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Research, drugs, treatment, new diagnosis Forum for medical issues, and for the recently diagnosed (and families)

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Old 12-09-13, 12:58 AM   #1
LizS
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Default Effective drug options for mid-stage psychosis?

Hiya,

My mother turned 60 in February and she has been symptomatic with HD for ten years or so. She has never had any uncontrolled movement really, only very mild tics when exhausted. Her balance and posture haven't been great and she has the HD gait. In 2009 she began to get paranoid and delusional, leading to the first time she was sectioned. That was the first time she received any treatment as a symptomatic patient and mum was put on escitalopram and olanzapine. Mum was extremely stable on the olanzapine right up until xmas last year.

In the new year mum went down with a UTI and became acutely confused. I had to monitor her constantly like a toddler. Her mood swings escalated and she began having arguments with the TV, not even about when was showing on the TV but about messages that she believed she was receiving from it. Mum had 3 courses of antibiotics over the following couple of months and her olanzapine was gradually increased from 10mg to 20mg (the maximum dose) to try and combat her psychosis. She was finally sectioned again in April. Although she was paranoid and delusional, mum was fully ambulant and still lucid enough to follow basic concepts and conversations... perhaps like a 5 year old child. She was fully continent and independent with washing and dressing etc.

By this time, mum was refusing all food, fluids and medication due to her paranoia, making it difficult to treat her. The medical/psyche team started off forcibly injecting mum with olanzapine but they couldn't do that for any length of time and she didn't stabilize. They wound up giving her an injection of paliperidone, a drug that would stay in her system and work for over a month. My mum is 5ft tall and at this time she weighed about 6 stone. It was a hell of a drug to whack into her non-existent musclemass and hope for the best. Mum experienced hideous side-effects. She wound up catatonic, in nappies and then strapped to a padded chair because she was too out of her tree to be kept safe in any other way. Her bed was removed from her room and she slept on a mattress on the floor for her own safety.

I actually really wish the drug had killed her outright, because her quality of life now is non-existent. She has nothing to look forward to but irrational terror, increasing indignity and inevitable decline... unless some more effective drug can be found.

Mum has never recovered from this episode. It took a good 2 months before the effects of the injection finally wore off. She was then incontinent of urine, irritable, irrational, wildly delusional, physically aggressive. They couldn't give her respiridone because it's the same family as the paliperidone. They put her on quetiepine, a drug which apparently has a dosing window of up to 800mg, making it easier to tweak than something like olanzapine, which goes up to 20mg in 2.5mg increments.

No attempt was made to stabilize my mother. The moment she wasn't begging for death or attacking people they decided she no longer needed to be in a secure unit. Mum was discharged into a care home on 250mg of quetiepine and by all accounts was out of her tree. She was still delusional and had been shunted to another brand new place where nothing was familiar. There was supposed to be a titration plan, to bring the quetiepine up to an effective maintenance dose. None materialised. There was no discharge plan for the new GP local to the care home and even though the GP has requested it retrospectively she has been sent nothing. The care home only have HCAs and can't undertake things like increasing medication without having it dosed out in blister packs from flipping Boots.

The GP was persuaded to increase the quetiepine to 350mg but wouldn't tweak it further without prescribing advice from a psychiatrist. Mum's community psyche has helpfully spent the last month in sodding India and now has a horrendous backlog. I got him on the phone and he thought the quetiepine might still do the trick on a high enough dose but he wouldn't commit to visiting mum within the next week and the GP has received no correspondence yet. I'm beginning to lose my patience.

Currently, mum is terrified of everybody. She spends most of her time on the floor and staff leave her there, because she'll just put herself there anyway and she's not compliant with attempts to handle her, which puts them at risk. Mum can't converse with me any more, all she comes out with is a steady stream of utter nonsense. She doesn't respond to anything I say to her, it's like we're speaking different languages. When she staff try to handle her she freaks out, when they try to toilet her she freaks out, when they try to feed her or wash her she freaks out, she's frightened all the time; utter mindless animalistic terror that is harrowing to behold. During the recent hot weather mum would have a jumper on first thing, because she's so skinny but by the afternoon she was too hot. Whenever I helped her out of it she would be fine until she couldn't see me any more and then she would tense up and fight. Only when she could see me again would she calm down. So I don't know what the staff at the mental health unit did to her but she's just constantly frightened. She can still totter a few feet when the mood takes her but her balance is shot to pieces and she's thin and frail. I'm there regularly feeding her because she'll take food from me.

She does however, have very occasional lucid moments that give me hope that she's still in there. Sadly, she either wants to go home or to die, neither of which I can do for her.

Because mum's terminally ill, nobody is at all concerned with stabilizing her further. Even this community psyche, who I usually get along with, is making me feel like some crazed and deluded relative. There's a real prejudice where terminal illness is concerned, as though trying to ensure my mum isn't terrified all the time is a pointless and hideous waste of NHS resources.

Anyway... I swear I have a point.

Conversations I've had with the care home manager and the lady who's responsible for the drugs and GP liaison etc have led me to believe that quetiepine isn't terribly effective in people with severe psychiatric symptoms. Neither will offer any suggestions, which is right and proper because they're not doctors but I need something to start discussing with this community psyche if increasing the quetiepine has no effect on mum's acute confusion and psychosis. He has no specialty in HD, mum is waiting on a clinic appointment at Guys which will hopefully be beneficial but the clinicians at Guys only see mum twice a year, so there's a limit to how much they can attempt to over-rule local doctors. When mum was in the mental health ward they could only offer to advise and not until I attempted to take her out of there by refusing to consent to renew her section did I clap eyes on the consultant and get them liaising with Guys.

So... anybody with a loved one who has severe psychiatric symptoms found a drug that alleviates it? I know it's possible that mum may be past the point of drug therapy now but I won't accept it until I have to.

Thanks in advance.
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Old 12-09-13, 07:43 PM   #2
dennisw
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Default Re: Effective drug options for mid-stage psychosis?

Hi Liz,

What a harrowing history for your mum.
Sorry I cannot offer advice on the drugs, not even sure what our Jack is on.

To try and get best out of the next Guy's appointment is it worth copying the post you have written and send it to the consultant.

You might try an e-mail to Dr Ed Wilde on the HDBuzz web site.

Wish you every success with your search for a better outcome for your Mum.

Dennis
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Old 14-09-13, 08:11 PM   #3
hedgehog-girl
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Default Re: Effective drug options for mid-stage psychosis?

hugs Liz :S

you could also try the head pharmacist at the hospital? and hope you have a good one! I don't have any drugs knowledge that you need - but I used to be a service user rep (for mental health) and we had good liaison with the hospital pharmacist who would provide drugs infosheets and information to us and individuals - I hope someone comes up with something soon that can help alleviate this.
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Old 20-09-13, 02:30 AM   #4
LizS
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Default Re: Effective drug options for mid-stage psychosis?

https://www.youtube.com/watch?v=5anLPw0Efmo

I try so hard to tell myself that you're gone,
Though you're still with me, I've been alone all along.

Not a good day.
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Old 20-09-13, 09:20 AM   #5
jaq
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Default Re: Effective drug options for mid-stage psychosis?

Sorry thing sstill tough hoping for calmer times xxx
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Old 20-09-13, 09:47 AM   #6
LizS
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Default Re: Effective drug options for mid-stage psychosis?

Sorry. I was somewhat drunk and maudlin last night. There should be something on my laptop that locks me out of YouTube at midnight.

Mum's consultant at Guys says that she's past the point of drug therapy now. So she's lost to me now and not coming back. I did kind of know this in my bones but I wasn't prepared to accept it from anyone but a specialist. They don't even want to see her again unless we request an appointment as there's 'not much they can do' in the later stages.

So that's that then.
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Old 20-09-13, 11:11 AM   #7
jaq
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Default Re: Effective drug options for mid-stage psychosis?

so sorry it all seems so harsh and impossible when you know how much your mum has been through .

People don't have a clue either do they I met some friends and one has been in France for two weeks with his mother and was joking about being on holiday with his mum and how it was sometimes hard works . Dont know how lucky they are to have a holiday but moreover a mother .

Thinking of you but not much help I know xxx
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