Antihistamines as sleep aid

WORRIER123

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Oct 1, 2015
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Now that kind of statement from the medical health team would just make my blood boil. My mum does not go to a day care facility, but I keep her busy, busy, busy. From 9a.m and still we have the sleep problems through the night.

Most people from the medical profession make my blood boil. Not had any help from them. Just the constant labelling of 'he's got dementia that's how it is'
 

marionq

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Apr 24, 2013
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Scotland
Most people from the medical profession make my blood boil. Not had any help from them. Just the constant labelling of 'he's got dementia that's how it is'

IT seems to be GPs who don't have expertise on this. From the start the psychiatrist at the Memory clinic would say to me "We will try xyz at a low dose and see how he gets on. Then we can raise the dose or try something else if it doesn't work". At no time did I feel that I was dismissed. Our GP practice have been good too. Of course it doesn't make dementia go away but at least you feel you have some backing.
 

WORRIER123

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Oct 1, 2015
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IT seems to be GPs who don't have expertise on this. From the start the psychiatrist at the Memory clinic would say to me "We will try xyz at a low dose and see how he gets on. Then we can raise the dose or try something else if it doesn't work". At no time did I feel that I was dismissed. Our GP practice have been good too. Of course it doesn't make dementia go away but at least you feel you have some backing.
I agree totally
The memory clinic didn't suggest any medication I may revisit this to ask why
However the community care assessor has picked up on the fact my dad's GP is all to quick to relate everything to dementia and faxing them to say there is always an underlying issue causing falls and to always check. He said do you mind if I do this
Mind I said I could kiss you
 

jenniferpa

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Jun 27, 2006
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I just want to remind people that most of the over the counter sleep aids that use antihistamines are specifically counter indicated if the person taking them has high blood pressure.
 

MERENAME

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Jun 4, 2013
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Update

It's been about 6 months since Mum, and me, had a full nights sleep. On Monday night she was up and down 48 times. On Tues night she started the mitrazapine 15mg. She fell asleep the minute her head hit the pillow at 8.30pm. At 8.30am I went to wake her and she was snoring away. Left her 10 mins then went back in and she was awake but wanted to snuggle in for half an hour because she said she was cosy. When she got up at about 9.15am she was a bit unsteady but she always is due to the arthritis in her knees. Didn't seem groggy or zonked out, in fact after her shower and pain meds she was as good as I've seen her for ages. I didn't sleep a wink. I guess my sleep pattern has been so knocked out of whack that it will take a while. Really hope this reprieve lasts.
 

WORRIER123

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Oct 1, 2015
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It's been about 6 months since Mum, and me, had a full nights sleep. On Monday night she was up and down 48 times. On Tues night she started the mitrazapine 15mg. She fell asleep the minute her head hit the pillow at 8.30pm. At 8.30am I went to wake her and she was snoring away. Left her 10 mins then went back in and she was awake but wanted to snuggle in for half an hour because she said she was cosy. When she got up at about 9.15am she was a bit unsteady but she always is due to the arthritis in her knees. Didn't seem groggy or zonked out, in fact after her shower and pain meds she was as good as I've seen her for ages. I didn't sleep a wink. I guess my sleep pattern has been so knocked out of whack that it will take a while. Really hope this reprieve lasts.

Wow I want that for dad. He has only woke once or twice lately but now I can't sleep as my sleeps disrupted
Dad has osteoarthritis
Wish they would give dad something
 

MERENAME

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Jun 4, 2013
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scotland
It was the consultant psychiatrist who prescribed it off label. I was a bit apprehensive but also a bit desperate. It will be reviewed by the cpn in 2 weeks. It's very early days but so far so good. Hope I'm not speaking too soon but I think it's the right med.
 

la lucia

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Jul 3, 2011
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It's been about 6 months since Mum, and me, had a full nights sleep. On Monday night she was up and down 48 times. On Tues night she started the mitrazapine 15mg. She fell asleep the minute her head hit the pillow at 8.30pm. At 8.30am I went to wake her and she was snoring away. Left her 10 mins then went back in and she was awake but wanted to snuggle in for half an hour because she said she was cosy. When she got up at about 9.15am she was a bit unsteady but she always is due to the arthritis in her knees. Didn't seem groggy or zonked out, in fact after her shower and pain meds she was as good as I've seen her for ages. I didn't sleep a wink. I guess my sleep pattern has been so knocked out of whack that it will take a while. Really hope this reprieve lasts.

Ha! Fantastic that's exactly what happened with my mother too. And just like you, I didn't sleep. I finally got a respite break and was exhausted.

I found it seems to make my mother engage with the world a little better and her neighbours, who have known her for years, said the same. She's also just more positive in general. I guess broken sleep is bad for everyone.

My mother has been on it for 4 months now and the only time she has had disturbed nights since then has been when she had a UTI. So fingers crossed for you.

I think you need to treat yourself to something relaxing - maybe a good massage or a movie and wine and enjoy a return to sleep. I'm really pleased that it seems to work for your mother - long may it last.
 

Slugsta

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Aug 25, 2015
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South coast of England
That's good news Merename, I hope it continues.

Worrier123, have you tried giving your dad some paracetamol at bedtime? It could be pain from his arthritis disturbing his sleep.
 

la lucia

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Jul 3, 2011
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Wow I want that for dad. He has only woke once or twice lately but now I can't sleep as my sleeps disrupted
Dad has osteoarthritis
Wish they would give dad something

I agree with Slugsta that pain relief may be what your dad needs. My mum was briefly on a weekly, low dose morphine patch which helped her after a fall.

The thing with Mirtazapine is that it is not a sleep medication as such. It works by suppressing the 'urge' to get up and move which is caused by agitation/sundowning.

For anyone reading this I really recommend talking to your community mental health team for 'big' dementia problems because they tend to be up to speed with the specifics of dementia. Also, some kinds of medication can only be initially prescribed by a consultant who will then pass it on to the GP.
 

MERENAME

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Jun 4, 2013
236
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scotland
Update

I thought I would update this thread for anyone dealing with sundowning, sleep disturbance and mirtrazapine.
After the first night of solid sleep she was pretty good all day. Unfortunately she didn't sleep much the second night. Up 12 times, which is an improvement on 48 which was the night before she started the mirtrazapine but not exactly restful. 3rd night only up 4 times stopped by 11pm. 4th night 38 times but stopped at 3am. 5th night 5 times but stopped by 11pm.
So far no side effects. Not groggy or hungry. If anything she is brighter during the day which I think is due to actually getting some sleep. Although she is still getting up and down it hasn't been going on throughout the whole night which it was before.
She has a review after 2 weeks. Since there haven't been side effects they will either leave her on 15mg or up it to 30mg. If they leave it on 15mg I will suggest moving it to 6pm dinner time to relax her a bit earlier. If they up her to 30mg then as lalucia said it may be less sedating. I tried to research this and found that this conclusion was based on the comparison between european and american studies which had used different doses. Basically there isn't enough research for off label use and what little there is uses very small numbers of subjects. I spoke to someone who had taken mirazapine and she said it put her to sleep on 15mg, 30mg and 45mg. If they up the dose I hope it gets to the root of the problem but am prepared for sleep to worsen for a while.
I will update again after her first review. Thanks to everyone.
 

la lucia

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Jul 3, 2011
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I spoke to someone who had taken mirazapine and she said it put her to sleep on 15mg, 30mg and 45mg. If they up the dose I hope it gets to the root of the problem but am prepared for sleep to worsen for a while.


It works differently in pwds apparently which is why the studies for people that don't have dementia, aren't really relevant.

If it doesn't work for your pwd I hope you have a consultant who is willing to work with you to trial other things. The night time agitation problem is awful for carers.

Meanwhile, There's an ongoing NICE clinical trial right now and they are apparently recruiting if anyone is interested.

There's also a database of studies on the academic research boards. But I can only access most of them when I am in London in my former university library. Sadly a lot of them are 'gated' without a university login.
 

MERENAME

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Jun 4, 2013
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scotland




It works differently in pwds apparently which is why the studies for people that don't have dementia, aren't really relevant.

If it doesn't work for your pwd I hope you have a consultant who is willing to work with you to trial other things. The night time agitation problem is awful for carers.

.


I did come across the one that showed that it doesn't work for depression in pwd. The sedation is a potential side effect that would have been useful. The underlying cause is anxiety so I think that finding a way to treat that is the most important.

I have found the cpns and psychiatrists to be very helpful. Day care saves my life but is only available twice a week for 4 hours. Some of the pop in carers are diamonds. Just wish social services would train their staff better and give them enough resources to actually help.
 

MERENAME

Registered User
Jun 4, 2013
236
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scotland
Update

Well 2 weeks on 15mg of mirtazapine and it has helped a little. During the day she is a bit less repetitive. Sleep wise she isn't having quite as many terrible nights but she is still having them. There does seem to be a pattern with Monday and thurs nights being the worst and tues nights the best. It's tues today and I'm shattered as it was one of the nights from hell last night. Waiting for cpn to phone. I expect they will say 2 more weeks on 15mg then up to 30mg. Not sure how much longer I can go on without sleep. I'm sure sundowning is one of the main causes of carer breakdown. We need more research into drugs to deal with it.
 

WORRIER123

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Oct 1, 2015
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There's no pattern is there. Some nights fine others awful.
The community nurse said to me there is always a reason for the wake up I am not convinced. First wake up last night was 2hrs after going to bed thinking its time to get up the next was throats clearing the next not knowing the time of day the next calling me to tell me he was using the loo.
Totally agree sleep deprivation is the worst and someone must know what can be given surely if the disease means they no longer need sleep the brain must show this and more needs to be researched. It's the worst part the memory I can cope with but not lack of sleep
 

MERENAME

Registered User
Jun 4, 2013
236
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scotland
It's the worst for me too worrier. Unless you have experienced it you really can't appreciate how much of a strain sundowning causes.
 

WORRIER123

Registered User
Oct 1, 2015
1,174
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It's the worst for me too worrier. Unless you have experienced it you really can't appreciate how much of a strain sundowning causes.
I work and have to be up at 5.30am, I really notice the days where I get a nights sleep
Never know though from one day to the next what the night will bring
It's no good explaining day from night and time on a clock
 

MERENAME

Registered User
Jun 4, 2013
236
0
scotland
I worked up until just before my dad died, mixed dementia. His sundowning was different from mums and I found it less upsetting. Mum is like a clingy child and it's so hard to deal with when you get no sleep.
 

MERENAME

Registered User
Jun 4, 2013
236
0
scotland
Touch wood

Update. Mum has slept all night for 4 nights in a row. She is now starting her 3rd month on mirtazapine and is now on 30mg. I know it probably won't last but has made a huge difference as she is also being a lot less repetative in general but her appetite has increased which I have to keep an eye on. I understand that AD's can only be prescribed off label by a consultant psychiatrist so I would urge anyone dealing with sundowning and sleep disturbance to go through the mental health team rather than the GP as they have more options and probably more experience. Thank you to everyone who has commented to this thread as I doubt I would have gotten 4 nights sleep without you.
 

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