V has had  very disturbed  nights  for the last two or more years often up as many as  15 times  a night  or at least  calling for  help for one thing or another . A little  while  back she was put on Zopiclone . With this  she  either  went to  sleep for  about  three hours  then was  awake  or  equally  she  would  stay awake  till about  2am  then sleep for  maybe  three hours . And  sometimes  it wouldn't  work at all . She was then recently  put on Temazepam   . One  tablet  produced  much the  same  results  as  Zopiclone  but  with more  confusion  in the  morning - when the dose  was  doubled  she  still would  wake  at  about 2am  and  want the  commode  but  handling her was  almost impossible  even using the  hoist  as I couldn't get her upright enough  to  put on the  belt and getting her moving in the  morning  was  again  very difficult .Now she has been put on Clonazapan (this week ) The  first night I gave her  a tablet  15 minutes  before  bed  and  she was  virtually asleep  before I could  get her into  bed   and slept through till 3am - called  a couple of times  but then back to sleep until 7am . The  next night  she  stayed  awake  until 12 am  and  then slept through . Third  night  she  slept  from 11pm until 6am   and last  night  she  stayed  wake  ALL night calling  constantly - I think we had  about one  hour sleep between us  Has  anyone out there had  similar  patterns  and  any  remedies  that have  proved  successful .

A very  tired  and  sleepy  Georgepa

18 Replies

  • Oh Georgepa, that was my Colin until about a year ago.  He is still awake a lot but can't call out or tell me when he needs the commode.  Night carers was the only solution but that doesn't help if you have to finance it yourself.  I still have very little sleep on Saturday night when I'm on my own but that's nothing to what you are going through. I usually spend Sunday afternoon napping when C does. Invariably I'm woken by visitors or phone calls so feel dreadful on Mondays. I've caught up by Wednesday.

    I hope someone else posts with a better suggestion to help you.


  • Was Colin prescribed  any  sleeping tablets with any success . I do  pay  for  night carers  three times  a week  , financially  crippling  but essential . Just means   i can't  have too much  day  care  just 6 hours  a week . I also  do get  Marie  Curie  at least  once  a week  sometimes  more  which is  a huge  bonus  . Its  just  sods  law  which is  the  bad  or  very bad  night  and last night I drew  the  short  straw  - the  night before  V slept  for  a good  long  stretch  for  her  and yes that night I had  a night carer !

  • He was but rarely slept longer than 90 minutes before waking up again. They knocked him out within 30 minutes of taking them but very soon woke up again. He had Tamazipam and a couple of others but I can't remember what they were.  None worked for long.  C also started sleeping better when I had night staff and I asked him why he didn't sleep when I was on duty. His response was, " Because I want to see YOU!"  I suppose I should be pleased.


  • I can relate to that Deb

  • Oh George, what can I say?  It sounds absolutely horrible for you.  I must admit I am the same. I don't sleep, try different things, lots of things work once, but never two nights in a row!  The only I can suggest is, you start taking pills, the nights you get help.  At least that way, you do get some decent sleep and make sure your day care is the morning after you are "on duty," so you can go back to bed.

    Lots of love


  • Unfortunately  V often need s two to help her in the night so I have to be on standby. The same goes for the two mornings that I have help .

  • Sending lots of hugs!!!

    Lots of love


  • Hi my partner has Zopiclone every night and sleeps all night yipppeeeeee xx

  • Lucky you ..long may it last .

  • .

    Klonopin is a controlled substance and will need higher doses w continued use.  Behavior disorders is a side effect....sleep disorders would fall into that realm.

    I;m sorry I think this is all I know. It does cause regular people to consider suicide...I doubt that would be a problem more a greater need for drug and behavior problems ie sleeping......crap I;m sorry

    Bruce uses Ambien, also a controlled substance...and He too has fits of wakefulness lately...but sleeps till 10:30 am....If I can wait that long in the mean time, (we) go sleep walking!


  • Hi George it is horrible and the cumulative sleep deprivation will affect your health.  

    About 18 month ago M was prescribed Lorazapam 1 mg at half a tablet a night, with paracetamol 20 mg at bed time initially worked for about 4 hrs then a 10 mg dose of oramorph for a further 2 hrs but these did tend to be disturbed as morphine does not agree with M.  This regime worked for a month then M would be awake calling, coughing or kicking off bed clothes.  Palliative care team came and with GP increased dose of Lorazapam to full tablet at 2100 when in bed (not before as sleep follows quickly).  Then if wakes again a further half tablet.  This regime worked for about half the week which meant I got some sleep, but not enough.  

    Since Jan even this was losing effect, counter-intuitively DN said try stopping regime a couple of nights a week, yes the non medication nights were disturbed but the drug regained some of its effectiveness.  Now in nursing home they say they use Tamazapam rather than Lorazapam and she is not too disturbed but that does not effect me.  My sleep pattern is getting back to normality but still get waves a tiredness during the day even though M has been in the home for nearly 20 days.

    Try asking your palliative care team usually attached to GP (may not be in Devon but is up here in woolly N Wales) or your local Hospice for advice on what they use for patients with disturbed nights.  They have more powerful sedatives but have to be careful as some suppress breathing which can cause issues for PSP sufferers.

    Best wishes for some undisturbed nights.  Tim

  • Thanks  Tim - all useful information  and  gratefully received . Our GP  has  suggested that he  might ask  the  Exeter Hospice  to  take  V in to see if  they  can regulise  her  sleep  patterns  a bit  if his  prescriptions  fail . Last night was  a good  one  but  basically  because  she  had  been awake  all night the  night  before   and last  night I had a carer in  of  course   so  she  had  a  quiet  night too !

  • What a nightmare. [ sorry wrong word !]

    I can't offer any help as Chris only wakes a couple of times a night. I was annoyed about that but now realise I'm lucky !!

    Just to sympathise and send love, Jean x   Can I send a hug too ?

  • Never have turned  down a hug yet ! Thanks .

  • Oh George, can totally sympathise! You must both be exhausted. Mum wakes repeatedly through the night and it varies greatly for one reason or another. She used to take amitryptiline which helped with neuro pain and sleep a bit but stopped that and I suggested zolpidem. I'd read that it had been used in PSP clinical trials. GP only gave a week prescription though but that helped a bit. Then mum was getting very low moods etc so started Mirtazapine, which has helped a bit with sleep and mood. To try and get best night sleep I catheterise mum before bed, put a sleep enhancing music cd on, perfect temp in room, bought Egyptian cotton sheets and hope for the best !! She still wakes up a lot but these things help a bit. She also he issues with saliva/cattarh so she gets coated in Vicks vapo rub and sometimes take drowsy cattarh medicine to help sleep. Also as a last ditch I give her a lorazepam ! Prescribed for severe choking fits and anxiety but aids sleep too. It's horrible having to use drugs but only thing that really helps! 

    Luckily I know have night cover all week which is irreplaceable. I still wake up as I hear mums alarm go off but least I get bit more rest. I'm still shattered constantly though so don't know how all you other guys cope ! 18mths was my limit to doing nights.  

    Is v in any pain? That might be affecting sleep too?! But go back to doc or neuro or anyone who can help and stress the problems too !!! Good luck George ! Sleep really is so vital isn't it X 

  • V takes  mirtazapine too for  depression and anxiety . She  also has  an arthritic  knee which was  about to  be operated  on  before she  was  diagnosed  with  PSP  but they won't do it  now . This  frequently  wakes her in the  night  or so  she says  because  often it seems  more linked  to the  mind  than  the  actual  knee  - very  difficult  to tell .She  is on  Naproxene  paracetamol  and  60 mg of  codeine   which  is  supposed to  counteract  that .Sometimes  it  does  and  sometimes  it  doesn't .

  • Once John was in the Sinemet CR and an Amitriptyline he tended to sleep better.  He did use to keep buzzing and he got choking episodes. 

    Since not using the oath he was on that's stopped . And we are new reducing the Sinemet at night by half and now the Amitriptyline .

    It's to see if it will stop John Dystonia and dyskinesia.  So watch this. Space . 

  • Hello Georgepa

    The problems with all Benzodiazepines is that they are addictive and people develop a tolerance after a while.

    Antihistamines are sometimes used for the drowsiness side effects.  They are more gentle as well.  However some folk develop a tolerance to them too and they don't then work so well. 

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