Season's greetings one and all. I trust this festive season has seen bright moments amidst the ongoing pressures of caring.
I'm desperately hoping that someone out there can share their experiences with me.
Don has gone from a relatively peaceful sleeper to a night monster over the last year and I am at the end of my tether. Last night it really was a waste of time me going to bed as I was up to him several times an hour turning him and trying to get him to settle. He also has parasomnia and is forever waking me up to help him with whatever he happens to be dreaming about. While this aspect of his behaviour can, upon reflection, be hilarious in daylight hours, it is very trying at night!!! All of this has been going on for months now and I am so very tired. Sorry for the rant, but it does help to occasionally vent the spleen.
He is on Madopar (which has little obvious effect) and Seroquel to help with his hallucinations. Initially the Seroquel seemed to help his sleeping but the effects soon wore off. I put him back on 1.5 mgs of Clonazepam a night but although this helped a little with his sleeping, it virtually paralysed him during the daytime to the extent where he could not walk at all and his speech was badly affected. So, away went the Clonazepam. Really, I guess my question is: is there anybody out there who is experiencing similar difficulties with their loved one and who has found a drug to keep them asleep for a reasonable period overnight? I am not looking for miracles, just a few hours sleep occasionally.
No.. None of the drugs help my dad too.. So my mom eventually started sleeping in a separate room after we hired a full time care. the doctors aren't helpful either
Thanks for your suggestion goldcap. I think many people in Australia who suffer from a variety of disorders would dearly love to use medical marijuana to help with their symptoms. I've read good things about it by those who use it. Unfortunately, its use is illegal in every state in Australia and until the law changes one runs the risk of being charged with an offence. There is pressure on our politicians to review these laws and change them, so fingers crossed for the future.
My husband has zopiclone, a sleeping tablet, and it does help for a good few hours.
One added problem,that I hope your husband doesn't develop, is that when the agitation is particularly bad, he has a night sweat. It is so bad that it soaks everything.
I go through to the spare room often during the night, but if I catch the sweat in time I can whip the cover off and sponge him down.
He is on madopar controlled release at night. Also sertraline, which is an anti depressant, but he has it to reduce anxiety and obsessive behaviour.
I hadn't heard of the drug to stop hallucinations.
I can cope with most things if I can sleep, but I'm like a rat in a sack if I can't !
I hope a sleeping tablet will help x
I would try 5-HTP (5-hydroxytryptophan. This is a natural occurring amino acid and converts in the body with the help of vitamin B6 into serotonin. Serotonin is also an ingredient that naturally occurs in your body, but as we grow older it is less produced.
Serotonin is used to help with sleep disorders and depression. But it works differently to anti depressants and does not have the nasty side effects.
I give it to my wife each night before she goes to bed. I give her 2 capsules of 5-HTP 100 mg each. The recommended dose rate is 100mg to 300 mg.
Hi Lohall, Sorry, I can't help, only commiserate about not getting enough sleep! I would ask anyone you can, doctor, Parkinson nurse, pharmitist, witch doctor(!!!) somebody somewhere, must be able to help. Let's us know if you do find an answer! Sleep for a Carer, is the most important thing we need. Do you get anybody coming in during the day, so you can nip off for a couple of hours to try and catch up on your sleep? If not, at least try and doze in the chair when your husband is sleeping. It's like having a new born, when they are asleep, so should you be!!!
Hi mums on zopiderm 5mgs at night also takes tevaquel 25mg twice a day for agitation and hallucinations. Also prn zanax 125mcg for anxiety if required. Thankfully at present sleeps most nights. Dad doesn't always give sleeping tablet.
My husband takes 25mg of quetiapine and he sleeps through the night very calmly. It also helps with anxiety/hallucinations from Madopar, but I only give half a tablet.
Seroquel, which he takes, is the brand name for Quetiapine and unfortunately neither 25 or 50 mgs has the desired effect, hence my appeal for suggestions. I'm very glad to hear that it works well for your husband.
Sorry, I hadn't realised that - am a novice where medication is concerned for PSP/CBD.
Please don't apologise. It is all very confusing with all the different company brand names for the same drug. As I said before, I am just really happy to know that it actually works for some people.
My husband wakes me up in the night all the time. We have a king bed, and I sleep with different covers and on the far side of the bed. My husband is all the time taking something to help him sleep (OTC meds). I wish that I knew more about how to help him. I teach during the day and have to get my sleep.
It's so difficult with situations like this and PSP as everyone is so different! We are such unique and complex creatures! The vivid dreams sounds very random and perhaps unusual..? Mum has a cacophony of meds she takes. She's on Madopar (a levodopa brand) 6 tablets a day, soon to be upped to equivalent of 12 in horse pill/fake suppository form (so will reduce to 3! Big bad boy pills). This is only for muscle stiffness however and the dosage can be high as any side effects usually mild. Mum also has sertraline but that's an anti depressant. Mum has amitryptyline at bedtime (reduced dose last few months as it can cause grogginess and therefore increased falls) and this acts as a sleep aid, mood enhancer and mild stiffness relaxant. Mum was also taking Tropsium chloride in an attempt to minimise nighttime bathroom visits, these worked great for few weeks (I woke a couple of times to realise I'd slept four hours straight!) and had added beneficial (usually negative) side effect of dry mouth so choking in saliva decreased. Sadly these have stopped working as such so I have taken mum off them as she has enough pills a day. Mum also has lorazepam so when she has a really bad choking fit half a tablet is put under the tongue to relax her. It's a sedative so if the fit is at nighttime has added benefit of aiding sleep. But half is more than enough and due to falling issues mum needs to be closely watched if trying to walk anywhere after it. It's difficult with psp as sleeping tablets Etc make them groggy and so more prone to falls!! Tbh I've found with mum that an expensive good comfy mattress (Hypnos - discounted on premier inn website), quiet bedtimes (no tv or noisy neighbours), bedtime tena pants and a commode in the room have helped the most! Minimise the need to wake! Mum still has her 6/8 times a night awakenings on occasion but definitely got better. Stress affects if too.. She also has one of those beds you can raise aspects of and so sleeping elevated means less chance of choking /getting breathy in sleep and so helps too. Wow I do waffle on bit hope some was of help
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the doctors aren't helpful either 
How much sleep?
Any ideas to help with sleep ? 
