My 97 yr old mum was finally given a diagnosis of atypical Parkinson's after a DAT scan. She's been treated for 8 years. A few months ago she was given Opicapone. I thought it was the answer to my prayers until she started hearing music and finally after 5 weeks hallucinating badly. I titrated her Sinemet down and down and down ...still she hallucinated finally I took her off Opicapone. It took a week for the horrific hallucinations to stop and then I had to slowly titrate up her Sinemet again. Too low she hears voices, too high she hallucinated.
She is currently on 250mg CR and one Sinemet plus every 4 hours. I've just introduced 250mg CR at 2am too as the voices were making her do all sorts of things in the night.
She was TOTALLY normal before Opicapone. Yes she had a dopamine problem but nothing weird mentally. It has permanently changed her brain I've no doubt. Her consultant to whom I speak occasionally on the phone will hear none of it and is muttering on about lewy body and geriatric psychiatric assessments. I know she needs more Sinemet to stop the voices. He talks over me when I tried to tell him what does she is on and and what I feel she needs which is 2 x 250Cr every 4 hours. Clearly he does not want to put his name to that sort of prescription meanwhile I am as always managing at myself and and will inevitably run out of medication and incur all sorts of bad mouthing and serious letter writing from doctors once they know what I have done. I have been fighting since December and and was out on a limb on my own until finally the datscan confirmed what I knew.
What to do ? You cannot purchase cinemate here and I am wondering whether I should be trying to introduce just a tiny amount of Opicapone every few days in order to stop the breakdown of dopamine (as opposed to the massive 50mg per capsule that we have in this country).
My mother has always responded very well to Sinemet with no side effects. She does not have dyskinesia or pain rigidity et cetera her Parkinson's is definitely not typical.
Is there anybody in the uk on Sinemet 24-hours a day ? I.e. 2 x 250 CR every 4 hours ?
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heidle
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Finding a different M.D. would be in order if you are able to do so.
Be that as it may, the dose you are aiming for is a big dose and you may have trouble getting that prescribed. You have already determined the Opicapone is bad for her so I would stay away from that. Consider an MAO-B inhibitor instead - Azilect, selegiline or Xadago. Another thing to consider would be supplementing her Sinemet with Mucuna.
Yes I have some mucuna. Her consultant dismissed MAOB inhibitors saying it was too late. He said Opicapone was our only hope. Given she's so atypical I would have thought it worth a go but what do I know.
It may be the consultant regards her Parkinson's as too advanced for an MAO B inhibitor to make much difference, but exactly the same logic holds for Opicapone.
As Park Bear says the dose you are aiming for is high and especially for an older person who metabolises meds slower than younger people. It would be 2400 mg long acting levadopa every 24 hours!! (I use long acting levadopa and take 800mg day.) . If I took that amount I would be totally buzzing or sleeping.
You are using sinemet to treat the psychiatric effects of PD which is novel. I wonder if there is anything better for her neuro psych problems. Must say I have never heard that a low dose of sinemet causes the voices to appear I wonder if there is some other explanation. Voices are hallucinations, auditory hallucinations.
so sorry for both you and your mpm~ i am offering some suggestions. i agree that she is on too much sinemet.. can you look for a different practitioner? doesnt have to be a neurologist. possibly a nurse ptactitioner, someone who can support you on your search for what works best for mom. i use mannitol one tsp each morning, often in my coffee. have been using about one year. it has returned my sense of taste and smell it also calms me. try her on B1 capsules. i take 3 100's at 9 am and 2 l00's at 3pm. i am trying to go higher but it gives me diarrhea...so i am going slowly. i have recently been takng mucana puriens two capsules every morning, mucana extract, 400 mg mucana extract per capsule , 15% natural l dopa.per capsule.. i also wear a nicotine patch - the patch goves me energy and also calms me,i take parcopa 4 times a day with 1/2 pill of entacapone . the entacapone makes the parcopa extend to 6 hours between doses with the help of vitamin Bl ans mucana. i also use cbd oil two imes a day. for me, taking less sinemet is working better. you can buy all but the sinemet on amazon - and its not expensive............ you can buy sinemet from a site like "drugs from India..............as far as the nicotine patch goes I use the middle dose. Good Luck
If she is hallucinating I would look for evidence of a hidden infection. You said she was normal until the addition of opicapone. I do not know what this is. Is it a COMT inhibitor like entacapone? If so then it would be making a whole lot more sinemet available than before which might give unwanted effects. It can also result in very bad 'runs' which could become very dehydrating which could also lead to hallucinations. I am not with your need to increase sinemet that drastically, as maybe the problem is not that she needs more, but that her brain is losing receptors to uptake the dopamine, and maybe also to metabolise the levodopa. So anything that will help get more to her brain will help, it can only use what it is capable of using the rest will create unwanted effects elsewhere in the body. These can include some very parkinsonian symptoms. So I have to ask how her sinamet is being administered, is she drinking plenty with it, could anything be preventing it from being absorbed? Is she taking it right after protein intake, liquid or solid? You need to look at all these things, but I really would take a look at the question of infection. UTI especially can bring on hallucination, but also the less obvious, such as dental infections and lingering chest infection. If you are somewhere that has a unit that can evaluate her response to medication I would advise a referral for that, and if she has district nurse support please ask among them whether they have seen similar. Another great resource is the parkinsons nurses, if she doesn'tt have one try and get a referral for that too. Sinemet can have an effect on the mind but unless withdrawn abruptly or overdosed on I have not heard of hallucinations being among them. Best of luck trying to find some way to help her.
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