My mum had a visit at her care home and has been prescribed Clonazepam, apparently to help with restlessness and ‘agitation’. They gave a first dose on Saturday and they said it seemed to help but that she was drowsier. I then had a call today from the home saying not to be alarmed when I visit her tomorrow as she is ‘considerably more frail’ and is now being moved in a wheelchair. It feels like a huge coincidence that she seems to have deteriorated so rapidly in a week so if anyone has any advice or experiences they could share I’d be grateful. I had noticed a marked difference in her ability to talk, open her eyes and movement over the last month before the medication so I’m trying to work out if the meds could be connected or if they are helping her.
Love to you all affected by PSP,
Helen
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Hdee
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Hi HelenSo sorry to hear your journey with your mother.
We live in Australia and would not recommend clonazapan. Everyone is different how they react to this drug, but for my mother she had a terrible reaction when it was administrative to her.
Within half hour after being given it she was practically non responsive. One day a nurse used a wet face washer to try and rouse her. This was horrific to see.
In the end we had to fight to have it removed from mums drug list. The nursing home told us we were being cruel to her by not allowing it. We were told that restlessness
and agitation was why Mum needed it according to the nursing staff.
In the end we changed doctors and clonazepan was stopped and mum was a lot better, but the damaged was done and she never really recovered.
Research the drug, the drowsiness can hinder their swallowing.
Unfortunately not a lot is known in Australia about PSP so sedating is a good alternative.
Thank you for your reply and for sharing your experience… I’m really sorry your mum had that reaction to the drug but it’s really helpful to hear about - so thank you x
Hello there My husband was prescribed Clonazepam and it really helped him. He had terrible restless legs, but once on it was able to sleep through the night.
Definately take her off it!!.my mum was tried on it for 2 weeks quickly taken off it...she was like a zombie slept ll the time..non responsive coukdnt move her mouth to eat...this was on a very low dose once a day....shes now on baclofen and much better thank god
The doctor gave my husband Lorazepam for restlessness/agitation. Just a small dose of 10mg helped him tremendously. Also, I was given morphine to help when needed. Sometimes just a tiny drop, less than 5 mg, would calm him down. He passed away in September, but those two things were very effective for him.
My wife also uses Lorazepam during periods of high anxiety. She also takes CBD twice a day for anxiety and pain. She also was given morphine but we have not used it yet. What are the side effects from the morphine? She tends to get a bit unstable (more than normal) with the Lorazepam but it definetly calms her down some.
Barry really had no side effects from the morphine, maybe because I gave him such a tiny dose. I also gave him melatonin occasionally, and sometimes a combination of two out of the three, (melatonin, lorazepam, morphine), depending on the level of anxiety. But I never gave him more than 5 mg of morphine bc I was so afraid of dependence on it.
Lots of good advice, and everyone responds to meds differently. My Mom is on Baclofen, Pramipexole, and Gabapentin— the mix of dosages has made the difference. I hope you find the right combination of drugs that will help. ~Kim
I hesitated to start Clonazepam when my doctor first prescribed it for me. I have been taking a really low dose in mid-morning and more right before I go to bed at night. I find it very helpful with my myoclonus and my shakiness in general. I have a wonderful doctor who advices to start slowly with any of these powerful drugs.I’m sorry that you that you had this experience with your Mom but everyone is different and they react differently to any drug.
These kind of diseases manifests theyself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.
These are our experiences about your question:
• Control of palliative medication against depression, as well insomnia and anxiety. In our case (after 8,5 years from the first symptom of PSP): one pill of Sertraline-50 at breakfast (depression) and one pill of “Lorazepan-1mg” one hour before dinner (insomnia and anxiety) (*). Of course all these drugs were prescribed by a physician. After around 6 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. 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 by applying it before lunch and before dinner on the same day. If you are interested see:
Hi, My husband has been prescribed clonazapan to be taking at night to help with his jerks. He was put on 1 tablet to start with then after a month increased it to 2 and is now on 3 but it has made no difference to the jerks, I do believe it makes him sleep better but we are now gradually taking him off. They said that there would be no difference for a few weeks so I dont think after a week it would of made any difference what strength was she prescribed?
I wonder why your mother's behaviour changed prior to her being prescribed clonazepam. I also wonder if she was prescribed any antipsychotics prior to this - which frequently cause agitation and abnormal movements (extrapyramidal side effects and akathesia), especially in the elderly. Otherwise, was she checked for constipation, or dehydration, or high blood glucose, or a urinary tract infection - all common causes of agitation and deteriorated mental state.
Clonazepam is a benzodiazapine. Benzodiazepines relax the muscles and the mind, rather like alchohol. They are all addictive and withdrawal can cause fits. Clonazepam is one of the strongest of the benzodiazepines and, in the psychiatric unit I nursed in for years, it was hardly ever used due to the very high risk of oversedation, falls, and addiction.
Thank you for all your comments and help. I saw mum yesterday and she was in a wheelchair and could barely speak - such a change in a week. I called her doctor who has taken her off the Conazepam - he agreed that she shouldn’t have reacted in this way to the meds. Thank you everyone, it was such a help x
To add to this discussion... My mother, in a more advanced stage of CBD/PSP (been diagnosed with both at separate times) has most recently been put on Olanzapine, an antipsychotic. Not sure what dose and not sure if it's helping. She has a significant degree of dementia and still seems quite agitated and confused. As others have said, everyone's disease is different though.
My guy had a very strong reaction to an increased dose of clonazepam given to him in an attempt to help him sleep. It really made him quite unresponsive for several days. It took a long time for him to recover, but he did to some extent. The smaller dose was inadequate, the larger dose was way too much.
Hi Helen,My Mum had a very similar experience to yours. She was prescribed 1mg clonazepam for her restless arm which 'coincided' with her exhaustion getting significantly worse. After a while she got the dose halved which kept the restless arm at bay and left her less incapacitated during the day. After about 2 months the positive effects wore off and she upped the dosage to 0.75mg and then she had three falls in 2 nights getting up to wee. Coincidence? I'm not sure and the doctors threw no light on the matter. She's currently recovering from her falls and a traumatic stay in hospital so I have no idea now what is causing her significant deterioration. My sense is that sleeping tablets are bound to be having an effect.... You could try lowering the dose but in my experience it's not a long term solution. So sorry for you and your Mum....
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