Whether to stop taking memantine or push on?

[MrWobbles]

I’ve posted before re use of memantine. My wife has mixed dementia (v d plus Alzheimer’s). She started 5mg of memantine last Sunday, she’s taken 5 doses so far. These are taken just before bedtime. The result is excessive tiredness and general confusion. It’s early days but I’m obviously concerned, like everyone else caring for a dementia patient, that I’ve done the right thing. The specialist, at our local NHS Community Mental Health Unit, who gave the go ahead for treatment, suggested I stopped the drug, if I had any concerns and there would be no adverse effects after such a short period. The literature, on the use and outcomes of taking memantine are based largely informal case studies taken from forums like ours, and give a more confused picture. Some patients experience zero withdrawal effects whilst others are not you fortunate.
Any advice greatly welcomed. Anxious Mr Wobbles.

 

[sue31]

I’ve posted before re use of memantine. My wife has mixed dementia (v d plus Alzheimer’s). She started 5mg of memantine last Sunday, she’s taken 5 doses so far. These are taken just before bedtime. The result is excessive tiredness and general confusion. It’s early days but I’m obviously concerned, like everyone else caring for a dementia patient, that I’ve done the right thing. The specialist, at our local NHS Community Mental Health Unit, who gave the go ahead for treatment, suggested I stopped the drug, if I had any concerns and there would be no adverse effects after such a short period. The literature, on the use and outcomes of taking memantine are based largely informal case studies taken from forums like ours, and give a more confused picture. Some patients experience zero withdrawal effects whilst others are not you fortunate.
Any advice greatly welcomed. Anxious Mr Wobbles.

My mothers just started her 2nd week on this 10mg now, her first week was 5mg. increasing to 15 next week then 5 weeks at 20mg.
She was perscribed to take it in the morning.
No noticeable effects so far.
Why was your wife’s perscribed? We asked for something to curb her agitation and possibly make her more compliant in accepting carers help. Nothing has improved so far so guess it’s a wait & see exercise.

 

[MrWobbles]

Thank you so much for responding. The aim is to slow down the inevitable effects of the Alzheimer’s, it won’t stop them but can delay things. This has obvious appeal plus the positive side-effects of calmness etc., that you mention. However, being totally knocked on 5mg does not bode well!!

 

[Defiance]

I was started on 5 mg then 10 then 15 I couldn't tolerate the 15 so I was dropped to 10 which I found to be ok. I have been on it now for just over a year and it has helped me greatly. I also take it at bedtime as directed by the memory clinic. All the very best to you.

 

[Angela79]

I’ve posted before re use of memantine. My wife has mixed dementia (v d plus Alzheimer’s). She started 5mg of memantine last Sunday, she’s taken 5 doses so far. These are taken just before bedtime. The result is excessive tiredness and general confusion. It’s early days but I’m obviously concerned, like everyone else caring for a dementia patient, that I’ve done the right thing. The specialist, at our local NHS Community Mental Health Unit, who gave the go ahead for treatment, suggested I stopped the drug, if I had any concerns and there would be no adverse effects after such a short period. The literature, on the use and outcomes of taking memantine are based largely informal case studies taken from forums like ours, and give a more confused picture. Some patients experience zero withdrawal effects whilst others are not you fortunate.
Any advice greatly welcomed. Anxious Mr Wobbles.

Hello MrWobbles. My husband is now on 5mg melatonin given two hours after food and two hours before bedtime. It has helped him sleep as he was getting totally agitated and picking at the covers for hours and saying 'I don't know' continually so I was awake as well. He also had anger in a temper at his own brain because it wouldn't work for him . With that and getting up for the toilet several times in the night we were both washed out next day as I had to get up with him. The melatonin definitely helps although how does one judge whether it's making him more confused or whether it's progression of the dementia? He's now sleeping better and using incontinence pants (and bed protector as they leaked) but does still wake saying I don't know. Tempers are reduced which makes giving instruction easier as he didn't like me having to tell him what he needed to be doing yet couldn't make any decisions himself. I did try reducing melatonin to one tablet but noticed a change in his ability to sleep so put him back to two.

 

[MrWobbles]

Thank you for your most valuable posts everyone. These will certainly help me make a more informed decision. Take care and good luck with the caring. Mr Wobbles

 

[foxxyleo]

I’ve posted before re use of memantine. My wife has mixed dementia (v d plus Alzheimer’s). She started 5mg of memantine last Sunday, she’s taken 5 doses so far. These are taken just before bedtime. The result is excessive tiredness and general confusion. It’s early days but I’m obviously concerned, like everyone else caring for a dementia patient, that I’ve done the right thing. The specialist, at our local NHS Community Mental Health Unit, who gave the go ahead for treatment, suggested I stopped the drug, if I had any concerns and there would be no adverse effects after such a short period. The literature, on the use and outcomes of taking memantine are based largely informal case studies taken from forums like ours, and give a more confused picture. Some patients experience zero withdrawal effects whilst others are not you fortunate.
Any advice greatly welcomed. Anxious Mr Wobbles.

My mother also has dementia. She was put on a certain medication to supposedly help.
It had my mother so drugged up that we decided to stop.

 

[Allbut]

My husband has Alzheimer’s and was put on memantine 5mg . After a while I stopped it and was told I shouldn’t gav3 done that. So b@ck to 5 mgFor 2wks then 10 for 2 weeks, then 15 for 2 weeks and then a review… said should be on 10 mg, after 6 weeks review.. he is now on half a tablet but I am not happy with that either!
he hasn’t known me since 2020, he now has double incontinence . Lots of falls, mainly sliding off settee, sleeps a lot. The only help I have is to get him ready for bed. Yes I am tired at 83 but I want him here….

 

[MrWobbles]

Hello Allbut Thank you for your post. Would you please tell me how long your husband took the 5mg dose before you stopped? You said ‘after a while’. My wife has been taking 5mg memantine for one week only and is sleeping most of the day. I want to stop it, and can if I wish, according to the doctor, but sooner than later.
It’s a game of roulette and one feels damned if you do and damned if you don’t!
I’m totally exhausted with the worry and responsibility!!!!!!

 

[MrWobbles]

My husband has Alzheimer’s and was put on memantine 5mg . After a while I stopped it and was told I shouldn’t gav3 done that. So b@ck to 5 mgFor 2wks then 10 for 2 weeks, then 15 for 2 weeks and then a review… said should be on 10 mg, after 6 weeks review.. he is now on half a tablet but I am not happy with that either!
he hasn’t known me since 2020, he now has double incontinence . Lots of falls, mainly sliding off settee, sleeps a lot. The only help I have is to get him ready for bed. Yes I am tired at 83 but I want him here….

My husband has Alzheimer’s and was put on memantine 5mg . After a while I stopped it and was told I shouldn’t gav3 done that. So b@ck to 5 mgFor 2wks then 10 for 2 weeks, then 15 for 2 weeks and then a review… said should be on 10 mg, after 6 weeks review.. he is now on half a tablet but I am not happy with that either!
he hasn’t known me since 2020, he now has double incontinence . Lots of falls, mainly sliding off settee, sleeps a lot. The only help I have is to get him ready for bed. Yes I am tired at 83 but I want him here….

 

[MrWobbles]

Hello again Allbut I’ve just reread your post and wanted to say how much I respect you. You are probably active on all fronts and desperately concerned about your dear husband. He’s obviously struggling badly with this wretched disease and you will be struggling, too. My wife is 77 and I’m 82. I can’t bear to see her unwell, with no prospects of recovery, only having to employ coping strategies.
I send you my love. Mr Wobbles