My Mom is 70 yo and she has parkinson for 15 years, she is currently taking Amantadine 2/day, selegelin 2/day, mirapex 3/day and trihexyphenidyl 1/day. She has Night Terros every night for the past few years and she is getting worse, she talks, screams and fights during the night, My dad can not sleep next to her anymore because she will hit him in sleep, she recently fell from her bed while she was dreaming. Me and my dad are taking turn sleeping in her room just to make sure she is safe while she is dreaming and try to wake her up when she screams. is anyone experiencing this and what did you do about it? we tried to take her off amantadine, thinking that might causing it , but I dont think that is the one, also I love amantadine since she has been doing very good on it.
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leelit
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Pls ask for help from the care services if you are not already receiving help. Get an Occupational therapist involved they will be able to get some sides that can be placed on your mums bed to prevent her from falling onto the floor. Your mother,father and yourself must be all exausted.
I would also speak to the Dr to see if he/she can offer more help/ different medication.
There is help available, pls consider it.
I hope this helps you a little.
Take care, I am sending you a very big hug, your simply marvallous. xxxxxxx
This is a common well documented secondary PD sympton.Recommend you meet with your neurologist ASAP and ask him for advice with dealing with Hallcinations
My husband was taking Amantadine three times a day some years back and was advised because of possible nightmares to stop taking the 11pm at night dose. He takes this at 7am and 3pm now and so far that is OK.
He also takes Stalevo 125mg 5 times a day, Mirapexin 700mcg 3 times a day and Trihexyphenidyl 2mg 4 times a day. Trihexy.. is the medication that reduces his rigidity issues the most but it is best taken with FOOD. We have managed for him to take the first dose with out food at 7.00am..He then takes just after his 12.00 lunch, his 5.00pm evening meal and at 10pm with a light snack.
When we learned many years ago NOT to have protein within an hour either side of his main dopamine meds [Then Sinemet] and cow protein two hours either side it made a huge difference and his increase in medications was much slower than Docs expected.
He has had symptoms since 1994, not diagnosed till Dec 31st 2000 and at 64 also has Post Polio Syndrome [Polio at 6 months in 1951] he is in an electric wheelchair full time now due to shoulder damage and difficulty putting on and managing a full leg brace. He also has Mixed Sleep Apnoea and had heart attack and stents fitted Dec 14 and Jan 15. Considering all this he is not doing too badly but we so wish we could find a Doctor to help us manage all his issues in a multi disciplinary clinic... Everything in the UK is separated with no-one but us case managing.
Hello all I have cbd but was originally diagnosed with pd, I suffered with really scary dreams and hallucinations and would hit out, scream, sing etc. I would wake up with my heart thumping, and sweating...finding it difficult to go back to sleep because when I tried to go back to sleep again I would see the same things. I would switch the light on and need my husband to reassure me that the horrific things I was seeing were not real. My neurologist prescribed Rivastigmine, and gradually most of the hallucinations and dreams stopped. Maybe it's worth asking about for your mum. Good look x
I suffer from this and have done so for five years now. It is OK if I scream I usually just wake myself up and stop screaming then go back to sleep. I also fall out of bed occasionally or shuffle over the bed get out and wake up finding myself standing beside the bed or walking into a wall. I have punched and kicked the wall and injured myself in the first year but haven't done so since so it is a good idea not to have your mothers bed against a wall or near a window. If I do sleep walk to a wall or window I usually just bump into it gently because I am walking very slowly and then I wake up work out where I am in the dark and make my way back to bed. This would not be so easy if I were in a confused state of mind or physically disabled.
Soft furnishings such as rugs which you can't trip over around the bed, if you don't have carpet, help and removing bedside tables etc is a good idea as are curtains or blinds on the window. Acting out dreams is exhausting and I usually need to sleep in in the morning after a bad night. I am usually being attacked by something or someone and trying to escape so it is very stressful dreaming. Clonazepam usually works for most people and some take 5mg of melatonin but I reached tolerance level with Clonazepam after twelve months which is unusual and the melatonin gave me even worse nightmares and made me sleep walk frequently. I found the world quite dark on Clonazepam as well and I was glad when I stopped taking it. I don't take anything now and have explained to my neighbours what the screaming is about and thankfully they tell me they never hear me. I also live alone so I just have to deal with it on my own. Mine is also getting worse too and I haven't found a way of stopping it but if I do I will let you know. Apparently as the disease progresses the sleeping disorder will become less evident. What ever you decide to do I think you all must be experiencing incredible stress and you and your father need to take care of yourselves as well. It would be great if clonazepam worked for your mother as it seems to do for others and then you could all get a good nights sleep. All the best and take care you are all heroes. Bitsy xo
I didn't say above that what your mother probably has is 'Rapid Eye Movement Sleep Behaviour Disorder'. It is caused by a lack of muscle atonia during REM sleep, that is her body is no longer paralysed during sleep and so she acts out her dreams.
1st talk to pharmacist, 2nd talk to neurologist. Everyone is different.
I had same problem. For me it was the Mirapex.
My wife and I have an agreement which helps a lot. Anytime I have night terror she say's "I love you Steven, you are safe". I come out of dream. I still have them but very rear. Last night because I ate something spicy I had a dream the ceiling was falling from rain.
Mirapex was the bugaboo for me too. My doctor changed and the new one cut me back from 3 mirapex to one a day. That change had the added benefit of ending the night terrors. What a relief to get better sleep and not flail and scream.
I was having violent vivid dreams that sent me back to my Neurologist and Pharmacy to discuss what could be done to stop them. The doctor recommended Clonazepam .25 X and I have not beaten my wife while sleeping since. (Still happily married =)
Do not let me or any other non-professional advise you as to what might work for you. (I always feel compelled to ad a comment to tha effect.)
Hi Leelit. I am not a doctor but it sounds to me like a medication problem. One of those meds is causing this problem and surely her neurologist will know which one it is and take her off it.
Hi, Thank you all so much for all these helpful replies, I am so happy that I found this website, It is really helpful, I have been really busy reading all the posts, I want to read every single post from everyone. Parkinson's disease is not like a broken arm that has only one treatment "put it in a cast", I think it is really individualized and each person respond differently to treatments, that is why this website is so wonderful, we get to share our experiences, I believe that patients have to be their own advocates and it is important to be on top of everything specially with Parkinson's disease. so far we have the amantadine cut down to none a day , she is a little better , but still have the nightmares and also the sever edema, which the dr thinks it is the amantadine, her neurologist wants her to stop amantadine and put her on sinemet, but I am so scared of sinemet, her parkinson did not progress much in 15 years , she was only on Amantadine 2/day, selegelin 2/day, and trihexyphenidyl 1/day. for 10 years and then they started the mirapex, never been on sinemet, she had night time hallucination for many years but it wasn't this sever, also her edema (started about 2 yrs ago), she has been off amantadine for one week so far, and we will see her neurologist soon, I will keep you all posted .Thank you all again, I really feel so much better since I found you all :))), we are not alone :))
Hi, Thank you all so much for all these helpful replies, I am so happy that I found this website, It is really helpful, I have been really busy reading all the posts, I want to read every single post from everyone. Parkinson's disease is not like a broken arm that has only one treatment "put it in a cast", I think it is really individualized and each person respond differently to treatments, that is why this website is so wonderful, we get to share our experiences, I believe that patients have to be their own advocates and it is important to be on top of everything specially with Parkinson's disease. so far we have the amantadine cut down to none a day , she is a little better , but still have the nightmares and also the sever edema, which the dr thinks it is the amantadine, her neurologist wants her to stop amantadine and put her on sinemet, but I am so scared of sinemet, her parkinson did not progress much in 15 years , she was only on Amantadine 2/day, selegelin 2/day, and trihexyphenidyl 1/day. for 10 years and then they started the mirapex, never been on sinemet, she had night time hallucination for many years but it wasn't this sever, also her edema (started about 2 yrs ago), she has been off amantadine for one week so far, and we will see her neurologist soon, I will keep you all posted .Thank you all again, I really feel so much better since I found you all :))), we are not alone :))
I just moved in the top half of a duplex and my friend lives below. She said she heard me walking around several times during the night. Next day I had no memory of it. It happened again the following week. I was upset and called my doctor. He mentioned that this could have been going along for a long time, but since I lived alone, no one would have noticed. I get sleep paralysis pretty frequently and that can be upsetting. I'm glad that you all are here to make me feel that what is happening to me is "normal"!
Hello everyone, just wanted to give you some updates regarding the REM behavioral disorder and night terrors that my mom has, she is slightly better. I will give you a summary of what we have done so far:
we stopped Amantadine for almost 2 weeks and there was no change in her sleeping but I have noticed her being a lot slower, had increased appetite, noticed a little improvement in her gait but not sure if Amantadine has any thing to do with it.
she tried Clonazepam 0.5 mg , she slept very good for only ONE night and thats it. Then we started Temazepam 15 mg and so far she has been improving. she also stopped the night time mirapex, so she is only taking Mirapex twice a day now instead of three times a day. she also satarted Amantadine again , same dose as before, (Amantadine 100 mg twice/ day), she is still taking the Selegelin twice a day, and trihexyphenidyl 2mg daily. I have to mention that she takes her first dose of parkinson's medication at 8 am and the next dose at 3 pm. so at night she is only taking Temazepam, Baby Asprin and Fish oil, so far out of 10 night she had 6 very good one with no acting out in her sleep at all. We really hope that this works well, I will keep you all updated.
The same thing is happening to my husband and the only Parkinsons med he takes is Carbadopa/Levodopa. He was told to see a sleep specialist but didn't go. His Neurologist gave him Klonipin to take at night and when he remembers to take it, he sleeps much better.
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