My dad has PSP and we are to the point now where he is having trouble sleeping almost nightly. I have read as much as I can and it doesn't look like there is much we can do to fix this. The hospice nurse keeps upping the Haldol and Trazadone but that just makes my dad loopy. Any advice is greatly appreciated.
This is my first post and I am confused if I am to post this or write it under the question tab. My apologies.
Hi
Welcome to the forum.
Why on earth is he on Haldol? This is such old fashioned psychiatry for non psychotic conditions!
Haldol is a sledgehammer with the side effect of being sedating. It's primary use is for psychosis. It became popular with dementia because those with behavioural problems were so knocked out they were safe. It is so aweful that unless it is the only treatment available I would it regarded as almost a form of pharmaceutical abuse. Even for psychosis there are better more modern medications available.
I'm not sorry to rant about this. Get rid of that doctor and get someone who is not twenty years out of date!
Unless he does have severe psychotic symptoms.
Clonazepam, a benzodiazepine will do the job for sleep very well. It has a long half life compared to 'Valium'. So it will work throughout the night. It should be used at the lower end of its dosage range.
Trazodone is also fairly strong. Much gentler and very effective for anxiety and depression would be something like Citalopram, or another serotonin reuptake inhibitor.
I am not a doctor, but I worked with these drugs for many years in Community Mental Health.
Do you have a consultant neurologist involved? The prescriptions sound like they from from an out of date GP. Very heavy handed!
Do get a second opinion. If you are in the UK that is your right and it is not frowned upon. Otherwise get him referred up to a consultant who knows what they are doing. That is also your fathers right.
But please do it soon. The medications may well be the larger part of the problem.
Wishing you well.
Kevin
Kevin
As usual you are a mine of information which is so appreciated by us all.
Thank you for your wise words and counsel.
Hugs to you and Liz x
DaughterSLC,
(You posted in the right place - in the right way. No worries about that.)
I agree -- Haldol is a sledgehammer and very inappropriate to help with sleep. Tell the hospice RN you do NOT want your father on Haldol as it's making him loopy. Stick to the trazadone and see if that helps. Increase the trazadone dose, if needed. You can try melatonin to see if that helps.
Are there any sleep hygiene things you can do, such as getting your dad a bit of exercise during the day? And getting him outside into the fresh air?
Robin R.
Clonazepam does the trick for hubby and he isn’t hungover the next day.
I think Haldol might be one of the drugs used to quiet patients, where they get propped in a corner to drool on themselves. It’s sad and it is usually used only at the end of life care phase. Ask to slowly wean him off of this drug and please keep us updated as to how he’s getting on.
No apologies needed. You’ve come to the right place.
Hi. You did the right thing to post as you did and you have already had some excellent replies. You will get so much help from this site as everyone who uses it will understand where you are coming from and probably been there themselves and will have learnt things that can help you. You have joined an international family who all support each other. Hopefully it will become a safety valve for you too. Love AliBee xx
Hi DaughterSLC!
*Symptom control: Most people only take medication for symptom control.
•Control of palliative medication against depression, as well insomnia and anxiety. In our case right now (after 7,5 years from the first symptom of PSP): 1 Sertraline-50 at breakfast (depression) and 1 Lorazepam-1mg one hour before dinner (insomnia and anxiety). Of course all these drugs were prescribed by a physician.
(After around 5 years with this medication and no appreciable side effects).
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 by applying it before lunch and before dinner on the same day.If you are interested see:
healthunlocked.com/psp/post...
Hug and luck.
Luis
Hi
Coming back in the bright sunny morning.
I am still assuming you are in the U.K.
My last post was just before bed. In my tiredness I was so shocked, even horrified, at the treatment your father was on. Haldol was used intramuscularly (with a fast acting benzodiazepine) for rapid, heavy sedation on psychiatric wards when a patient was so disturbed they posed a serious threat to themselves or others. And, when all talking and support was exhausted. It was the treatment of last resort.
I came back this morning to edit my post and make it a little more measured. On reflection I won't do that. The cat is out of the bag.
Do, please get his medications reviewed. I would strongly suggest getting a referral to a Consultant Neurologist who has a specialism in PSP. As I said, this service is available on request for complex conditions. PSP is well into the area of complex. Having said that the referral will take a month or two. So going back to the prescribing doctor must be the immediate recourse. I would have a talk with the lead nurse in the unit, but they cannot change a prescription themselves. Discuss it with them, keep them on board. Ask their opinion, but do talk the the prescribing doctor.
A principle at the heart of British medicine is that the treatment should be the least invasive / have least impact on someone's life and still be efficacious. This treatment is very much on the side of aggressive. Aggressive treatments should only be used when all other treatments have proven ineffective, or if there is no alternative given the situation.
Again, I wish you the best with this.
I am in the US. However, I will speak to the hospice nurse about changing this. Thanks for all the info.
Larry went through a bad sleeping period for a year or so. Then it changed. Now he is staying in bed most of the night. It could change on its own. That’s the kind of thing this disease does.
My sweetheart simply lost his ability to sleep, and that became a terrible struggle. He first could only sleep a few hours at a time, even with trazadone. The disease had destroyed the part of his brain that regulates sleep. I would lie next to him and count the seconds of his sleep as he cycled through semiwaking and sleeping states in minutes. He was admitted into the palliative care ward of the VA hospital to try to find a solution. The initial attempts were too powerful and made him a zombie, unable even to eat, during the day. That nearly killed him outright. I fought hard to get him back to normal enough to go home, and I did, but that was the beginning of the end.
This brings back so many memories. The battle to sleep for more than 45mins pushed me to the edge of not coping. I do
Hope you can find a medication which helps without sedating during the day- such an important balance.
Love Tippy
Hello-
My mother (also with PSP) has had an amazing response to seroquel, which was the choice of a neurologist we took her to about a year ago. I was initially resistant to trying it because it had really knocked both of my in-laws for a loop when they were given it, but he said that in particular with PSP it was a good choice. My mom went from wandering (and of course falling) nightly to sleeping through the night. Getting sleep also made a difference with her mood and cognition.
Can’t help but notice your user name ends in SLC. Are you in Salt Lake? If so we should talk hospices- we have lucked into a great team.
Yes we are in SLC and are using Solstice. You?
Sorry if this is a duplicate, but I thought I had responded already and can’t see it! I am also new to posting here.
We are using Rocky Mountain Hospice. They have been great for the couple of months we have been connected to them. They have saved us at least one emergency room visit. The doctor has been very thoughtful about any medication adjustments. ( I work in healthcare, and agree with the previous comments about Haldol.)
The neurologist who confirmed the PSP diagnosis and made the initial recommendation for Seroquel is at Salt Lake Regional, I can get you his name if you need it. We started on a fairly low dose, and have not needed to increase it to date.
Let me know if you would like to get together sometime!
This is so insignificant compared to the other suggestions that I feel silly posting it, but I was wondering if you've tried adjusting the lighting in his room? My mom has been struggling to sleep for months, and we've lately had some luck leaving the lights on at the regular level instead of turning them off at night. One of her doctors suggested it.
Quetiapine works for my David. 25 mg at bedtime. It also has resolved his restlessness and wandering, but does not make him groggy. Seroquel is another name for quetiapine.
Dad newly diagnosed with PSP
Deep Sleep and PSP
PSP Patient | Sleepless Nights
To all sons & daughters of PSP sufferers
