I posted here a few months ago regarding my dads struggle with getting a good nights rest. A few months ago he was waking up anywhere between 6-15 times a night (one night 25+) to use the restroom, sometimes not even needing to use it at all. He had been checked for UTI's and everything came back ok. Back then these bathroom breaks were taking him anywhere between 30-45 minutes to get into the restroom then back to bed. I have always strongly believed that the extreme lack of sleep had always only added to the progression of this terrible disease causing him to feel extra tired, dizzy, off balance and having a few falls. I found an article from UCSF that stated “If sleep could be improved, it is possible that the disease progression in PSP could be slowed.” I have always held to so much hope believing so strongly on this. We have tried so many different things and currently have him on 50mg of Trazadone before bed. I believe the Trazodone helped slightly when we first started it but has slowly worked less and less. As my dads condition has continued to progress now he is having more bathroom accidents that don’t just include urine. He is also moved on now to needing to use the bathroom to go #2 multiple times through out the day and night, most of the time not even going at all. These bathroom breaks have lasted up to 2 hours of getting him there, bathroom use, then back to his chair or bed. He is currently on Hospice and the nurse has prescribed a low dose of morphine to help regulate his sleep. Has anyone else had experience with morphine with there loved one who suffers or suffered from PSP? Or has had success with any other medication for sleep? Any advise would be completely valuable to us! Even some feedback on the frequent bathroom breaks and feeling the need to constantly use the restroom. Thank you so much for reading and I apologize for the lengthy post.
-Gus
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Morphine is often needed in late stage end of life care. It is addictive and looses it's effectiveness over time. If your father is not close to end of life he is being set up for a possible major issue later.
Carbomazapine - a long half benzodiazepine is very effective. Our consultant neurologist prescribed it.
Hospice nurses in the UK are generally very good, but this is one I would ask a Dr to review.
Is your father very close to end of life?
Would not a little help with toiletting be more efficacious?
There are medications to supress an over active bladder too.
Hospice nurses are not trained in all medications, just the ones they need for endo of life and pain management.
One of the issues with PSP is that innitiative dwindles. He is possibly sitting on the loo so long because he is not thinking of getting off it.
I say again - this is deeply worrying and as a non medic it sounds to me so very close to mis-prescribing. I am not one to say like that lightly.
Best to you
Kevin
PS the paragraphs are alittle out of order - appologies - small screen here.
Thank you for your input as I too was curious once I heard the prescription of morphine. We have followed up with the doctors to see if we get some feedback.
As of right now dad needs 100% help to get to, during and out of the toilet. Once he sits its hard to get him up as he says he’s trying to use it.
I know you mentioned medications for over active bladder, any come time mind for bowels?
Once again thank you for your advice as all this info is so valuable!
Thank you for the info! My father doesn’t have diarrhea just the temptation to want to continue going to the restaurant to go number 2. Most of the time he doesn’t even go or need to go... same thing happened months ago with him thinking he had to pee all the time.
I'm no where near the end of Life,,even though sometimes because the pain is so bad,i wish I was.
I have multiple Chronic illnesses that the Doctors don't really know what to try me on next.
My G.P took me off the Butrans Patches yesterday and gave me Morphine Tablets..O.M.G. i already have a Gallbladder problem and Blocked Bile Duct ...Since I started the Morphine Tablets my Tummy pains have been much worse. Really bad headaches .My breathing is quite laboured since starting them ..I have Valvular Heart Disease. COPD. Asthma. Angina. A 16 cm Haitus Hernia and an Umbilical Hernia. I had no sleep at all last night and I am absolutely shattered..My Hubby rang the GP for me this morning,then i had to speak to her..I told her what was happening and I thought she would have told me to stop them. But No, in fact I have to take double the dose tonight .I said to her. Look i took 2 yesterday and couldn't sleep a wink.If i take double the dose tonight and don't sleep,I'll be jumping out of the bedroom window..
She said that I obviously needed a higher dose because it wasn't managing my pain.. I don't know what to do now..Take just the one tablet tonight,or take the two like she said. ???????🤔
Thanks for your warm wishes,i really appreciate them. I didn't tell you everything thats going on with me,but as well as what ive already told you I suffer with Chronic Fibromyalgia, Rheumatoid Arthritis,
Osteoarthritis , Osteoporosis .I've had bones removed from both hands because of the Arthritis. My Orthopaedic Surgeon wants to do a Complete Wrist Replacement.
But my Pain Management Doctors have advised me against it because they said it's such a complicated procedure and they are concerned that I wouldn't handle the postoperative pain..I d already decided against it anyway.Ive got enough going on. I have a Uterine Prolapse that I had a repair for a couple of years ago. But it's come back again. I've already had an Hysterectomy ,also my Appendix was removed,so at least that's
two thing taken care of. The list could go on and on. But all these different issues are making it difficult for the Doctors to find pain medication that would work without interaction ..
As Kevin_1 mentioned morphine is usually given near end stage of the disease. It can cause constipation as well. No one really knows how this disease will play out but it sounds like the hospice is treating him as if he is dying.
Thanks for your feedback Jeff! We have followed up with the doctor to get some feed back. I had no idea morphine causes constipation and we have yet to administer any to him.
I don't know about that Jeff. I know it's given towards the end of life. But it's also given for Chronic Pain when no other pain medication is available. I know this, because I am on the slow Release Morphine Tablets and I am far from dying
If you find constipation beginning it might be the cause. Eat probiotics yogurt, gets as much water as you can into yourself, raw fruit if possible. The more fiber in your system the better.
Yes I am finding that I am constipated,getting really uncomfortable. My Hubby bought loads of fruit for me ,Grapes ,Cherries , Strawberries, Apples..
Which Probiotic Yoghurts do you recommend. ??? I've never tried Probiotics before..I hate these ruddy Morphine Tablets..
Doctor told me to double up on them
from tonight. But im not going to..I feel so out of breath and my legs feel like lumps of lead.if i don't get any sleep tonight I'll be climbing the walls.
I buy a local store brand of yogurt. Read the label it will list what cultures are used. It seems 5 cultures of different strains are used in making a probiotic yogurt. This is a list of what is in the yogurt I eat. Active live yogurt cultures including l.bulgaricus, s.thermophilus, bifidobacterium, l.acidophilus, l.casei.
Saline enemas are also useful when things won’t move.
Thanks Jeff, I can't even pronounce the name of those Probiotics,but im sure my Hubby will sort it out for me. Had about 1 hours sleep last night. Have terrible cramps in my legs. I feel like I'm gonna puke all the time. I'd put up with all that,but it's not helping my overall pain.
I would prefer my G.P to put me back on the Butrans Patches and up my dosage of Pregablin than have to put up with all this. At least with the Butrans Patche i do get a bit of sleep with the help of my Zopiclone and Diazepam. It doesn't make sense,
these Morphine Tablets make you feel so weak and tired throughout the day,but they interfere with your sleep really bad. Well at least they do with me anyway 'I am in such a lot of pain and feel so exhausted...
Thanks Jeff,will take your advice because my other pain medication makes you constipated as well. Gjkas
I have the same problem. I literally tried everything. Then I discovered vanilla yogurt. I ate a large one. And it worked great for me. And its alot more cheaper then those probiotics. The Dr told me those are gimmicks. That they cant keep all those "extra" good bacteria's alive and that yogurt was actually better. And I think they even have some that are for people that are lactose intolerant. Good luck. Feel better
Hi Thankyou for your advice. Do you know if Vanilla Yogurt is okay to eat if you have to stay on a very low fat diet. Im not overweight or anything like that. I have a Gallbladder and Blocked Bile Duct problem. So have to be careful with what I can eat.
Ive come off the Morphine tablets today and going back on the Butrans Patches. In a hell of a lot of pain.
Poor sleep at night is very much a feature of PSP and CBD. Mum's sleep has got worse over recent months. She needs the toilet about half of the times she gets up but the other times she mostly realises it's because she's uncomfortable. Some of this is because of the inability to adjust position. So it may be worth asking the hospice nurse to actively adjust his position every hour or more.
My husband was the same, going to the toilet up to 15 times a night, standing for ages, often not producing urine. Eventually I got him a urine bottle so he didn’t have to walk, often falling over on the way, he could stand by the bed. Sleeping pills only lasted 2 hours and morphine made him feel out of it all the next day so he said he didn’t want to take it. We both put up with this for very many months and I mentioned it on this site. Someone said, don’t presume every symptom is caused by the PSP. I took him to the doctor and he went to the hospital for investigations. He was found to have an enlarged prostate, very common in older men. The doctor said it could be prostate cancer but if it was, it wasn’t worth more invasive investigations to confirm it as he would die from PSP before cancer. He gave him medication given to men with enlarged prostates and it did help a lot. He still got up several times until he was physically unable to but he didn’t stand for ages producing nothing like he did before.
Thank you Nanna for your story! You mentioned morphine made I’m groggy the next day and that’s the main part that worries me. Especially if he’s still getting up so frequently. He had prostate issues in the past but everything seems to be ok now with no UTIs. I’m hopeful that something will help his mind rest a bit and he can finally have some decent sleep.
Dad only had morphine during his last few days via hospice. He did go through a period of frequent trips to the bathroom to urinate, every couple hours. If I had to put that on a timeline I'd say it was more of a mid-stage issue though. I agree with the others that there are better medicines to induce sleep then morphine. I don't recall if I read this or saw it in a movie but being on morphine was described as "my brain was wrapped in cotton while I floated in nothingness...."
Dad just took melatonin before bed and slept the best he could. Normally his sleep was around 4 hrs solid with LOTS of daytime naps. As he progressed I and the doctors stopped trying to get him on a "normal" sleep schedule and just let dad sleep as he wanted.
Thank you for your input! We tried melatonin on the earlier parts of his diagnosis, as his lack of sleep has been going on for a while, but unfortunately the melatonin did not work for him.
Yeah it's not a very nice feeling .But even though I take sleeping tablets ,since being on Morphine tablets my sleep pattern is rubbish .I'm not sleeping at night but my head is so fuzzy all day..
He used to get up numerous times at night. We initially used a bottle but then moved to a Conveen last January. This was successful and reduced the fall risk. With regard to bowels, he too would not go for a few days then be productive. We found a gentle laxative daily helped together with pureed prunes and a healthy dollop of natural organic yoghurt daily helped keep his gut healthy whilst on regular doses oc antibiotics.
With regard to sleep, he was prescribed Clonazepam which guaranteed unbroken sleep.
Yes, Ian is on Clonazepam and he nearly always sleeps through the night. Mind you, he is also on a low dose of Mirtazapine at night, and the doc has recently prescribed Codeine for pain, as Tramadol wasnt working any more.
Actually, I'm amazed he wakes at all....day or night!
Thank you so much for your input! I read about Clonazepam when we first got him on Trazadone. I did hear it was stronger. I will definitely look into this further and see if we can get a prescription. Thank you so much!
My husband (in the late stage of PSP) is now receiving hospice care and low dose of morphine which has seemed to subdue his restlessness. He was in hospital with a UTI and pneumonia, unable to swallow or take anything orally. Went from hospital to hospice care.
Sleep disturbance has been a major issue throughout this illness. He had been on clonazepam, 0.1 mg for what they called REM sleep disturbance, it was helpful at night.
Hope this helps you in some way, goes without saying there seems to be no end to the events that befall us with PSP.
Thank you for your reply! This is a terrible disease!!! A monster.... :(.. we are definitely going to look into Clonazepam. He is currently on Trazadone.
My wife needs help in all her movement now . Bathroom visits and nighttime especially, we have found that CBD oil at bed time has helped her sleep, with now only one bathroom visit instead of 3 to 5.
Hello and thanks for your feed back. What dose are you at?? My dad currently takes half a dropper of 18:1 (CBD:THC) tincture Unser the tongue before bed.
Hi Gus, My husband suffers from sleep deprivation also. His neurologist has given him a prescription for Ambien. It works well for him, but he is still able to toilet himself. Without the ambien he was up 6 times a night. If his frequency is due to an enlarged prostate there is a supplement called Saw Palmetto that we are having good results with for my husband.His primary and urologist recommended we try it. There are also prescription medications for urinary frequency, but use with caution , some cause increased confusion, which is what happened to my husband.
Bowel incontinence is harder to control, but perhaps look into any recent dietary changes or unfavorable response to certain foods which increase loose stools. My husband can no longer eat bacon or any sausage products . The fat content results in severe bowl issues. Morphine is not usually prescribed for sleep problems, and as previously mentioned is pain control or end of life issues. Morphine can cause hallucinations in some people.
Thank you for your valuable information! Does your husband have any side effects from the Ambien? Someone mentioned hallucinations with one of their psp patients.
Good morning Gus, My husband does not have any side effects from the Ambien. Some people do experience waking up during the night and not remembering it and preparing food, and other activities that could be dangerous as they are not fully awake. Ambient has been good for my husband. Klonapin might be a better choice for sleep as it is an anti anxiety medication that may have the favorable effect of quieting your Dads desire to go to bathroom even if he does not need to "go". Keep asking his Dr to work with you until you find a good fit for him. Its an exhausting process and you are doing the best you can. We are all here to offer various suggestions-Hopefully you will find a good fit for you circumstances. NCPat
Hi my name is Suzanne Lombardi. I am not sure if it is legal in your state but what has helped me is 10mg of Indica once I am ready to go to sleep. I am unable to handle THC normally as I get too paranoid but if I take it in capsules right before I sleep this does not happen and I get at least 8 hours of uninterrupted sleep. Indica is the mildest form of THC.
Hello, thank you for your information. He is currently on an 18:1 (CBD:THC) tincture with half a dropper under the tongue before bed. Is your Indica all THC?
I had mom on the nano tincture which has less thc and more cbd. She did so well it. Better then just plain cbd. The sativa was too much and made her paranoid. Check out the nano tincture. Its a miracle with people with psp. Good luck
The neurologist prescribed Quetiapine 25 mg for David's restlessness during he day and at night night. It took care of the problem and allows him to sleep at night. He takes 50 mg before bedtime and 25 mg during the day if he gets more restless. I would start with only 25 mg at bedtime. There have been no noticeable side effects like grogginess or dizziness in David's case. I'm surprised that morphine was prescribed for sleep... good luck to your dad!
Funny that I am reading this as we just went to the neuro for my Bob for almost exactly the same reason. Bob has been on Trazadone also and has been increased over the year. Sooo, they are adding seroquel (sp?) Into the mix. We are going to wean him off of one of his Trazadone dose after lunch and then add seroquel. The evening dose of Trazadone will remain til we can see the results. Will let you know how this goes.
Gus this is normal. Remember psp kills the motor function parts of the brain. They will still feel like they have to go to the bathroom and actually not have anything come out. Then you will have those explosive times. I had my mom on cbd oil as well which helped her focus and speak. It seemed to slow it down . I just wish she could have been on that sooner. Have patience and cherish every second because the end result is always the same. Hopefully the researchers can get together with us carers and gather our information. After all we are the ones that live it everyday. Good luck. Kiss and love on them as much as possible. Hugs and prayers for you both.
I just found your post here while researching morphine and PSP. My mom is in late stages of PSP and has been experiencing the same challenges as your dad. She is also in hospice now and recently we started using a very low dose of morphine (.25ml) for some pain she was having. I started noticing that every time we would give her a dose I could suddenly understand her speech much better and it became easier for her to eat. It has also been helpful to give her this dose at night for sleep. Observing my mom for these past few weeks with intermittent microdoses of morphine is the first time I've felt hope that there is a drug that alleviates some of her symptoms without knocking her out. I think dosage is key with this drug, obviously too much would incapacitate her but this small amount actually makes her more present while easing her suffering and anxiety.
Also, we had her on trazadone (50mg) for about a year. Same experience, it worked good at first but then didn't seem to be affective. Our hospice just took her off that and put her on a muscle relaxer at night called Cyclobenzaprine (10mg) along with Gabapentin (300mg) and that seems to be a magical combo that actually has her reporting that she slept well for the first time in years. We also give her a low dose of Ativan (.25mg) in the middle of the night. I hope this is helpful, the process of figuring out meds is so long and tedious but once you find the right ones it's such a relief!
Thank you for your reply. I am happy to hear you have found different methods that are working for your precious mom. Everything becomes trial and error with this terrible disease and you really have to play around with things in hope something works. Unfortunately, I lost my dad to PSP 3 months ago. He fought a brave fight and I was by his side till his very last breath. I miss him so much but the thing that gives me hope is that I know he is free from this horrible disease. Keep helping your mom, any way you can. You are doing a great thing for her!! Wishing you, your family and your precious warrior the very best.
Thanks Gus, I really appreciate your kind words of encouragement. This is indeed a horrible disease, it's pushed me to the point where I am hoping my mom is out of misery sooner rather than later. I'm sorry to hear your dad passed recently but I'm glad you have relief knowing he is free- I completely understand that. And how lucky you were to be by his side when he passed, that's all I can really hope for.
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