This was actually a difficult post for me to work on. I knew the excerpt was useful but looking closely at hallucinations that Parkinson’s patients have strikes very close to home for me. My grandfather suffered for Parkinson’s for some time before his death in 2003 and his hallucinations were one of the more challenging parts of his disease. I hope that J. Eric Ahlskog’s book, Parkinson’s Disease Treatment Guide, For Physicians, helps many doctors find the best possible treatments for their patients. Be sure to check out last week’s post, an excerpt from The Parkinson’s Disease Treatment Book: Partnering With Your Doctor to Get the Most From Your Medications.
Hallucinations in Parkinson’s disease (PD) are usually visual, that is, seeing things that are not there. Auditory hallucinations do occur, but very infrequently. Although hallucinations are common in advanced Parkinson’s disease, they may also surface in early PD after medications are introduced. They are central clinical features in PD dementia and Dementia with Lewy Bodies (DLB), but drug-induced hallucinations may occur without dementia.
Hallucinations often manifest as people or animals. For example, seeing strangers out the window, children in the yard, or animals in the house is common. In the mildest form, this may simply be a nondescript shape out of the corner of the eye, or bugs crawling. Insight varies, and some people recognize the absurdity of their illusions, whereas others may try to interact with the illusory phenomena.
Hallucinations in PD may be very episodic and often not tied to any provocative factor. In view of this lack of predictability, PD patients with hallucinations must be told not to drive; they should resume driving only when cleared by the physician who must be satisfied that the hallucinations have completely resolved… hallucinations can usually be controlled with medication simplification and sometimes with additional drug therapy.
Rapid eye movement (REM) sleep behavior may be mistaken for nocturnal hallucinations and must be distinguished. This had entirely different implications and treatment…
…In most cases, PD drugs play a prominent role in the provocation of hallucinations and delusions. However, they are not the sole cause; the PD neurodegenerative process predisposes and they may occur even among patients not taking any drugs. Regardless, the initial theraputic focus is on potentially culpable drugs.
In clinical trials enrolling previously untreated PD patients, dopamine agonists were 2-3 times more likely to induce hallucinations than carbidopa/levodopa monotherapy. This may relate to the fact that pramipexole, ropinirole, and rotigotine all have selectivity for D3 dopamine receptors. D3 receptors are primarily localized to the emotional/behavioral circuits of the limbic system.
Adjunctive PD drug therapy, in general, substantially increases the risk of hallucinations/ delusions. Certainly, carbidopa/levodopa does occasionally provoke hallucinations, but once any adjuctive drug is added, the risks markedly escalate. This includes not only dopamine agonists, but also monoamine oxidase-B (MAO-B) inhibitors (selegiline, rasagiline) as well as the catechol-O-methyltransferase (COMT) inhibitors (entacapone, tolcapone).
This propensity to provoke hallucinations and delusions is not confined to dopaminergic PD drugs. The glutamate N– methyl-D-aspartate (NMDA) antagonist, amantadine, may also provoke hallucinations, as may the pharmacologically similar Alzheimer’s drug, memantine. Also, the anticholinergic PD medications, trihexyphenidyl and benztropine, are notorious for not only impairing memory, but also occasionally causing psychosis. Certain of the urologic anticholinergic drugs may similarly exacerate hallucinations, especially hyoscyamine (Cystospaz, Levsin) and oxybutynin (Ditropan) and less frequently tolterodine (Detrol). Darifenacin, solifenacin, and trospium appear to have only marginal potential for this problem.
my husband has been having hallucinations and he has parkinson’s disease. Is there a medication that he can take to control these hullucinations ? If you have experienced these please email me.
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my mum has parkinsons and has been seeing dead relatives an d small dogs and children
I was diagnosed 2005, and on 1gm levodopa (madopar – 200mg x 5) during the day. At night I often – while awake – hear a rustling and then feel an animal (maybe a cat – we have cats) crawling across the bed. It’s a bit scary. Turning on the lights makes it stop. My neurologist has prescribed Seroquel 25 mg, but it makes me so groggy that although I don’t wake up, my next day is like being in a sleep vice. no good. Better to put up with the hallucinations!
PD diagnnosis since 2004. Beeen taking levo-dopa since. Recently, strong hallucinations. Simply elikminating the one pill prescribed at bedtime completly banished the halucinations. (I take 2 on rising, and 2 at 2 pm.)
My 87-year-old father has Parkinsons and has
recently been admitted to a nursing home. He is being treated with carbidopa. Although he was never paranoid, combative or aggressive at home, since admittance to the nursing home, he is all three. It puzzles the family, and the staff doesn’t quite know what is triggering this either. Is this likely the disease process? The sudden change in environment (he had been at his home for the past 20 years), or a change in the dosage?
John, did you mean eliminating the levodopa prescribed at bedtime? how are you doing 8 months later?
My 70 year old mother was diagnosed with PD in 1995. Over the last couple of years she’s reported seeing flashes or illusions of people in her peripheral vision. About a year or so ago she had a scary incident of hallicinating and was told to stop taking one of her meds. This did the trick until recently when she began seeing people inside/outside of her house on a regular basis. Today one of her “friends”, as we now jokingly refer to them as, was with her all day. She said this was the first time she was actually scared. She describes the people she sees very vividly and that they are “ugly” and never speak, but just stare at her. She is very candid about these experiences and, most painfully, she is totally lucid and knows what she sees is not real. I am fearful that things are progressing quickly to a level that will not/cannot be remedied. Am I right? Don’t know what to do to help. Thanks.
John, which medication are you on for the PD? Is it Sinimet? My husband has had PD since 1993. He was taking Stalevo and did not have th hallicinations until we changed to the Sinimet. They did not start immediately, now they are very annoying to me.
my father is 78 and has had PD for about 10 years he has has hallucinations for about the last 5 years which started as incects and flies and have now progressed to evil looking people who he claims eat human flesh? at one stage he was taken into hospital because he was convinced that they were comming out of the walls and was so frightened he managed to walk almost a mile to the policve station to ask for help. He cant manage more than a dozen or more steps normally. Whilst he was in hospital they adjusted his drugs and for a short time he seems to be less bothered and saw the images less.
He has now moved into extra care accomodation and has assistance with his drugs from carers but in the last few weeks has started seeing people in his room? its all a part of the condition we are told and there is nothing that can be done so we have to help him live with it? distracting him sometimes helps and we try to take him out as much as possible but as his condition develops this is difficult. i jusy hope it is not heredatary because i would rather go in my sleep than cope with what has happened to him. he has lost his independance and still thinks he is much younger man and is finding life frustrating. he is taking Stalevo.
my aunt has had pd for about 10 years now. she says she sees my uncle bringing another man in their house at wee hours of the night/morning. she has said she can hear them talking too. we think she is hallucinating as her comments are very off the wall for her. she is accusing my uncle of very bad things. She is very paranoid. she could never describe him but now she is giving descriptions of him. we are totally lost as to what to do here. help please
I am very intrested in the hallucinations caused by PD. Seems that the cats and dogs are seeing things also. I am in the onset of PD. I have noticed small shadowey creatures about the size of a cat that are just barely out of my vision. If my cat is inbetween us she is also looking in that direction when i glimps whatever it is, when it moves. I just thought it kinda weird.
My dad had a very rapid progression with Parkinson’s. He was super intelligent and was very much a renaissance man, able to do anything he put his mind to and do it well. Parkinson’s took him down fast and he became confused. It made him very sad that he once could do so many things and knew so much and then all of a sudden lost track of thought and capability so quickly. His Parkinson’s doctors were some of the best and they knew very little about how to treat Parkinson’s. They adjusted his medication constantly like he was an experiment. He had a brain stimulator and they adjusted that as well. In his later stages he became more and more confused. He had hallucinations at night and would get up and leave the house and walk down the street normally, though he had trouble walking. At that point, I came to live with my parents so I could take care of him. He complained of seeing haints and children playing when there was no one there, he later complained of zombies and people in the house with glowing eyes tormenting him and staring at him. The doctors blamed the medication and the rapid progression as the cause. Truthfully they knew less about it than we did. Sadly Parkinson’s is still a medical mystery. One that doesn’t have a profitable enough cure. I left to go to Europe and took my dad and mom to stay with relatives while I was gone for 10 days. While I was gone he got anxious and had a bad spell with hallucinations and my family members allowed him to go home by himself. A few days before I got back I found out he killed himself in the front yard. No one I left him with was watching him. Now I wish I had never left. My neighbors told me they saw him running around the house like a young man, with full use of his legs. Last I saw him he could barely walk with a cane. He had told them he was seeing people in the house and cars and that they were trying to get him. Parkinson’s is a hateful, unforgiving, uncontrollable and traumatizing disease. To all those that have it I feel deep sorrow. I wish there could be a cure. I pray no one ever loses their loved ones to such circumstances. But If your loved one starts to hallucinate, do something, you have to. Don’t leave it up to others. Look after your loved ones. The medication may suppress the shaking but the side affects are often worse and add to the hallucinations. Do not get upset with your loved one, it’s not their fault and they are not crazy, they are just seeing things that you cannot see. Their minds are being manipulated by chemical reactions.
My wife is having PD for the last five years.She is suffering from hallucinations for the last one week. Dr. has reduced dopamine dose. Is that ok?
I now understand what it is like for Mr. Keniya, a friend of our family
I have been DX with Dopa Responsive Dystonia have been on Sinimet for 4 years. Didn’t have hallucinations until 4 months ago. While I recognize them as hallucinations, and sleep with a light on, I am still bothered by this development. Heard auditory hallucination only once, but it was a deep growl coming from a cabinet. Of course there was nothing there. I am a retired Clinical Therapist, and feel better equipped than most to recognize the hallucinations for what they are. However, I do live alone and worry that I may leave the house at night.
My wife has had dopa-responsive dystonia (DRD) diagnosed around 10 years ago, For the past couple of years, she has had worsening hallucinations, similar to those describe by others in this discussion. She is on Sinemet, which she takes at regular 3 hour intervals throughout the 24 hour period, and entacapone (Comtan) every 8 hours. We find that entacapone makes the symptoms worse, and that lowering the dose of that drug helps somewhat. Seroquel 25 mg at night helps her sleep and reduces hallucinations at night. We are searching for bette ways to control this without adding too much Seroquel, but it’s difficult without under-medicating. Her DRD has a lot of Parkinson’s-like features, which not all cases do. Very rare, so hard to generalize from one person’s experience. Every case seems a bit different.
Has anyone loved one with parkinson’s hallucinate a light source that moves and then a light source that is like two eyes and also a light source that is in a corner of the room and then the light almost looks like a figure.
My husband has PD and we have been there I am thinking we are not the only ones that going through all the different stages of this difficult disease Parkinson. We called the things he saw ghosts , and the rock people that came to life next door. When he is in an more open space they would be worse.The drug his DR put him on was
Quetiapine fumarate 25 mg it help then they started to return so the Dr add Nuplazid 2 – 17 MG tabs so far so good time will tell.
Medical marijuana was legalized in this state. I applied for and got approved. I had been taking I dose of cinemet in the morning and 2 at night to prevent horrific cramping. I am happy to report that I am only taking my morning dose and no longer have hallucinations!
My father has PD and I came home for the summer to take care of him and my mom. Needless to say it has been a really long summer. My dad has hallucinations, he has long conversations with people at night while he sleeps. He sees people he hasn’t seen in years, as if they where just there. He is taking Amantadine, (100 mg) Nuplazid (2x 17mg) and Quetiapine (25mg) Last night, after a call to his Dr, he recommended 2x Quetiapine at night… This extra 25 mg left him paralyzed in his bed, unable to get up and out of bed and he subsequently urinated all over himself and the bed. It was terrible for him…easy to clean, but left him feeling helpless. I am hoping someone out there has some thoughts on all these drugs and the use of them together. I have read that amantadine causes the hallucinations, and this is got me thinking …how important is amantadine? His tremors have never been a really big deal. It is only his right hand, not any where else on his body. So confused about all these drugs… Anyone else feel this way??
My husband was diagnosed with early onset Parkinson’s disease at 57.his symptoms were shuffling of feet,slurred speech, low volume speech, degradation of hand writing, horrible driving skills, right arm held at 45 degree angle, things were tough for me, but now he finally free from the disease with the help of total cure ultimate herbal clinic, he now walks properly and all symptoms has reversed, he had trouble with balance especially at night, getting into the shower and exiting it is difficult,getting into bed is also another thing he finds impossible.we had to find a better solution for his condition which has really helped him a lot,the biggest helped we had was ultimateherbalclinic they walked us through the proper steps,am highly recommended this http://www.ultimateherbalclinic.com to anyone who needs help.
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