Evening everyone. My husband struggles to get a decent nights sleep due to his PSP and unfortunately tinnitus. Our drs are fantastic and prescribe sleeping pills when I ask. I said to the dr on one occasion that I knew they didn’t like to dish them out but he said “do you not think he has enough to cope with, if the tablets help him get some rest then he can have them”. Is there anything else anyone can recommend other than the zoplicone. A lot of the natural remedies he can’t have because of some of the medication he is already on. We have tried the sleep apps, meditation but nothing is helping. Some days his eyes are red raw as he is so tired. He won’t try a drop of brandy or even a glass of lager. I would love a nights sleep but more so I would love craig to get some rest. I have just sprayed lavender on his pillows 😂🤞
Sleeping: Evening everyone. My husband... - PSP Association
Sleeping
PSP can disrupt sleep patterns. Larry’s new thing it to get up around 11 at night. I park him in front top the TV and go back to bed.
I did see something about kiwi fruit having a sleep benefit. Eat two an hour before going to bed. It’s worth a shot. I haven’t tried it in Larry.
thesleepdoctor.com/2013/11/...
I will give the kiwi fruit ago for sure. Let you know how it goes. Thank you x
Is your husband well enough to get a little exercise in during the day? Is he stimulated with activities throughout the day to help tire him out? Lately I haven’t been practicing either of these because we’re trying a new drug for memory and he’s experiencing some nausea/dizzying side effects.
My guy doesn’t sleep well and I also prop him up in front of the TV. Last night I told him to watch the iPad in bed so that I could rest next to him. He mumbled something to me about being held hostage. I mumbled something back about not paying ransom and then he came back to bed with his iPad.
A hot cup of Chamomile tea before going to bed might help you, not sure if that would interfere with your husband’s meds or not. I can’t get my husband to try it (lol) but it helps me relax some.
Thank you, I will try the tea for sure. The exercise part would be difficult due to his lack of mobility. We do a little walk round the garden when he feels up to it. He has the TV on but as soon as I walk out he turns it of, I think he struggles to see the screen clearly because of his double vision. Will let you know about the tea though. Thank you x
Have you tried Amitriptyline 10 my can be helpful in psp cause it
relaxes muscles and drys the mouth and can help you sleep.
No we haven’t. I will speak to my Dr when we next go. Thank you x
Hi I have amitriptyline tablets between 6 and 7 every night I also have a cup of tea which is called snore and Peace by clipper that works for me my husband said I'm asleep but I don't snore !
Jeanette xx
Someone else recommend those. I will try the tea. I’m in the UK can it be bought off the shelf? Or is amazon by best bet x
hi I got mine from Waitrose there is also another tea which is made pukka xx
Trazadone was our saving grace. It helped very much and he slept well. Try to get your doctor to prescribe. I know how hard it is to see them restless and tired. You too.
Cuttercat
Thank you I will try anything x
Sleep or lack of was a huge battle for my husband, as he had sleep apnea too there was always a concern about depressing his breathing. He took Clonazepam which helped in the early days. We also did night time breathing/ relaxation exercises, aromatherapy oils. The last month of his life we achieved a slight improvement, he started Melatonin and Quetiapine and after about 2 months he was able to sleep for 1.5 -2hrs at a time. The plan had been to further increase these meds as he had a positive response.
You mentioned your husband’s red eyes -does he have problem blinking -he may need some eye ointment too??
I do hope you find something that works for both of you-it is exhausting!!
Love Tippy xxx
Yeah he does have an issue blinking as his eyes droop it’s a struggle to keep his eyes open. We have our consultant in a few days so I am going to ask her to prescribe something for him, she gave us the melatonin before, I don’t think they made a great deal of difference but we will try them again x
I do find Mum sleeps better just getting her out in fresh air - she is wheelchair bound so no exercise benefit, just getting fresh air and a bit of nature. Haven't gone the meds route to date.
Red sore eyes could be due to reduced blink and disruption of the tear film or maybe Blepharitis. Mum sees a cornea specialist to keep a check on hers. She has a real regime of Hyloforte eye drops 4 x, Clinitas Gel 2 x and Xalin night ointment. We also use an eye bag daily for 10mins and after bathe Mum's eyes. Since doing this her eyes are definitely less red & inflamed and her eye lashes have grown back.
Thank you for your advice, I certainly will look into that. It’s horrible that all these symptoms seem to come one after another. It must be awful for them what they have to put up with. It’s a cruel condition 😢
It breaks your heart doesn't it. The worse I had was when my Mum said to me one day "how she must be difficult to love now". In the terms of PSP we are lucky as her personality hasn't changed greatly and even now she can still demonstrate her sense of humour, even though she speaks very poorly.
There is still the spark of my husbands humour every so often but he has changed so much and I know it frustrates him but he knows we all still love him. I sometimes wonder how I would cope if I were in his shoes. Too sad xx
Hi, Ruth tried every sleep medication. They mostly only work for a limited time or cause drowsiness the next day. But she has settled on Sertraline 50mg in the morning and Mirtazapine 15mg at night (30mg did not work as well) and 3 drops of CBD oil at night. Still nights of bad sleep but generally a lot better. Especially on the nights she has a few glasses of wine!
Richard x
Richard I try to convince my husband that a little nip of brandy before bed will not do him any harm but he is having none of it lol. He has sertraline in the morning and I was thinking of swapping it to an evening. We have the Drs so I am going to ask about some alternatives. I have bought a blackout blind, some tea snore and peace that someone else recommended, a bolster pillow so he doesn’t slip between the ones he has and I have ordered a new clock with the light and white noise sound. I just try anything anyone recommends lol xx
Do ask about the Mirtazapine 15mg (not 30mg) as that is the pill Ruth takes to help with sleep. (Sertraline is just to keep her from getting down and seems to be working). And you have the nip of brandy! Richard x
Unbeknownst to my husband he woke me at 2AM. One of his arms found its way to my shoulder and he held on tight, which I didn’t mind, until he experienced an uncontrollable tremor. His other arm shot straight up into the air. I managed to tuck both of his arms close to his sides and placed a weighted blanket around him. Shortly after that he turned over, the heavy blanket rolled off and his arm went right back up into the air. He slept through both “arms in the air” experiences and after awhile he calmed down. The tremors lasted longer than his usual shaking and now I’m beginning to think that he was seizing. He is on a low dose of Clonazepam that is supposed to help. I’ll ask his doctor about this. Hum...
At 3AM he woke up and he was ready to start the day. Here’s the good part... I finally figured out how to connect a noise cancelling Bluetooth headset to our TV. I raised his bed to a sitting lounge position, put the headset on his ears and found a program that he could watch for hours. I moved over to my little twin bed that’s next to his, put a sleep mask on over my eyes, and I slept. Win-win! It’s the little things that we need to celebrate.
That made me smile, it’s lovely that your hubby seemed to be oblivious to his restlessness. Unfortunately due to having the vertical lift fitted into the bedroom, hubby and myself sleep in different rooms as he has had a smaller bed to accommodate the lift. I do wonder if we still shared a bed he would be less anxious. X
Is there room to place a small bed for yourself next to his small bed? I try to cuddle as often as possible. However lately I spend more time in my separate twin just to get a couple of hours of sleep.
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