hi! new here.... My dad is newly diagnosed and is having hallucinations from his Parkinson meds. He is bradykinesia dominant with lower back pain. Right now we're not sure what is causing the hallucinations but I think I have a good idea, just that the doc is not on board with the titration process.
The doc started my dad with Carbidopa/levodopa (Sinemet) 25/100mg, 2x a day & Mirapex 0.125mg 2x a day. He was doing pretty well - moved a lot more but then the doc increased both to 3x a day to help with the energy and off periods and a month later into the new regimen my dad reported hallucinations. So he reduced both back to 2x and did well again - even biked outside after 2 years of not being able to do so from the pain!! but hallucinations remained. The doc then reduced the agonist Mirapex - essentially discontinued it, and increase Sinemet to 3x a day. When he took Mirapex 1x a day, his mobility becomes worse, so discontinuing it would be a disaster.. I told that to the doc and he didn't ... listen. and now we're here.. my dad is miserable daily. I'm looking for answers from the community for alternatives.
Outline view:
• Start, 2 weeks: C/L + Mirapex, both 2x a day (good, biggest progress in mobility since 6+ years of pain)
• Change, 5 weeks: C/L + Mirapex, both 3x a day (reported hallucinations at doc visit at the last week)
• Change, 1 week: C/L + Mirapex, down to 2x a day (well. biking. moving. doing hobbies again, hallucinations still there)
• Change, 1 week: C/L 2x a day, Mirapex 1x a day (not good, pain again, beginning to swell, hallucinations continue)
• Change, 2 weeks: C/L 2x a day. Mirapex none (bad, leg swelling, hallcinations everywhere)
• Change, 3 weeks: C/L 3x a day. Mirapex none, added SEROquel for hallucinations (didn't do anything, hallucinations still here, even more so, sleeping less bc of the hallucinations, swelling continues and in pain)
--- Doc is adamant that the dopamine agonist (Mirapex) is the one causing hallucinations + swelling, but my dad HAS those symptoms when he's NOT taking it. & he's actually better when he's ON Mirapex. so it's a bit contradicting..... Doc also said dad should continue C/L and that it's protective of the brain and shouldn't cause hallucinations. From the looks of the whole process above, he's only on C/L right now which should be the culprit no? & I think taking both 2x a day would be best for my dad for mobility with the trade off the hallucinations as a side effect that we'd have to find a way to address.
Has anyone else had a similar situation? Or has an alternative solution that eliminates the hallucination side effect from the meds? Wondering what else can be done without worsening his symptoms. We had so much hope that he'd be pain free and good spirits as he continues his "second chance of living in retirement", but since adjusting the regimen because of the hallucinations, it's like we're back at zero.
thank you so much in advance!
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Got to have more history and medical background Art, right now she's asking advice from people who are basically trying to drive a vehicle but are blind because there's not enough information yet to figure out what needs to be known in order to operate that vehicle in traffic. Unless all she needs is a little bit of generic help on substances and histories and the guy has competent handling an advocacy or he can do it himself.
Meanwhile the comments people are giving look pretty interesting actually.
Yes yes yes... and it has taken us over 1 year to get them to acknowledge this Feel we are caught in the 'system'. As a retired nurse and nurse prescriber feel my PWP has just been 'left'. Now out of hospital - all is good , when it is not. On top of all of this they do a dementia test- guess what ..yes lets add in yet another medication. I am absolutely disgusted with the system but still fighting. We are in the uk.
My brother WP also having cognition problems but we are looking at Gingko Biloba and or Lionsmane as he's up to his eyeball with prescription meds. We also feel like he's just been abandoned. UK also
it sounds like too much levodopa to me. Whatever you do, do it gradually.
What l/c is he taking? Is it a tablet he can cut? I would try and get one you can cut and slowly reduce the amount he is on. If he is sundowning ie hallucinating in the evenings reduce that last dose first.
Ask for the 50/12.5 tablets instead of the 100/25. Take 5 closer together than currently spread over the day. Then halve the last one of the day. Keep the morning ones closer together and space the afternoon ones out slightly further.
Plot a table of
time: dose: how am I feeling?
every hour for a couple of days. If he is getting those symptoms around 90 minutes after a dose it is in my (not medical) opinion too strong. If it is worse as the day goes on I think it is because each dose in a day adds on the tail of the previous one so by the end of the day the peak 90 minutes after taking it will be out of the comfort zone. On top of that,natural dopamine if he is producing any, also increases levodopa pushing the peak even higher.
Here is a diagram I sketched to explain what I think is happening.
We have also swapped out some madopar for mucuna pruriens which peaks at a slightly different time after taking it. (NOW MP). Also added 3 x 1/2 doses of entacapone with the first 3 doses of the day.
Note we have no experience of mirapax but he does take 1/4 procyclidine x2 per day. If mirapax can be cut or reduced in some way I would also try that. If doctor gives him new drug now we start on 1/4 dose for a week. If he isn’t worse we increase to 1/2 . Don’t increase dose if 1/2 or 1/4 is an improvement.
Seems like good advice LAJ12345. The big pitfall is often to unnecessarily increase the L/C dose after the initial success. You don't think about lowering. It very much helps that such a detailed report by you is made. However, also the intake times of the medication are important. You may have already created the charts with John Turner's tool, but perhaps it can help to see what happened and what the effect of LAJ's and other proposals would be. parkinsonsmeasurement.org/t...
Anche mio marito ultimamente ha allucinazioni, di solito la sera dopo l'ultima dose di Madopar e talvolta la mattina dopo la prima dose. E se fosse il Madopar a causare i suoi disturbi? Prende anche 500 mg di tiamina hcl e un multivitaminico. In questo periodo anche sali minerali e sciroppo di liquirizia per la pressione a terra. Visto che i neurologi non aiutano, penso di provare la Nac. Se disintossica, magari lo aiuta a eliminare gli eccessi di levodopa...Qualcuno ha un'idea in merito? Grazie!
Sinemet is the least likely to cause hallucinations so I would gradually remove the Mirapex, and if that doesn’t resolve them, gradually reduce the sinemet. It may be possible to eliminate the evening dose entirely and that would be where I would start if I were reducing doses. (Unless tremor keeps him up, but you don’t mention tremor.)
Also is he taking any other meds for anything else or vitamins? Maybe there’s something else interfering.
For my hubby with no tremor, he’s never tolerated a very high dose of C:L. But if we reduce it down , hallucinations subside and his cognition is better…if we get it too low he sleeps a lot, faints, can’t walk without freezing, etc, if we get it too high he has delusions and then hallucinates (but wow can he move). So there’s a functional zone or sweet spot, and it’s a really low dose for him.
I keep a log of symptoms day by day as it’s really hard to dial this in! And just to note, as he’s become very sensitive to meds it sometimes take up to 6 weeks for hallucinations to clear up after stopping a med so you may have to go slower than you think.
The leg swelling worries me. Is it possible he has another medical issue causing this? Maybe check heart and kidneys? I suppose it could be something with constipation also?
Thank you so much for sharing your husband's experience! and thank you for the practical steps! I was going to create a new post to ask how long would it take for drug-induced hallucinations to clear and you already included in here, so thank you. Glad to hear your husband
My dad doesn't have a tremor. Bradykinesia and lower back pain are his main issues -> feels defeated, wants to give up, wants to go outside but can't because of pain, wonders everyday how he got to this point (he used to bike as his hobby, busy woodworker, chef, etc, he's the healthiest among his siblings, no medical issues aside from the pain; and now he's just miserable). We'll likely reduce the evening dose like you said. I called the pharmacy yesterday and they said the pill can be cut so we'll start reducing by half at first.
Hmm.. vitamins... the neurologist did start him on B12, B Complex at the same time of C/L + Mirapex, but no apparent leg swelling at the time for the first 7 weeks (March - May), and he was moving FAST, cool, calm and collected with dad jokes again. Able to sit for more than 2-3+ hours without complaints. Day and night.
The leg swelling became more apparent after the reduction to discontinuing process Mirapex (June to now). He is small framed-125lbs so not good for his ankles to feel like a travel pillow ring, weighing him down. Neuro added Gabapentin and the Seroquel for the hallucinations and that's ultimately when the swelling began. I personally have a hunch it's those two that are causing the swelling and aren't doing much to help with sleep nor the hallucinations but the doc isn't listening and says "no, they shouldn't really do that. it's Mirapex that would cause the hallucinations the most." ._____. well he's already taking only C/L and the negative symptoms are still present. So I'm hoping he can get off of those two asap to get him back to a sweet spot with the reduced C/L. He was on Gabapentin last year, but we weren't able to pinpoint whether it was actually doing anything since he was taking other so many other pain meds that didn't provide him functional relief. Leg swelling wasn't a norm but it did happen occasionally which is again, something i'm suspecting to link back to Gabapentin.
Over the years, he's had great vitals, no heart or kidney problems. Wouldn't hurt to ask his PCP to check on them again. I'll make sure to get an appointment in after the doc returns from vacay. My dad was taking a daily maintenance dose of Vitamin D 2000, constipation meds (stool softener, senna) and Iron for a while almost 4 years also....however, didn't think there would be any side effect concerns because they're vitamins.
Hi, does your dad have a definitive diagnosis, very confident, that you are dealing with parkinson's? What was the basis for the diagnosis compared to other things that might look like it or have similar symptoms, is it pretty clearly established that it's PD we were talking about?
Also using the antipsychotic and anti-seizure meds for sleep hallucinations is a little risky and they have significant longer-term side effects, especially when you were talking about what you said was the swelling. Did the doctor discuss the serious side effects of Seroquel such as significant weight gain (ie, it was a doctor trying to kill two birds with one stone, fatten him up a little?) Is this doctor going through his thought process to help you understand better and to input and ask questions and have them candidly answered? I sure hope you are not into somebody who is going to take you through a dangerous "bait and switch" sequence at your dad's expense because it could be very dangerous. Sounds like at the very least your physician or neurologist needs to be closely cross consulting with an internal medicine specialist.
Help here can either be helpful or it can be inadvertently a path into more serious confusion with worse consequences, depending and how actually communicative you're willing to be. I think we are going to need a little bit about dad's health system, can you pick and choose doctors, get a specialist, what is your ability to have your doctor available and listening, is it freely available or easy to contact and send messages and get feedback over several com7nication cycles or have a running conversation as needed, or is it difficult? Or even forbidding or financially unviable?
Do you have a general practitioner or family practitioner, or is your doctor a specialist neurologist? What about any other co-occuring conditions and treatments? Are you able to make contact and develop a relationship with the provider, or does it take a very long time to be able to actually have consultations and follow appointments? Very very important for you to share these things.
If you want advice that is, if you want to just have a couple quick ideas at this point and don't really want heavy advice, please please make that clear.
You must also think about how good your (or somebody's) ability to insist and take charge of the priorities is, because absent that the doctor will have to do that and if he is not any good at it or frightfully busy, then being passive or timid is not going to help you, in fact it may hurt you.
Assuming your dad is otherwise fit and mentally capable of running things... If he isn't, then you are going to have to understand the idea of the role of "case manager" and "advocate," and "decision maker," because that's going to be you, and absent a case manager role you're could have a difficult road ahead where both you and your father are subject to experiments, without any good idea as to whether they are going to be good or bad or how long the processes are going to take, kind of like a guinea pig or on a highway trip with a blind person driving. Maybe not so bad right now but in time as things get more complicated.
You are also going to have to devote yourself to a little bit of schooling, do some homework to learn as much about PD as you can. This will profit you greatly if you take it seriously. PD is not for dabbling.
hi MarionP . thank you for your time and all of your replies in this post. I've read all of them.
I appreciate the lookout that help on this forum may either be helpful or lead to a road of more confusion. I did not register on this site blindly. I am his daughter and in the past 4 years, I've acted as his liaison with doctors, researcher, translator, care advocate, care manager and health care proxy, all while taking on a full-time job. I fully understand those roles as I've spent a decade in healthcare. I take this very seriously. This is the 1st PD forum community that I've seen that is very responsive and provide more first-hand insight from caregivers and patients directly, which was what my post is looking for on their experience(s) about having hallucinations/swelling as a side effect and how they navigated the titrating process when the doc doesn't seem to be listening TO the patient / their advocate. I posted this because we hear the common "don't stop or reduce medication without talking to your healthcare provider" that sounds like if we make any adjustments on our own something more serious can happen, but when in reality, almost every doc visit so far IS a medication adjustment to the next level up or down — something we can do virtually without needing to travel 1+ hours just for a short 5 min chat and to do the same. Knowing how others have advocated for themselves and their own dosage is what i'm after in here. Learning how others have also been neglected or dismissed by the industry is also helpful. Anything is welcomed honestly. The neuro did talk through his thought process, but it doesn't make sense based on the tracking we've done at home since the reduction.
I too hope that the current neurologist is not kind of situation either. It is really frustrating that the system and every doc visit is so short (no matter which specialty or office) while the act of monitoring symptoms + side effects is a 24/7 thing by caregivers and partners like myself without immediate guidance of the provider. I have a dedicated spreadsheet with multiple tabs that includes all of his symptoms, rx list, his care history, care team info, imaging hx etc.
Anyway, this process all really began since mid 2019. my dad has seen 4 neurologists prior to this current one. They gave contradicting diagnoses and frankly, their clinical diagnosis/test was based off of the different and fluctuating stages of how his pain was affecting my dad which is not "too concrete" (ie: 2 (A+C) of them said he did have it, and the other 2 (B+D) says he didn't). My dad doesn't have a tremor, just slow walking, 'lazy' walking habits (not lifting his feet), was shuffling last year when he got really weak from his pain symptoms and no appetite, but he hasn't done so since regaining his weight earlier this year before even starting the PD meds. He was also under a psychiatrist's care since 2019, and psych believes it's the pain that's causing my dad to look like he has bradykinesia and stiffness. Adamant that people in pain wants relief, unable to move as fast as they used to and is unhappy.
When we saw A+C, the pain was too much for him to bear, he was in agony, didn't want to be at the offices, waiting over an hour which annoyed and agitated him, he paced around instead of sitting because he wasn't comfortable to sit at ease. Basically traumatized and didn't even understand the point. When we saw B+D, the pain was kinda manageable, enough for him to smile at the doctor when we walked in and was a bit more engaging in the movements the doc asked him to do.
So one side of me does feel maybe my dad is still being misdiagnosed as new side effects/symptoms and the pain is still here. The current neurologist is not available when I need answers, but the office manager is as the liaison/messenger between us and i am really grateful that he is thorough. I do have some reservations that this is might be sciatica/nerve pain/something in the spine muscles that the docs aren't exploring ... or maybe SOMETHING ELSE that looks like parkinson's but they're immediately jumping to PD instead.
I've also threw myself in many webinars, previous videos from several PD orgs, reached out to many different ambassadors, so fear not, I'm not just dabbling into this. I am looking for insights to something that feels so gated in our culture and community - especially when NONE of the neuro offices even offered ANY pamphlets or SOME type of informational packet/brochure about this disease, or even how both patients & caregivers should start preparing for the journey ahead.
Are you in a position to consult/travel to a multi-specialty interdisciplinary, conprehensive-capable-model clinic like Cleveland Clinic or Mayo or something roughly equivalent where you are or near where you are? Most regions have one.
Hm interesting! Thanks for the info. I think the closest we have to something like that would be the local hospitals. I will have to look deeper to see if we have something equivalent to Cleveland/Mayo Clinic in the NorthEast that's accessible to us. The hospitals are booked out until the end of the year. As for now, I was able to book a slot with a MDS for October + be added to the cancellation waiting list. The hope is that my dad'll eventually get to a better place between now and then to be able to report what's working and what's not working to them.
Also, traveling really depends on how much pain my dad can manage while sitting in the car. He can barely sit still at home right now along with the swelling.... if both can become manageable again with the right medication adjustment then and only then traveling long distance would ever be considered.
Multi-specialty clinics, not hospitals. They all are closely associated with hospitals but the hospital isn't the setting. They usually start you off with internal medicine and then with consultation with you they then draw up a set of recommendations for referrals at the various appropriate specialties that the internal medicine examination results suggest for exam by the various appropriate specialties . Sometimes the clinic is even smart enough to try to pull it all together in a coordinating team leader or enter specialty approach, and you should ask for that and Coach them to provide that for you so there aren't things pinging around like pinball machine.
There's probably one in Philly, at Penn ot maybe Thomas Jefferson or Temple, maybe one around Princeton, and at least one or two in Boston and of course New York will have one around somewhere there. If you're closer to DC then you might try around Bethesda or Baltimore, like Johns Hopkins.
You might also just call a couple of different doctors whom you trust and ask them who would they send their parents to for a comprehensive multi-specialty clinic assessment. They will also probably have pain management specialists.
Proper diagnosis is an extremely complex and comprehensive business, don't underestimate the possibilities that things you think are cause are actually caused by something else very surprising. For instance pain can be from a preliminary treatment, or it can be from cancer... you thought it was an upset stomach and it turns out to be a tumor. Or you thought they can't handle pain because it would involve using opiates short-term, one it might be just fine if approached carefully and well supervised by pain management doctor. It really takes professional help to run some of these down and these folks will have the complex interlaced decision trees to do it. Also along the way new things can arise to confuse the picture, from some people's well meaning attempts to deal with things before they know the entire picture, premature rule outs, or that present a very confusing picture that understandably could be mistaken for something else, as well as overlooking possible reasonable preliminary treatments or treatments to get you the worst symptoms while they're finding out more, like pain and nightmares and sleep deprivation. There can be more than one condition operating and only one of them known, it really does sometimes take a good detective to put together the right entire picture. (For instance, nobody here has yet mentioned instead of using antipsychotics for both sleep AND nightmares, use a little mild sedative for sleeping called clonazepam. For some people it handles both without the big risks of antipsychotics or anti-spasmodics.) In that vein, a word you should become familiar with is "iatrogenic."
On traveling in pain: it occurs to me that if the person in pain can be a passenger, then they can sleep with a little bit of sedative and then they're freed from the pain for part of the trip at least. 4 hours in a car when you are asleep, and an overnight or two in the motel near the clinic, or if it takes longer to set up the appointments after the internist has seen you, then a week's stay at a motel next to the clinic or return trip to pack in all the different follow-ups, travel can be done the same way. Most people are allowed opiates when the pain is great enough and it's under a doctor's prescription supervision, unless they have been addicts or something like that.
Use the internist as a sort of team coordinator or team manager.
If you have to be overnight or there for 2 or 3 days at a time and can't figure out where to go for the proper place to stay, if it's a clinic like mayo or Cleveland clinic, they have usually a free service for finding, arranging, coordinating and organizing such things called "concierge," ask for it.
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