My mother has huge side effects from Madopar (LevoDopa), since almost a year she becomes psychotic when she takes it. In combination with the dyskinesia which she already has increasingly since a few years, this is a really horrible combination. She also has dementia since about a year, all occured after the COVID vaccines. Has anyone experience with this? I consulted several neurologists, all say Levodopa is the medication with the fewest side effects and nothing else is possible..We already reduced the dose without success. Sometimes it’s better when she doesn’t take it at all, and supplements like Acetyl Tyrosin help, but the off phases and Tremor sometimes becomes unbearable for her. Is there anything you can give excpet L-Dopa to improve the Parkinson symptoms? Mucuna sometimes helps a little but when it’s dosed too high, it makes dyskinesias and psychosis like madopar. Neurologist recommend Quetiapin and rivastigmin but this didn’t improve the side effects.
Has anyone experience with a smiliar situation or an idea what could help? Thank you for any tipps.
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Just wanted to let you know that Quetiapine and Levodopa should not be prescribed together:
drugs. com
Interactions between your drugs
Major
levodopa QUEtiapine
Applies to: levodopa, quetiapine
QUEtiapine may reduce the effectiveness of levodopa. In addition, using these medications together may increase the risk and/or severity of side effects like drowsiness, low blood pressure, dizziness, and lightheadedness. These effects may occur with either medication alone and are most likely to be seen at the beginning of treatment, following a dose increase, or when treatment is restarted after an interruption. Let your doctor know if you develop these symptoms and they do not go away after a few days or they become troublesome
Hello, thank you for your reply. Yes, I already thought so, since Quetiapin is also inhibiting dopamine, so that´s why I don´t want to give it to here, but this is what guidelines and neurologists recommend first in psychosis and parkinson, nevertheless.
i started on madopar & it gave me severe diahorrea . I was going to suggest mucana but I see u have already tried it. The dyskenska is caused by too high a dose so u may need to try varying the dose. I now take 2 x mucana & 1/2 Jonson which is an alternative to madopar. For me it works much better.
I’ve head many say things got worse after vaccine.
I hope u can find something to help even a diff brand of l dopa
Thank you, this is interesting. My mother also has recurrent diarrhea mixed with obstipation and I was not sure if this could be from madopar. She has been taking madopar for many years and only since about 1 year she has this side effects. The dose was already reduced from 200mg madopar to 50mg per dose, but she still has dyskenisia and psychosis.
What is Jonson? I couldn´t find it. And what mucuna preparation dou you take/ dosage? Thank you!
I actually take 1 mucana & 1/2 kinson by 4 times daily.
I was taking madopar for a while before diahorrea started. I mentioned to doctor and neurologist and finally naturopath suggested that might be causing it so I stopped madopar and within a couple of days it stopped after 3 yrs of diahorrea.
I also tried sinemet which is another levadopa but that gave me gut pain.
There’s a lot of trial and error needed to find right balance
my wife is age 74. Diagnosed in 2015 and began taking Carbidopa/levodopa. Two years ago she started having psychosis with hallucinations and delusions so we tried several anti-psychotics, quetiapine being one, and nothing helping, then earlier this year I asked her movement disorder specialist if we could try Clozapine and that’s what has finally worked. They don’t like to prescribe this because you have to have blood work done weekly for the first three to six months to make sure your white blood cell count is in range, but it is rare that it won’t be. I will not get into all the details of Clozapine here, just research it yourself. There is a lot to know about it. It has a good record for eliminating/reducing psychosis and does not interfere with the Levodopa. Also important is eating a well balanced diet and eliminating refined sugars, exercising regularly, especially walking. and have been doing the high dose B-1 therapy(research this as well). It hasn’t been easy, to say the least, but with all these elements in place she is doing much better now and seems to be reducing the progression so don’t ever give up trying to find what works no matter how hard it gets. She will need a loving, dedicated caregiver to make this happen. Lots of prayers and support of family and friends helps tremendously.
Thank you for your message. My mother ist 67, she was diagnosed 2007 and was really stable for many years and now since aobut a year she ist a nursing case and now living with me. It is very difficult to find a caregiver in Austria..
Clozapin is also what neurologist suggest when quetiapin doesn`t work but I didn`t want to try it because of the side effects but maybe its worth a try..I also tried Benfotiamine but because my mother has recurrent diarrhoe I am now cautious with supplements but I think I will try again. Thank you, yes not giving up is important, I am still trying everything to help my mother, the next thing will be neuromodulation in June.
I will reply only on dyskenisia part. It is reported based on research that about 70 % people after 5 to 6 years in Parkinson are liable to get dyskenisia. Carbidopa / Levadopa medication in Small doses at regular intervals might help with reduction in dyskenisia. Unfortunately small doses in many cases may not work at all. Hence it is a tough call. Amantadine 100 mg is prescribed to reduce dyskenisia. However it will not work in everybody. If it works fine , if not back to square one. Since Dyskenisia is caused by medication , stopping medication is not the solution because patient will suffer. DBS is the route for reduction in medication . Unfortunately in my wife's case even after DBS ,she is dyskenitic as soon as medication kicks. Since it is not violent and is more like she is dancing with swaying of the body, we have accepted it as part of life. You may not like my reply but I have tried and tried and tried but no success so far.
Thank you, unfortunately Amantadin is not an option with dementia. Next thing we will try is neuromodulation techniques (transcranial direct stimulation), hopefully this helps.
Is it the long lasting madipar or instant release? We found the white tablet instant one works best and it is easily reduced by cutting a bit off it so easier than the capsules.
My husband was having severe side effects from too much dopamine but is doing very well now once we reduced it and added a half dose between 4 hourly doses. He also had a low dose of 0.5 mg Clonazepam cut into quarters and spread over the day and it has been the single most useful pharmaceutical he has tried for reducing symptoms from caused by anxiety.
We use the instant release in tablet and after meals soluble tablets of madopar. We also tried the CR a few months ago but the effect was unpredictable, so sometimes it worked, and sometimes not at all, also it seemed to cumulate and worked many hours later making more side effects. Thank you
The long life madopar made him psychotic, suicidal and very weak. He became almost completely disabled within a couple of weeks of starting it. He couldn’t even pee by himself or get onto a bed at night without help. At night he was sundowning- pacing around and confused and trying to escape so I had to get deadlocks on the doors to lock him in at night. They said he had dementia and was progressing.
Now on the instant at a lower dose he is so much better and back to doing everything by himself and can even get under the covers of the bed by himself which he hasn’t been able to do for a few years. His night time antics disappeared and “dementia” has gone.
All the new symptoms were entirely drug induced.
Are you able to take her off the ER madopar? Is she on the 50/12.5 mg madopar white tablet now? If so that is quite a low dose already. How often does she take it? My husband has them 3 hourly but has an extra half at 6am if he wakes early, then another 1/2 between his whole 8 and 11, and 2 and 5 am doses.
This is working well for him with the clonazapam.
“Clonazepam is a benzodiazepine drug used for the acute treatment of panic disorder, epilepsy, and nonconvulsive status epilepticus. The drug also has many off-label indications, including restless leg syndrome, acute mania, insomnia, and tardive dyskinesia.”
Wow, great that dementia has gone after you changed to instant lower dose and that your husband is doing so much better now. Thats beautiful to read.
In Austria the "normal" Madopar is a pink tablet, but it is no extended release, and there is also a soluble tablet which is supposed to work quicker, those are the two she ist taking now, no more CR/ER. Yes, she takes only 50/12,5 per dose and still she has those massive side effects, because of that we give it to her as rarely as possible, depending on how urgent she needs ist (when tremor gets to strong). Once she takes it, the off phases afterwards are unbearable for her, then she needs it about every 2 hours until she goes to bed but usually she takes not more than 3 doses per day. After she sleeps she is doing much better, I was wondering about that, but neurologist say sleep benefit is common in Parkinsons..
Interesting that your husband is doing so well with clonazepam. We avoided benzodiazepines bedause of dementia but maybe we should try but my mother has no anxiety or panic attacs but maye it would help for the tremor or dyskinesia?
I think at the very low dose my husband uses it doesn’t have a severe effects, it just takes the edge off his anxiety. He plays A grade bridge and no sign of any mental deterioration. On the other hand excess levodopa, and SSRIs certainly made him manic and caused sun downing which they told me was dementia. I do wonder if the dementia they say is caused by some drugs is actually just a sign of too much.
My husband has always had most of the side effects of any medications he has had during the whole time I’ve known him. A genetic test he had says his liver doesn’t process some pharmaceuticals as fast as normal people . I think that’s the problem, they build up.
If she is reacting strongly to the 50/12.5 tablets try cutting them in half and see if it’s better or worse. She might need to take the other half 2 hours later.
If you try clonazapam cut it up into quarters and start slowly at 1/4 per day. It builds up slowly over a week or more in the blood so might take a while to notice a difference. It’s not like the levodopa that gets used up fast. Only add another piece after a week or so spaced about 12 hours. If she is a bit better stay on that dose a while and let it settle in. Change will be gradual, not instant if it works like it does on hubby. Watch for any signs of confusion especially at night. That might mean it’s too much. If that amount is too much you can ask the doctor to prescribe an even lower dose that can be made by a compounding pharmacy into capsules.
When I was trying to get hubby off SSRIs I had it made up at 10% of the original dose into capsules, then I used jewellers scales to reduce it further and put it into capsules. The last 5% was the hardest to get off. I think for him he needs a tiny fraction of a normal dose to get a good effect, any more causes side effects. Not everyone is the same.
We already tried half of 50, so 25, still the same side effects concerning psychosis, maybe a bit less dyskinesia. The thing ist, in many years she did't have those side effects but after covid vacc. everything changed..
Thank you, the book sounds interesting. I gave my mother befotiamine (also in combination with alpha lipoic acid from Iherb) but because she has recurrent diarrhea, I am cautious with supplements but I will try again.
Thank you, the book sounds interesting. I gave my mother befotiamine (also in combination with alpha lipoic acid from Iherb) but because she has recurrent diarrhea, I am cautious with supplements but I will try again.
Figuring out the dose is the hardest thing. That's is why reading the book is crucial. It's all about finding "the sweet spot" for each individual as the amount and the frequency is never the same for everyone.
My friend is responding fairly well to sublingual B1. 1 pill twice a week (Monday and Thursday). This is why it is very important to read the book as it pinpoints the importance of dose, frequency etc....
Too much of B1, and the symptoms get worse... Not enough and there is no improvement.
I encourage you to get the book and read it. It is a fast read and it will help you a great deal. They also have a private Facebook group that has a lot of information from people who are using this therapy.
btw it is easy to blame vaccines but it is possible she might have developed this just as a progression or because she caught some virus or another. I think it is impossible to tell as you can’t separate possible causes.
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HDT & TTFD–In my case, HBP was a return of symptoms and not a side-effect of TTFD.
Newbie would like advise on side effect management please.
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