Ups and downs

Daily life is full of ups and downs at the moment – more downs than ups, but I try to hold on to the good moments like they’re precious treasure.

The day starts with intense nausea. I can’t describe how miserable it is to wake up every morning to a churning stomach and acid in your throat. It dissipates slightly when I shower, so I get out of bed pretty quickly. In another life, feeling so ill would mean not going into work – my daily routine now has to include a pep talk that I can get through this, and that I am well enough to work.

I’m finding it increasingly difficult to get to work – even if I drive myself there, I start panicking the moment I leave the house, and by the time I reach the end of the road I’m having to really urge myself not to give up and go back home. I get to work, and then around 4pm nausea starts to build again at the prospect of the journey home. Driving home used to be okay – something about heading back to safety – but this is no longer holding.

My new therapist said I should contact Occupational Health at work, so I sent off the necessary forms…they rang today and offered me an appointment tomorrow at their building in the centre of town. Great. I had written very clearly on the form that I’m very restricted in terms of travel at the moment, but that seemed to fall on deaf ears so I had to explain again over the phone. They begrudgingly offered me a telephone consultation next week. I’m a bit surprised by the resistance – given the wide nature of problems that could lead someone to contact Oc Health, why aren’t they more accommodating? I can’t be the only person who would struggle to make it to their offices.

So mostly bad days, but some good ones too. Yesterday I had to take my car for it’s MOT, and I’ve been dreading this for weeks – the prospect of driving to the test centre, then hanging around, then driving back – nausea was off the scale. But I coped. The journey was manageable, and in the test centre I managed to stay reasonably calm. I was really, really proud of myself afterwards. And my car passed it’s MOT so that was a bonus!

The day before that I had a meeting at work, and I managed to sit there for the duration, 30 minutes, without having to leave. I haven’t been able to do that for weeks. Another proud moment. I’m trying to hold onto this, use this as confidence that I can bring on repeat performances.

It’s week two of Abilify – I can’t say that I’m noticing any difference, but maybe it’s too soon. To be honest I just want the six week trial to be up so we can move onto the real anti-anxiety meds – Pregabalin for a start – but I understand I have to give this a try.

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Abilify on the scene

Yesterday, I came home from a hard day at work to FINALLY find my psychiatrist referral letter waiting for me on the doormat. ‘An appointment has been made for you to see Dr ABC next Thursday’. Fan-bloomin-tastic!

This afternoon I had a surprise phone call at work – my GP calling. She said she’d had an angry phone call from Dr ABC complaining that I shouldn’t have been referred at all yet – apparently there’s more to try before we need his help – so my appointment was cancelled. Ugh. 

The upshot is I’m about to start taking Abilify (aripiprazole). I’m not thrilled at the prospect – I’ve had really bad reactions to antipsychotics in the past, and Abilify isn’t really renowned for helping with anxiety – but I have to give it a go before I can really discard it. Watch this space.

What I need

I’ve been busy for the last couple of days, and I think that’s saving me at the moment. Every now and again a black thought or a dark question will pop into my head, and I manage to swot it away as I focus on what I’m doing. I have a sense that if I fail, I’ll start screaming.

Tomorrow I’m seeing Dr T, and I’m slightly nervous to tell him about my revelations regarding lithium doses – he’s kind of anti-pills. But no matter what he makes of it, the timing of my decreasing lithium dose and increasing suicide ideation are just too well matched to be ignored, especially given that I have no external factors to explain why my mood headed so far south.

That will be addressed with the psychiatrist on Friday, and thinking about it is where my instinct to scream comes from. Depression tells me you’re pinning everything on that appointment conjuring a solution – you won’t get one. You can’t be fixed. You’ll realise this on Friday, or shortly after when whatever new med doesn’t help, and BAM there you are, the hope and then the fall. You’re letting this happen again. You know you can just end this, now.

But I don’t need a ‘fix’ to survive (there isn’t one anyway); what I need is something to make depression more bearable. Something to do what the lithium originally did: dull the worst of the lows. I may not be able to tolerate lithium at the dose required to make that happen, but perhaps aripiprazole (Abilify) will save the day.

And if I’m feeling sensible, or responsible, I should tell my psychiatrist almost everything I’ve written here, so that she knows how close I feel to losing everything. I think I do need a replacement for Nurse L, or more regular reviews at the hospital. Now that I recognise my depression for what it is, I can see the danger it poses. I need to do everything I can to help myself right now in case depression takes over again and I lose this perspective.

An earlier appointment

The hospital got in touch this morning (they emailed me – I’m impressed for the NHS!) bringing my appointment with my psychiatrist forward from November to Friday of next week. I was pretty pleasantly surprised as I thought I’d be waiting at least a week longer, but now I know I have only seven days to get through before my meds are changed.

Only seven days. Hmmm. This won’t be easy, but I think I can manage.

Yesterday I phoned up my GP surgery to get the results from my last blood test: my lithium level (at 600mg nightly) is 0.4. Given that I can’t really tolerate the 800mg required to get only one step closer to the target level, I have a suspicion that I’m going to be taken off lithium altogether. Either that or I’ll have to put up with the strong side effects. This couldn’t be easy, could it?

Previously my psychiatrist has said the next step would be to add in aripiprazole (Abilify) – does anyone reading this have experience of this drug/info they’d care to share? If that doesn’t work, it’s apparently ECT/ketamine-infusion time.

It’s scary to think about, but at least now I can really see the value in the options down this medical road.

ECT? Ketamine infusions??

I saw my psychiatrist this morning, and it turned out to be quite an…interesting…half an hour.

She realised the lithium dilemma without me having to explain it, and the upshot is that we’re reducing my dose from 800mg to 600mg nightly in order to reduce the side effects I’m experiencing. This means we definitely won’t be hitting our original target of a lithium level between 0.55-0.7, but she says that target is more relevant to bipolar patients than patients with depression. Hopefully 600mg will still be useful to me.

We’re also adding in another antidepressant to try and boost my serotonin levels: welcome back mirtazapine (/Remeron). I have to admit, I’m a bit nervous about this – I’ve taken it before to help me sleep (which is another reason my psychiatrist wants me to take it now), and in December I wrote myself a warning before discontinuing this med for being too strong. I’ve been told to cut the pills in half and see if a lower dose is tolerable, and then increase in a fortnight. 

The whole medication vs insomnia battle really sucks; the meds are either so strong that I’m barely conscious in the daylight hours, or so weak I might as well be swallowing chalk pills. The only med that hit the right spot in the middle was zopiclone (/Imovane/Zimovane), but I’m not trusted with it in case I overdose. Grrr.

With this all established, my psychiatrist sat back and said we should think about what the next step is. When I see her in two months time, if the mirtazapine hasn’t helped much she wants to add in aripriprazole (/Abilify), an antipsychotic. After my bad experiences of olanzapine (/Zyprexa), quetiapine (/Seroquel) and risperidone (Risperdal) I had sworn I never wanted to touch an antipsychotic again, so we’ll see how I feel if it is decided this med is necessary.

And then my psychiatrist said she wanted to say something that might horrify me…that I should consider ECT. I’ve read enough blogs on WordPress to know that for all the scary assumptions we hold about it, it can have it’s good points, and my doc was quite encouraged when I didn’t immediately say no. She reckons it’s really underused, especially with patients like me who are managing to function, but are having a miserable time of it. 

Apparently I should also consider ketamine infusion therapy, because a UK trial has just finished and found some patients respond really well, so it’s opening up to referrals. And yes, that’s ketamine as in the horse tranquilliser/Class B drug, but used at a much smaller dose. 

I was a bit shocked by these suggestions – I’d thought that ECT especially was for very severe cases of depression, but now I know that’s not true (..and I’ve been reminded that my diagnosis is ‘severe depression’). I’m not exactly shut against the suggestion of having ECT, but the memory loss bothers me. I’d also have to have it as an outpatient because the hospital is really short on beds, but I’d need to have someone to care for me for 24 hours, and that’s not an option. 

With the ketamine infusion idea, I was pretty skeptical, but having looked up the details of the study etc I’m actually kind of intrigued. But, hopefully none of this will be necessary because the mirtazapine will help. Or the aripriprazole if it comes to that.

All in all, it wasn’t a bad meeting. I really like this psychiatrist (and yes, I realise that means she’ll be next on the list to disappear off somewhere else), because she is nice, but not too nice, and she clearly knows her stuff (not surprising given she’s a consultant psychiatrist). The loss of Nurse L was mentioned in passing – as I suspected there will be no replacement, and I have no interest in asking for one. My GP won’t be happy because she specifically told me to ask about it because she thinks it makes me safer (true), but letting someone else in is also dangerous in it’s own way.

We’re already rocking the med boat, so lets leave the rest alone, at least for now.