My mum was diagnosed in Feb 21 with Parkinson’s. She has recently been experiencing distressing crashing sounds (usually when she wakes, but not always). I appreciate this is probably Parkinson’s related, and would like to hear from anyone else suffering a similar experience. She has been on 8mg of Rotigotine for about a year, and we were considering whether this could be reduced to see if it’s contributing to the noise. She is also taking Sinemet 25/100mg
every 4 hours, with the controlled release version taken before bed. We will discuss the above with her neurologist at her next appointment, but in the meantime any ideas that may help her to cope will be most appreciated.
Thank you
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NJCOL
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I used to get olfactory hallucinations . Luckily they were a sweet odor, rather than you know what! There is nothing that I am aware of specifically targeting hallucinations. It is part of the wonderful constellation of symptoms PDs get. My hallucinations seem to have gone away, for now. I do a lot of exercise, eat well (MIND diet) and do yoga nidra meditation.All things shown to slow progression.
I couldn't tell from your description if it was happening during sleep or half-sleep or while fully awake. If it's happening as part of sleep then check out Exploding Head Syndrome. That's actually what it's called! I experience sound and simultaneous sensation of a pop or crack in my head. It very distressing, but once I figured out what it was my anxiety about it decreased a lot as it's not dangerous.
Thanks for your response. I checked out the imaginatively titled exploding head syndrome; that seems to describe the crashing my mum experiences when waking or about to fall asleep. However, she also gets a fairly continual whooshing and sometimes cracking when awake. We’ll talk to her specialist about reducing her Rotigotine. Good luck with your sound experiences. All the best.
When hubbies hallucinations started, one of the first times he woke with a start because “a bomb went off”. He then dragged me all around our apartment complex checking for explosions.
In his case, it was a harbinger of dementia. But, the hallucinations go away by lowering his meds.
My understanding is that standard practice would be to 1) double check no UTI or other medical issue 2) talk with doctor about possibly lowering Rotigotine (dopamine agonists)
She hasn’t had any extra difficulty sleeping lately or new supplements or stressors has she?
Good luck…it’s very difficult and disturbing to deal with. Can she tell that it isn’t real?
Thank you for the helpful information and suggestions. Sorry to hear your husband has had to endure these horrible experiences, and that they were a harbinger of dementia. I’m mum’s carer at the moment, but if she develops dementia I may need some help (especially at night), so thank you for revealing what may await us.
We will discuss points 1 and 2 with her specialist. She hasn’t had any new stressors recently. The only supplements she takes are: B1 complex, Magnesium, Vitamin C, Vitamin D (2000 IU), occasionally Zinc, and Ferrous Sulphate 200mg on alternate days as she has iron deficient anemia.
She is aware the sounds aren’t real. 1 tablet of Codeine 30mg before bed (on alternate nights) helps with her restless legs (the only medication that does, and she’s tried them all) and sleep. Although she doesn’t take them continuously due to constipation.
Best wishes to your husband and yourself, and thanks again for sharing your own experiences and knowledge, as it will help us to plan etc.
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Diarrhea 😔
Hallucinations. 
PD and iodine deficiency?
PSP
