Are sleeping tablets suitable for someone with psp?

[Cinderella80]

Hi friends i care for my mother alone. She has psp and feels like she is getting abit worse. I sleep in her bed as it is easier for me to get up when she needs to go on the commode. Its been 3 years since i had a proper sleep . She wakes me by removing the duvet away from me as her voice is now going. But now alot of the time she just wakes me even when shes been on the commode not even 10 mins ago. I try to get her back to sleep but she just constantly wakes me for no apparent reason. It could be that she worries alot as its even worse when we have a upcoming appointment or people may come round. I think she gets anxious with going out or people coming round. She used to be a worrier before psp. I was just wondering if anyone of your loved ones uses sleeping tablets and is of yet fully able to go for a wee rather than being incontinent. I'm just worried if she uses sleeping tablets she may start having accidents in the bed. I would be grateful if anyone has any experience with this as its truly exhausting having a lack of sleep. Thankyou.

[Kayelless]

Most of us have a rough time sleeping. I’ve attached a graphic that shows how a “normal” sleeper goes to a much deeper sleep in the middle of the cycle. The little splotches on the chart show when the mind is more active. You can see PSP sleepers never get into that cycle.

I talked my PCP into prescribing by showing him this chart. Docs are wary of prescribing sleep aids and the chart helped him see my point.

I’m sleeping well.

Be aware that someone who’s on sleeps meds should not wander out of bed at night. These powerful meds and darkness are likely to make some people fall.

Sleep chart. Normal on left, PSPer on the right.

[timbowPSP in reply to Kayelless]

Hi Kayalless, How interesting about sleep! I am male, diagnosed PSP 4 yrs ago aged 76, now with an average of about 4-5 hrs sleep/nt, more often less .... NOT enough! Over the counter meds plus some Zop all help a bit. D'you have more info or references about this sleep problem? Or remedial suggestions? Have been a poor sleeper all my life, and hate this added restriction of my activities! Best wishes TimbowPSP

[Kayelless in reply to timbowPSP]

there’s a study going on now for sleep medications at UNiv of CA. You can join from home if you have a caregiver. The data I have is from a presentation made this past spring at an online family conference that covered the topic.

You can find more information about the study by viewing a video here: pspsleepstudy.com or by emailing Dr. Walsh at: [e-mail]. Click herefor the listing in clinicaltrials.gov.

[timbowPSP in reply to Kayelless]

Thanks Kayelless. The email addresses you give don't seem to be valid. Pls will you check and confirm. Are u in US or UK? Thanks Timbow

[Kayelless in reply to timbowPSP]

the email addresses were not created by me, they were in the document itself.

[timbowPSP in reply to Kayelless]

Which document?   'pspsleepstudy.com' not opening, and the listing in clinicaltrials.gov seems just a listing, not informative. So I have emailed Dr Walsh for any info. Timbow

[msophiac in reply to timbowPSP]

Amitriptyline, low dose, facilitates solid sleep

[timbowPSP in reply to msophiac]

Many thanks Msophiac for that comment about amytrip. What does' low dosage ' mean - well some guideline? I'll check with my doc about it, and we have a good relationship. At least he listens! Cheers Timbow

[msophiac in reply to timbowPSP]

10-25 mg. It has been used doctors that specialize in Lyme disease for a long time now, and also for fibromyalgia, because of the benefits of sleep.

[SarahDoyle]

Hi Cinderella.

My sister has PSP aged 67. Diagnosed 3 years ago. She takes 7mg Zopiclone before bed and gets 4 -5 hrs undisturbed sleep. Before she had a catheter fitted she also took a medication designed to help bed wetters which slows down kidney function overnight. Your situation sounds untenable as you are obviously getting very little sleep and yet trying to care during the day . Anxiety is a big issue for my sister and she now has diazepam prn for times of high anxiety. Good luck

[Cinderella80 in reply to SarahDoyle]

Thankyou for taking the time to reply. Its just so difficult to function without sleep. My mum was diagnosed aged 60 but she was getting symptoms earlier. I dont want to her to suffer incase she gets side effects from any sleeping medication. I will have to continue as i am . All we can do is try our best. Thankyou again.🌷

[Ratcliffe]

This is really interesting as for many years before his diagnosis, David said that he never slept well, and PSP definitely magnified this.

I wondered about sleeping tablets etc, but we thought with the PSP and drooling in the later stages that it could have knock on problems.

I myself suffer from Sleep Apnea and use a CPAP, so had concerns about sleeping tablets, as sleep apnea wakes you up as you have stopped breathing, so I probably subconsciously applied my logic to thinking about PSP.

So this is refreshing reading, as anything that helps is good!