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!

5 Graphic Novels about Mental Illness

In no particular order:

1. It’s all Absolutely Fine by Ruby Elliot
Ruby speaks through comedic cartoons about what it’s like to live with mental illness. Her strips cover everything from depression, to anxiety and eating disorders. Ruby herself has been hospitalised for mental health reasons in the past and her battle with recovery is evident throughout. The bits I really resonate with are her sources of comfort and hope (often pets). It’s a wild ride from beginning to end, but that’s fitting when talking about mental illness.

2. Fun Home: A Family Tragicomic by Alison Bechdel
Fun home focuses on Alison as she reflects on her life and relationship with her father after his apparent suicide. It’s a relationship fraught with friction and contradictions as she struggles to affirm both her love and frustration for him throughout the years. Other than the issue of suicide, this graphic novel caught my eye because of its depiction of OCD, which Alison first developed as a child. We see her anxieties turn into rituals and those turn in to compulsions. She uses excerpts from her old diaries to demonstrate this to great effect. This is by no means a comedy but it is a raw and true account of life with less than perfect parenting and the inner secrets everyone has in their closets.

3. Hyperbole and a Half by Allie Brosh
This is one of my all time favourite graphic novels. Hilarious throughout, it’s the perfect solution if you’re looking for a book that can be funny about mental illness. There’s a key turning point in the book where Allie realises her depression made her so apathetic, it could be used almost as a super power. It’s something that comes back to me regularly when I am low.

4. Marbles: Mania, Depression, Michelangelo, and me by Ellen Forney
When I was first diagnosed as having Bipolar 1, I sought out several books to help me understand it. The funniest, was this. Ellen Forney’s graphic memoir takes us through her journey of living with and being diagnosed with BP1. Funny, sad, informative and rich in detail, this really cushions the blow after your own diagnosis.

5. Rock Steady by Ellen Forney.
Okay, so I cheated, Ellen Forney is in here twice, but her books are both brilliant and each in here on their own merit. Expanding on some of the more informative elements of “Marbles”, Ellen creates a wonderful handbook that works, not just for bipolar, but across all types of mental illness. Her acronym of “SMEDMERTS” (sleep, meds, eating, meditation, exercise, routine, tools, support system) outlines everything to need to do to give yourself a fighting chance (although, personally, the meditation’s not for me). Plus you get merit badges for each part of the book you can achieve!

What is an ARMS?

ARMS stands for ‘at risk mental state’ and is a term used to describe people who are at a high risk of developing psychosis. The aim of identifying people with ARMS is to provide intervention as early as possible in order to decrease the severity of any psychotic illness that does occur and/or decrease the likelihood of one developing. Early Intervention in Psychosis services are more and more taking on people who have an ARMS. Sometime the terms ‘prodromal psychosis’ or “prodrome” are used interchangeable with ARMS, though there are subtle differences.

Who has an ARMS?
People are deemed to have an at risk mental state if they don’t meet the diagnostic criteria for any psychotic disorder but show the following signs:

  • Unexplained distress and agitation
  • Are within the age range when psychotic symptoms are most likely to occur
  • Recent decline in social functioning (e.g. social isolation)
  • A strong family history of psychosis
  • Very mild or brief (transient) psychotic symptoms
  • Having associated conditions such as Schizotypal Personality Disorder

What can be done to treat people with an ARMS?

  • CBT for psychosis has been shown to be very helpful in decreasing both distress and the number of people going on to develop a psychotic disorder.
  • Integrated therapies or counselling
  • Sometime it’s deemed appropriate to start an antipsychotic medication early on in order to prevent psychosis occurring.

I think ARMS is an interesting development in the world of mental health and it poses a number of questions. Like is it possible to identify risk factors for other disorders? Could we be looking out for early markers for mood and anxiety disorders also? Also, although this approach allows for early detection, something that’s of particular importance with psychosis due to the cognitive decline linked to it, is it right to start people who may never develop psychosis on potent medications like antipsychotics?

I hope this has been helpful. What do you think about ARMS?