Agitation and insomnia

[Leither1]

Hi all. Hoping for some advice regarding my Dad who was diagnosed with PSP about 18 months ago. His condition has declined rapidly after a few spells in hospital and broken hips. The main issues now are that he doesn’t sleep, barely at all 40 minutes - 2 hours and he won’t get into bed. This leaves him exhausted and confused. In desperation we tried sleeping tablets but they only gave him 90 minutes sleep then he was falling due to getting up drowsy. But without sleep he is falling more due to being weak and confused with exhaustion. We’re currently trying melatonin but he only manages an hour or two at most, in a chair. Cat naps for a few minutes but no quality sleep. Recently he is having episodes of agitation where he can’t sit down. He will stand up after about 60 seconds just to then sit again and repeat the process. He can’t explain why. The worst episode lasted literally 24 hours. Standing moving to the opposite sofa, sitting 60 seconds, standing again. You can imagine the state he was in, we had to guard him as he was neither standing or sitting safely but it was some compulsion that he couldn’t control. Has anyone experienced anything similar and is there anything that may help him?

[carehope]

Dear Leither 1 , Merely reading about what your Dad and your family are going through is upsetting ! Living and witnessing it in person is way more so ! Many of us have been through variations of what you've described as we care for our loved ones . It sounds as if there isn't a knowledgeable Neurologist who is prescribing for your Dad's agitation/anxiety and generally taking care of assisting your Dad and you in dealing with symptoms which can be very prevalent. If you enter key words in the "search" space at the top of the page, you'll find many posts from those who have been in similar situations along with solutions and helpful suggestions , etc... However, it is really essential that your Dad have an experienced qualified physician to assess , diagnose , and prescribe personalized interventions that might go a long way toward helping with these problems. It is a trial and error process ; as what is effective in each person's case is highly individualized. You can also research PSP online and you'll find essential medical information that you can bring to the attention of your Dad's physicians. The more fact based material that you have, the more educated they'll become about a diagnosis that they may have never encountered . It's very worthwhile. Many times it is the pt's advocate who is the "expert" , not the doctor. Educating yourself about all aspects of PSP is key to enabling you to get your Dad the help that he needs now and in the future. By the way, finding things out is not as daunting as it might sound ! It's an ongoing process.

Though the health care system in the U.S. is very different from the UK , there are certain similarities when it comes to getting appropriate care for people who have diagnoses which are less common. Anything atypical requires a lot more involvement from the pt's carers and significant others .

We don't have to work in a medical field to educate ourselves . As you read and acquire more knowledge about the atypical neuro illnesses such as PSP , the more you'll be able to help your Dad. AND you also need to speak up with Drs and others in official capacities.

Others on the site will be able to give you referrals also. These are frequently mentioned by people in the UK who post here.

Best of luck to your Dad and you all.

There are definitely many helpful prescriptions and allied interventions that may make a positive difference for your Dad.

Lots of love,

Elise 🤗💜❤️💜

[SaintsandHawks in reply to carehope]

Perhaps a few alcoholic drinks in the arvo around tea time may help. Obviously there are safety issues involved

[LuisRodicioRodicio]

Hi Leither1!

These are our informations ans experiences about anxiety and insomnia:

• 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.

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.

Hoping to be useful.

Hug, luck and courage.

Luis

Note:-

Of course, it is important to avoid the intake of stimulant substances containing caffeine, theine, chocolate, sugar,etc. in the afternoon.

[Diggerandsam]

I’m a PSP sufferer and I went through a period of intense insomnia. I seem to have improved recently - only wake five or six times overnight now - 12 hours I’m in bed as I’m put to bed at 9.00 pm and got up at 9.30 Monday-Friday and 8.30 at the weekends. I’m totally reliant on others to do everything for me. I cannot move on my own except to stand, using my recliner riser chair and then I have to lean on it with the back of my legs. So, there’s nothing I can do to physically tire myself. I took Amitriptyline at bedtimes for about a week, bought myself a memory foam topper and started watching tv on my phone whenever I couldn’t sleep. No naps during the day, no matter how tired I felt. Seems to have done the trick for me. I’ve stopped taking the Amitriptyline but still watch a tv programme or two before going to sleep or if I’m awake during the night. Hope this helps.

[Richard33]

Hi,

We tried all the drugs for insomnia. We settled on Mirtazapine 15mg at night (30mg was not as effective). It has worked for several years now. ...

Richard 🙂