilient you are even if it doesn't always feel like it! :) xx

Thanks. I've definitely needed to have some strength to get through this.
Feeling much more calm now. I'm trying to keep those sneeky 'you will never feel back to yourself' thoughts at bay. I'm mostly sleeping the last few days away.
Feeling sort of flat but it's preferable to the mania of the anxiety. It feels like such a long time until the real Kerri has made an appearance!!
Its a big thing for me to just accept how I feel not overthink it.
Love the support on here. It really helps. X

6 weeks today!
Ate 3 meals yesterday! That's a first really.
I also cried all afternoon and most of the evening. I couldn't actually tell you why, just feeling sorry for myself or just so sad. The anxiety is lessening. Woke at 5am not 3 today and I'm sleeping more. In fact all I want to do is sleep but most days I'm trying to get up even if it's just the afternoon so I can spend some times with the kids.
Still getting those couple of hours before bed where I feel OK.
I cant remember how I got from this last time to feeling better, it feels like I'm missing something, Like it seems such a jump, I can't imagine ever feeling like myself again. I don't really suffer with depression normally but this last few weeks has just been so low. Then there will be brief moments of omg I feel OK like I've come back and then it will dip again.
It's my daughters 13th birthday on Tuesday and I'm just praying so badly that I manage to make it OK for her.
I'm signed off work for 4 weeks now.
I'm missing my life and my family so badly. It feels like I'm lost.
So I'm keeping on, I will keep on updating and hoping I'm going to recover.
At 8 weeks last time I posted that mornings were still and I was still crying but once I had eased into the day I had more moments of feeling better so I'm hanging on to that.
Xx

It will be 7 weeks on 40mg for me on Tuesday. I had a few hours of feeling normal about a week ago but nothing since then 😞. My OCD is still crazy and I’m glued to my phone/iPad almost constantly googling. I’ll give myself a talking to but then 5 minutes later I’m doing it again 🤬. Seeing my psychiatrist on Friday and get the feeling she will want me to increase to 60mg.

Feel like I can’t connect with family, feel nothing for my partner, constantly irritated by my son and my mum. I just want to be happy and feel comfortable around people again 😢

You may need to go up to 60mg but at least you have done this hard early part. You know what to expect of the side effects and you will be prepared.
Keep going, I think it shows how strong we are to get through this torture.
I can't interact with anyone. The thought of it makes me feel sick. I can't stop thinking how I'm feeling every second of the day so I cant hold any sort of normal conversation. I haven't left the house in weeks. I just don't feel like I'm real and all this stuff is going on around me.
Saying that the larazapam has helped when the anxiety gets extreme and I'm feeling more hopeful occasionally.

I read somewhere that it's normal to feel more irritated or over react to people around you because your nervous system is on red alert.
Stay strong. Xx