My Dad was diagnosed with psp just a year ago, but was seeing a neurologist for parkinsons a few years before that. He has never been a sound sleeper, but now he wakes, not kidding, sometimes 30 times a night. It is unbelievable. Sometimes he only sits in his chair for less than a minute before he is demanding to get up again. He takes trazadone, lyrica, requip, baclofen, and melatonin to help and still his best nights, which are rare, he is only sleeping 4 hours straight. More often he sleeps maybe an hour. Alot of it has to due with pain, general restlessness and the feeling like he has to pee all the time, even though half the time, he won't urinate when given the chance. Help.

11 Replies

  • I sympathize, having seen very similar symptoms here. I recommend trying a convene or installed catheter. Once my guy, with a catheter, lost the habit of getting up to pee it made life much easier. Now he just uses incontinence briefs. As for the sleeping, when nothing else works, I get him a bit of Jameson's. Good luck! Peace, ec

  • Hello. Thanks for the reply. I wondered about a nightcap, but all his medication says not to take alcohol. It would be worth trying if it would give him some relief. Have you found it works?

  • I had an okay from the doctor for some alcohol, despite some meds being incompatible with it. After all, it's not like he was going to be operating heavy machinery, and lack of sleep is bad on its own, too!

  • Anything with Glen in front of it works for me, but then again I use a CPAP machine. You're right when you said a little alcohol works... my doctor doesn't give me any grief about it. I actually get the sense that he is saying really? He 's had so much taken away from him... you going to deny him this too?

  • Right. Our neurologist said, about overindulgence in sweets, "well, you have to live, don't you?!"

  • Like EC says I sympathize. Before my husband became permanently catheterized in...July (?)

    he would have small amounts of urine and or stand at the toilet for up to an hour. When he went to the urologist they took a sonogram of his bladder just after he urinated.....he actually had about 600MLs still in him. The Dr. told us that it was not an enlarged prostate but that the brain is not understanding what to do with the bladder. Nerve signals not getting through...Pee is staying put....for others it may be just the opposite, and it is continually flowing. But since my husband could not evacuate, they decided to give him a catheter . This has helped him immensely. I wonder if a cath would not help your dad. This may even reduce his pain and alleviate him getting up so often during the night....You might ask dr if any of the drugs have counterindications when used with any of those other never knows! Good luck and God speed


  • My mum was the same. The relentless need to go the bathroom was the main reason, so we had to eliminate it as there was a high risk she would fall. We started by putting on nappies or pull ups at night which helped initially. She would still get up but we insisted that she stayed in bed and that there was no need. It took her about a month to get used to this. The next problem was that the nappy would be soo full of urine that her clothes would be soaked through. We had an incontinence nurse do a blast scan at home that showed retention, something we knew as she had difficulty passing urine. She now has a long term catheter. It stops her from being in soaked clothes and has relieved the constant urge to pee and reduced the risk of falls. Worth looking into a catheter, it will take away the discomfort of constantly feeling the need to pee and keep your dad safe.

  • My wife used to wake about 5 times a night and take time to settle, while during the day would cat nap. She had a catheter fitted last Winter and since is less disturbed at night but will still wakes a couple of times a night. The night disturbance I think is because she gets confused and scared and needs reassurance that she is not alone.

    Now she only settles after I hold her hand before sleep and the nursing home night staff hold her hand for a few minutes in the middle of the night, they have asked if they can give her a stronger sedative which I and (luckily) the GP are against as we do not want her more comatose as her breathing is shallow and could cause more chest infection.

    We used to give the occasional (special occasions only) Jameson or Glen Fiddich nighttime tot via the PEG it did relax her but the nursing home and GP have vetoed this for now.

    The only remedy for me, before M moved into the nursing home, was getting in Marie Curie nurses to do 3 night shifts a week so I could sleep. It did not stop the waking but at least allowed me to recharge some brain function.

    Best wishes Tim

  • hi

    indwelling urinary catheter is the way forward rog was like this but can now sleep and makes him better when awake!

    julie xx

  • I just finished listening to a wonderful series called Awakening from Alzheimer's. The physicians were alternative/complementary with allopathic training .

    1) Of the many things I learned included one on melatonin. The doctor suggested no more than 1/2-1 g, that people take too much. Also it takes 90 minutes to take effect.

    2) Avoid blue light (like from TV, cell phones and computer screens, even clocks with lighted green numbers). Blue light signals the brain to suppress the secretion melatonin. There is even a special light with a red wave length. This is more conducive to sleep.

    3) The last was one banana tea. This we tried and seemed to make a difference, both in sleep/relaxation and jerking of the muscles. It works because of the magnesium and potassium. I have used magnesium oil as a massage to relax muscles. I took 1 unpeeled banana, cut off the tips. Steeped it in 2-3 cups of boiling water with a dash of Ceylon cinnamon for 10 minutes. Strained. One cup after dinner.

    Hope any of this helps. Christine

  • TRY 1/2 TINY PILL MIRTRAZAPENE AND GET HIM ON 20 MG OF PROZAC IN THE AM ..mY WIFE has had sleep problems from menopause to PSP shes had psp for 4 + yrs ..this combo does the trick for her ...sleeps from 9:30 til 5 0r so ...switches bed and sleeps at least 2 more hrs.....ask your neurologist ...we are in Denver, Littleton,,,,Co

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