Forum menu
sorry I thought bpd meant bipolar. ignore my comment.
If your case manager goes on leave, someone (should) be managing his/her caseload while away.
How many different anti-psychotics is he on? For us, three failed attempts to manage someone on medication we'd be considering Clozapine which for psych meds is considered gold standard.
Also I'm assuming the lad's on tablets? Would you consider a depot injection (could be 2 weeks, 4 weeks, there's even one that can be given every three months). The benefit is no missed doses. No temptation to take more than prescribed. Fairly consistent, slow release of medication until the next dose is given.
aphex - earlier on in this there is a post outlining the meds:
Quetiapine 500mg (we’ve dropped it down to 400mg as a trial, no ill effects) – anti-psychotic
Metazapine – 30mg – antidepressant
Respiradone – 4mg – anti psychotic
Clanazapan – 4mg -anxiety
Premephroziine – 50mg – anxiety
Haloperidol – 5mg – anxiety
Sodium valporate 800mg – mood stabiliser – (down to 600, no bad effects)
Zopiclone – 7.5mg – sleeping tablet
Presyclodine – 5mg – aching due to anti-psychotic
Thats 8 psychoactive drugs by my reckoning
sorry I thought bpd meant bipolar. ignore my comment.
I did too, what am I missing?
borderline personality disorder I think.
yes he's been diagnosed borderline personality disorder amongst other things. some of the other diagnoses seem to be related to when he was taking drugs, drug induced psychosis for instance. hes far better when he doesnt take them, fingers crossed thatll be for good.
If your case manager goes on leave, someone (should) be managing his/her caseload while away.
couple of weeks now and nobody been in touch. not even the pharmacist who said she'd ring every week.
i also emailed the CPN's boss asking for an update on his rehab referral, again, nothing back.
personally im not too bothered as i dont have much faith in the CPN anyway, and at present i feel on top of whats going on, his reduction of meds etc so im not pulling my hair out awaiting contact.
Also I’m assuming the lad’s on tablets? Would you consider a depot injection (could be 2 weeks, 4 weeks, there’s even one that can be given every three months). The benefit is no missed doses. No temptation to take more than prescribed. Fairly consistent, slow release of medication until the next dose is given.
yes hes on pills. i asked my wife about the depot as shes far more clued up than me (worked in a pharmacy previously). she said that we wanted him to have one back in the day but they wouldnt as it costs too much. also it would only have been for respiradone (dont know why), the rest would still have been pills.
TJ's copied and pasted the cocktail above, im really proud that the boys knocked off the 'addictive' ones that were causing so much trouble. like i say tho, hes admitted hes still an addict and would down a load if they were handed to him on a plate, so we're not in the clear yet.
FWIW, that shedload above has now been reduced to......
Sodium valporate 800mg – mood stabiliser
Quetiapine 400mg – anti-psychotic
Metazapine – 45mg – antidepressant (upped from 30mg)
Respiradone – 4mg – anti psychotic
Clanazapan – 4mg -anxiety
Premephroziine – 50mg – anxiety
Haloperidol – 5mg – anxiety
Zopiclone – 7.5mg – sleeping tablet
Presyclodine – 5mg – aching due to anti-psychotic
weirdly enough hes now also sleeping better without the zopiclone (sleeping tablets)
thanks
Zopiclone is apparently only effective for a short time, typically its only prescribed for up to 7 days. Although I have worked with people who have had it for 10 years plus.
If they have upped the Mirtazapine that will most likely be the reason for the better sleep.
As said previously; I feel there would probably be better results from trying to understand the BPD because thats what may be influencing the self harm and drug taking.
update, the boys taken a turn for the worse....
gradually over the last couple of months or so hes been really low, talking of suicide. hes engaging with his CPN and OT but he never smiles any more, just plops himself down on the settee with a sad face, says next to nothing, maybe necks a bottle of wine (3 or 4 times a week on average), and its tough mentally for us too living with him like this.
there are no violent episodes which is a bonus, but hes obviously in a bad place mentally. the other day he stated that he needs more help to stay safe and thinks he should be in hospital. we spoke to his OT who agreed, he had a referral and interview with crisis team and was taken in a couple of days ago.
it appears hes always on suicide sites, and almost went through with it the other day, having a knife to his ribs ready to push through to his heart, but in his words 'bottled it as it would be too brutal' for us to find.
he hasnt been taking his meds for a couple of weeks, we organise these into his dosset box as he cant be trusted with them. hes been removing them then stockpiling ready to overdose. i know this suggests that if he HAD taken them hed be better mentally, but his argument is they werent helping, so he decided to stop whilst he was still on them, so thats not the reason.
so......hes now in the local MHU and i believe theyre going to up his rispiradone, and also giving him a different anti-depressant on top of what he currently takes.
initial thoughts are here we go again, we dont want him upping his meds, but now i just think he has to take what he has to take to try and get him thinking more positively.
we also found 2 suicide notes in his room for us (parents) and his brother. heartbreaking to read.
sad days.....
He could probably get some of his meds in an Injection form so you know he hes taken them. This would be every couple of weeks. Hopefully he will safer where he is and it's great that he wanted to go. Hopefully he will get his meds sorted under close supervision
sorry should have stated, he does indeed get his risperidone in an injection every 2 weeks, thats the only one tho.
and yes its a positive that he wanted to go to hospital rather than actually go through with his plan and also yes i know its the best place for him right now.
just so sad. reading his note, he accepted hes fked up what should be the best days of his life and just wants it to end.
i dont particularly trust the hospital to sort his meds out after last time, they just seemed to up and up them until hes on a zombie cocktail. but..... i have to have more trust in them i spose.
i really wish theres something i could do to improve his life and not dread him being like this for ever.
forgot to say, he says its his paranoia thats the main problem, his thoughts racing all the time, hes going to be kidnapped if he leaves the house etc, and this is whats driving him nuts.
Sounds like schizophria to me hence the injection
Once he's stable probably after 3 months they should start reducing dosages
Don't despair, he's still talking to you. (This is a very good thing for the BPD sufferer, if they stop communicating it can get bad).
It's a constant tightrope of offering just the right amount of advice without causing them to dissociate from you. My 30 y.o. daughter is a diagnosed BPD sufferer we still offer help and support when we can. (We are her bolthole when she needs a rest from marriage/work for a couple of days).
Good luck and all the best to you all.
Mike
Sounds like schizophria to me hence the injection
the injection issue was purely to ensure he had this regularly as he was crap at sorting his meds out. we took control of the meds but they still went with the jab idea.
back in the day he was diagnosed with paranoid schizophrenia, but i dont think thats still the case. his latest letter from the psychiatrist states that his diagnosis is EUPD (emotionally unstable personality disorder)
Once he’s stable probably after 3 months they should start reducing dosages
long time to be in hospital tho, and im not sure we can cope with him at home as he is. unsure whether hes taking his meds, unsure as to whether he'll have killed himself by morning.... its a real tough gig and wears us out emotionally. they say look after yourself first, hard to know what to do for the best......
Good luck and all the best to you all.
thank you.
That injected medication is an anti psychotic hence my comment
That injected medication is an anti psychotic hence my comment
ah, gotcha. thanks
Sorry to hear things have not improved.
If he no longer has the Schizophrenia diagnosis, and it is now seen to be a personality disorder then as previously said - it is more important to understand the BPD/EUPD because meds may hide the issues by zonking him out - but talking therapies will help your son to manage them long-term and get his life back.
I expect his CPN has already told you it is important for him to address his alcohol use before they can even try to start therapies, because the alcohol will just give a whole lot of symptoms for him (and you) to deal with which wont be down to the BPD/EUPD.
That he wants to go into hospital is typical of the personality disorders, but it is important to point out it is a false environment, and when he comes out of there things will be exactly the same .. he needs to learn how to manage his emotions when stressed/anxious/etc if he wants to get his life back.
It all sounds easy and simplistic - but I know it is anything but!
There is good news that he does not have Schizophrenia, although the PDs are learnt behaviours and responses which require insight and awareness to resolve.
Good luck.
it is more important to understand the BPD/EUPD because meds may hide the issues by zonking him out – but talking therapies will help your son to manage them long-term and get his life back.
sorry, im trying to understand that but dont really, my fault im sure. the meds dont particularly zonk him out at present (but may if theyre increased). hes not like the zombie he was a good few months ago at present, just really down.
who will instigate these talking therapies, the OT? CPN? are these therapies their weekly visits, or are they more specialized?
I expect his CPN has already told you it is important for him to address his alcohol use before they can even try to start therapies, because the alcohol will just give a whole lot of symptoms for him (and you) to deal with which wont be down to the BPD/EUPD.
nope, i rate his OT and CPN, but the lad prefers to keep us out of his visits which im happy with, so they havent told us this about alcohol. i suppose we know ourselves that its harmful to him, but what can you do? i only got involved with the last one as it seemed that he was asking for help to get more support and be admitted to hospital.
and when he comes out of there things will be exactly the same .. he needs to learn how to manage his emotions when stressed/anxious/etc if he wants to get his life back.
understood. we're just going round in circles, hoping that things are improving, but then back to square one.
in fact ive just learned this morning that hes smashed his head in again, banging it against the wall, same as he did last time he was in there when he begged to come home. i understand its an awful environment and i really wish we could give him a better one to help him get better....well we can, home, but its not helping him like we hoped and thought it would. it should, but it doesnt. frustrating.
he says he bangs his head against the wall 'just to feel something' cos he cant drink where he is. he says he needs something.
so upsetting.
although the PDs are learnt behaviours and responses which require insight and awareness to resolve.
PDs = personality disorders i assume? insight and awareness - over and above what he gets from OT/CPN do you mean? he needs more specialist help than what hes getting now do you think?
The medication will zonk him out to some degree to help manage what I expect is anxiety of some presentation. People with BPD/EUPD have difficulty managing their emotions .. this can be emotions from lots of different things, and trying to identify what the triggers are is what will help; often its from early trauma - and when the person feels threatened and stressed it triggers their coping strategy they used when younger; talking therapies would help identify this to the person and find better coping strategies.
Although CPNs and OTs often complete CBT and DBT courses, the courses are little more than basic understandings of it from what I have seen - for such lengthy courses I am often surprised how little the people who complete them know; It is best led by an experienced Psychologist IMHO.
Typically we will not even assess a person who turns up drunk or on illicit substances because we wont know if we are assessing their mental health or whatever they have drank/smoked/injected. For that reason addressing the substance abuse is first priority.
Was Autism ruled out? I banging of the head could (at a stretch) be attributed to stimming ... sounds just like frustration to me, but such things will distract people with ASD. Although what you have said its to do with your son realizing that MH wards are typically the worse places to be if your anything other than zonked on meds or oblivious in a psychosis ... they are often very chaotic places.
If he is on the ward then he will have access to Psychiatrists who are the top of the tree to explore options. CPNs will care coordinate and arrange what support they feel is required ... as for MH OTs?? I still have no idea what exactly they do apart from arranging people to sign birthday cards and Xmas parties.
It is best led by an experienced Psychologist IMHO.
gotcha. and whats the difference between a psychologist and a psychiatrist? apologies for my lack of knowledge....
Typically we will not even assess a person
you say 'we', what are you if you dont mind me asking?
who turns up drunk or on illicit substances because we wont know if we are assessing their mental health or whatever they have drank/smoked/injected.
im pretty sure hes not on any illicit substances, he never goes out or sees anyone, plus he says he isnt and i believe him. his alcohol consumption was a bottle of wine every other night say, but he accepted its still too much and was trying to cut down. thats the problem, he just feels that he needs something, drugs, drink, fags etc.
but if he was due to be assessed im pretty sure hed not be under any influence of anything during the day.
Was Autism ruled out?
not at all, it was discovered that he has many traits and should have a test, but this was likely to be an 18 month waiting list which hes a couple of months or so down the line.
CPNs will care coordinate and arrange what support they feel is required … as for MH OTs?? I still have no idea what exactly they do apart from arranging people to sign birthday cards and Xmas parties.
ok, right. like i said before, he engages with both CPN and OT but hes also stated they dont do any good, just suggest things thatd help, that he knows would help, but hes got no motivation or intention of doing due to his frame of mind.
thanks for your input
I am not sure I can offer any specific advise unless asked specifics
I have autism. Late diagnosis, though all the signs were there obviously.
First his meds. I've never been one for them, even down to painkillers, though I smoke a fair bit of weed.
Due to the other conditions those are a necessity but be aware that especially the anti psychotics you cannot just stop them. Everything has a side effect or reacts to something else so overall its a subduing effect that doent lend enthusiasm to doing things like riding, excersise.
A butcher I used to work with had schizophrenia so he would have obviously had meds i wouldnt have been aware of but could work in a limited capacity in the back shop of a retail butchers. Occasional counter but mostly backshop with me. His brother the boss felt it was better for him as it gave him something to do and a routine to follow, which also for autistic is something quite important.
A goal, something to work to or work with/as Whatever his interest and most if not all autistic have them, and allow it to go extreme.
You could also see if the doctors can do a baseline on his medication. You'll find some will be given as a result of not doing anything, sitting thinking/worrying about things can lead to paranoid feelings, which unless you recognize that yourself can get really bad, and if you go telling that to the doc and how its affecting you, they can give you a diagnosis that is really temporary if you hadnt told them. Things pass, but on strong meds they continue on.
Sorry im not making much sense 🙂
I'll just say try to engage in that he is interested in and give him a routine to follow, even if you need to enforce it for a while.
Allow nothing above weed on the recreational, and no drink and that reacts with meds.
I've been through several bouts of depression, and apart from being hospitalized once have never sought help or medication and tried to myself use exercise and having a goal to work towards. The riding a bike releases the endorphins, having the goal gives you something on the horizon to look at, maybe work towards.
PS Autistic's love talking about themselves. Be patient and sit and listen. it will also lift spirit and help stock the brain with the joys of enthusiasm.
but be aware that especially the anti psychotics you cannot just stop them.
he knows that, we know that, but he wouldnt have given that a second thought if the reason was to kill himself. hed already got to this state of mind whilst still taking his meds tho.
though I smoke a fair bit of weed.
whats the thoughts on the harmfulness of this vs alcohol? goes against everything i believe in to allow him to smoke weed (paranoia especially) but if he needs something, what would you say is the least harmful in his condition?
A goal, something to work to or work with/as Whatever his interest and most if not all autistic have them, and allow it to go extreme.
id love him to find an interest and get absorbed in it, but nope, nothing. no friends, no interests, all he does at home is play xbox really.....
You could also see if the doctors can do a baseline on his medication.
sorry, whats a baseline?
Allow nothing above weed on the recreational,
as above, you think the effects of weed (paranoia) is acceptable? btw, his bro smokes it and realised he was getting too paranoid and has dackered it down now. i hope. i realise some people can go a lifetime with no effects from weed, but unfortunately my lad just seems to cop for the worst result with everything he tries.
having the goal gives you something on the horizon to look at, maybe work towards.
yep, as above, id love him to work towards a goal, hes just existing at present, no quality of life or anything to look forward to.
Be patient and sit and listen. it will also lift spirit and help stock the brain with the joys of enthusiasm.
we do this, we're patient with him and willing to go out of our way to engage him, but theres nowt there at present. its really tough the three of us sat there with him head down saying nothing, then just disappearing into his room. we try, but.....
thanks
Theres a great busy website which has a forum for autism and other conditions such as bipolar. It's a great community with lots of insightful posters from around the world.its very active and would give you more detail about everything than here. Just add a post.its called wrong planet.go to the bipolar forums and ask what other meds people are being given etc or do a search.
Psychiatrist is a medically trained doctor in mental health - Psychologist is basically a very qualified counsellor .. but don't ever say that to one!
I am a mental health social worker.
I certainly wouldn't recommend anybody smoking weed; lots of studies identify it increases gray brain matter loss.
Alcohol is also a toxin for the brain .. just more sociably accepted.
I have worked with people with Korsakoff's so seen the damage it does on the brain.
A good resource is MIND.org.uk and rethink.org
it was discovered that he has many traits and should have a test, but this was likely to be an 18 month waiting list which hes a couple of months or so down the line.
he engages with both CPN and OT but hes also stated they dont do any good, just suggest things thatd help, that he knows would help, but hes got no motivation or intention of doing due to his frame of mind.
Skim reading in work - so missed this bit.
Most if not all of us will have traits of ASD. Official testing can be a lengthy process, but I expect the CPN or OT will work alongside a Psychologist within their team (would be surprised if there wasnt a Psychologist in a CMHT) - and I am very confident the Psychologist will have questionnaires that your son, with your support, can fill in that the psychologist will be able to look at and see if there are enough red flags to unofficially say if your son has ASD.
Unfortunately there are all too many tick box mental health professionals - by that I mean they just do enough to tick the boxes of what their job description is, and do not take the extra effort to support people.
A good mental health professional will work at building your sons engagement and motivation for change; in small steps that identify small successes that encourage further steps towards the bigger goals.
Lack of motivation is a typical symptom of those with mental health problems - however some professionals use it as an excuse to make their own work easier .. remind the CPN of this; and suggest they ask the Psychologist for an ASD questionnaire; sometimes a nudge is all it takes.
and suggest they ask the Psychologist for an ASD questionnaire; sometimes a nudge is all it takes.
hes done this questionnaire (at least i think its the same one youre talking about). this showed enough traits to put him forward for a proper test, which is what hes waiting for.
A good resource is MIND.org.uk and rethink.org
been looking at MH websites including these this afternoon, and also following links to your suggestion of DBT/CBT (talking therapies?). DBT seems well thought of and helps a lot of people, i suggested this to the boy this afternoon. he said hes tried it before and never finished it so i suggested he push for it again.....
thanks
DBT is a lengthy process that needs the person to be onboard all the way. This is where a good mental health professional can demonstrate their skills by motivating a client to stick with it .. of course the client needs to be ready for the change too!
A new one I am in the process of reading up on is MBT .. a relatively new type of therapy which seems to get results.
Ultimately the person has got to recognise that they need to work on change; which is very difficult when their schemas and automatic thoughts have been so beneficial at challenging times in their lives.
About the weed aspect. I only really meant in that it is the best of a bad lot and class A drugs cause considerably more harm. I consider it mild, and if he feels the need to take something currently, weed is better than most. If he can get that then he might leave everything else alone.
Sorry again, nothing is a watertight surety.
By baseline. Its when the doctor looks at all the drugs he has and is being given to make sure nothing is now conflicting and nothing they've put him on has had a negative effect.
I guess most wont know the side effects of something like Librium, but having taking it in big doses the effect is the person taking it for any length of time, is hallucinations, very vivid and a strong depressive weight on your limbs. Effort is an effort.(Went through the Glasgow homeless system, you meet many and hear many stories.)
Not sure if this one is still given, but most are like that effect. So possibly those he's getting are suppressing the urge to do anything.
Anti depressants also can affect but worse can change your thinking. I've been on some but stopped as i felt that it was making physical changes to my thinking structure. I could at least recognize that was happening. Again might find the drugs side effects but he's being forced on to him and any changed maybe recognized as part of something else like the schizophrenia.
A baseline to my understanding is a fresh look at it.
Just a common or garden depressive here, with an old-school psychiatrist who can’t see the point of an ASD diagnosis at age 50.
suggestion of DBT/CBT (talking therapies?). DBT seems well thought of and helps a lot of people, i suggested this to the boy this afternoon. he said hes tried it before and never finished it so i suggested he push for it again
Just because it wasn’t the right time last time doesn’t mean that the right time won’t come. I had a go at DBT as an outpatient at an MHU but it didn’t do it for me at the time - too much, too soon. Several people said how good they found it. I feel I would like to go back and have another go now I’m no longer in crisis. It sounds as if your son might be getting to the point where it’s worth another shot. It’s a tricky call to make as to _when_ to tackle it, especially in a treatment-rationed regime.
It is exhausting being mentally ill, and exhausting supporting someone who is has poor mental health. You are all doing the best you can, and no one is to blame for what is going on. Give yourself a big hug and tell yourself how well you are doing. Your son is lucky to have you and I wish you all the best as you fumble on round and round until you come out the other side.
@sadexpunk I have nothing to add other than to say I hope you get your lad back and you're doing a sterling job.
bit of an update.....
hes getting worse on the MHU ward, started bashing his head against the wall so theyre now talking about alternative accommodation to get him away from that environment. coming back home being one of the options theyd like.
we've explained that hes worse than we thought he was and that we cant really cope with him being like this. the house is a lot less stressful just me and the wife. feels a bit selfish but we've had 10 years of this now and the advice is always to look after yourself first before you can help others.
however, we've said that we could have him back if its just for a short spell before alternative accommodation is found. im a bit scared tho that once hes back home, their risk assessment changes, hes safe again, ahhh we can take our foot off the gas now and it all goes slowly slowly and nothing changes. had that before and have had to take drastic action that upset us.
the social worker is looking at supported living which sounds my favourite option. hed have to go into a halfway house tho whilst it was sorted, could be a couple of months or so, thats why we said we'd prefer him at home than there. i believe this is one of the places where theres plenty of undesirables and drugs, hed be scared and possibly take drugs again in that environment.
hospital said that the problem with that is that supported living may refuse to take him due to not being qualified enough to look after self-harmers. i asked then why theyd be happy for him to come home and live with 2 people that have no qualifications at all in this, yet refuse him somewhere that they will have had at least some training. "hmmmm yessss i see your point."
as before, theyve upped his meds. for those that may know anything about them, theyve moved him onto venlafaxine instead of mirtazapine, doubled his dose of sodium valproate, and started him on clonazepam.
not particularly happy that we seem to be going backwards after we'd got him off a load, but ive resigned myself now to just accepting this, as my plan for minimal meds and a settled home life with family and the dog obviously didnt work out either, just dont want him 'zombiefied' again.
we have a 'conference telephone call' on tuesday where the hospital staff, CPN, OT and myself will all discuss where we go from here.
thanks for listening.