Psp patient and sleep issue

[Esra]

Hi all,

My mom is PSP patient approximately 12 years. Recently, she has screamed and groaned while her eyes closed during throughout the night. I do not know how to help her. Do you have any idea or experienced about it?

Many thanks

Esra

[Marie_14]

Could she have pain? In her legs or arms perhaps? That is fairly common. A massage with some cream helps a lot. Plus pain killers of course.

Marie x

[Esra in reply to Marie_14]

Many thanks Marie

[Keiko278]

Can she eat or drink from a straw? I can send you a list of calming teas and fruits. These teas and fruits can help with muscles spasms and pain and also with agitation. Let me know if you are interested. Thanks!

[Esra in reply to Keiko278]

Dear Keiko278,

Regret, she is not able to eat and drink, and has PEG

Do you think that we can use your list with PEG?

Many thanks,

[Keiko278 in reply to Esra]

Sorry to hear that. You could ask her physician if that's doable. I am still waiting from my dad's physician to give an ok so we can find out how to do it. He's in Brazil so communicating with them is not really easy.

[Esra in reply to Keiko278]

Fine. I am waiting your email

Many thanks

Best Regards

Esra

[Kevin_1]

Hi Esra

With both PSP and CBD sleep tends to deteriorate.

If she is not in pain it might just be the souds of frustration of being awake?

If herbal remedies don't work you might talk to the Doctor about clozapine which is a long half life benzodiazepine. That means it won't wear off in the middle of the night.

Herbs are good, but in my experience this is a long way beyond camomile and hops. Valerian is not so good either as it brings with it narcotic properties which are not so helpful.

Waving

Kevin

[Esra in reply to Kevin_1]

Many thanks Kevin

[margh2468]

Hi Esra, Hubby Leon made lots of noises during the night, he awoke up to 40 times most nights, I believe he was unaware of the noises he was making. It is horrific for the carer, not knowing how to calm them. Hugs to you. I thought it was just yet another part of the dreaded P.S.P. Marg Halliday Howlong N.S.W. Australia

[HARRADL in reply to margh2468]

My mother has had PSP for many years now. She began moaning, talking...in her sleep for about 6 months ago. It is nightly. She says she is not in pain and doesn't remember either. This is a symptom of this phase. Our dr. suggested giving her melatonin thinking it may help her sleep deeper and longer. Like others, I think it good to try different things. It is so rough as the caregiver desperately needs sleep too. I try not to give her drinks after 7 pm too, as if we don't hear her, sometimes she will attempt to get up herself (judgement affected now) and will fall as she can't walk. Everyone's suggestions are very helpful here.

[Esra]

Thank you Marg

Hugs to you also

[grafixapn]

My wife has had night terrors for avout 4 years. Since I sleep next to her, I get kicked and punched. I notified my neighbors to please don't call the police if they hear screaming.

The following morning my wife doesn't remember anything. I asked my wife's neurologist if there is anything to stop the night terrors, but the problem is that if they give my wife anything, it will increase her fall risk. I was told we just have to live with the night terrors. My wife has had PSP going on 16 years.

The way I handle the terrors is to put pillows between us. I just wanted you to know you are not alone.

Andy

[Esra in reply to grafixapn]

Thank you Any

God helps us🙏

[Kevin_1 in reply to grafixapn]

Andy

Your post really got to me.

You are so steady in the face of what must be an emotionally gutting situation.

I just wanted to pay my respects to you on this. Quite humbling really.

Warmly

Kevin

[Esra in reply to Kevin_1]

Dear Kevin,

Thank you for informing me.

Actually, I am trying to be strong. Unfortunately, my mum sitıation is not good and I know the meaning of it. I am very sad because I am not able to help her certainly. I know that she is suffering which makes me very bad.

This page is very important for me and also for mom. I really thank to each indiviual in this group who are shaing its experience about this horrible disease.

Warmly

Esra

[Tippyleaf in reply to grafixapn]

Dear Andy

Feel your pain, chronic sleep deprivation/ disturbance is a huge stressor for us carers

Look after yourself

Love Tippy

[grafixapn in reply to Tippyleaf]

Normally I'm more of a private person. I do better providing, what I hope is good information. My website supportpsp.com came about as a result of printing out everything I would learn at my local support group. When it went to 9 pages double sided, is when I put stuff up on the web. There was a time when I would print out copies for any new comers that showed up at the suppout group. I have had a good life. I'm getting old enough that my past is no longer available if you goggle me. As you know, when a loved one gets PSP, your whole world changes. I'm lucky in that I can afford the medication that keeps my wife alive. Let me end as I'm babbling.

Thank you for your kind words

Andy

[Esra in reply to grafixapn]

Dear Andy,

Thnak you so much for sharing your web page.

I read your recommendation about Tasigna. Is it possğble to use Tasigna for a patient with PEG? Do you think that the medication should be used till PEG usage?I am very sorry, we are approaching the end, that’s why I am asking.

Many thanks

Warm Regards

Esra

[grafixapn in reply to Esra]

I'm sorry, but I know nothing about PEG. My suggestion would be the go to my website supportpsp.com and on the page that talks about Tasigna, there is a study that was done at Georgetown University USA. On the page there is a link to that study. I would print out the study and bring it to your doctor. Have him read the study and have your doctor tell you is the drug might work for PEG. Here in the USA we need to get a prescription before we can get a drug. Even if I order the name drug Tasugna, and not the generic, US Customs will stop the delivery if I don't have a prescription from a doctor. Plus no one should ever take a drug without the permission of a doctor. The reason I bought Tasigna, and not the generic was I was able to find the Tasinga for less than the generic costed, and my wife felt the named drug Tasinga worked better. My wife tried both the real drug and the generic. Generic drug can't be the same as the real drug, or the drug maker would sue. I hope I've answered your question.

Andy

[Motts]

Good Morning Esra - I hesitate to post this but I have night terrors to the point I don't want to sleep at times . . . waking me up and reminding me where I am helps and adding a cool towel to my face and neck help me feel refreshed. My issues stem from childhood abuse which I thought I had settled in my mind years ago. Hope this not the case with your mom. Sending Hugs - Granni B

[Esra in reply to Motts]

Thsnk you Ribbie,

I also hug you

[Cuttercat]

Trazadone helped us tremendously. I only wish we'd had it early on. Unfortunately we didn't.

It gives good rest and days are quieter.

Cuttercat

[Esra in reply to Cuttercat]

Dear Cuttercat,

Many thank for your reply

We have alreay used it for mum.

Warmly

Esra

[Motts in reply to Esra]

Good Evening Esra

I have a question - do you think the Trazadone has help your mom sleep better?

At this point I am clueless about medicines but ready to learn what works & what does not.

Of course I realize that everyone does not react the same to meds.

Sending Best Wishes to you and your mum. Granni B

[Esra in reply to Motts]

Dear Ribbie,

The result of the medication is good. Mum was administered 150 mg, however, her horrible disease is getting worse so we have already increased dosage to 200 mg.

Warm Regards

Esra

[Motts in reply to Esra]

Thanks Esra

I will add this med to my list as a possible go to someday for myself.

My heart is with you and your mom as you deal with each new day and what it brings.

It is a hard road to travel. Please take care of yourself.

When I was in your shoes I made sure to do a little exercise, eat healthy and watch funny shows as often as possible. (oh, yeah, and I cried behind closed doors - only because I hate to have anyone see me cry) I sure wish I had this go to site for information and support way back then.

Sending you HUGS - Granni B

[Esra in reply to Motts]

Dear Granni,

I really thank you for your understanding. I know my mom is at final stage. My heart is not so good as you imagine. Nearly each day after my job, I go to see my mom and dad and stay whole night. I just come back my home for sleeping.

I have learned lot of valuable information in the people in this group. I really thank to each individual in the group.

I know, this situation will pass one day , however this period is hard as you know.

God bless our loved one

Warmly regards

Esra

[Tippyleaf]

Dear Esra

Feel for you, neurologists have told us sleep disturbance is not a characteristic of PSP !!

My husband has a R.E.M. sleep disorder and sleep apnea (plus PSP). He takes Clonazepam and uses night time CPAP

this reduces the nightmares and agitation caused by hypoxia at night. We also use Meditation tapes and aromatherapy oils to help settle him initially and when he wakes/ is disturbed. But still he regularly shouts out/ punches, kicks appears distressed at night - we have never completely cracked it. I guess what I am. saying is that it is unlikely there is a specific cure for the situation but there may be things that reduce intensity/ frequency of distress and agitation which I do understand is distressing. Every little helps!! Hope you find things which help your mom.

Love Tippy

[Esra in reply to Tippyleaf]

Hi Tippy,

Many thanks for your support

My mom has also taken Clonazepam drop during day. Recently, she has faced sleep disturbance. Her doctor has added 5 drops Clonezapam when she wake up at night. It seems work. I am still following her situation. I am trying to find if there is another things

With warmly regards

Esra

[stephanotis]

My husband used to scream while sleeping sometimes. But starting last week since I gave him 15 drops of CBD oil (no THC ), around 9 pm through his GTube, ( put the drops in a little water) he has been sleeping well and no more screaming.

I am so happy now having good sleep for a week already. Hope this will last!

[Esra]

Thank you so much

I read several article about usage of CBD oil for PSP patient but I am afraid of it because it is not approved for these patients.

Many thanks for sharing your experience

Best Regards

Esra