This is a combo kind of post. I’m just trying to make some sense of it all… So I thank you for your comments…
I’ve read a few times that many loved ones with PSP sleep several hours (18 or so) in 24H… but we find that Nela (my mother-in-law) has very short periods of sleep (mainly at night because she takes “long” naps during the day (I guess night time is another topic to consider))… and I think that that might make her feel very tired… I don’t know what stage she is in now… there are no informed doctors on the matter [PSP] where she lives (which is a royal pain in the… heart)…
Thanks again.
Caya
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cayabrewer
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Hi. With my mum, sleep at night was two hourly at it's best and this probably began eighteen months before she entered the last phase. But all patients are different. My mum would wake for the loo but often couldn't manage one another PSP symptom in itself. She didn't sleep any in longer periods during the day but better sleep-probably because she was so tired. It's such a complex condition to fathom. Thinking of you.
If you can get melatonin that might be worth trying because I read something about the body clock getting disrupted. That seems to be part of the explanation in some people of producing more urine at night.
Yes, the doc prescribed a diuretic for me to take 4pm daily with plenty water, but then drink very little after that. It puts the body response to pee lots and lots quite soon, then only a little more at night. So .... much less interrupted sleep. It's a heart med, and messes with diabetic levels - so watch out for, or discuss that. I was diagnosed PSP 3.5 yrs ago, aged 80, and also have a prostate prob, not serious! Good luck! Timbow PSP
I tried Melatonin for 3 months and was disappointed with the results. It maybe good for some folk but did little for me. It is supposed to regulate. The sleep pattern
My mom sleeps a lot, and suffers from restless legs; so lots of kicking at night. We use Trazadone and it has helped tremendously. In addition, she is on Miralex and Baclofen twice a day —- the urination at night comes and goes
My husband with PSP year 5, used to wake 3-4 x a time for the bathroom. Dr prescribed Trazadone 100 mgs, 1 at bedtime and now he sleeps 7 hrs straight. It has worked wonders for us.
Almost everyone with PSP has a REM sleeping disorder. So you need to get better sleep at night and avoid too long of a nap during the daytime, ie less than one hour in the afternoon. In order to change the cycle I would agree that Trazadone at 50-100 mg prior to bed will be helpful. If this doesn’t work I would then try low dose Ambien at 5mg at bedtime. Usually most people will still awaken for urination despite these hypnotics for sleeping. Melatonin at 10mg at bedtime may help some as well. It depends somewhat on a person’s stage of disease as to whether these changes may be helpful.Hopefully, this will be helpful.
In our case we are recommended to "control" rest and encourage the patient using drugs. In our case it worked without problems for 6 and a half years until death.
• Control of palliative medication against depression, as well insomnia and anxiety. In our case (after 8 years from the first symptom of PSP): one pill of Sertraline-50 at breakfast (depression) and one pill of “Lorazepan-1mg” one hour before dinner (insomnia and anxiety) (**). Of course all these drugs were prescribed by a physician. After around 6,5 years with this medication no appreciable side effects on our case.
(**) I have read that to improve the patient's sleep are using "Melatonin" successfully. Ask physician.
Pills can be taken in a spoon of applesauce or similar...this helps it slide down. Also a good pill crusher helps.
A light dinner helps to control insomnia. Also a moderate walk (with aids) or wheelchair before dinner helps to generate a natural fatigue that helps fall asleep.
Some include a dose of 3 to 6 mg of CBD Oil (20/1-CBD/THC) via subling, usually before dinner, to stimulate appetite, reduce anxiety and as a co-adjuvant analgesic in neuropathic pain.
In periods of patient more intense anxiety some increase the frequency of the dose by applying it before lunch and before dinner on the same day. If you are interested see:
Hi I'm sorry to hear what you are dealing with. I too have had problems with the heal hate system. I've had to do all the research myself regarding mum who has PSP. We were meant to have a appointment with a Parkinson's nurse before the pandemic but unfortunately still haven't heard from them. Our gp just tells me do all the he research myself online. And our district nurses only phone once a month to see how she is getting on but really don't want to hear any concerns. I know how you feel. I hope you get some help soon. Hugs and best wishes.
It takes 30mg of melatonin for it to work for me. I take a last big drink around 8pm to keep some hydration through the night and then pee a few times before I go to sleep at midnight. I used to worry about overnight incontinence but I now have plastic-lined washable urine pads under me at night and I just don’t get up til morning. Yes, I’m damp and I need 20 minutes every morning to get cleaned up, but I sleep. I use vinegar in the laundry — let it soak for at least a half hour after it fills with water and mixes — but it works to give me sleep. I’ve stopped fighting what I can’t fix.
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End stage of PSP
Nighttime toileting for PSP patient.
End Stage of PSP
