I do not have deputyship, but I advocate for a relative who has a mild/ moderate learning disability. She is prescribed Trazodone and Sulpiride for her anxiety and for what others have deemed to be, 'challenging behaviours,' - she lives in residential care.
She had uro-sepsis last year and suffers from recurrent UTIs, both of which have caused her to be hospitalised on numerous occasions throughout the pandemic. She has diabetes type 2 and numerous other co-morbidities including gall stones and possible left ventricular hypertrophy.
She experiences frequent deliriums in which she becomes extremely agitated, has very high bp and heart rate, has uncontrollable leg and body movements and shouts out names and random words and phrases. Typically, she feels nauseous and aches all over at the start of the cycle and becomes very anxious. Sometimes, near the beginning of the delirium, she will purposefully wave her arm over her head and look up at the lights on the ceiling and stare.
Originally. these deliriums seemed to accompany the UTIs and she would have a fever and would need hospital treatment. However, she now has most deliriums without fever which results in her not receiving any medical treatment. These deliriums typically last 36+ hours after which she will usually fall asleep and wake up unaware of what has happened and will have very poor memory and cognitive functioning afterwards.
Agitation and delirium are listed as side effects of these psychotropic medications but her psychiatrist doesn't think it wise to take her off these medications ( she has been on them in one or other form for 10+ years now , deemed to be in her best interest by psychiatrist/s) but I am extremely concerned about what will happen to her if these deliriums continue and it seems likely that all her symptoms are linked to these medications.
Can anyone relate to / explain what is happening to my relative when she has these deliriums but does not have a UTI or other obvious infection? My relative is going through hell every time this cycle of symptoms/ illnesses occurs, which can be every one one to three weeks at the moment and this has been going on for months now.
When well, my relative, has a good quality of life and engages well with people and in day to day living/ activities.
Thank you.
Written by
Dancingqueen62
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Hello. That sounds really worrying, especially as there does not appear to be a clear explanation. I appreciate she might have been experiencing an acute confusional state when they were associated with her UTI’s but if it is no longer due to a UTI and her vital signs are unchanged during these episodes then there needs to be a clearer understanding. Whilst there is a difference of opinion with the psychiatrist are they (or the GP) seeking investigations over the possible cause, such as further tests and scans? Also a best interest decision maker such as the psychiatrist in this instance must be guided by those who know her best so the psychiatrist must show regard for your views and those who support her day to day, is that happening? If you are unhappy with this then she is entitled to a second opinion. It makes me sad and cross when people are not curious about why things are going on, and instead just accept such horrible things for vulnerable people. She has rights and you have the right to speak up for her and to be heard. If you are still not getting anywhere then I would suggest the NHS Trusts Patient Advise and Liaison Service. I hope something in that reply is useful.
I agree with Iolo. There is also an organisation called the challenging behaviour foundation who support people with severe learning disabilities and challenging behaviour. Even though your relative has a moderate LD it might be worth contacting them as they have experience with the issues around psychotropic meds and specifically their overuse as a means of controlling behaviours. People with learning disabilities are more likely to have side effects from these meds.
Having looked at their guidance, these meds can be prescribed for people who have a learning disability, if diagnosed with certain mental health illnesses, which, on paper, applies in my relative's case. However, how accurate that diagnosis is, I cannot confidently dispute as a lay-person, even though I am very sceptical about the circumstances around how the diagnosis was originally made.
The administering of PRN psychotropic medication, however, is more easily scrutinised by the lay-person and I feel that greater regulation of this type of medication is also needed.
I have also become aware that, in my relative's case, were these psychotropic medications to be withdrawn, should they be deemed to be of no benefit to her (or even if they were identified as causing her more harm than good,) even if withdrawn gradually, my relative would possibly be at risk of a potentially fatal adverse effect called neuroleptic malignant syndrome,- a syndrome that is not well documented nor well understood as yet, it would seem, in the medical world.
I think there needs to be more discussion around the side effects of all medications, between psychiatrists, doctors, support workers family members and friends, before they are prescribed to a person with a learning disability. Sadly, diagnostic over-shadowing exists, which results in people with a learning disability suffering from a medical problem/ illness but which is interpreted as a deliberate or a learning disability behaviour, by the non medics. Sadly, this can lead to a bad outcome for the person with a learning disability and subsequently, for their family and friends.
My hope would be that people with a learning disability (as well as people without a learning disability,) will not be given these medications long term ( if at all) in the future and that other options will be made available to them in order to support them, when, 'things come tumbling down'.
You are correct, so far nobody has been able to explain what is happening to her but I am trying to put the pieces of the puzzle together in order to put forward a possible explanation, based on the known side effects of these medicines (which nobody else makes reference to) but I was hoping that somebody else, who has had similar experiences with/ knowledge of these meds, might be able to throw some light on her situation. I am turning to 'HealthUnlocked' in hope, as I feel that we need to be open minded and look for a physical cause rather than saying that this is a mental health issue/ behaviour. Seeing as deliriums are listed as a side effect of Trazodone, it seems blatantly likely to me, that these meds are causing these deliriums which are triggered by pain/ anxiety/ lack of sleep/ other? Seeing as she lives in residential care, there could be other factors involved in triggering the deliriums that I might not be aware of. I am calling these acute confusional states, 'deliriums' as they seem to fit that term (also backed by the GP) but nobody else is referring to them as such. Another side effect, which is significant, is constipation and I am wondering whether the pain experienced from this ( aswell as the abdominal pains associated with taking these meds) could be one of the triggers. The UTIs are significant and are being looked in to by a very helpful urologist, thankfully. Unfortunately, owing to the labs being swamped with testing for covid, urine tests are being limited to those most highly indicative of infection. Also, the GP has been very supportive, however, like all GPs, he has only a very limited amount of time for each patient and so consultations are few and far between. I have had to bombard the poor man with emails instead.!
The psychiatrist tells me that he takes heed of what I say, however, he does not always agree with me( I don't actually recall him ever agreeing with me.) The other family members have a completely different stance on medicating my relative and follow his guidance with minimal question. Consequently, I feel that I am left, out-voted and side-lined. We have been given a second opinion.............by the original psychiatrist who diagnosed and medicated my relative with similar meds, previously! I should add that my relative was previously diagnosed as having Asperger's only to have that diagnosis changed twenty odd years later, to autistic traits and probable bi-polar disorder.
Thank you, I will look in to speaking with PALS, however, I have already made contact with the LD hospital nurse, who has endeavoured to help us as much as possible.
Hello. Thank goodness you are in your relative’s corner as you sound like you have the energy and wit to keep pushing. It’s also good that other professionals continue to be curious alongside you. Your point about Neuroleptic malignant syndrome is new to me so I will explore that some more for my own learning.
It strikes me that it is unlikely to be explained by a single factor but a combination of bio, psycho, social factors. The problem with psychotropic medications is that they only manage symptoms, they can pose serious risks and they can hamper clinical curiosity. If pain happens repeatedly for someone they just don’t take painkiller but instead the medical world wonders what is causing the pain.
I often wonder to myself if this person did not have a learning disability how would the medical world respond then?
The point about constipation is also an interesting one as not only does it cause pain/discomfort and toxicity but there is the trauma of passing the large, hard stool and then the fear of it happening again.
Can I please check, is a psychologist at the table helping to pull together the bio, psycho, social threads? Given that they do not work in a mental health diagnosis and medication way, they can often hold in mind the holistic threads.
Also with current technologies would your relative be able to tolerate wearing a smart watch as I wonder if this is a way of actively monitoring her vitals but also collecting, tracking and analysis the data?
I am not sure if my questions are at all helpful, your relative’s story and your support of them has just got me thinking.
Thank you for your kind words, but I wouldn't say that I am someone with energy or wit. However, I am 'driven' to keep pushing. Heartening, that you recognise the rigours involved- they come at a cost and they take their toll.
With regard to NMS, I have seen a post regarding this, on HealthUnlocked from 'Farooqji', in PD feed, I believe. I'm afraid the level of understanding required to comprehend the information 'Farooqji has given, is beyond me! The only other sources I have found are 'You-tube' lectures and PubMed abstracts. I am eager to understand more about this adverse effect.
Your thoughts resonate with me. If my relative did not have a learning disability, I believe that she would have made the link between her medications and her symptoms by herself and would most likely have decided that the 'cons' totally outweighed the pros and would most likely have ditched her medications years ago. Furthermore, she would have been able to verbalise her symptoms thoroughly and would have been able to explain her behaviours in context and therefore, she might not have been given these diagnoses and corresponding medications and consequently, would not be experiencing these terrible adverse drug reactions. Perhaps , my initial post here, ( and apparently also copied to other feeds eg Fibromyalgia group) ) was never going to get responses confirming similar experiences to my relative's as perhaps nobody else has experienced the combination of medications my relative has prescribed for her, which have brought about these particular side effects or if they had done, then perhaps they switched to other medications, in preference. Interestingly, one of the potential side effects of Trazodone is, 'expressive aphasia' ( a partial loss of the ability to produce language although comprehension generally remains intact. )I can see that this side effect adds another layer of disability to someone who already struggles to get their opinions/voice heard.
Regarding the constipation, I agree and perhaps the fear of the pain is bringing on the anxiety, which causes the lack of drinking and thence dehydration- uncontrollable leg movements- deprivation of sleep and finally ending in delirium (listed as a drug side effect.) Abdominal pain and serious gastrointestinal problems can also be side effects of Trazadone and some of the other medications she has been prescribed over the years.
I have asked for psychology input on many occasions and this has been fruitful only once, over six years ago. The support given was minimal, but very helpful at the time, however, the advice that came from the psychologist as a result of her analysis/ investigations was never really 'taken on board' and did not filter across to the successive support systems. It therefore made very little impact unfortunately. I will continue to request for this, however, for reasons I cannot go in to here, I am sceptical that my relative will be allocated the services of a psychologist from her LD support team.
Your idea of a smart watch is brilliant and I had it in my mind to request this for her for Christmas, as potentially being a very useful and relevant piece of tech. I have no evidence as to how her bp/ heart rate etc are affected during these deliriums unless she has an accompanying fever and is taken to hospital.
Your thoughtful advice and suggestions are heartening. It is very kind of you to give your time, in this way- it is much appreciated.
Hi there, I don't think I can add anymore to what has been said already but I just want to say I agree with what you are saying and what is said in the replies to you. So please know that my heart goes out to you and your relative who has mostly not been helped very well at all from the health and social care services. Why these psychotropic meds are used for anyone seems mysterious as they never seem to cure anyone. They seem, in the longer term, to universally worsen the problems for which the meds were first prescribed.
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