I have spent ten years of my life in psychiatric hospitals/secure units. AMA

[Fermatslittletheorem]

I'm bored, should be revising for exams.

So go ahead, ask me anything!

@woodcutbirds Wow, that is a big dream! Good on your son for having such great aspirations!

Obviously I would most like a drug that worked but had no side effects, but that is unrealistic. The main side effect that most people, including myself, struggle with, is the weight gain. The drugs seem to make you crave carbs so you eat lots. Plus the sedating effects make you too tired to do much about it.The weight gain is, in my experience, the main reason most people don't want to be on medication. So that would be the first side effect to get rid of, especially since there isn't another drug to counteract it.

Other side effects there are other drugs which you can take in addition to help to deal with them. For example for restlessness and dystonia I take procyclidine which helps a lot. So those side effects would be less important to get rid of (still annoying though!)

All the antipsychotics seem to have similar side effects - weight gain, over sedation, restlessness/twitches. Your son would be a very rich man if he could deal with these! (I know he's not in it for the money, but still!)

I would like to be on a medication that didn't interfere with normal life, even if this was at the cost of having to cope with some symptoms of the illness - it's a fine balance but I'd rather have some symptoms but fewer side effects. I know it sounds like I could have that just being on a lower dosage, but, for me at least, dosage doesn't seem to make much difference to side effects. They seem to be all or nothing.

How could I support a friend with a similar illness? They have also been in and out of hospital for a number of years. They believe they would be better off their meds, but the doctors say otherwise. (I think they may also be on some kind of treatment order as well). I don’t always know what to say.

What is the one thing you would want people to know about schizophrenia?

@LizzieMacQueen Yep! Love maths :)

@HopelesslydevotedtoGu (love the username!) If I had been treated better as a teenager I think I wouldn't have been in hospital so long as an adult. I was treated as if I was just making it up for attention and/or it was just a phase. If I had been listened to when I said how bad things were, and helped, then I would have had a much better prognosis.

I've never been in a crisis house but have had the crisis/home treatment team. However, I have always been admitted by them so they have never stopped an admission. I have also seen them when I have got out of hospital (when I haven't needed them!). So I am not really able to judge. I have heard some horror stories of how badly they have treated people (I recently met one lady in hospital who had basically been goaded into jumping off a bridge) so I think there are definitely improvements to be made.

If they are good then definitely home treatment is more therapeutic than admission. Admission should be a last resort, as it is. It is better to have your freedom (where possible) and power and control over your own life, rather than being in hospital where you are stopped from doing a lot of therapeutic things, and often aren't allowed to make small decisions. That is really frustrating. Plus there's the boredom. So I think community treatments are much better than hospital.

I don't know why crisis teams seem to be so notoriously bad. Maybe because they are gatekeeping hospital so they want to tell you that you are fine. If they treat you with kindness and respect then they are great.

You know, actually you get more time and attention from the home treatment team than in hospital in most cases. They have more time to sit with you and chat with you than in hospital where everyone is running around trying to get everything done, or in the office doing paperwork. So you can talk through problems more easily with community treatment, especially if they do long visits and come out often. Also you can phone and talk to someone at anytime. It is often hard to find someone to talk to in hospital.

So the answer is yes, I think home treatment can often be more therapeutic than admission. I have had some bad experiences but not many as I tend to get admitted pretty quickly, and when I see them after hospital it is just to supervise medication or have a five minute chat, so I can't really judge them.

@Mmmmbrekkie To be honest, no. I am nearly 36 and have not had a boyfriend since my teens. I am not really a children person - I love my 3 year old DN but she wears me out in ten minutes! Also I wouldn't want to pass anything on.

@ColdTattyWaitingForSummer You don't have to say anything, just being there and listening and understanding is great. Your friend will know that you care about them and want to help them, and that is so important. They are lucky to have such a great friend as you.

Maybe talk through why they want to be off meds, and gently explain why you might disagree. Probably they just want to vent about it - especially as there is nothing you can do to get them off meds. Don't immediately jump in with "don't be ridiculous", even if you think that! Just listen to their complaints. And see if there is anything you can do to help alleviate the problems with the meds. For example, if a problem is weight gain, maybe you could go for a walk with them every week, or swimming or something.

Don't worry about not knowing what to say, your friend won't be expecting you to fix them but just to be there for them. The fact that you care is great. It's good to have visitors in hospital too. Maybe take in some little bits for them when you visit, if you have the means. That means a lot when you are away from home.

Thanks again for being such a lovely friend

Thank you for your advice I will get it checked out

Hi the pain is more the right side of my belly and is uncomfortable, near my hip bone, so I definitely should go to doctors just it's hard to get an appointment.

@Gingerkittykat That people with schizophrenia are capable of living normal lives and you shouldn't write them off and avoid them! It's not all like the media shows.

@Mizmint have you tried phoning 111 if you can't get an appointment? They may advise you to go to A&E. I am afraid I know very little about these types of things. You might want to make a separate post on a different board. Then you might find people better equipped to give advice.

Thank you for answering my question and for this AMA in general

The negative symptoms... how do they differ from regular depression? Do you remember what you were feeling/thinking in those phases and why you atopped taking care of yourself etc.?

Also if schizophrenia is an excess of dopamine and that's a happy chemical, does anyonr know why does it make you (over simply put I know!) unhappy?

Do you think schizophrenia and bipolar are similar? That just occurred to me when thinking about the negative and positive symptoms - seems similar to when people have depressed/manic cycles, esp as mania can include psychosis. I am no expert though and apologies if I offend anyone with that over simplification.

Brilliant AMA, thank you Fermat. One of my closest friends has Bipolar Affective Disorder and although she’s been really well for a long time now she has had periods of being extremely sick. One thing she always says is that although it’s great to have friends looking out for her, it’s important for them to realise that not every mood can be attributed to her mental health. One friend of hers used to automatically assume she was becoming unwell if she was a bit grumpy or in a really good mood when actually she was completely fine from a MH perspective!

All the very best, Fermat and good luck with your degree.

@OutwithMyRemit Negative symptoms often seem like depression to an outsider with lack of motivation etc. I know recently everyone was telling me I was depressed (I was off meds) but I didn't think I was as I didn't feel sad. I just couldn't be bothered/couldn't see the point of washing or cleaning or whatever. To be honest, the medication doesn't work particularly well for my negative symptoms, so I never make much of an effort. But when things are getting bad I slip further. For example in December I wasn't heating my house because I didn't think to. The crisis team were coming in my 9 degree house and telling me to put the heating on but it was just too much effort or I thought it was pointless or something. It's really hard to explain. People are often diagnosed with depression when they have negative symptoms, before the positive symptoms start to point to schizophrenia. However, negative symptoms include being flat or emotionless whereas with depression people may be more likely to cry etc. Sorry, I am not an expert on depression - I know some people are flat though.

There is a condition called schizoaffective disorder which is a combination of schizophrenia and bipolar. You can get just the depression type too. It is hard to distinguish between schizophrenia and schizoaffective disorder, but I think schizoaffective disorder is more likely to be diagnosed when there are clear highs and/or lows.

You are right though, it is very hard to work out what diagnosis someone should have, and it is often changed in a person's lifetime. I have seen one doctor who, from the questions he asks, seemed to think I have OCD! I don't and have never been diagnosed with this or had any indication of having it. It's hard with mental health conditions as there is no blood test etc. to diagnose with.

Hi Op. thank you for your interesting thread. Sorry if you have had enough of the questions. I have one more which you don't have to answer, of course.

A female relative has been in a mental health facility for many, many years. There is no talk of her ever coming out. Since she's been there she has told of how she's been sexually assaulted (it sounds as though it was ongoing for some time). She said it was by a member of staff. There is a witness to confirm she was sexually assaulted by another patient - though the relative has not spoken about this. No one fully knows if it's true or has done anything about it. Is there a problem with sexual abuse within these care facilities and hospitals.

@BellMcEnd So glad your friend is well now!

She is right, it is annoying when everything is attributed to mental health and you are asked "are you taking your meds?". I remember once I jokingly snapped at someone and they said "and you wonder why we think you are ill". I know they care but it is frustrating. Sometimes it's just me as a person! I still have a personality!

In hospital too it is hard when you get angry because you are frustrated at being locked up and having your power and control taken away, and then a staff member doesn't do something they said they would do. So you get frustrated and that is put down as you being ill. It's like emotions are frowned upon and you are taught to push everything down and not express your valid emotions. Then the frustration comes out in other ways such as self-harm.

@SuziQ10 I am sorry about your relative . I have never experienced sexual assault, or heard about it happening, but that doesn't mean it doesn't happen. Male staff can come into your room whenever they want but then they run the risk of another member of staff looking through the window in your door (most psych wards have windows in the bedroom doors for ease of observations). Also male staff shouldn't do a medical procedure alone, they should always have a chaperone. And male staff shouldn't be doing a search on a female patient, unless it is as emergency.

Having said that, it definitely could happen. As I mentioned upthread, I have been hurt by staff physically and emotionally. They were all in on it together though. Staff are human and in a position of power so I can easily see that it is possible for them to find a way to abuse someone. I am sorry for your relative.

Hi OP no questions but I did just want to share that, as one fellow traveller to another, ime a good crisis team can be really effective. I found admission quite traumatising and although they patch you up to an extent also ultimately not as helpful as the crisis team I have so I just wanted to agree with you that good community treatment, where like you say you get intensive one to one support and are listened to, is better than admission. One of mine even came with me to my final meeting at work when they were sacking me for, effectively, being crazy. He must have been a trained advocate or something because he knew exactly what to say to make the (ex) boss very uncomfortable and worried indeed. I remember marvelling, through my olanzapine induced fug, at the situation. Good luck with your studies and well done for getting this far. You've already overcome a lot of barriers to be where you are.

This is a really informative thread OP, thank you for taking the time.

Really interesting and informative thread OP, haven’t read it all yet but will be back later with some questions

You are doing fabulous. This AMA rings so true to me.

I was diagnosed with schizoaffective disorder when I was 19 (they won't label it on an under 18 apparently) I spent from the ages of 17 to 25 on a revolving door of admissions and tried many many medications but not a lot of therapy available.

Depots were good for me however after a long period on them I stopped having periods, started lactating and procyclidine wasnt doing anything in the end for my dystonia which I have some residue of many years off them.

I now take Seroquel small dose in the morning and heavy dose at night along with other meds.

I lost friends over the time but I also gained others, I found out who my real friends were and not always who I thought and those who stuck by me when obvs (in my mind) they were plotting to kill me. (they weren't)

I was lucky in the way that my admissions were predominantly over 2 units and in the same area so I wasnt too far away from my family and friends.

DontbuyMum Thank you for the kindness some of the force has shown me over time, I am glad to say in my better times I went and paid it back so to speak by doing training sessions on MH for the police when the recruits were doing their basic training.

I was doing it on behalf of a charity and loved each "charity" evening where the recruits went around the table after table of charities and heard about how people with that condition might possibly present or they might come into contact with them and the best ways to handle each presentation. It was very hard on voice as 10 mins at each table so my "elevator speech" was 7 mins, 2 mins on charity and 1 min to take questions, 1-2 mins before the next lot and repeat up to 15-20 times, however, they treated us great and brought out honey tea to help

Hope your uni course is going well OP

@Handay I'm so glad you had a good experience with the crisis team, and that they showed your boss what's what!!

@SisterMichael You're very welcome!

@Inaquandry06 Thank you and I look forward to hearing your questions

@smurfy2015 It's a shame that you didn't get any therapy - I have been lucky in that respect. l also don't have periods but am quite happy with that! It's one of the only reasons I like my depot! And well done for educating about mental health problems. It's people like you who will improve understanding

Hi op. This has been a really valuable AMA. I’m an rmn (or I officially will be when I graduate in the summer) i would like to ask you what, in your experience has made a good mental health nurse? My brother has bipolar disorder and I’ve had my own mental health difficulties following the birth of my daughter so I have some experience from the “other side of the nursing station” so to speak.
I’m always trying to learn how to be a better and more effective nurse so would be really interested in your perspective of nurses.
I’m glad to hear you’re doing well, recovery and living a fulfilling life for the individual is always the goal.

I think I might print this out to show my friend when he is more lucid.

He was first diagnosed aged 18 after his first manic attack. He's been told both bi-polar and paranoid schizoprenia over the years.

I have known him many years and very very well for about 8 of those.
This is his 2nd sectioning in 10 months and he was in for 2 months last time and it took him a few months to recover.
He won't take his meds (olanzipine) as he hates the fact they slow his brain down. He is very cerebral and can't cope with that feeling. But of course, he lapses between periods of awful depression and mania leading to hospital which effectively destroys his ability to achieve what he wants to academically or in a business capacity. When he is manic he brings himself to the attention of public figures (in a non threatening way) so arrest / hospital (and all the terror that must surely cause?) are inevitable at that point. I don't understand why he is not given a depot injection? Perhaps because he won't comply?

I feel very frustrated. I love him dearly. I spent many hours listening to him in the run up to his recent admission. I hope i did the right thing.

Thing is, StripeyChina, these meds are horrible. I mean, don't get me wrong, I take mine now but they are grim. I know I've lost a lot of mental functioning, I don't have hay fever any more (!) - not a bad thing in itself, but that's the kind of blanket effect they have on your system and it does freak me out when I think about it. When I first went on anti psychotics I didn't shit for two weeks and put on three stone. They're not good for you. Plus I think everyone who takes them knows at some level that they're not a 'cure' as such; after all, you can't take a pill that will stop you specifically from thinking that your dead grandad is getting messages to you through your computer at work (one of my delusions). All they do really is stop you freaking out and being a problem. It's a pretty bad bargain.

Handay - absolutely!
This person's entire raison d'etre is cerebral thinking.
Meds flatten that completely he says - so why be alive? He is religious (the delusions are always religious) so feels 'trapped' in this life.
He doesn't want 'to be cured' - he wants to be permanently on the upcycle of mania (able to study / work for 18 hours a day) but of course it often tips over into being arrested and the trauma of that and 'losing' the next 3 months of his life, then the guilt and misery re what has happened. And so it starts again. When manic he tends to bother major religious figures / interact with security outside Parliament etc - dangerous for all concerned frankly.
He was phoning me for hours overnight and sending 100's of texts. I was glad he reached out - he is very important to me, so I listened and talked to him (when I could get a word in ;). I asked him to eat something hot and try to get some sleep but most importantly to call his Team. He was talking about The Listeners and worried that 'Comms were not Dark'. I am not his next of kin so didn't feel I could call his team / the Police on behalf of the person who is (who concurs with him that he is 'far too clever to need meds, he just needs to not push his brain so hard').
Of course, it is his decision - & I wouldn't like those side effects either. I am just worried that if he won't take meds voluntarily he will be forced to take them under some sort of order?

He'd hate that - how does it work?