Hallucinations

Hi I was diagnosed in June with parkinsons but prior to that was having hallucinations at night in bed when I woke up blobs, lines spiders and spiders on the wall when I wake in the morning  This pattern continues and it's not due to drugs cos had it before diagnosis I'm really sinking as terrified they indicate lewy body as it is a core early feature Consultant is aware and thinks it all related to pd sleep disorder but I'm taking some convincing as pd hallucinations are rare in early pd They sort of of disappear when I blink and rub my eye. This worry lbd is dragging me down cant  move on.Any help or experiences would be greatly appreciated. 

Helen

Hi Helen,

I hope you're well.

If you are experiencing hallucinations and they are causing you concern or you feel they are getting worse we would advise you to speak to your GP, Consultant or Parkinson’s Nurse.

Whilst not common in the early stages of Parkinson’s it is something that can occur. You should seek advice from your GP, Consultant or Parkinson’s Nurse to rule out other causes such as environmental or medication side effects. We have a lot of information on this on the Parkinson’s UK website and I would advise you to check it out if you haven’t done so already. You can find the information here.

If you contact our helpline on 0808 800 0303; our Parkinson’s nurse will be in contact with you within 24 hours.

I hope you find this information useful and do keep us posted on this.

All the best.

Many thanks,

Reah

Hi Helen,

I see what i call a mouse its not real but has had me on my knees and moving furniture, it's like a little black spot and as i turn to look at it, it seems to run away but, I've managed to convince myself it's like a "floater" and as i turn my head so it/they move at the same speed so i never catch them haha i hope you can understand what I have typed and it makes some sense.

Lee

Hi LeeMass

Hope you are OK and thanks for your reply, I know exactly what you mean I have lots of floaters too.Funny old disease this parkinsons  never know what's going happen next I also having bouts of sort of inner trembling and shaking , just on rasagiline 1mg at present try to be positive but struggle at times.Keep in touch

Helen

Hi Helen. I am in the same place as you, shifty condition isn't it, I know I can't make you feel better but at least you know you are not alone. Keep smiling xx

Hi Sue
Thanks for your reply , I always seem to be doom and gloom when I post , 6 months since diagnosis so going to have to move on with my life. Think if I didn't have these strange visions when I wake up from sleep I wouldn't be as worried about dementia. My neurologist , parkinsons nurse and everyone aware and consultant says they are both typical of what you expect in parkinsonism.
Anyway how's you ? and can I ask how long you have been diagnosed ?

Helen

Meant to say NOT typical

Hi

Hallucinations are becoming more prevalent in my life. Most of the time I am aware of waht they are - mostly spider - like and other invertebrate - like Very real visual hallucinations.

More distressing are unidentified person sized dark manacibg shapes anfd worst of all devastatingly real and persisting hallucinations of my late wife (images co incident of when she was much youger).

I’ve read as much aas I can and have a nurse neurology appmt. soon but am somewhat reluctant to be too “open”

Any advice?

Take care

Cled

Hi @cledboslem,

I’m really sorry to hear this, I’m sure it must be really distressing for you. My advice would be to speak openly and honestly to your Parkinson’s nurse so he or she can offer you the right support you need.

I can understand your reluctance in being too “open”, however, it might help if you spoke to one of our advisers before your appointment to help put your mind at ease and to ask any questions that you may have for your nurse. Do give us a call on 0808 800 0303.

Best wishes,
Reah