Thrashing about at night and restless sleep

My husband is having a great difficulty staying asleep and he thrashes about and is very agitated at night. He ends up pulling out his catheter most nights because of his constant movement. His doctor had prescribed Clonazepam, it stops the thrashing but it makes him lifeless during the day so I am reluctant to give it to him. I guess lifeless is a relative term regarding PSP but is makes him scary drowsy. Has anyone tried anything that helps with the night agitation but does not worsen energy in the day time?

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  • i have PSP and have problems sleeping

    But cannot take anything for it

    i tend to wake v early and cannnot get back to sleep then am restless all dayBut a lower dose of the conazepam might be the answer

    jill

  • Hi Jill,

    We saw his doctor today and he changed the prescription to Lorazepam which is in the same class of drugs but has a lower half-life so may not make him drowzy during the day. I gave it to him tonight. He is still moaning quite a bit, but not thrashing. I hope he will do well tomorrow and not seem totally lifeless. I was told to cut the tablet in half if it makes him too drowsy during the day. I wish you luck in getting rest and I will let you know how the Lorazepm works for him.

    Love,

    Judy

  • My husband had the same problem. Somehow the tv seemed to help him sleep.

    I would get up at all hours during the night to switch it off after he had fallen asleep but after a while I would find it on again as he had the remote control. I eventually bought him a pair of good earphones so that he could have the tv on all night if he wished. He didn't seem able to sleep without the comfort/company of the tv. This helped him to get a few hours of good sleep.

    Best wishes

    Lina

  • Lina, I know what you mean. Dave has the Yankees baseball game on right now and he is snoring but if I try to turn it off he says "what TV on" so I turn it back on. I have to laugh.

  • I have found that audio stories and a pair of headphone have helped. I also find this useful for myself when I have trouble sleeping (more than usual that is)!! Sometimes the drone of a voice in the background is just enough to help. It is less intrusive than the TV as there are no flickering lights and movement. Hope this helps.

    Take care............SuzieQ x

  • SuzieQ, thanks, I will try that. We have some comfy boise earphones that might be good for him to sleep in. I think I will get him the bible on CD as he asks me to read it to him all of the time. The bible reading kind of frightens me because I believe that he thinks he is dying. He also will call me urgently during the day and nigth and say "Judy pray with me!" It breaks my heart and I ask him if he is okay and he says yes, but it leaves me wondering quite a bit. I was caring for my dad when he was dying of cancer. He did this same thing the whole time that I was with him. It is as though they are trying to get closer to God. Dave is so young and I am not ready to lose him. I still can't believe that this is happening.

    Love,

    Judy

  • Depending on your husbands other symptoms and his particular medical history another drug to consider might be amitriptyline. This is drug frequently used in PSP and is usually well tolerated. It is useful because it has a five fold effect. It is a tricyclic antidepressant which not only helps with low mood agitation and anxiety but also aids a more restful sleep, it helps with neuropathic pain or uncomfortable sensations in the limbs, it can decrease nocturnal enuresis (wanting to pass urine during the night) and helps reduce excessive salivation. Of course all medication has to be prescribed by a GP or neurologist and they will have to consider if the medication is suitable for that individual under those circumstances but amitriptyline is a drug frequently used in PSP.

  • Kath

    Thank you for the information! This seems like something that would address all of the problems that we are having. I will call our PSP nurse tomorrow and she can ask the neurologist about this drug.

    Thanks again, Judy

  • Dear Judy,

    Mum was started on Clonazepam to help stop the horrendous, vivid nightmares she was getting. Dad only gives her half a tablet each night to try and avoid the "hangover" effect the next day and, so far, it seems to work relatively well for her.

    Love Kathy

  • Hi Kathy,

    He was switched over to Lorazepam today. I hope that we were not too hasty with the switch. No one ever suggested that I cut the clorazepam in half, however they have told me to cut the Lorazepam in half. Dave has taken the Lorazem tonight and he keeps calling out which is not unlike usual, but he is not rolling and thrashing which is good as he wil not pull out his catheter. His neuro has urgently asked me to have a PEG inserted and I am now mulling over that again. He seems to think that Dave will not make it too much longer without the tube. I am not ready to lose him. We are both so young and this is just not fair. Today was a sad and difficult day.

    Love

    Judy

  • Oh Judy,

    I'm so sorry. This disease sucks so much, forcing us to make choices we don't want to have to make.

    LOTS OF LOVE and a great big cyber hug!

    Kathy x

  • Thanks Kathy and a great big cyber hug back to you!

  • My wife is on 75 mg. of Nortriptyline & 15 mg.of Mirtazapine at bedtime & has no sleep problems.

  • My husband has started having Temazepam 10mgs a night to help him sleep. Before this he was up and wandering around at night. After a week theTemazepam seems to be working.

  • Peter,

    We so need something as he fell again last week and broke ribs. He can climb right over his hospital bed railings. He is very strong and very young. I worry about him all night. It is like having an infant or toddler who is sick. You keep getting up to check on them, but this toddler can get out of the crib.

  • Judy, I am so sorry to hear of your situation. Have you got our leaflets on PEG feeding? If not you could phone the PSP Association HQ and ask for them to be sent out to you. The leaflets give lots of information about having a PEG which might help you and your husband to come to an informed decision. You can also phone your PSP Nurse Specialist who will go over the procedure with you and about the various implications and benefits of having the procedure done.

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