Evening all
I haven’t been on here for quite a while but have recently been having problems with my husband when he is sleeping. To put you in the picture he was diagnosed with Parkinson’s disease and dementia with Lewy bodies in 2021. He is on lots of different tablets, which seemed to be keeping various symptoms under control. However recently he has been screaming in his sleep, kicking and punching. Last night he was screaming and kicking and I was frightened that he would hurt himself. So I did my usual and gently stroked him arm to try to calm him. He however grabbed my hand and started squeezing it tighter and tighter until it was extremely painful. I’m sure if I hadn’t of shouted out myself he would have caused an injury. This is the third time this has happened. I have also received a punch on my arm. He’s dreadfully sorry and I know it’s not intentional. I thought about sleeping in the spare room but the screaming would still disturb me and I would br frightened of him hurting himself. I was just wondering if any one has any ideas that could possibly help us both?
Hi Westpest,
Welcome back to the forum. We’re sorry to hear things are difficult of late. Obviously we would recommend you to report theses changes to your husband’s medical team as soon as possible, but also as a reminder the helpline is an excellent resource. You can reach them on 0808 800 0303. There is always someone who wants to help.
With our best wishes,
Jason
Forum Moderator
Good morning Westpest … Sorry to hear your husband is having these problems.
I am 70 years old & was diagnosed with atypical Parkinson’s in June 2023.
I live alone so no one to bother. I too have this sleep disorder. Vivid
dreams / nightmares & my incredibly heavy duvet ends up mostly on the floor.
I also hurt myself in these dreams … my back, knees & fingers hurt most mornings.
It seems I attempt to break one of my fingers most nights.
I reported this to my Parkinson’s nurse & GP & have been put on Clonazepam. I have not started taking it yet.
About clonazepam
Clonazepam belongs to a group of medicines called benzodiazepines.
It’s used to control seizures or fits due to epilepsy, involuntary muscle spasms, panic disorder and sometimes restless legs syndrome.
It works by increasing the levels of a calming chemical in your brain called gamma-aminobutyric acid (GABA). This can relieve anxiety, stop seizures and fits or relax tense muscles.
Clonazepam is available on prescription only. It comes as tablets and as a liquid that you swallow.
Key facts
- If you’re taking clonazepam for seizures or muscle spasms, your dose will be increased gradually and it might take up to a week to work fully. For panic disorder and restless legs syndrome, clonazepam should take around 1 hour to start working.
- The most common side effect of clonazepam is feeling sleepy (drowsy) during the daytime. Do not drive or ride a bike if this happens to you.
- It’s possible to get addicted to clonazepam, but it’s not likely to be addictive if you take it for a short time (2 to 4 weeks).
- If you take clonazepam for more than 2 to 4 weeks, your dose will need to be reduced gradually before you stop taking it.
- Do not drink alcohol while taking clonazepam. There’s a risk you can sleep very deeply and you may have trouble waking up.
More in Clonazepam
Hello Westpest,
I’m just chipping in here to say that Clonazepam has hit the spot for me. I was initially prescribed Melatonin but that made me feel quite down in the daytimes. I’ve probably had PD for about 3 years although only diagnosed in 2023. I used to thrash around, call out and twitch and throw the covers off at night. It was one of my earliest symptoms come to think of it. My wife and I sleep apart because the nights were not good for her.
Clonazepam has it’s drawbacks of course - I’d suggest a long talk with your GP/neuro before getting into it. The withdrawal symptoms, should you choose to stop taking it, are very serious and you need to be tapered off the drug over several weeks. I tried a short course but once I stopped taking it the problems of Restless Leg Syndrome and REM sleep disorder returned very quickly. I take a slow release form of Sinemet at night and that adds to the dilemma by giving me strange dreams - but at least these are not ‘acted out’ like they used to be. I feel for you in that situation - quality sleep is what we so badly need.
Best of luck,
J
All thank you for your advice it is much appreciated. I believe the dementia with Lewy bodies is the cause of the aggressive behaviour. My husband also has paranoia, hallucinations and sees things that aren’t there. It is due to this that he has been prescribed with Rivastigmine. He has been prescribed with a fair amount of medication. The specialist has said there is not much more that can be done in adjusting medication now as it’s a fine balancing act.
I think from your comments the best idea would be to speak to the specialist. I find both the Parkinson’s and the dementia with Lewy bodies extremely hard to cope with. Knowing that things are only going to get worse extremely worrying. It’s also difficult for me to speak to his specialist as i don’t want to appear as telling tales. My husband constantly says that “I’m doing really well” and I feel that if I pipe up about the aggression that he would be devastated. The last thing I want to do is to upset him or make him feel worse. This is why I asked on here as I can speak freely without causing any problems.
Hi
Sorry I’ve just checked my husbands prescription and he already takes clonazepam 500 micrograms daily. I just thought I should mention this
You’re not alone, Westpest. We’re pleased to hear that you will reach out to your specialist. Please know our helpline is also here for you and can offer a listening ear and provide advice or support where possible. You can give them a call for free on 0808 800 0303.
Best wishes
Freya
Parkinson’s UK Moderation Team