Too good to be true - memantine and what to do

[White Rose]

Well as I wrote in a previous post we had a lovely couple of days when my partner started on memantine. Sadly it hasn't lasted and he seems worse than ever now - threw the electric toothbrush down in a rage last night because he didn't know what it was or what to do with it - peed all over the floor of the en-suite this morning because he didn't sit properly on the toilet, wet his trousers this morning (hasn't done that for some weeks) . And he's still only on the 5mg tablets, they increase next week to 10.
I called the GP to discuss but have to wait till Tuesday for telephone appointment.
So what to do - carry on with memantine, discontinue memantine and return to donepezil, discontinue pills completely, take both memantine and donepezil?
Does anyone have experience, can give advice?
It's all very very depressing after having such high hopes.

 

[nitram]

Can you get a sample and take it to the GP to check for a UTI?

 

[lemonbalm]

Hello @White Rose . I'm sorry to hear that. I had my fingers crossed for you when I read your previous post. It's crushingly disappointing when new medication seems to work for a short time. I've spent much of the last 3 years holding my breath in the hope that the latest tweak in medication will make mum calm for more than a few days, although we have managed a few weeks on occasion. I understand that Memantine takes a while to have an effect, so I wouldn't give up on it yet. @nitram may be right about a possible uti?

 

[annielou]

Oh dear what a shame. So sorry for you both that positive results didn’t continue. So upsetting. Could it be his body adjusting to change? Or infection as suggested? Maybe it will work better when increased again.. I will keep my fingers crossed it does ? What a long time to wait for Drs Call I hope things calm down a bit before then for you.

 

[Starting on a journey]

I would check infection and then stick with the drug at least til 10mg and then speak to doctor. As far as I am aware a GP cannot prescribe memantine, they have to do it under instruction from a consultant (my doctor checked this out last summer as he wanted to give it to mum but had to wait to get consultants permission)

 

[Woo2]

I would be tempted to carry on for a little longer as was advised it can take up to 6 weeks to take effect fully , it may be pure coincidence but I would monitor and keep a note and if not better before next Tuesday ring dr , do you have memory clinic / mentos health team you can call and ask advice ? Fingers crossed for you .

 

[White Rose]

Thank you all for your responses, I will monitor him, stay on the memantine till I speak to the GP. We have never been referred to a memory clinic but the GP said she was going to get us on the list for when they reopen for visits. Maybe UTI but doubtful as he's been checked for that before whenever there are incontinence issues, which tends to be irregularly. I thought we'd nailed it, reminders for the loo, roughly the same times everyday, guess that's the nature of this horrible disease, can only go downhill. On the positive side his speech and vocab are better than when he was on Donepezil. It's just so disappointing after the nice couple of days we had, I'm very down today, miserable along with the weather!

 

[Woo2]

I’m sorry you feel low , hopefully the weather will improve soon and you feel a bit brighter , sending a ? . Hope too that you get referral through soon,mum sees her cpn once a year but they have rung me once during lockdown to offer assistance if needed.

 

[White Rose]

I’m sorry you feel low , hopefully the weather will improve soon and you feel a bit brighter , sending a ? . Hope too that you get referral through soon,mum sees her cpn once a year but they have rung me once during lockdown to offer assistance if needed.

Thank you @Woo2, hope your mum is getting on OK.

 

[Woo2]

Thank you , take care .

 

[Vitesse]

I would persevere. My husband has been on memantine for 2 years after being on Rivastigmine. He definitely seemed better when the dosage had settled down. (These weeks of incremental doses are a bit of a nuisance). None of these are magic bullets of course, and over the last year, he has also had risperidone and Mirtazipine, in various doses. It seems that each tIme I speak to the Mental health doctor, she tells me to try a different dose. They don’t know, and each person is different so it’s trial and error.
I can understand how you feel . We have two or three good days, I’m over the moon, and then I come back to earth with a bump!! I should know by now what will happen, but I still feel disappointment when we revert to the old problems. This week it’s him getting extremely angry If I talk to anyone on the phone for more than about 5 Minutes. It’s always supposed to be ‘that feller’, whoever that is!! (it’s a waste of time and energy telling him I never want to see another feller as long as I live!!!). Lockdown is bad enough without having to be wary of speaking on the phone!!!

 

[White Rose]

I never want to see another feller as long as I live!!!

So funny, that's what I say to my friends! Thanks for your advice, I'll persevere, it's so b****dy up and down, the rest of today he's been as good as gold, no anger, keeping himself occupied with books, cheerful - it might all change by the end of the day though, I'll try getting him to bed earlier, maybe he was tired last night.

 

[Vitesse]

So funny, that's what I say to my friends! Thanks for your advice, I'll persevere, it's so b****dy up and down, the rest of today he's been as good as gold, no anger, keeping himself occupied with books, cheerful - it might all change by the end of the day though, I'll try getting him to bed earlier, maybe he was tired last night.

I hope things improve, I’ll look forward to hearing how you’re getting on. Here, he doesn’t do anything to occupy himself except snooker on TV, which I encourage to keep him quiet. He’s taken to going to bed at 8pm or thereabouts, which is fine except that he is then up at 5, wanting to have a shower and get dressed. It’s driving me around the bend. i can’t reason with him of course, so I’m expected to go along with it.

 

[White Rose]

I hope things improve, I’ll look forward to hearing how you’re getting on. Here, he doesn’t do anything to occupy himself except snooker on TV, which I encourage to keep him quiet. He’s taken to going to bed at 8pm or thereabouts, which is fine except that he is then up at 5, wanting to have a shower and get dressed. It’s driving me around the bend. i can’t reason with him of course, so I’m expected to go along with it.

Interesting how things are different for each PWD. My partner would never take himself to bed or get up of his own accord. We head for bed at about10.30 and he'll go to sleep as soon as he's in bed but wake up time varies, lately it's been 6 but today I managed to sneak out of bed before he woke up and he got up looking very confused at about 7.40. 5 is much too early to have to get up, I can imagine how annoying that is - all the hours you then have to fill! If mine wakes at 5 I tell him to go back to sleep and then try to doze myself but he'll usually just lie awake huffing and puffing!

 

[Vitesse]

Interesting how things are different for each PWD. My partner would never take himself to bed or get up of his own accord. We head for bed at about10.30 and he'll go to sleep as soon as he's in bed but wake up time varies, lately it's been 6 but today I managed to sneak out of bed before he woke up and he got up looking very confused at about 7.40. 5 is much too early to have to get up, I can imagine how annoying that is - all the hours you then have to fill! If mine wakes at 5 I tell him to go back to sleep and then try to doze myself but he'll usually just lie awake huffing and puffing!

I certainly recognise the huffing and puffing if I suggest he hangs on a while!!

 

[Dragonfly1]

Well as I wrote in a previous post we had a lovely couple of days when my partner started on memantine. Sadly it hasn't lasted and he seems worse than ever now - threw the electric toothbrush down in a rage last night because he didn't know what it was or what to do with it - peed all over the floor of the en-suite this morning because he didn't sit properly on the toilet, wet his trousers this morning (hasn't done that for some weeks) . And he's still only on the 5mg tablets, they increase next week to 10.
I called the GP to discuss but have to wait till Tuesday for telephone appointment.
So what to do - carry on with memantine, discontinue memantine and return to donepezil, discontinue pills completely, take both memantine and donepezil?
Does anyone have experience, can give advice?
It's all very very depressing after having such high hopes.

We have experienced similar things with my Dad. His anxieties became worse on 10mg so it was upped to 15mg. We have had the most traumatic week with anxiety attacks. I thought Dad was having a heart attack ladt night. Then he tried to leave the house tonight to walk to my sisters after everything we tried failed and Dad did not know Mum or myself (his daughter). I have been living with them since mid February before lockdown was imposed. Memantine has gone back down this week after his medication review to 10mg but he didn’t have any anxiety attacks before memantine. He had hallucinations often though where he often saw people around the house. We have seen Dad rapidly deteriorate on Memantine to be honest.

 

[Dragonfly1]

Thank you all for your responses, I will monitor him, stay on the memantine till I speak to the GP. We have never been referred to a memory clinic but the GP said she was going to get us on the list for when they reopen for visits. Maybe UTI but doubtful as he's been checked for that before whenever there are incontinence issues, which tends to be irregularly. I thought we'd nailed it, reminders for the loo, roughly the same times everyday, guess that's the nature of this horrible disease, can only go downhill. On the positive side his speech and vocab are better than when he was on Donepezil. It's just so disappointing after the nice couple of days we had, I'm very down today, miserable along with the weather!

Perhaps you could request blood tests to check for low sodium too. We had a urine test which came back clear, but the GP was very good and has prescribed something to stop dad waking at night to pee. Fingers crossed it works. My Dad must be exhausted at the end of the Dad because he is up 3-4 times a night to the bathroom. We can only wait and see if they help him. I’m becoming more of a skeptic about medication as time goes on though.

 

[Dragonfly1]

I would check infection and then stick with the drug at least til 10mg and then speak to doctor. As far as I am aware a GP cannot prescribe memantine, they have to do it under instruction from a consultant (my doctor checked this out last summer as he wanted to give it to mum but had to wait to get consultants permission)

The GP can only take over medication of memantine after 6 months or when my Dads medication dosages are right for him.

 

[Starting on a journey]

I think it depends on the area, my mums letter clearly stated that the gp prescribed the second months tablets and all subsequent tablets. From reading on TP I notice that we do not have a particularly long wait in our area for the memory clinic (6weeks), but we only saw the nurse and after a brief phone call after mum had taken the tablets for 6weeks, that was it ...their involvement was finished

 

[White Rose]

The GP can only take over medication of memantine after 6 months or when my Dads medication dosages are right for him.

Thanks for the replies @Dragonfly1. We've never seen a memory clinic so GP must have prescribed the memantine. He's gone up to the 10 mg dose today, I don't know what to expect. He's been doing OK on the 5 mg dose, anger has subsided and his awareness, eye sight and vocabulary are much improved. He's not sitting with his head hung morosely like he was on Donepezil. The toileting is a bit hit and miss, we had a good routine going and now he doesn't seem so aware of the need to go. But I do wonder why he needs to go up to 20 mg (it goes up weekly) and worried about side effects. Agree with you about skepticism with meds, do they really help or do they actually hinder? I've been researching on the web and read articles which state that the Alzheimer meds offer only a tiny help with the condition.