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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

AIBU to be furious to have discovered that I'm not even on a therapeutic dose of my AD?

38 replies

Psion · 03/05/2016 18:05

Have been struggling with depression and extreme anxiety. So have been on Trazadone for the last 6 weeks. Titrated up from 100mg, to 150mg and have been on 200mg for last week. Have also been on Quetiapine for last 2 weeks, titrated up from 50mg, to now on 75mg at bedtime and 25mg on waking.

These last few weeks have been Hell. Anxiety on waking just as severe, feeling so low and depressed with suicidal ideation constantly running in the background. Have only had a tiny handful of good days.

When I started Quetiapine, my CPN gave me an official info leaflet about it with a link to the official NHS healthcare website for my local area.

I clinked on the link today, to read that I'm fcking not even on the officially listed* therapeutic dose for Quetiapine!

It states that when being used as an adjunct for an AD the dose should be 150-300mg and should be titrated up to 150mg by Day Four (and then increased according to patient need).

It also states that when being used to treat anxiety (which I also have, quite severely) the recommended therapeutic dose should be 150mg FFS!

So, WTAF have I been suffering like the damned these last few weeks on doses which aren't even considered therapeutic??? I have looked longingly at buses and half hoped they'd run me over. I have driven past trees and wondered if I'm going fast enough to enable a fatal crash if I drive into them. There are just no words to fully describe how low I have felt.

I spoke to my CPN yesterday, and even he mused that it might well be better to increase my dose quite a bit higher, and to go in quite strong with Quetiapine, for a short time, to blat the symptoms, get some stability and then look to decrease. So, obviously he knows that I probably really should be on a higher dose!

I know they had a meds review today, but they haven't contacted me to discuss changing my dose, so I assume the doctor hasn't okayed it Angry

I am totally confused why I have been under dosed like this. But also beyond furious. I totally get about safe prescribing etc, and can see that this is common sense.But I have told my CPN several times that it doesn't feel like the Quetiapine is even touching the sides. And no wonder, when I'm not even on the official therapeutic dose recommended on their own f*cking official website.

Just had to let rip somewhere Angry

OP posts:
Psion · 04/05/2016 08:44

eiffels I do get the idea of titrating perhaps slightly more slowly, to monitor effects.

However, according to the NHS website, when using Quetiapine for normal depression/anxiety they recommend titrating up to 150mg of Quetaipine by Day Four.

There's a big difference between 4 days and the 2 weeks I have been taking it. I started very low, but have been on 100mg for just over a week now, and it isn't doing anything.

OP posts:
shinynewusername · 04/05/2016 08:53

You need to allow for the fact that your dose of trazadone is also being titrated up. It is important to be very careful when titrating up two drugs at the same time - not just because of interactions but because, if you get side-effects, you don't know which drug has caused them and can then end up having to reduce or stop both - a much worse scenario than titrating up slowly.

As I have said up thread, you are absolutely right to want an explanation and a plan from your CPN. But you need to let go of the idea that you have been somehow under-dosed or badly managed. Every HCP on this thread has explained that there are likely to be good reasons for increasing the quetiapine slowly. If you convince yourself that your MH team are mismanaging you when this is not the case, it will affect your therapeutic relationship with them and may slow your recovery. I am absolutely not saying, "Just accept it because the doctor says so" - quite the opposite, it is very important for you to know why they are managing you like this. But you need to avoid going to the opposite extreme and assuming that they have mis-managed you when there is no evidence that this is the case.

Psion · 04/05/2016 09:43

You do speak a lot of sense shiny.

I have just phoned the Crisis Team, to have a chat about my meds and my confusion over what constitutes a therapeutic dose for me etc.

Unfortunately, my CPN wasn't in and when I asked if I could call back later to chat to him, I was told they didn't know if he was in today. Which is fine. They also told me that they hadn't had a meds review yesterday as the doctor was ill.

Then the person told me that they could deal with any concerns about my meds I had. I said thank you, but tried to explain that I'd rather further chat with my CPN because it had been his idea, on Monday, about upping my Quetiapine quite a bit in the short term to get on top of my anxiety. And that having thought about it, I thought it was a good plan and one I would be happy to go with if the doctor agreed.

Except, they didn't give me chance to say I was happy to go with this. Just bluntly interrupted me saying ''If it's in your CPN's notes then it will get passed to the doctor today in the meds review, if they are in.'

When I tried to explain that my decision about being happy to go with this plan wouldn't be in my CPN's notes, as I had told him I would have a think about it, they interrupted me again and just repeated that his notes on our discussion would be passed to the doctor today.

Then I said could she just give me a moment to explain, she interrupted me (again) and said very bluntly, that they would be in touch after the meds review. It was evident that she was just trying to get me off the phone as fast as possible Sad

I feel really frustrated and really upset, because in the 6 weeks I have been under the Crisis Team I have only phoned them 3 times, so it's hardly like I'm constantly pestering them with nuisance phone calls. But she made me feel like I was completely wasting her time Sad

So I guess I just have to wait to see Sad

I am really surprised at the huge difference in the attitudes and conduct of the different people on my Crisis Team. Some of them are so lovely and seem really engaged and supportive (these seem to be mainly the qualified CPNs), but some of them are just clearly going through the motions and really don't seem to give a damn and they seem to be the support workers.

OP posts:
shinynewusername · 04/05/2016 09:51

Sorry you are having this hassle - definitely not helpful when you are feeling so low. Hope you get to speak to your own CPN soon.

And hang in there - depression is a foul disease because it convinces you that you will never get better - but you will Smile

Psion · 04/05/2016 09:51

And, when I tried to ask about the therapeutic doses as stated on their own website, and the official stated timescale for titrating, she very much didn't want to discuss it just said 'Everyone is different'.

I was really polite all the way through the conversation, but she was so dismissive. I really wish that she had just taken my message asking for my own CPN to call me back when convenient (as I had asked her to) rather than getting involved and ending up making me feel 10 times worse than before I rang Sad

OP posts:
shinynewusername · 04/05/2016 09:53

Sorry - that is crap Sad

Psion · 04/05/2016 09:55

You are so right shiny. I swear to God I do not believe I will ever recover from this. And even though I know logically that I will, I just cannot believe it, or feel it, if that makes sense?

If I could just feel a tiny bit of optimism that I would recover then I would be able to cope much better. But, right now there is no hope or belief. And even though I know that is the nature of the illness, it doesn't make any difference. And it doesn't matter how many times the Crisis Team or my DH tells me that I will get better, I just do not believe them.

Logic also tells me, that not everyone recovers from depression and I'm genuinely starting to believe that I am going to be one of them Sad

OP posts:
Psion · 04/05/2016 10:00

Yep. I came off the phone and cried because she'd made me feel like an annoying, silly nuisance who shouldn't dare question the doctor or any of their decisions.

I don't quite know who she is, I don't think she is a nurse, just one of the admin support staff but she shouldn't be answering the phone in such a way. Certainly not answering the phone to emotionally very vulnerable people, which they'll get a lot of there.

If I was anywhere near my real fighting weight I would have torn her a new asshole for being so rude and dismissive. But, of course I feel so low and hopeless that I just don't have that i me.. And I expect that very few of their other patients have either, so she probably gets away with it a lot Sad

OP posts:
acquiescence · 04/05/2016 10:09

You need to talk to the prescribing doctor. I am a cpn and have never come across quetiapine being helpful for anxiety. Quetiapine is a pretty rubbish drug to be honest from my experience. Have you tried beta blockers such as propanolol?
Yabu to 'be furious'. You just need to talk to the doctor about a review of your meds. Don't get stuck up on the idea of a set dose working or not working, every person Is different and what may work for one may not for another.

acquiescence · 04/05/2016 10:12

And if you are under the crisis team then call them as much as you need to, that is what they are there for, you will not be seen as a nuisance. They will have come across people who call 25 times a day. Hope you feel like you are getting some better support soon.

exWifebeginsat40 · 04/05/2016 10:15

i take 400mg quetiapine each night, along with 30mg mirtazapine. 300mg Venlafaxine in the morning.

i was started on quetiapine in hospital 3 years ago, and they titrated me up in a week. it knocked me flat. I take bisoprolol every day for potential heart issues with my meds and have a heart trace every 6 months or so.

I am diagnosed with BPD, complex PTSD, major depressive disorder, anxiety disorder and suicidal ideation.

I take the quetiapine as a mood stabiliser and it helps with the occasionally psychotic features of my BPD. it's not a fun drug to be on as it makes me fat and exhausted. it used to help me sleep but that's mostly gone now. I just swapped from pregablin to the mirtazapine and it's been a nightmare but I'm starting to feel some improvement four weeks in.

you need to see a psychiatrist for a med review, but don't expect them to be delighted and say they wouldn't have known if you hadn't mentioned it. talk to your CPN and ask about the psychiatrist - it's not what the crisis team are for.

I hope you start to feel better.

Psion · 04/05/2016 10:25

Thank you aquiesence but I really feel like I daren't phone again, in case she answers Sad

In the few times I have rung before, I have got someone really nice and pro active. I rang about 2 weeks ago, on a Sunday and said how bad my anxiety was and within 2 hours they had delivered some diazepam to me. I thought that was amazing Smile

I must admit that after 2 weeks my anxiety is no better on Quetiapine, and is probably a bit worse. But my CPN tells me this is because it hasn't had chance to start working yet, and it needs at least 3 weeks to start to kick in, and I've only been on it 2 weeks today. He assures me that it certainly won't be making me feel any worse.

OP posts:
creampie · 04/05/2016 15:06

No that's not right. The anti anxiety effect is pretty immediate, the anti depressant effect takes longer.

There can be cardiac complications with quetiapine and trad together (long qtc) so they may want an ECG first. Otherwise perfectly reasonable to increase dose now (in the absence of any other good reason not to)

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