First off, if you've seen one case of Parkinson's, you've seen one case of Parkinson's. In my wife's case,she experienced overdosing on Sinemet. She started by taking Mirapex when she was first diagnosed about 5 years ago. Even a small dosage was putting her to sleep for long periods of time. Her neurologist put her on Sinemet instead. He said he was a participant in the early research of this drug and used the term "gold standard" to describe its effectiveness. I've heard the phrase "gold standard" used constantly regarding this drug. Well, for 4.5 years this drug worked beautifully. My wife was taking 5 dosages of 50/200 per day. I've read that the carbodopa to levodopa ratio should be 1:4. In any case, after 4.5 years on the drug, my wife began experiencing symptoms which were alarming to me. Blurred vision, a host of cognitive issues, hallucinations, anxiety, depression. I thought these symptoms were due to the diseases progression. I never thought it was due to the Sinemet. But I began doing my diligence regarding this drug. Like many drugs, Sinemet has a threshold that is reached by those taking it. This threshold may be reached in two years, 5 years, 20 years. There seems to be no rhyme Jordan reason to when that threshold will be reached. What happens then is the medicine causes so much dopamine to be created that the brain cannot use it all. This excess dopamine finds its way into parts if your brain that control all sorts of things. What we did in conjunction with the neurologist was lessen the dosage of sinemet, so that instead of 35 pills a week, she went down to taking 14 pills (2 per day) a week. Very quickly, her horrible side effects went away. My wife came back to me! Now I know that each patient's experience will be different. But don't discount the notion that one's symptoms may be caused by an over dosage of a medicine that was previously working fine. And that's my sermon for today!
Too much Sinemet: First off, if you've seen... - Cure Parkinson's
Too much Sinemet
Amen.
Did your doctor prescribe at the time of diagnosis and if so, what was the starting dose?
She started at 50/200, 3xdaily.
I'm glad you finally figured out she was taking too much. It's too bad that so many people have to learn the hard way that some doctors are over enthusiastic about pharmaceuticals.
Starting out at 50/200, 3xdaily seems like a lot to start out with. My neurologist started me out with 25/100, 3xdaily, and only after several years, and neurological retesting did he up my medicine. Of course, I realize each PWP is different, and I don’t have any right to criticize a doctor, because I am not a trained Physician. Your analysis does make a lot of sense, and I’ve had to cut back on other medicines, due to side effects before. I’m glad that the problem was found, and medicine dosage adjusted, and that your wife is doing much better now! Thanks for sharing that valuable information with this group!
"What happens then is the medicine causes so much dopamine to be created that the brain cannot use it all. This excess dopamine finds its way into parts of your brain that control all sorts of things."
Do you have a reference for that?
Conventional thinking seems to be that, over time, the reduced number of dopamine neurons results in LESS dopamine being produced.
Spoke to our neurologist about this. The issue with my wife was that she was simply taking too much levidopa that her brain could not assimilate. This excess dopamine was causing her issues. It wasn't till we decreased the
Usage by 60% that these issues dissipated.
"too much levodopa that her brain could not assimilate"
Okay. I've read that when there is too much levodopa, the reduced number of dopamine neurons cannot handle all the levodopa, and so some of the excess levodopa is taken up by other (e.g. serotonin) neurons.
How long ago did the reduction from 1000 mg/day to 400 mg/day occur? I ask this because I've read that, when the levodopa dosage is changed, there is both a short duration response (SDR), and a long duration response (LDR). The SDR is governed by the 90 minute half-life of levodopa, and so is observed very soon after the change. The LDR usually occurs 2 weeks or more after the change in levodopa dosage.
If the change from 1000 to 400 occurred recently, watch out for the LDR.
Another thing that is interesting is why there was no dyskinesia, when she seems to have been taking a great deal more levodopa than she appears to need?
This might indicate that she still has a lot of dopamine neurons, which lends support to the idea that she was simply (massively?) over-dosed on levodopa.
I have early onset Pd, and I have found sinemet, very easy to over use, my Rx was 25 mg every 4hrs, but a half of that every 3 hrs, brought me to almost symptom free, and adding a controlled-release version for The Last dose well let me sleep 8 hours without getting up to take meds
What were her main symptoms ie tremor or non motor etc. Did none of the symptoms worsen after she cut back on the dose. I think I am having too much sinemet as dyskinsia is setting in but not sure whether to cut back
Curious
We're the 14 pills a week 25/100's?
I am not surprised by this, I’ve had some of the same experience. It’s important to remember that the levodopa gets across the blood brain barrier but then is just distributed across the brain blindly.
@Roborn1 What about your wife’s tremors - did lowering her C/L dosage have any sort of adverse effect on her tremors (if any)?
I find your situation very interesting as I am currently going threw this with my husband. He has been on 25/100, 2 pills three times a day for five years. He had what I consider minor symptoms such as drooling, difficulty standing after sitting , difficulty turning in bed, but then hallucinations crept in and have been with him since last summer. We started to reduce his meds and got down to three then he developed Capgras Syndrome! For those not aware of that, he thought I was an imposter of his wife! So the neurologist went back up. Still has hallucinations and the neurologist tried this again. This time he got down to 3.5 but his walking started to slow down. Difficulty walking so I started him back up 1/2 pill every two weeks. We are back to 4.5 currently but still has hallucinations. We see the GP tomorrow and I’m going to be talking about B1 and other homeopathic suggestions I would like to try not that he may comment on that.
I appreciate you sharing your experience. I find this sight very helpful!
You might consider having him take Nuplazid for the hallucinations. My wife had them to the point where she was seeing a dozen or so images in our home every day. They weren't threatening to her, but they were there. She also did not recognize me as her husband at times. Well, after about 3 weeks of taking one tablet of 34 mg. Of Nuplazid daily, the hallucinations went away. Couple that with her reduction of Sinemet and she's doing 100% better. There are some scary stories about people who've died taking Nuplazid, but that is not the case according to our neurologist. She's never had any side effects from Nuplazid.
I have no personal experience with Nuplazid, but I think that anyone who is considering that drug for oneself or a loved one should proceed with much caution and first read everything they can get their hands on. For example, park-bear's post raises a lot of red flags: healthunlocked.com/parkinso...
A broad view is also provided by this CNN article: edition.cnn.com/2018/04/09/...
A search in this community turned up these 20 posts (among which are the above two links), which may repay examination: healthunlocked.com/parkinso...
I’ve asked our neurologist about that and other anti-psychotic drugs and he indicated he would not prescribe them as they could cause other side effects and don’t do well with Sinemet!
Just an update to our previous convo. Saw our GP today and he suggested my husband try seroquel. Going to start on low dose of 12.5 mg. Hope all goes well!
Before my wife went on Nuplazid, she went on Seroquil. This was the drug they used before Nuplazid came along. She had a horrible reaction to it...made her zombie. Literally just about passed out on her feet. Perhaps it was the combo of medicines she was taking at the time. We quickly took her off that and went to Nuplazid. Hope your experience is different. Everyone's is. By the way, not enough is said on these threads for what PD caregivers go through. It's worth some future discussion.
Hopefully that doesn’t happen to him! It’s a very low dose of 12.5. I’ve read the side effects and that’s scary! I was thinking that low of a dose may not do anything! Well he wants to try it so today we will see! True on the caregiver end of things!! Thanks for listening and offering your experience in this!!
Well you were right! We tried the Seroquel today, 12.5 mg a half dose of 25 mg pill. That was at noon today. He slept most of the afternoon, came to the table for supper and fell asleep again. No wonder it works on hallucinations! He’s never awake to see anything so guess that option is off the table if that’s the trade off!!
And how is your wife now? How is her mobility, her speech, her mental side? Could you say, see that she does not have PD anymore?
My husband who has been diagnosed with PD in 2011 is also in Sinemet and when he is off i.e. the given dose is diminishing, he is begging for it, because he knows that even though Sinemet is not the solution, it helps him to have few moments during the day when
he can stay that he is alive. It is crazy, but true. Unfortunately, and let's be realistic, this illness is going to kill sooner, or later.
I question is it ethical, humane to prolong life of those we call loved ones?
Your reply, comments, thoughts will be greatly appreciated.
Elza J. elzbruss@gmail.com
My wife is doing great. Her cognition which had been drastically affected by the Sinemet overdosaging has come back dramatically. Her blurred vision which affected her close up reading has been improved with prismatic eyeglasses. PD patients often have trouble with both eyes focusing on reading material. There's a lag in signals being processed by the optic nerve. Prism glasses compensate for that. The result is that my wife is reading menus, newspapers, books without a problem. My hesitation in joining discussion groups is that no two cases of PD are alike. I don't want someone to be influenced by my support of Nuplazid say, which works for my wife, but might not work for you. It was my experience that something had to be done to get rid of these hallucinations. It was causing her great anxiety, much angst, and was threatening to overshadow anything else she was dealing with regarding the Parkinson's. This drug, Nuplazid, which came on the market in 2016 seems to have done the trick. For us it was a game changer. For others, who knows?
Only my opinion but I find your outlook to be very dismal. I will try everything possible to help my loved one in any way and find most people on this site to helpful and encouraging. I do not feel that by doing so, is in any way in-humane!
Can see walk and talk and move ok on lesser amount?
Maybe I misunderstand how Sinemet works
does it stimulate my body's ability to create natural dopamine?
or does it provide a substitute to replace what I don't make any more?
I would be interested in your comments on this:
pdrecovery.org/stuck-on-pause/
After 20 years experience they claim reversal of symptoms
but only for PWPs who have taken dopamine replacement drugs for less than 3 weeks
they seem to claim dopamine replacement drugs let my dopamine making process get lazy and not bother to fix itself using natural healing process
I was diagnosed 10 yrs ago
daily prescribed 4-25/100 Sinemet, seigeline, Azilect
I started mucana puriens
eliminated seigeline and azilect
also use HarleSin cannabis
dopedirectory.com/marijuana...
Have not noticed side effects
tried cannabis only
tried Sinemet only
I need both
Love > fear
So do you still take mucana puriens along with Sinemet?
yes
I reduced SM
replaced with MP
also taking B1 and magnesium
1g ea daily
What was your dose of mucana?
200 mg/day
New information on sinemet
Twitches between sinemet doses
Sinemet induced dementia
5-HTP in patients not taking Sinemet can worsen symptoms of PD
