Can’t sleep

[Cinjav]

I was diagnosed in May of this year.. Started with double vision. I also have seizures, mostly controlled.

I can’t sleep hardly at all. Tried several meds, nothing. Very frustrating. I get maybe 3, maybe 4 hours if lucky. There have been some nights I haven’t slept at all?

Anyone else have this problem?

[Bergenser]

I understand sleep issues are common in PSP. My husband had problems sleeping long before his PSP diagnosis. Now there are good nights (last night he slept from about 2 am till nearly 7am) and bad nights when he's up 4 or 5 times or needs to get up and sit in his chair. After a long period of sleeping badly he might go down for the count and sleep 12-14 hours, but this is very rare. And some times the lack of sleep at night leads to multiple naps in the day.

We've not found any reliable remedies, however when he's had lots of exercise and a warm bath, he might have a better night.

There are so many symptoms and issues, the sleep problems haven't had much attention from the neurologist. Once we've completed his respiratory assessment this week, I'll try to get my husband a referral for his sleep issues. I'd be really interested to hear if anyone has had a sleep assessment and found out anything useful.

[Bergenser in reply to Bergenser]

A few things - obviously if there are some specific reasons for the issue e.g. needing the bathroom, feeling hot, or restless legs, coughing etc, its worth trying to eliminate those. My husband was given Tamsulosin which means he might still get up to go to the bathroom, but not as often. On hot nights he needs cooling blanket and a cool pillow- and a fan - I find that even in winter the fan, on a low setting, gives him comforting white noise. Magnesium supplements seem to reduce painful cramps in his legs. Atropine drops under the tounge reduces his saliva so he doesn't aspirate in his sleep. These little things don't solve the problem with disturbed sleep, but even small improvements can be helpful.

[David750]

Hi Cinjav, lack of sleep is so common. May I suggest you contact CurePSP (curepsp.org) for their advice. This is such a difficult problem to resolve and requires advice from those with wide experiences. All my very best wishes

[Jaguar86]

my husband also has sleepless nights and can go up to 4 days and nights without sleep. The more sleep deprived the more dysfunctional. Drs just gloss over and yet it is a huge problem with PSP. Trying Temazam reluctantly. It’s on the list again for the next Neurologist visit. Good luck. CurePSP might help.

[easterncedar]

I’m sorry to say sleep problems are very common. The medications my guy was given generally netted him no more than 4 hours of sleep at a time or else they knocked him out for days. I wish I had more than that to offer.

[LuisRodicioRodicio]

Hi Cinjav!!

Symptom control

Depression, as well insomnia and anxiety are very common symptoms in PSP.

• 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 CBD 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...

“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 and luck.

Luis