DIP, dystonia - and reactions with atypical anti-psychotics with LBD/Mixed dementia

[HLA]

Hello everyone,
My mum, 75, in residential care, has had an extreme reaction (drug induced parkinsons) after an increase in Aripiprazole, from 5 to 10mg.

She has mid stage mixed dementia with LBD and family (sister) who also had LBD and equally bad reactions to anti-psychotics. Mum has a lot of Frontal temporal damage, and has been upset consistently for over 12 months.

I gave all the information possible to everyone, and have got an Advocate involved, and the intense dementia service, and informed them that her sister could not walk after having respiradone (a permanent problem), and also I noticed tremors.

Mum now has cervical dystonia - head bent over completely chin to chest - - and can barely walk, and now tremors, and is in pain. I am so angry as I resisted approving this drug use for so long and gave all the information and history, but was basically cornered with either mum being sectioned or trying Aripiprazole (after bad reactions to Memantine, Respiradone, and Metazarpine).
I agreed, and they said they would go low and slow, strated on 5mg (I agreed) then the dose was upped to 10mg without my consent (I am LPA) c.2 weeks later. I had noted mum had a tremor after 5mg, and was subdued.

So my questions I guess are...

Has anyone had something similar?
Has anyone recovered from dystonia or found things to soothe it?

What actions are worthwhile to take, as I feel the proper procedure was not followed by the increase of dosage? (I don't want to waste energy on this, but it is important nevertheless).

I seem to be endlessly researching, and trying to get help and the right support.

Thank you
HX

 

[Bunpoots]

I’m sorry to read about your mum @HLA . I know how distressing the side effects of some of these drugs can be from experience with my dad so I understand your anger.
My dad improved within days of the offending medication being reduced but I’m assuming your mum hasn’t.

I understand that Botox can be used to alleviate the symptoms of dystopia but have no personal experience of this. I hope your mum’s condition improves.

 

[Raglan]

Hi
My Mum has been in and out of hospital with delirium the last year and they tried different drugs which resulted exactly in chin to chest movement....except we didn't know what it was called then and until it was diagnosed months later at another hospital where they said anything could cause it , could be a drug but anything can cause it. They put her on a list to get botox injections in neck which may help but may not...but gradually Mum's neck came right itself without them...now grant it she was weaned of some drugs as delirium seemed to subdue itself....but unfortunately it came back or whatever it is and Mum had do go to hospital at Christmas and is no in long term care as they said she has some form of dementia. I sent away for a book from english charity about dystonia as noone seemed to know anything about it.

 

[HLA]

I’m sorry to read about your mum @HLA . I know how distressing the side effects of some of these drugs can be from experience with my dad so I understand your anger.
My dad improved within days of the offending medication being reduced but I’m assuming your mum hasn’t.

I understand that Botox can be used to alleviate the symptoms of dystopia but have no personal experience of this. I hope your mum’s condition improves.

Thank you for your reply. The dystonia in the neck has gone, but she is still not able to stand/walk and is now doubly incontinent. The team is doubtful mum will walk again.
I hope your Dad is doing as well as can be.

 

[HLA]

Hi
My Mum has been in and out of hospital with delirium the last year and they tried different drugs which resulted exactly in chin to chest movement....except we didn't know what it was called then and until it was diagnosed months later at another hospital where they said anything could cause it , could be a drug but anything can cause it. They put her on a list to get botox injections in neck which may help but may not...but gradually Mum's neck came right itself without them...now grant it she was weaned of some drugs as delirium seemed to subdue itself....but unfortunately it came back or whatever it is and Mum had do go to hospital at Christmas and is no in long term care as they said she has some form of dementia. I sent away for a book from english charity about dystonia as noone seemed to know anything about it.

Hi Raglan
Thank you for your reply, and I am sorry to hear of your Mum's distressing conditions. It may be worth looking at the Lewy Body Society list of symptoms, and seeing if there is anything there that strikes a chord.
In my research I found a very small study of cases with patients who had various tardic dystonias after neuroleptic drugs such as risparadone (sp?), and aripiprazol can also cause these effects.
It seems these are not often seen as major side effects / noted very much, which is a shame. I'm trying to get the psychiatric team to do a yellow flag report, so at least my mum's side-effects are on the record.
Good luck with the rest of your journey.

 

[HLA]

I just thought I'd update this, in case anyone in the future looks at it.

Last year mum had an 'overdose' of aripiprazol, due to the doctors not noticing symptoms/not taking them seriously/not believeing me. You know the thing.

After being admitted to hospital, when they did take things seriously - after I explained everything, her reactions to meds, the research papers on the very rare reactions to this medication - they stopped all medications. Everything. A couple of months later, just after a wheelchair was orderded, mum could walk, has got her continence back, and is upright.

After a spell being sectioned (after another drug 'trial' in the care home sent her nuts), the doctors finally came to the conclusion she was best with no medication at all. Thank goodness. She has melatonin at night, and paracetomel.

It has been a huge journey. Not least for her.

She remains distressed, agitated, confused... but far gentler than with medication.
It is an option.

HX