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.