Hallucinations

[jcavana]

Has your loved one with Parkinson’s ever had illusions/hallucinations- meaning they look at you or someone else and sees something different. My mom sometimes talks about a little boy or a man when it’s just her and me (her daughter) in the room or condo and on other occasions thinks I am that man or boy when looking at me. This tends to happen more when she has a UTI or is going through a med change. Anyone else have this happen?

[CPT_Helen Partner]

If anyone is experiencing hallucinations, is based in the UK and would consider taking part in research, there is a study in the UK called TOP Hat

[Beanie57 in reply to CPT_Helen]

Just had a look- Would have been interested but yet another tablet to add to the ones that are causing the problems....... At present we have no idea if it is the Parkinson or S/E of the medications my PWP is currently taking. Symptoms worsened suddenly and in line with increase in meds.

[jaybar in reply to CPT_Helen]

My father, late in his PD, hallucinated. He would see “some children” standing in the corner of the room. He’d usually ask who they were.

[wifeofparky]

Hallucinations often happen in PD. Contact her MDS to discuss this.

[Juliegrace]

My mom who has frequent UTIs experiences delirium and has been very unlike herself at times. She had a Supra-pubic catheter installed and it’s been better but she still has to be watched very closely. In a previous thread here someone mentioned d mannose as being helpful in preventing UTIs. My mom won’t take anything not prescribed by the doctor so she is not taking it.

[jcavana in reply to Juliegrace]

How long does it take for delirium do go away completely after treating UTI?

[Juliegrace in reply to jcavana]

When it was at its worst it took about 3 days on IV antibiotics. She has some other early indicators and, luckily, my sister lives near my parents and keeps a very close eye on her.

[LAJ12345]

Is she on a sleeping tablet? Hubby was behaving weirdly in the evening when on too much levodopa and zopiclone, then replaced with quetiapine to make him sleep. He was pacing, saying he didn’t know what to do, asking for help to die etc. The nurse said it was sundowning, and common in elderly and dementia patients.

Now he has reduced the levodopa, doesn’t need the sleeping tablets and has completely reverted to normal at night.

I would suspect the meds if I was you.

[Trailing in reply to LAJ12345]

Do you know by how much he had to reduce the levodopa?

[LAJ12345 in reply to Trailing]

He had been on 3 x 62.5 mg madopar blue capsule plus 2 NOW Mucuna pruriens capsules per day. It wasn’t enough by the evening and the doctor said he was very under medicated and put him on 5 x the slow release 125 capsules without the MP.

This was what caused the insomnia so they added the zopiclone, swapped it to quetiapine , then he was constipated and so disabled I had to help him get onto the bed, go to the toilet and so was given laxatives. He could barely move. He had never had trouble with insomnia, constipation or his legs before.

It reached a crunch point one long weekend when I couldn’t get hold of any medical people and he was pacing all night , saying “tell me what I should be doing, I want to die…” etc.

I just decided to put him back to the old regime, took away sleeping pills and just added an extra 1/2 x 62.5 tablet so he went to 3.5 x 62.5 madopar mg as it couldn’t be any worse and he slowly recovered function over the next few weeks. He also had seen a psychiatrist when he was very sick and they had given him a low dose of clonazapam (0.5 mg cut up and taken over the day) and I think that has helped his anxiety and seems to be one of the only things that doesn’t create side effect for him.

Before he had medication changed he had reduced the vitamin supplements he was taking too which is why I think he deteriorated. Now he is back on the full doses of vitamins and better than he has felt for ages. He has no constipation, can walk and get onto the bed again, go to the toilet by himself no problems again and mentally and at night he is completely normal again , no desire to die.

The psychiatrist had wanted him to take antidepressants as he said he was depressed, but now the drugs have been reduced and eliminated the depression has mysteriously gone. It was entirely caused by the meds!

[Trailing in reply to LAJ12345]

Thanks for taking the time to answer with such details. Unfortunately the only thing doctors have to offer is more drugs. As you have learnt, the less medications that you can get by with the better.

My husband has only taken MP. At first he took the white extract form but presently he takes the whole MP seed powder. However, just because it is a whole food does not mean it is safe as it contains el-Dopa, a neurotransmitter. It too can cause side effects and become addictive in doses too high for the individual. We are learning these things the hard way.

We must keep in mind that any med or supplement containing el-Dopa only helps with the symptoms and does not heal their Parkinson's. If only we knew what caused it in the first place. We can only do our best and take one day at a time. You are being a good and caring wife. God Bless!

[rsacdoolittle in reply to LAJ12345]

LAJ12345, it sounds to me like Quetiapine will NOT be a good option should my father with PD get worse cognitively again. Meds can really mess things up sometimes. I 'm soooo happy to hear your husband got better. I now see this is from a year ago. Hope he is still doing better.

[rsacdoolittle in reply to LAJ12345]

LAJ12345, glad to hear he got better. Was the quetiapine used just for sleep? I've heard it's an atypical antipsychotic that is used to treat Parkinson's-related psychosis if the problem gets so bad that an antipsychotic should be tried. Just curious since Dad has been going thru some stuff too.

[LAJ12345 in reply to rsacdoolittle]

Yes just for sleep for a few days but he quickly stopped it as it was making him constipated. Melatonin seems to work better for him.

He is going through a bad patch again so having to figure out what is going on. We have had a lot of bad things happen lately . Plumbing leak causing massive damage insurer won’t cover, and now months of repairs and lots of money to fix. Faulty workmanship at rental property causing near fire etc. these things really set him off so I think these are the problem this time. Also spring pollens always make him worse.

[rsacdoolittle in reply to LAJ12345]

Sounds like it to me too. These things always affect Dad in some way to the negative. Praying you figure out what might can be done to compensate during a stressful time.

[LAJ12345 in reply to rsacdoolittle]

Thanks🙂

[rsacdoolittle in reply to LAJ12345]

And it sounds like Melatonin is becoming well known for many health benefits.

[LAJ12345 in reply to rsacdoolittle]

Yes it seems so.

[1LittleWillow]

My mother had Alzheimer's. She passed away in 2013. During the last year of her life, she experienced a lot of auditory and visual hallucinations.

[Rachelgardiner]

When we are sitting together outside in the garden, my friend, who has advanced Parkinson's, sees things that I don't see. So far they are pleasant or benign things, such as birds in the sky, butterflies or other insects. Sometimes I wonder if it's him "creatively" interpreting things with his poor vision. One time three crows landed about 15 feet from where we were sitting outside. And the crows, being naughty, began to do play with some flowers and plants. My friend thought they were kittens playing and got quite peeved with me when I told them they were crows! These hallucinations doesn't seem to be associated with med changes and it has been happening for months now. I simply don't argue with him about this because it doesn't help. If ever he begins to see nasty things, then I will gently explain to him about hallucinations and encourage him to talk to his MD about this.

[rsacdoolittle]

Jcavana, yes my father does this.. And it started mostly after surgery. There are some things that have helped our dad over time. If you read my last 3 or 4 posts, you can see how it got started and where we are now. I just noticed you said it's worse when a UTI infection is present. As far as we know, Dad never had one, at least the tests didn't detect it, even after surgery. We believe all the changes from the broken ankle and then surgery on it, anesthesia, post-surgery pain meds, etc. started the cognitive decline. It has been a few months and over time he has both gotten better with the hallucinations AND learned some coping skills. I told the story in my last few posts. Sometimes it helps to read others' experiences. (I NOW REALIZE THIS WAS A YEAR AGO THAT YOU POSTED.)