sleep trouble

[Husbandof]

my wife with PSP hasn’t slept well for awhile, but recently she is going to bed at midnight (later than she did before) and getting up by 3am. Anyone else have a similar experience?

[easterncedar]

The insomnia was a big problem for me and my sweetheart, too. I wish I could say we found something that helped. The sedatives gave him 4 hours at most. I was exhausted. When he went into a clinic for inpatient medication trials, he reacted so strongly to the first night’s dose they thought he was not ever going to wake up properly. He was suddenly not there. He did start to come around, but it took two weeks before he could come home. Anyway, I just want to say I sympathize. . I hope you can find some help so you can sleep.

[Sun-flowerwearer]

One of the first real flags that my husband needed help with was terrible insomnia. About 18 months before his PSP diagnosis he was receiving sleep councelling through the NHS as he’d be exhausted, go to bed, get up at 3 am and be restless until morning then be fast asleep in the day. The extreme fatigue and erratic sleep patterns remaining throughout his illness. Even in the late stages he would be asleep one minute and wide awake the next. No medicines helped ..

[ckb4]

hi!… yes.. my sister did this almost every night ..I had to help her get into a facility as she was by herself (age80).. I found an Asstd Living apartment after her Dx of PSP and we moved her 1000 miles cross country so I could help her…and then with her PSP quick ‘progression’ to not being able to walk.. then also at night she began waking very often middle of night and trying to get up to go to the bathroom .. she was told many many times to call for an aide and wait.. of course they didn’t come fast enough and she would fall out of bed then trying to get up…this wakening in middle of night increased .. and she ended up hospitalized after her 11th fall out of bed… and now is in long term care; loss of limb functioning, and has a one-on-one aide to make sure she doesn’t try and ‘roll’ out of bed…I see now why it’s called ‘progressive’…I call it the ‘fast-slow’ disease.. you will have to watch your wife ,as you are seeing, , as impulsivity is a hallmark of PSP .. and she will begin to try , if she isn’t already, and get out of bed and be a fall risk…nightly.. this is a wicked disease and relentless and there is never’improvement’.. it only gets worse and worse little by little… make sure you have help with your wife!.. and to be pro- active you might check into your nearest long term care facilities…and Health Aide help now if you don’t have it; caring for her on your own will become impossible if this is your situation..and you need a support system for yourself!!.. God bless your wife and God bless you!

[Bergenser]

It’s similar - we’ve had different stages - sometimes as you say, my husband would be in bed at midnight then up at 3am - and unfortunately too impulsive to be left unsupervised - I e.g. found once he’d walked to to fridge and got some cherries (pits and all) to eat - which would have been fine a few months earlier but not when he’d forgotten how to spit out the pits 😔 so I would have to get up and be next to him. Other times he would go to bed at 10 but get up every 2 hours - or more often. He’d need help to go to the bathroom - or fall while trying to go without waking me.

This got a bit better when he was prescribed Tamsulosin and the night time trips to the toilet became less frequent.

The sleep also got a bit better when we weaned him off co-careldopa - stepping down the nighttime (slow release) dose first.

If your wife is on Amantadine this can make sleeplessness worse too.

More recently the compromise has been - I doze next to him while we watch TV in the living room, then take him to bed when he wants to go, usually between 2 and 3. At least then we’ve typically had uninterrupted sleep until 6 or 7. Perhaps something similar might work? Or music through a sleep headband, so she’s not bored when she cannot sleep?

Medication works for some, so it’s worth asking your doctor, it was definitely next on our list to try - however right now my husband is in hospital and I find my sleep is broken without him in the room 😥 I’m very careful what I wish for. 🌻🫂

[MullerRice]

I have PSP, an̈d I can echo what Berganser said, dozing in front of a TV at least got me some sleep - I am fortunate in that I have a TV in my bedroom. Trouble is, l used to be able to not get back to sleep, but that has not been a problem of late; I now to sleep through to 6 or 7.

[DSCN66]

My brother 67...... Is taking .. magnesium..to help with sleeping........he says. he is bumping .down the walls of his bungalow........he's in NZ..

[Bergenser in reply to DSCN66]

Magnesium can definitely help with cramps or restless legs - both can disturb sleep, so that makes sense. Melatonin is the other supplement recommended to improve sleep with PSP - doesn't work for everyone but at least fairly safe from side effects. My mum who had MS (also a neurological condition) found melatonin helpful in order to fall asleep.

[David750]

Hi Husbandof, like others here, I experienced the same with my wide (PSP). I would be awakened regularly through the night. Sleeping tablets from our GP only kept her asleep until about 3 am. The GP said increasing rhe strength would not make any difference as the body excretes the drug over time. I started with a half tablet then increased to a whole one. There was no difference in time slept. Life for me was very wearing. I felt like a sombi some days. Caring is hard, I feel greatly for you. I do hope you have family near you, who can do some night duty to allow you to catch up on sleep. Respite from time to time is essential for your own health.

[Richard33]

Husbandof,

Over the period of a year we tried a whole range of sleep medication for Ruth - zopliclone, melatonin etc...- nothing worked (or if it did, it only worked for a period or made her too dozy in the day). Eventually we hit upon Mirtazapine 15mg (not 30mg - more was counteractive) taken at night. This had proved successful for the past 5 years......

Good luck!

Richard 🙂

[Husbandof in reply to Richard33]

Thanks

[LuisRodicioRodicio]

Hi Husbandof !

These are our experiences and informations hoping to be helpful:

• 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.

Dosco shares this experience about Anxiety:

“My wife in the early stages also experienced anxiety and was becoming more socially disengaged. She transformed from a social individual to an anxious person and stopped enjoying social events”.

Bergenser point out in his answer:

“I cannot recommend any particular drugs, but I've found the pressure of conversation tends to make things worse, as does "social eating". What works for him is simple games, tossing a ball about, people telling jokes etc, that seems much more comfortable for him. Every family is different, last year we had relatives visiting a few weeks before Christmas and everyone got involved in decorating the tree - my husband really enjoyed the chatter that came out of a shared activity, far more than attempts at serious conversations.

Another thing that helped for us was the LSVT LOUD trading (speech therapy) that gave him more confidence to meet up regularly with old mates over a coffee.

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...

“Zerachiel” Point out: “It may be worth looking into the drugs the patient is on at the moment, Amantadine for example can cause problems with sleep.

A big hug and luck.

Luis