Life update #6

There’s a couple things I’ve mentioned in previous post that I have updates on!

  1. The Dr who stopped my diazepam (Valium) has been told by the consultant to go much much slower when weaning me off it. They’re currently taking it down a mg every 2 weeks, which is what I tried to tell her to do. Anyway, that’s all sorted, thank you all for your support whilst I ranted about it.
  2. I was stressed at one point because I hadn’t seen my diagnosis written down, but the Dr here has my notes and when I asked for some clarity, he said: ‘you’ve been given a diagnosis of Bipolar Disorder and Schizoaffective disorder’ (which basically boils down to SZA-BP type). It must be in my notes because I haven’t seen him for over a year. He was great about it and even said if I want more clarity then he can talk to me more about my diagnosis and see if we can work out together what fits me best – which is such a kind and great approach. So that’s calmed me down also.

Updates on the mental health unit I’m at:
I will have been here a week tomorrow. Although I’m really struggling to settle in, it’s pretty amazing here. The Occupational therapists are really hands on. Mine drew me up a really great care plan and another helped me cook brunch one day. You also get a named nurse who do 1-to-1s with you. Mine’s alright, nothing wrong with him but maybe a little lacklustre! The rest of the staff are great. There’s a walk in the park available every morning, 2 groups a day which can range from anxiety management, life skills, music, creativity, brain training to self esteem and stress busters. There’s a cooking group nearly every day with different things on different days like soups and smoothies on a Monday and baking on a Tuesday etc. Every day there’s also a relaxation group but I’ve not been – I have nervous energy and bounce my legs constantly which irritates people trying to relax and makes me anxious enough to not be able to relax. The weekends are very quiet. One member of staff told me if you’re working towards your recovery all week, you should get the weekends off. Which is fair enough and most people are on leave anyway.

So yeah, I’m struggling to settle but the place itself can’t be faulted, it’s much better than an acute ward with no therapies whatsoever and boredom everyday!

Medication Monday: Melatonin

What is Melatonin?
Melatonin is a natural hormone your body makes that helps you fall asleep. In some people, this is not produced enough or, due to insomnia, they need some help to go to sleep. Sometimes it is used for a sleep condition called ‘delayed sleep-phase disorder’ whereby someone has later sleep patterns than others e.g naturally going to sleep and waking up much later than is typical. Melatonin (in the UK) is licensed for use in children and those over 55. It can be hard, therefore, for young adults to be prescribed it but it is sometimes used “off-label” for sleep.

My experience with Melatonin
I was initially give melatonin as a a child, so it being prescribed wasn’t an issue. I was under the child and adolescent mental health service in my county at the time and the psychiatrist there thought it would be useful in tackling my long-standing sleep issues. It is relevant to note here that I have ASD and autistic people often have trouble sleeping! So did it work? Eh, a bit. I can’t say it worked really well but it might have been somewhat useful in getting me to fall asleep quicker. It’s come in more helpful when prescribed as an adult. I don’t actually remember who gave me it, which suggests I was in hospital? I also don’t remember when they doubled the dose, but I find it much more helpful for sleep at this age and this dose, although it’s hard to tell as I always take a benzodiazepine at night also. I still take it nightly and haven’t be tempted to skip a dose so hopefully it’s doing some good, I’d certainly prefer it to other medications used for sleep that are less natural and have more side effects, such as antipsychotics, (more) benzodiazepines and hypnotics.

I’m quite happy to take my Melatonin at night and drs have never issued any warning against it so I feel comfortable doing so! Has anyone else been on Melatonin? Was it helpful? I’d like to know because I’m not 100% sure myself!

Book Review: Wishful Drinking by Carrie Fisher

I thought I’d start writing review for books I’ve read that have a focus on mental illness. First up is Wishful Drinking by Carrie Fisher, a well known sufferer of bipolar disorder.

I love Carrie Fisher, and I’m all for the way she so candidly talks about mental illness but the book itself was kind of disjointed. Maybe in a way that’s fitting, considering the subject matter, or maybe it was the way Carrie wrote as if transcribing from one big monologue, complete with numerous digressions. Later on in the book, she mentions that she’ll now remember her one-woman show because she’s ‘written it down’ and then everything made a lot more sense. This is sort of a written down memoir-based comedy set. It was definitely funny in parts but I think would be a lot more so if performed/spoken aloud.

Despite this, it did have several great quotes, one of them being from the author’s note:

At times, being bipolar can be an all-consuming challenge, requiring a lot of stamina and even more courage, so if you’re living with this illness and functioning at all, it’s something to be proud of, not ashamed of.
3 out of 5 stars

Life update #5 (and a bit of a rant)

I’m four days in. It’s was a little rough to start with, mostly due to a Jr Dr, screw up. I take a benzodiazepine (diazepam/valium) every night and have for almost two years. If you were to ask why I take it, I’m not sure I could give you a straight answer, I’ve been on it at various doses for a whole bunch of things – anxiety, sleep, epilepsy, catatonia. I just know that it’s built up in my system and it’s a drug known to have bad withdrawal effects if stopped too soon, especially at high doses or when someone’s been on them for a long time.

My first night here, the Dr I saw yanked me off it. No warning, I only found out when the nurse in the clinic for nighttime meds told me. I said it should be on my meds card but, being a nurse, he couldn’t change the card himself. I asked him to call the dr (she had messed up my dosage of another med to so needed to be contacted anyway) but she wouldn’t put me back on diazepam. The night was very rough, I couldn’t sleep and was angry. At 2 am, I begged them to call her back to put it right. They rang, she refused. I got 1-2 hours of sleep.

The next morning she came onto the ward and called me into the clinic asking “what’s all this about Diazepam?”. I explained again that I have been taking it for a long time, that the head pharmacist (of the service she works for) said it would cover me for epilepsy whilst I went off another med. She dismissed this saying it wasn’t in my neurologist’s notes. I said I wanted to titrate off it slowly (I have tapered of large doses of diazepam before, usually 1mg every 1-2 weeks). She said she would give me under half of my original dose for 5 days then take me off it completely. There was no room for argument and I didn’t sleep well again.

So yesterday I had my ward round with the consultant psychiatrist. When he heard about the diazepam and how long I’d been on it, he immediately said I would need to taper off it very slowly, maybe even into the community and put me straight back on my original dose, which I got last night. I was so so relieved, and a little bit mad at the other Dr…(ok more than a little bit).

Otherwise things are going well, the main Dr is very nice, all the staff are nice, not had a problem with the other patients (but I’m very shy so I’ve not really spoken to them). They have the Doctor here every two weeks and the Jr doctors a few times a week. There are a few nurses on day shifts as well as the managers (senior nurses) and a nurse on in the evenings. There are a lot of really nice healthcare assistants, a psychologist, an OT that will 1-on-1 with you a few times a week, and two peer support workers. It’s an amazing place – so many more resources than any acute hospital I’ve ever been in and much friendlier too!

I’ll go into more detail in another post but thanks for sticking with me through that rant!
Hope you’re all well!

A note on "recovery"

I feel like my mental health recovery has plateaued. I was acutely unwell and in hospital at easter for 7 weeks and before I could fully recover from that I become unwell again just 3/4 months ago (but avoided hospitalisation). Afterwards I fell like a shell of my former self. My mind kept going blank, I couldn’t concentrate, I was apathetic, I was isolating and wasn’t enjoying anything. This is when the referral was made to the inpatient rehabilitation ward.

Then I started making little strides; I could concentrate on a tv program if we cut it into 5 parts, I enjoyed a McDonalds meal (not recommended for other people who also have high cholesterol, oops), I started to worry about university (showing my apathy wasn’t all consuming). I expected to make further strides, to be able to read again, to watch a film, to go out and know what to say in social situations…but it didn’t come. In fact, the most impressive thing I’ve managed to do is this blog, which I’m very pleased with.

I t feels like I’m on a straight line instead of heading up and progressing. Then I remembered what my care coordinator had said to me recovery isn’t linear. There are ups and downs, dips and rises, plateaus and sometimes you might even feel you’re going backwards. That’s okay. It’s ok to feel down sometimes or to feel like progress has stopped. That doesn’t mean you’re not going to get better, that you won’t recover.

So I’m trying to tell myself it’s fine if I’m plateauing, in fact it’s normal and expected. I’m still recovering, and if it takes a while, that’s okay.

Life update #4

So I thought I’d be gone longer than this, but it turns out, getting my laptop and internet sorted was pretty easy going, so I’m online and hooked up.

I’m here, it feels very weird. I miss home but I know that’s not the right place for me currently. I’m used to hospitals so it doesn’t feel that unfamiliar (it helps I know two members of staff) but it’s a strange mash up of a house and a hospital. It’s called _______ house, you have your own room (shared bathroom and kitchen), but there’s still “the clinic” where you take your meds in a little dixie cup and obs every however many minutes. I’m only on hourly checks though which is good.

I’ve already done a stress busting group (that was basically mindfulness), which I was too anxious to get much out of, and a member of staff escorted me to the local shop to pick up some food. I just grabbed randomly at the shelves, I don’t even know what I bought – I haven’t been out without my parents in a looooong time. I think I bought pasta sauce but no pasta (great).

I even got hesitantly involved in a group cooking activity (a failed attempt at an apple cake). Now I’m in my room with a pounding headache, having not eaten all day and waiting for the doctor to come take bloods etc. Thank you so much for all your well wishes, I will reply when I’m in a better headspace!

Possibly signing off for a while

I go to my residential inpatient placement tomorrow (the MH rehab unit I’ve been talking about). I am very nervous – new people, new schedule, new challenges. Luckily in the UK, and especially at a place like this – most relaxed than an acute ward, I’m allowed my phone!

I write my blog on my laptop and though I’ve been told I can bring it (hooray!), it could take a few days for them to check it in and make sure it’s safe for fire hazard reasons.

So I’m off on a new adventure. I feel very mixed about it and I will update you all as soon as I can!

Medication Monday: Lamotrigine

Lamotrigine (Lamictal) is from a class of drugs know as ‘anti-convulsants” or anti-epileptics. They are also used regularly as mood stabilisers for conditions such as bipolar and schizoaffective disorder. No one quite know how they work for mood but they are considered first-line treatments along with lithium. Lamotrigine needs to be prescribed by a specialist, such as a neurologist or a psychiatrist.

I’ve been on lamotrigine for a loooong time, far before I had a manic episode. The main reason for this is that I have epilepsy. I remember being in the neurologist’s office, I’d just been diagnosed with temporal lobe epilepsy and the appointment passed in a shocked blur, I’d only began having seizures in my very early 20s. He handed me over the medication with a big warning to titrate up slowly and watch out for rashes. Most people on lamotrigine have heard about the dreaded rash. Although it is known for causing benign rashes, some people develop what is known as Steven-Johnson syndrome, which is characterised by “flu-like symptoms, followed by a painful red or purplish rash that spreads and blisters”, and can be fatal. I started small and inched up over time.

I noticed some side effects pretty much straight away, some itchiness (but no rashes), some major dizziness and double vision but they settled pretty quickly. What seemed to linger though, and was the most problematic, was brain fog. I started to forget how to spell things, I couldn’t talk fluidly, my memory was shocking and my concentration suffered. Although I don’t know how I’d be without lamotrigine now, it does seem to have settled over the years (though I still sometimes get stuck on words!).

Originally put on a high dose of lamotrigine for seizures, these settled at 300mg. What was apparent though, was that it wasn’t stopping my mania. Lamotrigine is a good mood stabiliser but it’s more effective in treating depression than it is mania (whereas lithium is the other way round). I was put on abilify for its antipsychotic but also mood stabilising effects and put up to 350mgs. I haven’t had mania since being at these doses so I suspect they’re working, though I don’t know which one more!

Oh, and just a side note; these are the most vile tasting tablets I have ever taken in my life, and they get stuck in your throat.

Does anyone else take lamotrigine? How do you find it affects you?

5 things you learn in psychiatric wards

This post was inspired by Caitlin who was inspired by Cassandra! I thought, since I lived in the UK, I could offer a different perspective.

  1. Even if you go in as a voluntary patient you can’t just leave
    I’ve seen that some people in the US can check themselves out against medical advice. To leave the hospital in the UK, you have to be signed off by the consulting psychiatrist, and if they don’t agree to you leaving, they can recommend you be sectioned (held involuntarily).
  2. If you don’t bring clothes with you, get used to wearing hospital PJs and the notorious socks!
    Some people get brought in by the police in particular or transferred to a hospital from a different area and usually have to walk around in too big PJs that for some reason have a gaping hole in the crotch area.
  3. In the UK you usually get to keep your phone!
    This always seems to blow the minds of US patients who usually have theirs confiscated. However, phones can be removed if you break certain rules, such as taking pictures of other people, or making harassing calls. Mine has twice been confiscated for making calls in the middle of the night.
  4. If you refuse medication, it can be forced upon you.
    This is only the case if you are detained under a section. I once had an argument with a guy from the US who held that Drs could give short acting sedating injections but not administer a long-acting antipsychotic against someone’s will. Well here, if they deem it in your best interest, they certainly can! I’ve seen it done and it was set to happen to me, until I agreed to have it without restraint (as I had no option either way).
  5. Psych wards are for stabilisation only
    I hear a lot about the groups and therapy offered in US psych wards, and it might be different in other parts of the UK, but of the three hospitals I’ve been in, one did a half hearted music group once a week and the rest of the time we were given a bunch of crayons. There was no therapy, no groups, no activities. You colour, stay in your room or watch TV and be unwell. They deal with keeping you safe from yourself and others safe from you and medicating you so you can leave again. They only take you even voluntarily if you’re an immediate danger to yourself or others.

What did you learn from being in a psychiatric hospital? Does it differ from the UK experience?

What is Catatonia?

Next up in the ‘what is…’ series is something I’m intimately familiar with: catatonia.

What is Catatonia?
Catatonia is a state of advanced psychomotor retardation, whereby a person (usually) enters “stupor” which involves being unresponsive to most stimuli, usually with an impaired level of consciousness. Someone with catatonia may show signs such as:

  • Cataplexy or a posture held against gravity. One example of this is how some people with catatonia lay down but keep their heads slightly raised as if on an invisible pillow.
  • Waxy flexibility, whereby someone can position the limbs and body of the catatonic person, who then maintains that position.
  • Muteness
  • Negativism – where, upon given a command by someone, the person will instead do the opposite or otherwise not respond
  • Posturing, similar to waxy flexibility but the person takes a sudden and active roles in positioning themselves against gravity
  • Stereotypy – frequent and repetitive actions that serve no real purpose (often seen in autistic people)
  • Agitation
  • Grimacing
  • Echolalia (imitating the speech of another)
  • Echopraxia (imitating the motions of another)
Two people with catatonia related to schizophrenia

There are three subtypes of catatonia, each more dangerous than the last.

  • Stupor: as shown by the picture above, this is the most recognised form of catatonia, which involves the absence of motor activity and symptoms such as posturing and mutism. This is associated with dehydration and nutritional deficiencies and can lead to renal failure. It may require feeding tubes and/or intravenous fluids.
  • Catatonic excitement: This state is characterised by extreme purposeless movement, excitement and agitation. It may involve psychosis. Catatonic excitement is considered to be extremely dangerous to the individual with fever and hyperthermia being common.
  • Malignant catatonia: This involves autonomic instability, fever and delirium. If not treated correctly and quickly, it is often fatal.

Who gets catatonia?
Catatonia was originally highly linked to schizophrenia, however the causes of it have broadened in recent years as a result of clinical experience. It is now associated with.

  • Schizophrenia/psychotic spectrum disorders
  • Depression
  • Bipolar disorder
  • Autistic spectrum disorders

How is it treated?
The first-line treatment for catatonia is benzodiazepines, such as valium (diazepam) and ativan (lorazepam). This seems to work particularly well for stupor as it relaxes the muscles and some doctors use the effectiveness of this as a diagnostic tool, e.g. if it stops when given benzos, it’s probably catatonia. This is usually given via an injectable as many will be unable to take oral medication. The next stage if benzos don’t work (and usually first-line for malignant catatonia) is ECT (electro-convulsive therapy).

My experiences with catatonia
I have had catatonia twice, which puts me at risk of developing it again. Once before onset I was very depressed, in both cases, I was also psychotic. I displayed stupor, mutism, waxy flexibility and cataplexy. Because catatonia alters your level of consciousness, I am not able to tell you much about what it was like to have. I have been asked “what does it feel like?” but it’s almost like going to sleep for a period, although I have hazy recollections, snapshots here and there of what was going on – a kindly nurse whose hand I couldn’t relax enough to stop gripping, the hospital walls which I must have stared at for hours. In both cases I was hospitalised and in both cases I responded very well to benzodiazepine treatment, which I was given three times a day. It was like waking up from a weird dream. My body ached all over from being held in weird positions for a long time, and I was confused and disorientated. My psychosis also needed to be treated afterwards. In some ways I am lucky to respond so well to drug treatment but I always fear that if there’s a next time, I will wake up after being given ECT without my consent.

As always, I hope this was helpful and informative. If you have any questions, don’t hesitate to ask!