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Topic Auditory Hallucinations Go to previous topic Go to next topic Go to higher level

By gap2010 On 2010.11.10 17:21
Well, we have begun another part of the journey. My husband is now hearing voices and seeing things move in his peripheral vision. Went to the neurologist today and when we told him he said Oh No, but then didn't elaborate. Said it was either the parkinson's disease or maybe meds. Is this the start or sign of dementia? any thoughts, advice, insight would be appreciated. Thanks so much!
Gwen

By packerman On 2010.11.10 17:41
you might want him to see a psychiatrist. my hubby is bipolar and was having auditory hallucinations and the doc was able to prescribe meds that do not upset his PD.

By LOHENGR1N On 2010.11.10 18:59
gap, I wouldn't jump to dementia yet! It might be the med's. I have a friend who was seeing little men in camouflage fatigues who he was talking to for a time. When Our Neurologist adjusted down some of the medication these people went away and he hasn't seen them in years now. Our medicine as I always say is mind altering. I'd try having the doctor adjust his med's then go from there. I know it's hard to see and deal with but try to stay calm, try not to panic and think the worst. We're all here to help get you both through this. Take care, best of luck and hang in there.

By Emma On 2010.11.11 05:41
gap, the hallucinations could be from the medications, they could be from dementia, they could just be part of the Parkinson's. Some Parkinson's Plus disorders, like Lewy Body Disease (which my husband has) are more likely to have hallucinations associated with them but typically those start early in the disease. I know that this is difficult and scary for you because it's a new symptom but I can tell you from experience that you get used to it. My husband constantly hears doors slamming, people talking, bells ringing, you name it. He also sees things out of the corner of his eye (usually mice), and sometimes sees full blown things that aren't there, like a man sitting on the sofa. Our movement disprder specialist told us that visual hallucinations are more common than auditory in Parkinson's but that both can happen. Visual hallucinations are often of people, especially children. My husband is not freaked out by them which is good. We've been through this so long that if he mentions seeing or hearing something that's not there I can just say 'hallucination" and he says OK and that's it. I hope that just knowing that this is not unusual for PD helps.

By sannph On 2010.11.11 15:37
My husband has also had hallucinations. I must say that it is scary to me when it happens. He has seen pictures moving on the wall and kids in the back yard when no one is there. The neurologist did do a med adjustment and he hasn't had any recently.

By dlsagen On 2010.11.29 18:07
My husband is going through both visual and auditory hallucinations at the moment. 3 weeks ago he fell and fractured his shoulder, and was trying different pain meds. This seems to have triggered serious hallucinations. I came home one day and he told me there was "a situation in the living room." He was convinced the room was full of people. He has spent hours talking to his brother, only to find out his brother is not there. This is very frightening to me, as he is convinced these people are stealing our "stuff", and he wants to call the police. I'm holding my breath that in a few days the remnants of the pain meds will leave his body and things will improve. This is what the doctor we went to this morning said.

By caregivermary On 2010.11.29 20:46
same thing going on here-auditory-voices and music and general visual hallucinations. husb took hydrocodone for pain. I didn't want him to take it but our home health nurse asked him to try it. big mistake-that was 10 days ago and just two 7.5ml doses and it still is in his body. I now know why annwood and jocdoc said these kind of issues were more difficult to deal with and frightening to them than the mobility issues. why do the pders have to go through this?

By mylove On 2010.11.29 22:48
Kind of a side jaunt on this topic, but for those of you reporting problems with pain medications, are your loved ones further along stagewise? The reason I'm asking is that we still take them very successfully, and so far have not experienced anything like that. (Hydrocodone, cough syrups with codeine, etc) In fact, now we're finding that we should have stuck with Vicodin, as the Neurontin hasn't seemed to have much benefit and has the unfortunate side effect of eliminating all other possibilities for pain medication while you're on it.

I'm wondering if the confusion, hallucinations, etc are another one of those "you might get it or you might not" side effects, or if it's just something that comes with further progression? If so, I would feel like it was something we might have to look out for.

By LOHENGR1N On 2010.11.30 00:29
ML, Interesting question. I don't know for sure but you got me thinking. Over the years discussing what med's for pain could be or should be taken, my neurologist has always said the stronger the pain med the more it is apt to make Parkinson's symptoms worse. Perhaps it is a more personal issue than I've given thought to it being? A situation of what symptoms one is having and the amount of control their med's have over the symptoms? Then if you add in having symptoms increased? It would become a how much of this increased problem would be tolerable for the patient? Perhaps this is why We have differences in what one doctor will say one patient can try when another patient is told not to use it? This could also explain why the options of what I can take has seemingly shrunk over the years too. If so, then the advise of running "it" by your neurologist before trying becomes much the more important. It does seem to make sense as if we each get a different package, that package would respond to medication differently too. And the further along the more complications might result.

As We've discussed here on the forum before many in the medical field don't know that much about Parkinson's Disease. Oh they know the basics but the nity-gritty in the trenches living with it is foreign to them, which is why some neurologists dedicate their practice to movement disorders. Many view a tremor as bothersome, to them if it increases it's just more bothersome. If they lived with it either as patient or caregiver they would see it is much more than just bothersome. As for medicines some might react with Anti-Parkinson's medicine even if just a "little" if one is at the level of medicine where increase will produce hallucinations (visual or auditory) and a pain med is introduced that upsets that delicate balance of medicine? We should remember that pain medicine blocks the receptors in the brain that register pain if these same or neighboring receptors are also blocked by pain drugs our medicine can't reach them, which could maybe result in hallucinations too? I don't know but after reading your post it seems to always run it by the neurologist first sounds better and better. Take care, best of luck and hang in there.

By Emma On 2010.11.30 04:15
mylove, My husband is quite far along with his PD and he tolerates pain medication very well. He can take Vicadin and Norco with no problem. The only pain med that has ever really caused him a problem is morphine. It's rather interesting because he is someone who has had auditory and visual hallucinations as a symptom almost from the beginning of his Parkinsons yet pain medication doesn't worsen that. Everyone really is different.

By susger8 On 2010.11.30 08:59
For a while my dad was having a lot of hallucinations, including a bad couple of months when he was seeing snakes and spiders everywhere. At that time he was on Sinemet CR, Comtan and Requip. His new neuro took him off everything but regular Sinemet and the hallucinations improved quite a bit. He still sees things sometimes, but they seem to be harmless, non-frightening things like cats and children.

Sue

By theresa2wyoming On 2011.02.09 01:45
My husband experiences both auditory and visual hallucinations. I think one of the hardest things for me is when he won't believe me if I tell him something isn't there. I haven't ever lied to him, and we've always had great trust in each other, so it feels pretty horrible.

Paranoia seems to be just as big of a problem, and seems to intensify when the hallucinations increase. I hate it when my husband thinks I'm mad at him, or that I would leave him, when it is so far from the truth. I sometimes feel trapped by his insecurities, yet I wouldn't leave his side during these hard times. I am sure that sounds like it is inconsistent, but I think that is part of life with PD.

One fear I have is that he will say something that will be taken seriously by someone who doesn't know he isn't always in touch with reality. The other day he told me he would never play cards with so and so, because he cheats. The accused hasn't ever played cards with my husband, so he would have no way to even know if he cheated!

By Pearly4 On 2011.02.09 08:33
I wouldn't worry about others - they seeem to figure it out pretty quickly. My mother accused me of stealing her Christmas presents in front of a waiting room full of people. I got all kinds of dirty looks, then the whispers started and messages were passed and I got all kinds of sympathetic looks! When she started calling the police they were very compassionate and understanding.

Don't try to convince him what he's seeing/hearing isn't real -- you already know you can't change his mind. You can only change your reaction to what is going on -- play along with it, ignore it, give him a noncommittal, "oh really?" or whatever it takes to calm him down.

You might want to mention it to doctors and make sure that medication effects aren't causing some of it and there are medications that will help -- my mother took Seroquel which calmed the hallucinations and her paranoia and helped her sleep better at night too!

By LOHENGR1N On 2011.02.09 08:35
theresa2wyoming, Hi and welcome to the forum. Hallucinations and paranoia are big problems We experience at times, and you're right one seems just as big as the other. With our medications the Doctors are trying to strike the right balance or a balance We can live with. Some medications block nerve receptors, some stimulate nerve receptors in our brain some replace the chemicals our brains don't produce any more. The Doctor might want to adjust His medication levels a bit to try to cut down on these side effects. Again welcome to the forum you've found a great bunch of caring, helping people here. Take care, best of luck and hang in there.

By ForgottenMind On 2011.02.09 11:17
In my short experience as a caregiver, the one thing that I have determined to be excessively contributing to the hallucinations etc, is in the beginning of the effects of Provigil, or any other stimulant, either drug related, or food related. It also seems to be more negative when the client is tired and takes these things to help wake up. I found it easier to involve myself with the client and the hallucination and eventually dismiss it and move on. As an example, we now have names for the spiders that he used to fear and quietly encourage them to just go back to their closet, because we are busy right now. As far as the double vision etc, this hadn't been a problem until we started playing gin rummy and he insisted that he had 15 - 20 face cards to add to his score.
Fortunately, he also counted my hands with equal error and we now just play to 2000 instead of 300. I have discovered that my job, being 14 hours of each day, is easily handled when my effort is solely to keep him happy and smiling. To hear him laugh openly is an added bonus...to encourage him to play the piano is priceless. He told me that he knows that he will miss me when he's gone, ut i assure him that we have another 25-30 years to worry about that...and that it's his deal.

David

By onthinice On 2011.02.09 12:08
My husband has experienced auditory hallucinations for several years now, and visual hallucinations less frequently. The other day, I walked up to him from the side and he said "Who's your helper?" - he thought I had someone with me. Whenever he's been hospitalized, has been taking pain meds, or has had a head injury, the hallucinations get much, much worse. The last time that it was really bad he left our house at 4 in the morning, went to the neighbor's house across the street, told them that three men in a car came and took me away, and I went with them willingly because I was so tired of taking care of him. When the neighbors brought him back to me, he still would not quite admit that he was hallucinating - which was the most frightening part of all. The other night, he said he heard a branch snap, so he went outside to see who was walking around, but once he got out there, he realized that we don't have any trees that would drop branches that would make that kind of noise. I'm going to have to overlock our doors soon.

By susger8 On 2011.02.10 09:28
For a while, my dad was having a lot of hallucinations, but mostly they did not bother him. He would report seeing animals, children, trucks, and airplanes. I asked his original neurologist whether his PD meds should be reduced, but he brushed me off. We then switched to a very knowledgeable movement disorder specialist, who immediately took him off Requip and Comtan, and switched his Sinemet from the CR to the regular. This helped quite a bit with the hallucinations. It seems that for older patients (dad is in his 80s) who have had the disease for years, the meds don't help the PD symptoms much but contribute greatly to side effects, including hallucinations and delusions.

Of course, some of this can be related to the disease itself, so changing the meds is not necessarily a cure-all.

Sue

By parkinit On 2011.02.12 08:39
David and Sue -

You both make very good points. David, I've found that by simply making curious inquiries about the hallucinations without acting freaked out about them, I was able to stay in touch better with your PWP. David, he also saw, usually from sticks on the ground or maybe even a shoestring, snakes often. One time, he came into the kitchen and said, "There is a snake in the bedroom." I found it was the string that holds his eyeglasses around his head. He said that fire hydrants often looked like little children to him. He often saw little trolls. He said it didn't bother him and they weren't normally aggressive and yes, he talked to his, as well and told them to simply "go away" and they did.

When it became tricky for us, yet, I still try to keep the communication lines open and not act alarmed, is when he began having delusions along with the hallucinations. That is when I fully engaged the assistance of the doctor with med adjustments. My PWP mentioned that he had been seeing other people in our room - little people, which he normally sees - but that he had the feeling that our room was the portal to heaven and they were waiting to go through the portal. I asked if any had been waiting long, and he looked sad and said, "Some have been waiting quite awhile."

At this point, I alerted the doctor and he added seroquel to the 1.5 pills of (.5 mg) clonazepam at night and added a few more doses of clonazepam (1 pill, .5 mg) to our daytime doses. We also were requested to reduce the amount of sinemet by 1/2. My PWP refused to do this, so the doctor is seeing if I can get a healthcare R.N. in here to administer the pills, so I'm out of the equation and we don't have this controversy between us. I tried to reduce the pills per the doctor's request, but my PWP immediately noticed and was very angry with me. We're still working on this, but it seems with PWP, there is a constant juggling of meds.

Another response to an earlier comment. We are in the last stage of PD, and yes, I believe you get to a point where the med is not as effective and causes more harm than good. I feel this is why the dr is reducing the dosage. I fear we are headed into a really scary stage of PD for us.

By HappyPuppy On 2011.04.07 19:08
This thread is partially why I started looking for PD forums today... My Dad had a few, mild hallucinations on Requip but was falling nearly every day, so he was put on Sinemet a week ago at what I think now is too-high a dose - 25/250 and the change in him scared me. He hallucinated a lot more over the past week and couldn't stay awake in front of me - half awake/half asleep and was saying things that didn't make sense. I am hoping it is the meds at this point but my Dad even called 911 the other day because he fell and couldn't get up instead of calling ME (I live a mile away)! Now I posted my phone number in big font all over the apartment. I can't really tell if his mind is going or if it is the meds but I have had to take over everything administrative. I am afraid we are closer to looking for a care facility than I have hoped. Unfortunately, bringing him into my home is not a viable option and I think he needs more help for daily things. I am STILL hopeful, however, that we will be able to dial-in his meds better and achieve better overall results but I don't know how long to pursue this course before making any big decisions....

By susger8 On 2011.04.08 08:18
Hi, HappyPuppy, and welcome. This is a great place.

Is there an option to keep your dad in his home but have a health aide come in to help him? I ended up getting a live-in health aide instead of placing my father in assisted living -- it was a much better option for him, and a bit less expensive too. If he had gone into assisted living 4 years ago when he first needed help, he would be in a nursing home now for sure.

Sue

By buffsrich On 2011.05.10 07:40
This is all very interesting. My MIL started having hallucinations last night and the rehab center called us and wanted us to come right over because she wouldn't calm down. Seems like we were in the room with her and she got very upset and angry that we wouldn't talk to her. We were warned by the doc this would happen at some point and it seems very common just by looking at this one topic. She's been on requip for years and hasn't caused a problem. Does anyone think we should lower the dosage for a couple of days to see if the hallucinations go away?

By susger8 On 2011.05.10 08:46
Sometimes the meds that worked in the past stop working as time passes and the disease progresses. Requip may be causing more problems than having a benefit. But -- I don't recommend decreasing it on your own, and especially not to stop it abruptly. It would be best to talk to her neurologist about whether to decrease Requip and how to go about it.

My father was taking 12 Requip per day, and when we changed neurologists, he had us decrease by 1 pill every week until he was off it -- so that took several months. He had no increase in tremors or other PD symptoms once he was off it, and the hallucinations improved, so I am pretty sure it was not doing him any good.

Sue

By urbandog On 2011.05.24 14:36
This forum has been so helpful. My husband was recently put on Neurontin for his pain and as the dosage increased so did his side effects. I was very frightened this weekend when he started having double and triple vision but when he started seeing me talking to liitle girls who weren't there I was really upset. Parking meters all had faces and his motor coordination was lost. Now reading your post it amazes me that seeing children seems to happen frequently. We've stopped the meds but the side effects are still there which makes me wonder if this is just PD.

By LOHENGR1N On 2011.05.24 15:31
urbandog, The medicine took time to build up in His system, it will take time to exit or clear His system too. Some of our medications can take a month or more to be filtered out of our system. Try to remain calm and ride it out as he clears this drug. I know it's hard and I know many times We seem to react quickly to medicines so we expect side effects to vanish quickly also. But with many of our medications this isn't the case. It doesn't make it any easier to witness or go through but knowing this is probably the case it might make it more tolerable knowing the light is at the end of the tunnel, it is just taking longer than expected to reach it. Take care, best of luck and hang in there.


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