***TRIGGER WARNING SUICIDE***
My rate of blogging is always a sign I could be unwell and here we are, two in two days.
I mentioned medication change and aripiprazole (brand name Abilify) almost in passing yesterday. Truth is, I was using blogging as a distraction because of the mental agitation I was experiencing. I couldn’t settle to anything, so I thought I would pour some of my mind out onto “paper”.
For years I swore I would never take aripiprazole. I had heard too many stories of mental agitation, physical agitation, inability to keep still, restless legs, insomnia. Even at my first ward round in hospital, when options were being put on the table, I said, “No. I’m not taking aripiprazole. No, no, no, no. no.”
But when I sat with the ward pharmacist and looked through all the side effects of all the other atypical antipsychotics, it looked… the least awful. In terms of weight gain. In terms of prolactin levels (which can affect breast size and cause breast milk production). In terms of extrapyramidal effects (involuntary movements and muscles spasms). So I decided I would give it a go after all and try to have an open mind and an open heart.
While I was cross-titrating (going down on the quetiapine and up on the aripiprazole at the same time) I found myself very sedated. Annoyingly, doctors kept saying that I “shouldn’t” be sedated as it is an “alerting” rather than a sedating drug, but there it was, and in the end it was thought that it was an artefact of the combined drugs. This proved to be right; in fact now that I’m off the quetiapine entirely my problems have really begun and they are all about being “alerted”.
Don’t get me wrong, I was glad to see the back of the quetiapine. So, so glad. Five years of – on and off, and not all at the same time – sedation, hypersomnia, brain fog, increased appetite and carb cravings, really significant weight gain leading to high blood pressure, a bowel disorder from the drug slowing my metabolism down, a stuffy nose, hair falling out more quickly all over the house, breast engorgement and milk production, and a possible link to breast cysts… it’s definitely the drug I’ve taken with the most side effects and overall the benefits have not warranted the costs.
I’m still on lithium and lamotrigine and pregabilin but TBH they feel a bit like background drugs right now. It was all about the quetiapine, now it’s all about the aripiprazole. As the Q dose has dwindled, the aripiprazole side effects have increased and since the last bit of Q went, things have got a bit out of control.
Agitation (mental, rather than physical), anxiety, insomnia… these are all on the patient information leaflet, but until you experience them, and all at once, you don’t really appreciate what you have let yourself in for. In other words, I was right all along and I can’t live like this.
The insomnia’s been the worst; despite taking the drug in the morning for at least a week now I’ve been having a combination of difficulty sleeping in the first place, a hour or two (separately) awake in the wee small hours, and waking much earlier than I would normally. I’m probably getting 5-6 hours, and I am a person who needs 8 hours, minimum, and not horribly fractured.
I’ve started having visuals when I close my eyes, psychedelic patterns and pictures than change and morph maybe twice a second, making it harder for me to sleep. I haven’t really had much of these since I wasn’t sleeping when I was taking sodium valproate back in 2011 so I assume in both that played a part. Faces; animals; fly’s eye views; rows of regular shapes, like colourised picture of things seen though a powerful microscope. It makes it rather more difficult to get to sleep.
The tiredness is horrendous. I can’t think. I just want to cry. I try not to nap more than half an hour in case it makes the night harder, but I’ve no idea if that has any effect or not. The anxiety and agitation increase because I am so tired I can’t do anything. I can’t settle. I can’t concentrate. Yesterday and the day before, I just hated being alive.
I’ve tried diazepam for sleep. I’ve tried promethazine (a sedating antihistamine). I’ve seen the GP today and got some zopiclone, a drug I don’t like, but I am desperate. The nights are the worst, when Tom is asleep and I am very much not. I am starting to think about suicide. I am starting to feel that I cannot be expected to live with these effects, and that if I have to, I need to be in hospital.
Last night my mind went back and back to those tracks. I wanted to go back there. I wanted to creep out while Tom was asleep – maybe locking him in – and go down there and wait for the next train. Or part of me did; part of me wanted to go to A&E on the bus, or walk there if there were no buses, and ask them to let me stay there, so I couldn’t go jumping, until Home Treatment Team came online at 8am and I could ask them to find me a bed.
Why didn’t I wake Tom? I really don’t know.
After crying to the GP today we both concluded I need more secondary care input. I don’t have an appointment with my psychiatrist and I haven’t yet been allocated a CPN (Community Psychiatric Nurse) as promised. I need someone to say that in their experience this will all pass in… however long. Or that if it hasn’t now, it won’t. Whatever. I can’t make an informed decision without information. Although as a doctor friend said to me on Twitter today, only I can really say when enough is enough. And I don’t want to be back on the tracks.
In short, I feel like the new drug that’s supposed to help me is pushing me into crisis. Suicidal crisis. I have emailed my psychiatrist telling him this. If it weren’t for Tom encouraging me to give it the fair trial I asked him to support me in giving the aripiprazole, I think I would’ve just stopped taking it. I still think I might.
This sounds so hideous. I really value how you recall so carefully each experience…. I have a poor attention to effects and so on. Seems as though your options are all insufferable….and you are tossed between these monstrous scenarios. I really hope you have helpful and closely attentive people to keep on looking for a liveable (positive harmonious) set up. Tc
Urgh, sounds really rubbish. Hope you get some useful help soon.
Abilify can increase suicidal thoughts tho it sounds like you’re just mentally and physically exhausted from your med changes. I don’t know if it helps, but I have been there. Feeling like I’ve taken every drug and had every side effect and it’s just frustrating and awful. For me, it was about changing doctors and finding one who was willing to try something different, but I still am not sure what’s working and not, but at least I feel like my doctor is frustrated too and wants to get this right. I would say it’s better to get to a safe place if you are worried abt making an impulsive permanent decision. I think you seeing that says a lot abt u n shows u r a fighter. Do what you have to do to be safe. I know it feels untenable and prob is but hold on to whatever that strength you have is-Tom or just something inside u that wants to hold on. I’ll be thinking of you.
Hoping things settle down soon with your medication Charlotte – sending virtual hugs xxx
I felt strange to ‘like’ your post. Hence, I’m writing a comment. Glad you feel able to share your troubles in treatment with your blogging community. Hope it is more manageable too and you feel greater peace. 🙂
So sad to hear of your suffering. You must be totally exhausted. Medication we take for our bipolar symptoms is very scary when you try to change it. Before I settled with the combination I take it was extremely unpleasant testing different ones out until you actually feel that you are better on a particular mix. You have taught me a great deal about the different medication available to us today. However I have never been offered anything other than what I take by my GP and to change it seems to be a no no situation. Never any advice offered just walking, keeping busy and active. Join a club. All good advice but for someone like myself who cannot concentrate on any activity for long and no friend to go walking with, my GP’s advice defeats me and I avoid seeing her and I would rather suffer in silence than see her. I don’t feel at all looked after in the community. There doesn’t appear to be any network of help available and I feel I have to just get on with it and battle on. It must be a relief to you that you are getting some help. However it is certainly not straightforward and you are so extremely brave to try different medication with the results you are experiencing. So wish it would all be working for you now. Hope all will settle down soon. Love and hugs.
This is such a powerful blog, Charlotte Changing meds is such hell. I hope that you find some solace soon (and get allocated a CPN), and that the suicide stuff wanes. You shouldn’t have to, but don’t let services get away with not supporting you more. And do consider Maytree if you need a few days out of life without damaging yourself. Your voice is so important x
Maytree won’t take me as I have complex needs from a serious MI, sadly 😦 but thanks fir the positive feedback!
You have described the hell of psychiatric medication better than I ever could and I don’t use that word “hell” lightly. In my experience I have found psychiatrists and MH professionals to be largely blasé regarding side effects which angers me if I’m going to be honest. Thinking of you and willing you & your body to find the medication changes and side effects easier.
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I know exactly where you are. Your blog has helped me so much. In fact, **TRIGGER WARNING* when I changed medicines it took me to the brink of suicide. That’s when I started http://www.juststaysane.com and it has helped me so much to journal my journey. Lots of power and hugs to you. ❤