I don't know if anyone is interested but this is my insomnia story that I've sent to the London Sleep Clinic:
My insomnia became a serious problem after the birth of our daughter *** (now 2.5). It seriously affected my functioning and led to my hospitalisation in a psychiatric unit for approximately 2 and a half months. I had no previous history of insomnia or any mental health condition.
The pregnancy was smooth and trouble free. Sleeping difficulties towards the end of pregnancy were mild and usually related to needing the toilet. I would get back to sleep quickly after waking in the night.
The birth was a traumatic, shocking experience. I had a feeling of a loss of control when my legs were put in stirrups and I was not allowed to take them down, despite agonising cramp in my legs. I have a memory of my voice becoming very small and not being listened to. I felt like my bladder was under enormous pressure, thinking it was going to burst. I was begging the midwife to help me relieve my bladder but she kept saying everything was fine.
I had a post-partum haemorrhage requiring repair in surgery and needed a subsequent blood transfusion of 2 units 5 days later. The tear and the pressure on my pelvic floor led to complete urinary incontinence, a highly stressful and unexpected complication. Before the transfusion I felt very weak, breathless and dizzy and became very depleted physically.
I had set my heart on breast-feeding but DD was very resistant, hard to arouse, extremely sleepy, and a poor sucker. Despite assistance from a large number of midwives / breast-feeding counsellors and other health professionals, no-one was able to really explain why it wasn?t working. I was apparently ?doing everything right? but the baby was not cooperating.
I was in hospital 9 days. During that time I had very little sleep as the environment was very bright and noisy all the time with babies constantly crying, footsteps, midwives talking loudly. I was constantly disturbed in the night for routine examinations / blood pressure checks etc. The room was extremely hot and I was not allowed to open the window. I was moved rooms 3 times, once during the night despite begging staff in tears not to move me again.
Feeding difficulties persisted at home. DD continued to lose weight. My husband, DH, and I were having to set our alarm every 2-3 hrs during the night as she would not wake for feeds and we were warned by the health visitor it would be dangerous to let her sleep. The regime was crippling. I felt like I went beyond my ability to cope several times. I became highly anxious. At 3 weeks old (Christmas Eve 2007) I had to stop breast feeding DD after a warning from the GP that she may need hospitalisation if she continued to fail to gain weight.
By six weeks old DD was feeding fairly well on formula and sleeping better but gradually my sleep deteriorated. I would lie awake for hours at a time. Eventually I stopped sleeping all together, seeing every hour of the night go by, watching it get light etc. Initially there was no anxiety, it just felt like the normal sleep ?switch? had somehow broken, as I lay there, unable to drift off. However, as I became increasingly exhausted after many sleepless nights, the anxiety about sleep increased. Sleep started to become a bit of an obsession. Because I was so sleep deprived, I started to feel quite ?low? and I had overwhelming feelings of not being able to cope with my baby or any of the normal everyday tasks. I would force myself out for walks but not be able to appreciate anything around me as I was so exhausted.
I went to see the GP who prescribed zopiclone and citalopram. The first night I took a zopiclone I slept like a dream and felt much much better the next day. So I held off taking the citalopram. But the second night the zopiclone did not work and I was still feeling low and anxious so I decided to start the anti-depressants the next day. I took 10mg citalopram at about 8pm. By 10pm I was being violently sick. I was physically shaking with utter terror, although there was no obvious reason for being afraid. I was up in the night every hour to be sick and developed a tremor.
I phoned the GP in the morning in utter desperation but was told it was all in my head and I needed to carry on taking them. I developed a severe dry mouth which virtually prevented me eating and made my lips cracked and sore. By the third day (a Saturday) I was so very ill that I called NHS Direct who told me to stop taking it immediately. Citalopram felt like the nail in the coffin in terms of my sleep deterioration.
I began strange compulsive behaviours during the day such as pacing, and pulling out hairs on my head. Even though I was aware they were odd, I couldn?t stop as they seemed to bring temporary relief. I would spend hours in the bathroom plucking out hairs obsessively. I also had other weird experiences such as getting a song stuck in my head that went round and round continuously day and night until it became unbearable. TV programs felt too intense, too bright, and I was highly sensitive to being upset by them. My speech became slowed. I struggled to eat. At DD?s 6 week GP check I was in a poor state. I was shaking and felt extremely ill, almost as though I had severe flu. I lay on the floor of the GP?s office and said I wanted to die. I hadn?t slept in days. The GP sent us straight over to A&E with a letter, where we spent 4 hours waiting to be seen surrounded by patients with bleeding wounds etc. I felt terribly dizzy and sick. I felt like there was a siren or a loud buzzing going off in my head. Eventually we saw a doctor who ran through some questions and prescribed hydroxizine (an antihistamine) because of its sedative properties.
In desperation I took double the prescribed dose and drank wine with it to try and send me to sleep. Even though it made me very drowsy I still did not sleep. My experience was that I would close my eyes, but feel like they were still wide open under my eyelids. During this whole time I had the full support of my DH and mother who were helping with DD?s night feeds and doing everything to keep the home going. Despite this support I continued to deteriorate.
I had a post-natal appointment with an obstetrician later on in the week at the hospital, *. But in the appointment the obstetrician became highly concerned about me because I was in a terrible state physically and I could barely answer her questions as my speech was so slowed. She called someone and again I was sent to A&E. My memory then becomes patchy but later on that day I saw the on-call psychiatrist who seemed tired and impatient. She said ?what?s wrong with you? Is it sleep or is it depression?? I was so confused and upset but I had lost my ability to cry. It was like the tears were there but behind a huge dam and they just wouldn?t fall. I was aware that my emotions had become very blunt and I no longer could ?feel? anything. I had lost all sense of pleasure entirely. I remember even the satisfaction you normally get from a sneeze or a yawn was utterly absent. There was a great sense of emptiness, and the lack of emotions was disturbing.
The on-call psychiatrist prescribed me temazepam, irritated by my terror of anti-depressants. She also referred me to the mental health crisis team. It was then another long wait in a hot and claustrophobic hospital room for them to arrive. The room was like a pure white box with no features and was very oppressive. The walls seemed to press in on me. I was panicking as DD needed a feed and I had no formula with me. Also no spare nappies. There were a lot of nurses walking to and fro outside the room but we were completely ignored. There were all sorts of accusing thoughts going round my head about being a bad mother. But amazingly DD remained calm.
The crisis team arrived and asked me lots of questions. There were 3 of them but I couldn?t lift my head so I didn?t know what they looked like. I spent the entire time studying the buckle on one of their shoes. The buckle felt safe somehow which I realise now sounds very strange. I was so lacking in energy that I couldn?t even speak and they seemed very annoyed with me about that, and began to talk louder and slower as if I couldn?t hear. DH was basically interpreting for me. He was a God-send, but they continued to address me, and almost ignored him, despite the fact he was my life-line and was telling them exactly what they needed to hear.
They agreed to visit me at home every day and I would be seen by the crisis team psychiatrist at home in 4 days time. Inside I was panicking as I knew that even 10 minutes seemed like a marathon to get through, let alone 4 days. But they said I should consider myself lucky that I would be seen so soon. One night in desperation I took three times the prescribed dose of temazepam, falling unconscious from 11pm till 1am and then being wide awake again for the rest of the night. They were amazed that someone of my relatively small frame, and being ?drug naive? as I was, could not be put to sleep by this dose. Such was my desperation for sleep, I was terrified what I might do with the temazepam and how I might become dependent on it. I was well aware of its addictive properties. Reluctantly I handed back my supply to the crisis team.
So I spent the next days pacing up and down by the window, desperately awaiting their visits, being desperately disappointed by their impotence, and yet at the same time begging them not to leave, even though I didn?t even want them there. I was a whole muddle of inconsistencies. I was repeatedly asked about whether I had thoughts of harming myself or my baby, or psychotic thoughts or hallucinations, none of which I had experienced. I said ?no, I just need to sleep?. I felt like screaming when one of the workers said ?have you tried a warm bath?? I felt like the only one in the world who had ever experienced this problem ? not even the professionals understood me. Being given such basic sleep hygiene advice felt like a slap in the face. This was not simple insomnia, it was like something had ?broken? in my head. The adrenalin was pumping almost like a ?fight or flight? response. But instead of abating like a normal fight or flight it would be constant. So although I was exhausted, I was at the same time extremely agitated.
When Dr. *** (the crisis team psychiatrist) came I was perched on the edge of our sofa, shaking. He wore a long black coat, was very tall and thin and spoke in a whisper. I remember feeling afraid of him. He prescribed me olanzapine and assured me it would help me sleep. It did not. It made me feel very drugged and ?heavy? but my sleep was still poor. My official ?diagnosis? was a mood disorder, labelled specifically as a ?mixed affective state?. However, all along my experience was that any mood problems were a direct result of the poor sleep and not the cause of it. When I?d had some sleep I felt much happier and brighter. In addition I had no real reasons for being depressed, since I had a happy stable family life with no financial difficulties and a great deal of support.
Eventually I was referred to the peri-natal psychiatrist Dr. ***. She was understanding towards me, but I was once again asked the questions about intrusive thoughts and thoughts of harming my baby, which I found upsetting. In a highly fragile state, these questions felt very accusatory and I began to doubt myself even though I had never experienced such thoughts. She prescribed lofepramine and assured me it worked in a completely different way from citalopram. (I virtually had a phobia of anti-depressants by this point.) Lofepramine however, seemed to have little effect except for giving me the characteristic dry mouth which I found debilitating.
Some more time elapsed, I forget how long but by this time I had been assigned a CPN. accompanied me on an urgent appointment to Dr. . DH was at work. I was in a terrible state. Dr. *** suggested I go for a ?look around? the in-patient mother and baby unit just to see what it was like. Before I knew it, I was admitted. DH had to rush home from work. I think my mum was there, looking after DD but it is all a bit of a blur.
I remember in a haze hearing a voice say ?just give her some lorazepam, it?s cruel otherwise?.
I had some very dark days on the unit. But there was only 1 day when I felt actively suicidal. My mind started ?planning things? even against my will. I had a gorgeous little girl and a loving supportive family yet I had these awful dark thoughts. I feel terribly guilty about them. But I can honestly say they were part of the illness and were not really ?me?. I had a small penknife on my keyring and was thinking about that a lot. Eventually with a shaking hand I gave it up to one of the staff. Of course, I had no pills so that wasn?t an option. The only thing I had unlimited access to, was water.
So I stood by the water cooler and began filling my cup and drinking, filling my cup and drinking over and over for maybe 50, maybe 100 times. I drank and drank until I couldn?t drink anymore and then forced some more down again. I was nearly sick a few times but kept going. Eventually I had a weird experience of feeling underwater ? my eyes became blurred and my hearing was gurgling and muffled. I staggered to the loo and had violent diarrhoea. I then lost consciousness.
The next thing I knew was waking up in my room feeling very groggy and with a shocking headache. My arm felt sore and when I felt it there was a large surgical plaster over the vein in my elbow. Then I felt the other arm and there was one there too. I remember thinking ?how strange, I don?t remember falling? and then ?oh my, did they have to inject me?? I had no memory of what happened. I assumed I had gone to bed that night and woken up the next day after a very heavy sleep. I had actually been unconscious for 36 hours, in intensive care. During that time I had wet the bed, my BP had plummeted and I had been tachycardic. They had been unable to rouse me. The doctors did all kinds of tests but couldn?t find what was wrong. I later found out they had done a brain scan to rule out a brain haemorrhage.
I got up and staggered around, very confused. I went towards the exit but of course it was locked. The staff were all looking at me very strangely and one asked ?what are you doing??. Of course, they had all assumed I had taken an overdose. But my blood tests for paracetamol and aspirin were negative. One of the doctors kept saying ?what have you taken?? But I just said I hadn?t taken anything. I dared not say what I had actually done, I think I was actually in denial myself, I was so shocked at the depths to which I?d sunk and utterly disgusted with myself.
I was put under strict 24hr observation, which was a nightmare as I was watched in the bath, with DD and of course, at night. Trying to sleep with someone watching you is very hard, especially for an insomniac! I wasn?t allowed outside, not even for a walk. I remember sitting in my dressing gown in the kitchen being told to get dressed but being unable to move through a sense of total inertia.
I had my BP and pulse checked about 4 times a day by a machine. My pulse was consistently around 130bpm, and I was told later they stopped using the machine because they thought it was faulty as my readings were always high. However, I knew they were accurate as I could feel my heart pounding all the time. My tremor was quite bad by this point and they had assumed the olanzapine was to blame so I was put on the anti-parkinsonian drug procyclidine. I was starting to find the number of drugs I was on quite frightening, and the drugs to treat side effects of other drugs felt like I was spiralling out of control. None of them seeming to get at the root of my problem, and all of them were bringing problems of their own. Side effects were piling up one on top of another. I was way out of my depth and didn?t know where to turn, aware of a desperate need to talk to someone, but at the same time not knowing what I needed. It is hard to determine which sensations were side effects and which sensations were the illness itself, but one thing was sure, I felt terrible. The only way I can describe it is like having the flu, a heavy, shaky, feverish feeling, only you don?t know if you will ever recover.
The ward rounds were terrifying, sometimes there were up to 10 health care professionals, all staring and scrutinising me. When they started to mention ECT (electro-convulsive therapy) I was very frightened indeed. Eventually instead of ECT I was started on lithium and warned of all the risks and given the various blood tests and an electrocardiogram. I was unconvinced by this prescription as I had never experienced mania and had understood this drug was for bi-polar depression. I was increasingly fearful that the doctors were making ?stabs in the dark? because they didn?t know what else to do with me. I was convinced that I would be the one person they would never be able to cure.
One of the highly stressful elements of the inpatient unit was dealing with the boredom. There were supposed to be regular occupational therapy sessions such as art, creative writing etc. but in my time there I only attended 2 or 3 as these sessions were routinely cancelled. ?Baby massage? sessions never materialised. I would get up in the morning, make the baby?s bottles and by this point it would be about 8:30am. The day would then stretch out before me like a long empty road and I would panic, wondering how I would make it to the end. Looking back I can see that people would wonder why I didn?t take the opportunity to relax, do nothing and enjoy the liberation from responsibility. But I think the answer to that is because I was actually ill, and I was projecting the feelings of stress and boredom onto the unit when actually they were in my head.
I was eventually discharged in May 2008, feeling wobbly, and lacking in confidence but also on the road to recovery, and with the continued support of my family. My mind was still fragile and my sleep was delicate and easily upset. I carried on seeing the mother and baby specialist until DD was 1 year old. During this time I struggled unsuccessfully to wean myself off olanzapine numerous times, fearing the long term side effects, each time failing because of a deterioration of sleep. I eventually came off olanzapine successfully on 4th December 2009 (DD?s 2nd birthday) having been shaving tiny portions of the dose every night for about a year.
I was transferred to the care of the Community Mental Health Team (CMHT) for 3-monthly appointments and more regular meet-ups with my CPN. In many ways I have struggled with the concept that I am now a ?mental health patient? feeling very aggrieved that all this has happened to me, and I now have this label. I have struggled with a sense of being seen purely as a ?mental health diagnosis?, when my subjective experience was that I had severe insomnia, which led to desperation and all the depression-like elements that came with that desperation. Seen through a diagnosis I became a person who cannot experience normal emotions of happiness and sadness without it being seen as part of my ?condition?. I have felt a sense of powerlessness in the mental health system. At the advice of my CPN I wrote a letter explaining how I felt which was never even acknowledged, let alone replied to. This led to a feeling of passivity rather than being an active participant in my care.
I have had a number of ?episodes? of insomnia since, some lasting only one or two nights, some lasting as long as two weeks. I have tended to take zopiclone, but some nights it does not work and I have a very strong fear of getting dependent on it. My experience is of excess anxiety and worry which progresses to digestive problems, diarrhoea, nausea, excess acid, and adrenalin. This becomes so engrained and automatic that it is very hard to control. I feel my body try to fall asleep and the moment I start to drift I get an instant jolt of adrenalin. This can happen 30 or 40 times in a night, sometimes stopping me sleeping altogether. After researching beta-blockers, I was prescribed propranolol by the GP to help with this, but the effect was limited. I tried many different strategies to try and help myself, including self-help books, exercise, positive sleep thoughts, a course of private CBT sessions, cutting out caffeine and alcohol, warm baths, thought exercises but none seemed to work. I had to just wait for the adrenalin to settle down again which could take many days.
In June 2009 I was prescribed 15mg of mirtazapine per night. The psychiatrist was still working to my original diagnosis of ?mood disorder? and believed I needed to be on an anti-depressant. Since lofepramine wasn?t working for me, I reluctantly agreed to try mirtazapine. It had a very positive effect on my sleep initially and for the first two weeks of taking it, I was asleep by 10pm and waking around 7am. However, after two weeks this side effect wore off. Nevertheless I believe it had an overall positive effect on my mood and reduced my anxiety. I have a concern that coming off mirtazapine will lead to a deterioration in my sleep once again.
Relatively minor stresses seem to trigger my insomnia off again e.g. a minor car accident (no injuries) or a job interview. Rather than one bad night, the insomnia would continue for night after night even when the stressor had been dealt with (e.g. job interview over).
Nevertheless I have experienced more and more long periods of feeling settled, happy and sleeping well. I had been sleeping well for about 6 months until my latest episode in May 2010, which lasted approximately 2 weeks. But when I do have an episode now, I find it very hard to cut it short.
I am now at a stage where I would like to come off my medication as we are considering the possibility of a second child. However, I have concerns about this as I believe I have become not physically dependent, but psychologically dependent on mirtazapine for my sleep. In addition, I have not been enthusiastically supported by the NHS in this decision. In many ways the NHS seems to set up barriers to coming off psychiatric medication. For example, being inflexible in the dosage they will prescribe, being unwilling to offer advice over the best way of reducing medication or even giving conflicting advice depending on who you ask. I have even been told repeatedly in appointments that I was ?very very ill? and ?you will probably have to be on medication for the rest of your life?. So having gone into appointments feeling fine and positive, I have sometimes come out feeling negative, stressed and anxious. Nevertheless, it was agreed in January 2010 that I could gradually start reducing my lithium dose. As I have reduced my dose I have experienced no noticeable effect on either my sleep or my mood.
What worries me now is the approach I should take to having a second child. Is it irresponsible to have a second child? Might this all happen again? What if I get insomnia during pregnancy and I cannot take anything for it? What if they insist on me taking medication during pregnancy against my will? What if my baby suffers as a result? How can I effectively get off mirtazapine without my sleep deteriorating?