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Alzheimer's and Sodium Valproate

YorkshireLass

Registered User
Feb 15, 2017
221
Ilkley
Hi, has anyone any experience of Sodium Valproate being prescribed for a person with an Alzheimer's diagnosis. My mum was distressed for the majority of the day. Crying, clinging on to any human hand, repeatedly asking where she is and shouting her own name. After several weeks and many meetings with different people linked in some way to the memory clinic and finally at an appointment that the home and myself were not aware was going to take place this medication was prescribed.Initially a low dose that was increased over a period of time. The more research I did (including Alzheimer's Society website) the more concerns I had for the effects of this anti epileptic medication and was wondering if anyone else had been prescribed this for a loved one.
 

nitram

Registered User
Apr 6, 2011
21,063
North Manchester
A mixture of Memantine and a low dose 100mg/day of Epilim was successful in treating my wife with LBD.

Doses for epilepsy are much higher

4.2
-
-

Adults

Dosage should start at 600 mg daily increasing by 200 mg at three-day intervals until control is achieved. This is generally within the dosage range 1000 mg – 2000 mg per day, i.e. 20 – 30 mg/kg/day body weight. Where adequate control is not achieved within this range the dose may be further increased to 2500 mg per day.


https://www.medicines.org.uk/emc/product/518/smpc

Everybody reacts differently to medications, if you have concerns talk them over with the prescriber.
 

Kevinl

Registered User
Aug 24, 2013
4,764
Salford
This has come up on here more than once and as with any medication people's experience of it varies, some good, some bad.
NICE did do some research into it's use with AZ, link below. What the conclusions of the research did say is "Summary: Evidence from randomised controlled trials (RCTs) suggests that valproate preparations (including sodium valproate and valproate semisodium) are no more effective than placebo for treating agitation or behavioural disturbances in people with dementia. Adverse effects such as falls, sedation, gait disturbances, tremor, muscular weakness, thrombocytopenia, gastrointestinal disorders and urinary tract infections were more common in people taking valproate preparations than placebo. "
K

https://www.nice.org.uk/advice/esuom41/chapter/Key-points-from-the-evidence
 

YorkshireLass

Registered User
Feb 15, 2017
221
Ilkley
Thanks for your replies. I was willing to try anything to make my mum's existence a little calmer and tolerable but was never involved in any discussion or decision to prescribe this drug. I was in fact concerned after doing research online regards the side effects and that it was not licensed for patients with Alzheimer's.After three months of this medication things came to a head. Mum was violently sick, could not hold herself upright on the side of the bed or sit in a chair and was unresponsive to any stimuli. The GP was called and found all her vital measurements (heart rate, temp, oxygen levels etc ) to be within normal ranges. Sodium Valproate was stopped as we hadn't seen any improvement in levels of anxiety.. Within 24hrs mum was able to eat her breakfast sitting upright. As I have LPA for health and mum does not have mental capacity I refused for the medication to be restarted. The outcome is that mum has been discharged from the memory clinic. I have not been offered an opportunity to speak to the care home liaison psychiatric nurse as she claims she deals with the staff at the care home and not the relatives and the staff at the care home should communicate with the relatives. I am currently deciding what next and waiting for a further visit from the GP. We asked for it today but it's Monday and they are "very busy".
 

Rosie4u

Registered User
Jun 22, 2017
219
South Manchester
Hi, has anyone any experience of Sodium Valproate being prescribed for a person with an Alzheimer's diagnosis. My mum was distressed for the majority of the day. Crying, clinging on to any human hand, repeatedly asking where she is and shouting her own name. After several weeks and many meetings with different people linked in some way to the memory clinic and finally at an appointment that the home and myself were not aware was going to take place this medication was prescribed.Initially a low dose that was increased over a period of time. The more research I did (including Alzheimer's Society website) the more concerns I had for the effects of this anti epileptic medication and was wondering if anyone else had been prescribed this for a loved one.
Hi my husband has been taking 300mg of valproate for about a month and memantine for 14 months. Since starting the valproate- he had a seizure and many small ones - these have stopped but he is tired lethargic less able to walk .Is a very low dose and should have been doubled after 10 days but I refused. Is a trade off of symptoms really and I feel sometimes the professionals change or increase meds too quickly.
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,718
66
Toronto, Canada
My mother was put on sodium valproate for behavioural problems but honestly I don't know if it did anything for her.

I think you did the right thing in refusing the medication to be restarted. I think a few noses might be out of joint because you did so, but you have the LPA and, most importantly, you know your mother better than anyone else.

If I were you, I would write a letter, copying whoever you think is appropriate, regarding the facts that you didn't have the opportunity to speak to the psychiatric nurse and the GP's office is "too busy".

Alternately, have you considered going to the GP's office with a big smile and planting yourself there with your book, tea or whatever will tell them you're there for the duration? I have done this successfully with a funeral home and a bank in Guatemala when my father died. The key is to keep smiling, be pleasant and look like you're taking root. Most people find this unsettling and I find it more effective than getting upset.
 

YorkshireLass

Registered User
Feb 15, 2017
221
Ilkley
Hi my husband has been taking 300mg of valproate for about a month and memantine for 14 months. Since starting the valproate- he had a seizure and many small ones - these have stopped but he is tired lethargic less able to walk .Is a very low dose and should have been doubled after 10 days but I refused. Is a trade off of symptoms really and I feel sometimes the professionals change or increase meds too quickly.
Hi Rosie, thanks for your reply. I feel like you that the meds are given with a timetable of increases and for me the monitoring and reviewing is done too infrequently and without really taking on board the lack of desired effect. I have been a willing person in the past who has gone along with the proposals of medical professionals. That changed for me after my mum had a short stay in hospital, several tests including a CT scan and a few weeks after she was discharged was sent a letter to go for a gastroscopy. Mum at the time was, 89, blind, with a fear of choking and struggling to swallow tablets - I phoned and refused the appointment. Later we attended the obligatory 8 week after discharge follow up appointment. I was expecting to be in trouble but the elderly care consultant said it wasn't a problem, not necessary and was a routine procedure after discharge when they hadn't found a cause for an original admittance even though at the time she had recovered. From that day forward I changed my usual passive approach. More recently having been on the increased dose of Sodium Valproate for a few weeks with mum very sleepy then violently sick (I appreciate it could have been caused by something else), unresponsive and with her GP asking me if mum was epileptic and with her being in full agreement the decision was taken to stop the medication. I understand mum has now been discharged from the memory clinic. I am waiting to be informed officially before I take my next step.
 

YorkshireLass

Registered User
Feb 15, 2017
221
Ilkley
My mother was put on sodium valproate for behavioural problems but honestly I don't know if it did anything for her.

I think you did the right thing in refusing the medication to be restarted. I think a few noses might be out of joint because you did so, but you have the LPA and, most importantly, you know your mother better than anyone else.

If I were you, I would write a letter, copying whoever you think is appropriate, regarding the facts that you didn't have the opportunity to speak to the psychiatric nurse and the GP's office is "too busy".

Alternately, have you considered going to the GP's office with a big smile and planting yourself there with your book, tea or whatever will tell them you're there for the duration? I have done this successfully with a funeral home and a bank in Guatemala when my father died. The key is to keep smiling, be pleasant and look like you're taking root. Most people find this unsettling and I find it more effective than getting upset.
Thanks for your reply Joanne, the GP was in agreement (when she visited after evening surgery) regards stopping the medication as we hadn't seen any improvement in mum's distress when awake whilst taking the medication and it was likely that it had caused the severe side effects. I am waiting to see if we have any further contact from the memory clinic before I take the matter further hopefully with the support of the GP.
 

angelaraphael

Registered User
May 29, 2017
19
As well as caring for my mother I have mental health problems but I have been stable for a good while now. At one stage I myself was prescribed sodium valproate. It is dreadful stuff - it made me even more suicidal and gave me such bad indigestion you would swear you were having a heart attack and you weren't allowed anti indiges.tion medication. I used to be pretty co operative with the doctors but in the end I refused to take any more of it.
 

Daisy1934

New member
Jun 13, 2018
5
My mum was admitted to hospital following a loss of cardiac output. Her alzheimers was moderate and she was living alone, independently but following 2 weeks in hospital the doctors prescribed sodium valporate... brain scan had revealed a tendency to have seizures. However she has gone down hill rapidly. Can now barely walk, speak a coherent sentence or find her balance. She has had a seizure since. Needs constant supervision and has a live in carer. Will visit doctor to discuss the possibility of taking her off the sodium valporate maybe? Her deterioration has been far too rapid. So hard to know. Maybe it is just rapidly progressing Alzheimers
 

nipper

Registered User
Dec 27, 2012
26
hertfordshire
Not sure whether this is the right thread to post this question but here goes anyway. My wife has early onset Alzheimers for about 8 years now and is in a nursing home. She had never had any seizures until after her diagnosis. She was having seizures once or twice a month and was prescribed sodium valproate. She has not had a seizure for around 2 years now but because of this her CHC funding has been withdrawn. I would like to know (if there is an answer) the likelihood of seizures returning if she continues on the medication. Obviously I am happy that she continues with the medication and that she has not recently been suffering from seizures.
I raised at the review an my appeal with the CCG that she is still at risk of seizures but of course they dont see it that way. Any comments would be helpful please, I find that if a condition is well managed despite the fact that my wife has Alzheimers she is being penalised . It appears to them that there is nothing wrong with her from a medical point of view.
 

canary

Registered User
Feb 25, 2014
13,689
South coast
Can I answer your question from a different viewpoint, @nipper ?

My OH has has epilepsy since childhood and takes anti-epileptics. If someone is having seizures then they are not allowed to do things like driving because of the risk of further seizures. However, if their seizures are controlled by the medication so that they do not have any seizures for 2 years then the risk of having further seizures is considered so small that they are allowed to have their driving license back. Obviously, if they stop the medication the seizures will return, but so long as they continue them the risk of seizures at this stage is not considered to be higher than the normal population.

I can therefore see why, as your mum has not had any seizures for 2 years, they are no longer considered a problem
 

nitram

Registered User
Apr 6, 2011
21,063
North Manchester
@nipper

The CCG are not denying the absence of a medical need they are in effect saying that they consider the need can be met by the community nursing service.

The rationale behind CHC is that if a person is in hospital with medical needs that cannot be met by the community nursing service, and do not require the expensive hospital infrastructure, it is cost effective for the CCG, and maybe better for the person, to be treated in a nursing home with the CCG footing the bill.

The checklist and DST are an attempt to standardise the necessary assessment.

Unfortunately social needs are not included, why should they when the concept was to free up hospital beds and treat the person elsewhere?

CHC is rightly restricted to medical needs, lack of adequate social care is another matter.

If you want to pursue 'a well managed need is still a need' have a read through
https://caretobedifferent.co.uk/do-you-really-understand-well-managed-needs-argument-2018/
 

Belle2020

New member
May 10, 2020
4
Hi, has anyone any experience of Sodium Valproate being prescribed for a person with an Alzheimer's diagnosis. My mum was distressed for the majority of the day. Crying, clinging on to any human hand, repeatedly asking where she is and shouting her own name. After several weeks and many meetings with different people linked in some way to the memory clinic and finally at an appointment that the home and myself were not aware was going to take place this medication was prescribed.Initially a low dose that was increased over a period of time. The more research I did (including Alzheimer's Society website) the more concerns I had for the effects of this anti epileptic medication and was wondering if anyone else had been prescribed this for a loved one.
Hi there,

I was so glad to see your post as I am dealing with everything you mentioned with my father. I would really love to know how things progressed with your mum after she came off sodium valporate.

Before the pandemic we grew increasingly concerned and contacted the memory clinic for my dad to have a cognitive assessment in Nov 2019. It was clear that he had some form of dementia. We were then given a follow up and a CT scan appt. all the way in April 2020. Nevertheless we didn't complain. However this process was ridiculously stretched due to the pandemic. His appointment got cancelled and he was left without a diagnosis and no help. He was deteriorating badly and behaviour was getting worse and worse. Things came to a head when he had a massive outburst and I had to call the emergency services for help. That was when the mental health community team got involved. My dad is on 20mg Memantine and was also given lorazepam to calm him down ( although we try our best not to give this unless we absolutely have to) as well as sodium valporate twice a day which started at 100mg, then 200mg and now 400mg. My dad had behavioural issues before but since the sodium valporate increased he is shouting, very aggressive and his mobility is dreadful.

I can't help but think this is due to medication and cannot believe that someone can deteriorate so much within 2 weeks.

Any help or stories from anyone who has witnessed the effects of sodium valporate would be very helpful.

His doctor is coming to see him on Thursday and I would like to request we try getting him off sodium valporate.

Many thanks x
 

YorkshireLass

Registered User
Feb 15, 2017
221
Ilkley
Hi there,

I was so glad to see your post as I am dealing with everything you mentioned with my father. I would really love to know how things progressed with your mum after she came off sodium valporate.

Before the pandemic we grew increasingly concerned and contacted the memory clinic for my dad to have a cognitive assessment in Nov 2019. It was clear that he had some form of dementia. We were then given a follow up and a CT scan appt. all the way in April 2020. Nevertheless we didn't complain. However this process was ridiculously stretched due to the pandemic. His appointment got cancelled and he was left without a diagnosis and no help. He was deteriorating badly and behaviour was getting worse and worse. Things came to a head when he had a massive outburst and I had to call the emergency services for help. That was when the mental health community team got involved. My dad is on 20mg Memantine and was also given lorazepam to calm him down ( although we try our best not to give this unless we absolutely have to) as well as sodium valporate twice a day which started at 100mg, then 200mg and now 400mg. My dad had behavioural issues before but since the sodium valporate increased he is shouting, very aggressive and his mobility is dreadful.

I can't help but think this is due to medication and cannot believe that someone can deteriorate so much within 2 weeks.

Any help or stories from anyone who has witnessed the effects of sodium valporate would be very helpful.

His doctor is coming to see him on Thursday and I would like to request we try getting him off sodium valporate.

Many thanks x
Hi Belle2020, I'm so sorry and sad that you are is this dreadful situation. As you will have read from my following posts on this thread Sodium Valproate was stopped after 3 months for my mum by the GP although it had been prescribed by the Elderly Psychiatric Service without any discussion with me. I believe it had absolutely no effect on her anxiety, agitation and fear. Following that mum continued to be given a dose of Lorazepam during the evening in an attempt to help her to settle through the night. I don't think this did much either. It was originally prescribed by our GP to hopefully help when I was caring for mum 24/7 at home. Medication wise nothing happened for another 12 months although I was doing plenty of communication with those folks in the NHS that are supposed to be providing care (another sad story!). The care home manager and seniors at the care home helped with this as it was becoming increasingly difficult for them to manage mum day or night. Mum was only calm when she was asleep or I was there able to hold her hand and comfort her. This was every single day! Eventually we had another visit from the Psychiatric Service and on this occasion I was consulted. Mum was prescribed Quetiapine alongside the Lorazepam. I can't say things improved only that mum slept a lot more during the day. To be honest this was a relief as whenever mum was awake she was terrified, crying and in total distress. At least when she was asleep she had some respite. By July we had decided that mum's needs could no longer be met in the care home and we began the process of assessment for her to move into nursing care. Another ridiculous saga that resulted in her moving to nursing care early November 2019. The care was fantastic but she continued to decline in mobility, continence, feeding, speech etc and suffered chest infections. Most of the time she spat out any medication including antibiotics. Mum died on 16th January 2020. No additional medication was prescribed until the end of life medication was in place. Three years in care and several years previous of constant care but without successful alleviation of dreadful symptoms. Everyone is different with dementia including their response to medication so hopefully you will have some measure of success with your dad. My advice is to monitor and record as much as you can both as a diary and with images and phone recordings. If you apply for Continuing Health Care you will certainly need it to be successful. It eases the financial strain which is something. Sending you a hug xxxx
PS Message me if I can help in any way I will xx
 

Belle2020

New member
May 10, 2020
4
Thank you so much for replying. I am so sorry to hear about your mum. Seeing her in so much distress must have been so hard for you. How are you coping now?

I'm trying as hard as possible to get my dad the right support but to be honest he seems to be so resistant to medication. He was also prescribed antipsychotics. First resperidone and then quetiapine. He reacted badly to both and his behaviour grew even worse. We stopped them after a day or two of using them. I just don't want him to take the wrong thing which may result in his dementia getting worse. In my opinion he was better without medication. I know sedation can sometimes be a god send, but its really hard to see as you see their personality fading away. His deterioration in the span of a few weeks completely baffles me.

He doesn't sleep much at night (we tried zopiclone and promethazine which is an antihistamine but didn't really get much luck) and wakes up in a complete frenzy. I'm currently working from home due to the pandemic and it is so incredibly hard when he has his outbursts. There is no clear pattern. I'm just glad there is a place like this where you can speak to people who have been there. X
 

YorkshireLass

Registered User
Feb 15, 2017
221
Ilkley
Thank you so much for replying. I am so sorry to hear about your mum. Seeing her in so much distress must have been so hard for you. How are you coping now?

I'm trying as hard as possible to get my dad the right support but to be honest he seems to be so resistant to medication. He was also prescribed antipsychotics. First resperidone and then quetiapine. He reacted badly to both and his behaviour grew even worse. We stopped them after a day or two of using them. I just don't want him to take the wrong thing which may result in his dementia getting worse. In my opinion he was better without medication. I know sedation can sometimes be a god send, but its really hard to see as you see their personality fading away. His deterioration in the span of a few weeks completely baffles me.

He doesn't sleep much at night (we tried zopiclone and promethazine which is an antihistamine but didn't really get much luck) and wakes up in a complete frenzy. I'm currently working from home due to the pandemic and it is so incredibly hard when he has his outbursts. There is no clear pattern. I'm just glad there is a place like this where you can speak to people who have been there. X
Talking Point really helps as sadly you find folks similar or in a worse situation than yourself. This shouldn't help but it does. I suppose knowing you aren't alone gives support. It's a strange experience when your mum or dad is no longer here. Mum occupied virtually every waking moment of my life for so long. She had been blind since her late sixties and died aged 94 so to live independently she did need a lot of help but before Alzheimer's she was amazing and we had adapted her home and gadgets as much as possible. Throughout her final 3 years in care I wished for it to end as there is only one thing you are waiting for when there is absolutely no connection to everyday life. No quality only distress. It was not to be for such a very long time. I'm OK, I think! I can cry at the least little thing but then I pull myself together and remind myself that no matter what I wouldn't want mum or us to be back in those last three years. My upset is that at every step to get help and support, whether that is medication or daily living, is a struggle and there is no doubt in my mind that once in care you certainly do not receive the level of care from the mental health team that you thought you would. Our GP was supportive but beyond that I have no words of praise apart from the wonderful staff in the residential and nursing homes. Over the last few years supporting MIL with lung cancer (lung failure) and a year later FIL with heart failure I am fully aware of the lack of support for sufferers with brain failure. Working from home must be a challenge and of course offers no escape from the challenges day and night. Take care of yourself. I know everybody tells you that and once on that treadmill of dealing with everything the question of "How?" springs to mind and seems like something else to add to the "to do" list Help from the willing hands of others even if that's allowing you just to leave the building without worry. xxx