Night Time Waking

[Redjune1]

My husband has PSP and since Christmas has been constantly waking up in the night calling out to me. Sometimes I’m up 4-5 times with him just for little things, tucking his feet in, finding a hankie, other times he needs to stand up to use his urinal bottle and often he wets the bed even though he wears pull ups. Consequently I get very little sleep, 4 hours last night, and I feel like I’m at the end of my tether with him. He sleeps a lot in the day so doesn’t affect him. How do other people deal with this sort of situation?

[Marazion]

my mum also has PSP and is in a nursing home now. She has been waking at night and sleeping in the day so her consultant prescribed her medication to try and reset her body clock. It helped a little but her sleep pattern has definitely changed still including still sleeping in the day and being an early riser 3-4 am.

[Redjune1 in reply to Marazion]

Yes Phil sleeps more in the day definitely. He’s going into respite next week so it will be interesting to see how he gets on there.

[OllieFisher1]

Resthome....dad was getting up easily every 40 minutes from about 9 pm. Virtually no sleep at all, and not sustainable. Probably not what you wanted to hear, but it was part the way his PSP presented, a resthome was the only option.

[Redjune1 in reply to OllieFisher1]

Hi Ollie, this is what I’ve been thinking. I know it’s not what Phil wants, but as you said it’s not sustainable and I suspect it will only get worse.

[David750]

Yes Redjune1, my wife (PSP) was the same, extremely tiring. I gave her zopiclone 3.5 mg sleeping tabs. This kept her asleep to about 3am. I had a two way baby alarm as I had to sleep in another room. I also set up an EasyN camera with night vision linked to my mobile so I could see if the noise she was making was her trying to get out of bed. I could talk to her and get her to ly down so reducing the need for me to get up

[Redjune1 in reply to David750]

Thanks, if it continues I will have to speak to our GP about sleeping tablets

[David750 in reply to Redjune1]

I also gave her CBD oil 15% then later upped it to 20% CBD+CBDa. The sleeping tablets were additional.

[Naturegeekjess]

Hi June, I'd recommend trying taking CBD (which comes as capsules/oil/gummies) before bed. It helps my stepdad sleep better, who has PSP, as he tends to wake my mum up a few times in the night. It also helps me sleep, as I have anxiety. I know it might not be a good option for you to take it, if you like my mum feel you have to be on-hand and able to wake up and help, but if you do get some respite I'd recommend it for a good nights sleep!

[Redjune1 in reply to Naturegeekjess]

I actually do take a cod capsule every day but usually in a morning. I will swap it to night time

[Naturegeekjess in reply to Redjune1]

Just checking, I meant CBD not cod oil. I'm sure both are helpful in different ways though!

[Redjune1 in reply to Naturegeekjess]

Sorry that must have been autocorrect on my phone, I also meant CBD oil

[LuisRodicioRodicio]

Hi Redjune1!

These are our particular experiences about the problem.

Each patient PSP/CBD is a particular case. Ask physician.

*Symptom control: Most people only take medication for symptom control.

• Control of palliative medication against depression, as well insomnia and anxiety. In our case, one pill of Sertraline-50 at breakfast (depression) and one pill of “Lorazepan-1mg” (insomnia and anxiety), one hour before dinner (*). 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. Others use “Trazadone”. 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:

healthunlocked.com/psp/post...

Kevin_1:

healthunlocked.com/psp/post...

Article in Karger Medical (Neurological Improvement with Medical Cannabis in a Progressive Supranuclear Palsy Patient: Severe impairment of motor and language functions_A Case Report) :

karger.com/Article/FullText...

I hope to be useful.

Hug and luck.

Luis