Keep Yourself Alive

I have already blogged about my recent adventures in insomnia (And still my brain whirs). Last week this was exacerbated by a rare side effect of sodium valproate: visual hallucinations. I never doubted that they were due to the valproate rather than psychosis; I only really began to experience them once I got up to the therapeutic dose, and I never believed what I saw was real in any way. What did I see? Initially, patterns; geometric designs, and motifs – such as flowers, beads, jewels, fruit – repeated in a “fly’s eye” pattern. These were later joined by segmented objects/creatures: ladders, centipedes and caterpillars. I did see animals such as cats and sealions, and occasionally faces and masks, but they always appeared in a very cartoonish style. Most of what I saw was in bright or neon colours, the kinds of colours that you get if you stare at a dark image and then look at a white wall. I was usually not frightened or disturbed by what I saw, although I admit that the writhing centipedes and the occasional mask or face gave me a shudder.

It seems strange to me now that I didn’t report this to my doctor right away. This was partly because the valproate also made me feel sleepy and stupid, so that I found it hard to think sensibly. I felt, and I was told I looked, sleepy throughout the day. I also assumed that, like most side-effects, it would wear off once my system adjusted. Despite feeling dopey, I was still having great difficulty sleeping at night without antipsychotics and if anything, “Loop Radio” had stepped up a gear. By Thursday last week, I was beginning to become upset and agitated by the combination of the music in my head, the images in front of my eyes, and the mental confusion. I felt that I did not even know what mood state I was in, that I no longer knew what was me, what was the bipolar, and what was due to medication. I spent the whole of my clinical psychology session that day in great distress, so much so that my psychologist ensured that I had a crisis management plan in place before I left. Importantly, she gave me information on how to contact the Duty Team if I was in crisis, something which no-one had told me before.

That evening, I tried a different tack. I reasoned that if I felt sleepy all day taking valproate as a split dose morning and the evening, maybe I should take the whole lot at night. Then I might get off to sleep without needing additional antipsychotics. I am not sure at what point in the night I realised this plan had gone horribly wrong. I had been lying awake ever since we went to bed, growing more and more agitated and frustrated by my inability to escape the audio-visual extravaganza which my brain seem determined to stage. Being also somewhat sedated, I did not consider solutions such as getting up and trying to read, listen to relaxation music or watch TV. The “logical” solutions that came to mind were as follows:

1)      Collect all the prescription meds I had in the house and swallow them at once. The intent behind this was not suicide per se, just a means of making my head SHUT UP. Dying seemed an acceptable risk.

2)      Cutting myself with the nice sharp knife we bought for a picnic in France. Probably on the legs, and purely to distract myself from the hallucinations and earworms.

Eventually, some sensible vestige of me prevailed; I woke my partner and told him that I needed him to be awake with me because I thought I was going to have to pursue one of these courses of action. He was up with me for quite some time then, trying helpful strategies like finding Radio 3 for me to try and counter the music in my head, and giving me cuddles and reassurance. Perturbed to find me in the same state in the morning, he took the day off work and we agreed that at 9am we would ring my consultant. By this point however I was panicky that I couldn’t stop crying and shaking, so my partner had to make the call. He spoke to the secretary and left a message for my consultant saying that we needed to speak to him urgently. I spent the morning preoccupied with the urge to be somewhere where I could jump under a train or out of a window; I felt like my body was twitching towards such actions. I took a bath with lavender oil, which was intended to calm me down, but I just wished I could drown in it. I dried my hair and banged my head against the mirror on purpose; I just stopped myself from hitting myself around the head with the drier.

After a few hours with no word from my doctor, we called again. The number went straight to voicemail. Next I rang my Trust’s medicines information line, which I had found useful in the past when worried about side-effects. The friendly, concerned lady who took my call confirmed that the hallucinations were probably caused by the valproate, but strongly encouraged me to go to the Duty Team as she felt that I could not be left to continue in such a state of distress. So we got in the car and drove to the hospital. I went to reception while my partner went to look for somewhere to park, and the receptionist gave me a form to fill in. It was two sides long, and requested a lot of information that the Trust already held about me (address, next of kin, clinic attended, consultant, etc). In my agitation, I really did not want to have to think about how to describe my religious beliefs or sexual orientation – although I understand completely how critical this information is to good care, I simply did not have sufficient wherewithal answer these questions meaningfully when in crisis. At the end of the form there was a free text box where I was supposed to write why I was presenting to the Duty Team today. I’m not sure what I wrote. I know the handwriting looked nothing like mine. I know some of it was in capitals. I know I mentioned hallucinations and suicide.

I handed the form in just as my partner arrived. We were asked to wait in the reception area, which had only three seats, two of which were already occupied by a service user and her nurse who were waiting for a taxi. For some reason, the automatic doors were fixed open, so we all stood/sat in the cold the whole time. I overheard someone say my own consultant was on the ward, so I really hoped I might be lucky enough to see him. After maybe 20 minutes, a nice-seeming nurse came out and said that having read through what I had written on my form, I really needed to see a doctor (well, yes) and that she was going to find out whether one was available – my partner and I were both disconcerted that this appeared to be an if rather than a when.

After a further wait of 20 minutes or so, during which I was tapping my fingers and jigging my knees to try and control the physical agitation, and singing vocal exercises under my breath to try to combat the music inside my head, the nurse appeared again. She had found the doctor, who was ready to see me in an interview room (the room was nice, but smelled strongly of “hospital”). The doctor began to take a history. This process was continually interrupted by one or other of her mobile phones going off, which made trying to construct a coherent narrative out of my situation even harder. My general impression even when she was not on the phone was that she was not paying attention to the details I had told her, so she got some of the chronology of what I was saying wrong, adding to my agitation and distress. There was very much a “checklist approach”, a feeling that she had learned a rote list of questions in a fixed order, and she asked some of the later questions even though it was information I had already provided (again, adding to my feeling that she was not hearing me). The questions were blunt and closed. Did I still have thoughts of harming yourself? Yes. Did I still have thoughts of taking my own life? Yes. Yes! Why did she think I was here? The doctor then went to find my own consultant, and we were left with the nurse, who could not have been more different. Her tone and body language suggested warmth and empathy and I loved her for the fact that she found us a sofa and a glass of water while we waited again.

My consultant arrived and agreed at once that the hallucinations were a rare reaction to the valproate and I should come off it immediately. I said that I had no idea what my mood was other than “overwhelming” and the doctor suggested that it was a “mixed mood state” – all of the energy and agitation of a bipolar high, but expressed through panic, irritation and distress, rather than euphoria. My partner told the team that he would be around all weekend and the early part of next week, so I was sent home with a prescription for stronger antipsychotics, urged to try to restore my sleeping pattern and continue with my regular psychology sessions, and reminded that the Duty Team were there at other times if I needed further support.

Was this what I wanted or what I needed? I’m not sure. I didn’t want to be admitted, but I was at continued risk all that weekend. The antipsychotics were so sedative that I missed out on anything I might have enjoyed all weekend and my mood dropped further, while the agitation increased, if anything. I began to feel more and more convinced that my only options were between being unmedicated and being unable to cope with my bipolar moods; being on valproate and tripping until I was out of control; or being on antipsychotics and having no quality of life. Looking at life this way, my suicide plans became more concrete and tangible. Last Thursday, just before I hit crisis, I remember watching a toddler doze in a buggy without a care in the world, and wishing that I could be like that. I didn’t want have to take any more responsibility for trying to keep myself safe, because I was so tired of it. In an ideal world of mental health care, what I would like would be pre-crisis care, somewhere I could check myself in so that the work of making sure I survive doesn’t fall upon my partner’s shoulders. Short-term support to reduce agitation and distress before I get close to taking my own life – yes, medication, but also talking therapies, and the body therapies like massage and yoga which I find so valuable to quiet my mind but I can’t always afford – is a package I would gratefully accept.

About purplepersuasion

40 something service user, activist, writer and mother living with bipolar disorder. Proud winner of the Mark Hanson Prize for Digital Media at the Mind Media Awards #VMGMindAwards
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21 Responses to Keep Yourself Alive

  1. Scary stuff, glad that you’re feeling better (or so I presume from your ability to post!). We too have a brilliant team here for my husband but in an emergency, it’s like pulling teeth and getting nowhere. Which for some reason does really worry me! 🙂

  2. You know, part of the stupidest thing about all your treatment is that if someone is rushed in with life-threatening symptoms of any other kind (i.e. heart attack, stroke, or perhaps involved in an accident) there would be none of this form-filling crap – they’d be sent straight to be assessed for what treatment they needed. Why aren’t mental-health problems treated like any other injury, illness, or disease? You are very very lucky to have your husband around, because all the other services, including supposed emergency services, just seem like a complete joke! So much for qualified professionals – it seems like that nurse had more of the right idea than any of the doctors did!

    One thing that this has made me think of is to do some research on crisis care there is available here in Belgium. Considering how much better my treatment has been so far, it’ll be interesting to see what I find…!

  3. Sile says:

    Thank you , as always, for your honesty and eloquence. I hope that things get better for you and that you continue to get the help you deserve from more than your partner and that kind nurse, but from all aspects of your treatment. Pre-crisis treatment is a brilliant idea and one that many of us could probably sign up for when we see our own spirals coming. Worth exploring further. Hang in there, you are brave and wonderful. X

  4. tigtigs says:

    Totally agree with the above as well. I know how hard a crisis can be, mine normally comes along when my psych is on holiday or on a course. Despite being on new meds I haven’t yet been able to get an appt since September………….and badly need one as I am on Seroquel and having side effects , does anyone else have experience of this one?

    Hope you are feeling a lot better now. My experience of crisis care in the NHS is fairly appalling, last time I was booted out of an assessment centre at 6 on a Friday night, being told to cope until MOnday when they would see me again. I remember driving home and feeling like I wanted to crash the car, I didn’t but spent the weekend in bed fantasasing about suicide.

    Take care everyone!

    • Damian says:

      Hi tigtigs, I’m on Seroquel too, was on 100mg for a long time without any problems. As my condition became worse along with cronic insomnia, the psychiatrist tried me on Seroquel XL the slow release which I had a horrendous reaction to, after increasing the dose made it even worse I went back onto normal release at 300mg with no problems. Apparently the normal and modified release work in completely different ways so that could be an option worth looking at when you finally get an appointment

  5. Jemfmurphy says:

    How awful that you’ve had to go through this – your post took me vividly back to six years ago when I too experienced psychosis brought on by a prescribed drug that didn’t agree with me. It took years for me to persuade anyone of what was going on so I’m just so glad for you that your consultant recognised this was a reaction and you were able to stop taking it relatively quickly.

    What rang bells in your piece for me? Not knowing where to turn and how the crisis system worked; being desperate to escape from it all any way I could (including overdose, etc) yet having to wait for an eternity in waiting rooms when waiting at all was agony and only seemed to increase my anxiety; having to repeat my story to people who didn’t seem to listen or take note and, most of all, then having to go home again and live through the consequences on my own until it all subsided. Like you I was lucky to have a partner to take care of me but I really worry for the people I meet who have no-one at home to care for them and I can’t imagine what that must be like.

    I totally agree that it would be so helpful to have a pre-crisis service and especially to have access to things like talking and massage therapies. Maybe at least then the edge would be taken off the worst of it. I agree about Radio 3 – should be on prescription too.

    I hope you’ve started to recover from this awful distress now and are able to relax a bit. I hope your sleep’s coming back to normal too. I eventually found the right combination of meds for me and I’ve been stable for quite a while now and back to work in quite a demanding job, which I’m loving. It all feels like a bad dream. I feel I’ve got ‘me’ back. Hope you get some balance back too, can feel yourself again and can get on with your life. I’m sure you will.

    Take care of yourself and keep blogging. It helps so many of us not to feel alone.

    • Totally relate to what you are syaing, in fact one of the things playing on my mind is – what if I didn’t have a partner? It’s true that they may well have admitted me if I hadn’t had a “nearest relative” (in the mental health services use of the term) to supervise me. But what is scarier is what if I didn’t have anyone to wake up before I even got to the Duty Team? Ideal world again, but I probably needed to go straight from the psychology appointment to my dream of “pre-crisis care” really keep me safe, as I was talking a lot there about feeling suicidal and that I had no options. I am a long way from going back to work etc, and this in itself is a stressor -I feel guilty about my vastly reduced income, and my identity was always quite tied up with my job. Finding it hard to be patient! x

  6. maddie50 says:

    I really feel for you and how I too wish there was pre crisis care available. The last time I felt I was spiralling downward I phoned the out of hours team and told them “my sister hasdied, I feel abandoned and scared and suicidal”. The voice at the end of the phone suggested I shoud sit in the garden and breathe fresh air instead of moping inside.

    Take care and hoping you feel better soon,

  7. showard76 says:

    I know how you were feeling and I haven’t the added complication of medication and hallucinations! Crisis care is appalling, pre-crisis care would be awesome, but just as unlikely to be a reality as good crisis care 😦 Hope you feel better soon xx

    • Agreed, sadly. It just seems to me that if we really want to spend less on acute admissions and medical/surgical care for those who do seriously harm themselves, preventative medicine would be the way forward… When I rule the world, we will have pre-crisis care! And it shall be purple.

      • showard76 says:

        Purple pre-crisis care, sounds awesome! 😀 We should start a movement to get this in place! 😉 xx

  8. Oh, C. I’m so glad you’re feeling safer now. This triggered all sorts of memories for me – the wanting the noise and the effort to stop. To be just able to have some rest. And the reactions of the Crisis Team sound shockingly familiar too – I was told that unless I was on a roof stepping towards the edge, they couldn’t really help me!

    I hope things improve for you, I really do xx

  9. Henry Dunn says:

    It’s often th elower paid staff (nurses etc) who are the most human and sympathetic. Awful that you didn’t get the doctor’s full attention at such a desperate time. As a therapist, I always make sure my phone is switched off, or not even in the same room, so the client gets my undivided attention for a full hour, or however long the appointment is. Pre-crisis care would be great, but the NHS at the moment is very reactive, not proactive. Some psychologists I’ve spoken to, when they discharge a client, give them 4 sessions “in their pocket” in case of crisis. often, just knowing they have this options can prevent people from getting into crisis in the first place. It’s something I’m considering offering to a client who I’m about to stop working with, but who made need my help sometime in the future.

    • I think I got particularly iriritated becasuse I work in another part of the public sector interviewing people in extreme circumstances. I would only even take a mobile phone in with me if I were expecting a very urgent call, and I would certainly not take one in at all if I were assessing someone for the first time. Also I am quite good (I hope!) at not making people feel that I am collecting a rote list of info, even though I actually do need to cover all the bases so that I can complete the assessment document. It was mainly the fact of knowing how little it would take to do it so much better that I struggled with. I reallt hope Doctor 1 noticed how much calmer and more responsive I was when my own consultant (who has so much better people skills) came in, and didn’t put it down to just being because I know him.

  10. JuliesMum says:

    It seems to come down to relying pretty heavily on your “nearest relative” doesn’t it? I will have to vet all my daughter’s boyfriends to see if they are likely to be as patient and effective as your partner. I’m sure she’s gonna love that….

  11. Damian says:

    I’m so pleased you managed to get some help.

    The last time I called my emergency duty team (at about 10pm) I was told to watch a video on you tube and then someone would call me back. The film just made me feel worse. After 36 hours and no phone call I called them back. I was told I was still on their list to be seen but there were more important people ahead of me in the queue!

    From other people I know this type of behavior is common practice for this team. No matter how bad I feel in the future I’ll never use them again.

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