Overmedication while cutting Sinemet?
 

So my mother was diagnosed some years ago with PD. Her only symptom was perhaps walking slowly. She was about 77. Her neuro put her on 200mg/day of Sinemet about 2 years ago. She is now 80. During that time she seemed to have very low energy and often felt sleepy immediately after a dose. She slept much of the day and night, always feeling tired. Not sure how much positive effect the Sinemet offered her walking since she still walked somewhat slowly.

FFW to April 2012. Her neuro, without much reason bumps her dose to 300mg/day. Then within 2 weeks of that, her sleeping starts to get interupted overnight, she gets pain in her arms, she starts to feel like her balance is worse, her anxiety increases, etc. She now gets an occassional mild tremor/dyskenesia (not sure med induced or not).

Her neuro told her a few weeks ago to cut her meds by 50% reducing by 50mg/week over 3 weeks.

Within the third week of that process she started to have serious issues with sleeping and feeling lousy. I did some research and I then found the book Once Upon A Pill: Patient Experiences With Dopamine-enhancing Drugs and Supplements. by Janice Walton-Hadlock.

I was shocked. I have read about 400 pages so far and it concerns me that the Sinemet needs to be reduced at the right speed, not too slow or too fast. If too fast, you risk death (I forget the name of the issue here), and too slow and you risk chronic addiction, according to Janice, as your endogenous dopamine levels rise in response to cutting your meds, and combined with the DED overshoot the "on" zone into the dangerous zone, causing brain damage.

We just met with my mom's neuro who agreed (DED=dopamine enhancing drug):
- DEDs effects can take longer to clear from the brain than from the bloodstream (hence the bloodstream halflife is only so useful)
- DED effects can take some unknown amount of weeks to clear from the brain
- DEDs can result in overmedication
- the brain can kick in endogenous dopamine once the DED is cleared from the brain

Where she did not agree is that by cutting to a lower level of DED dosage, and staying there can result in overmedication as the brain starts to create endogenous dopamine.

Maybe I missed something in the book or elsewhere but why would the body's endogenous dopamine creation fine tune itself at a lower usage? Won't you always have overshoots and undershoots?

My problem is that my mother doesn't seem to have ons/offs in direct response to meds. She gets tired right after Sinemet doses (taken breakfast, lunch and dinner) and then has trouble needing to urinate all night that can keep interfere with sleep. Not really any shaking for example.

There is another neurological problem called normal pressure hydrocephalus... which can mimic PD and Alzheimer's.

It presents with a slow, shuffling gate, and incontinence.

Please read up on this... as it is very very different from PD, but has some similar symptoms.

http://www.nlm.nih.gov/medlineplus/e...cle/000752.htm

You can google it further for more information.

Your post
 

Is a good one which illustrates many of the vagaries of being saddled with an "unsure" PD dx. pD can have totally different symptoms in the elderly, because physical and mental "co-morbid" factors are seen to occur more often.
I wishi could give you more details of what my opinions and suggestions would be, based on reading over many years, however, it is dangerous to "play doctor"', even though our opinions are often based on personal familiarity, something which can be superior to just trying to guess about conditions which we have very title real knowledge of. I stay clear of neurologists, simply cause I have been consistently mislead by their ignorance of a "" picture of what is really happening in my unique disease process". I don't blame them, they are highly trained, but it is the odd one who possesses anything else but book learning, and in seeing thousands of PWP, rarely can guess exactly how to treat this multi faceted syndrome condition we know as "Parkinsonism". try to learn all you can about PD, and then you will be an invaluable partner in your mothers treatment.

Sinemet can give sleepiness when kicking in. I would not call it an 'off' but more of a wearing on or off phenomena.

Sinemet can actually cause increased urination.

Sinemet at night can make a person wakeful.

Dopamine replacement is tricky and difficult to manage and very individual.
I guess you are finding out just how true this is.

I would second others in saying that good diagnosis is really important. No one who does not need it should be on these drugs.

There is a tendency for doctors to tinker with levels of medication because really what else have they to do?

The patient is the one who usually has to manage to find the tightrope path of dosage that works for them, by trial and error. This can take a long time. In an elderly person this is difficult, especially as time becomes more precious.

I think you have got some of the aspects of what these drugs do covered, in that you understand that some of what you are seeing is side effect, and some is your mothers condition. Having lowered my dose in the past, I would say that the schedule that your doctor has given is optimistic, and slower would be better, but this is only my personal experience.

You need to work with your mother on this to get her to as comfortable place as possible. That is the best that can be said. Use the doctors instructions as guidelines, but back off if she is having a worse day and go a little slower. She has an older, and therefore more fragile brain.

Best of all get another opinion, the best you can find. And if possible document what you are seeing. If your mother can do this too, it might also be useful.

She could possibly have an age related parkinsonism rather than IPD?

Good luck with finding a way to resolve these issues.

Thanks folks. I don't think my mother's memory is that bad. So I am not sure. She does have a face somewhat expressionless and anxiety, but again I assume all these things could be the drug. She has had a handful of times since the drug decrease a slight tremor. I'm just not sure. Going to seek out a naturopath for another opinion diagnosis. However I understand that naturopaths can't comment on prescriptions either - so unless you find a neurologist who agrees that your dosage is wrong or dangerous (probably a rare neuro), I'm not sure what you can do.

Do others agree that you can lower the Sinemet dosage too slowly, causing potential brain damage and/or addiction?

Nph
 

I second MrsD's recommendation: If this were my mom, I would have her evaluated for normal pressure hydrocephalus NPH). her internist or neurologist can order the testing (I think a CT scan is used to rule out the possibility of NPH; if CT positive, then an MRI is done). madelyn

I see what I can do about getting one of those tests.

Apologies for my confusing posts. My main issue is trying to understand if the issue in the Once Upon a Pill book is one I should be concerned about. That is making sure my mother is not reducing her meds too quickly or too slowly. The Once Upon a Pill book seemed to suggest a 10 week recovery period after each dose decrease (in other words the dosage decrease is followed by additional complications and withdrawal symptoms, and starts to stabilize at 10 weeks with likely improvements at that point). Her neuro seemed to think the time period varies widely and can only be guessed at. The neuro thought 10 weeks seemed reasonable.

Once we hit 10 weeks and if she does not feel better I guess we will see at that point. Her mental functions have glimpses of being much improved. It's her weakness and energy that is at issue currently but by all indications that should improve.

My concern is the issue in the book, where the book says you may need to lower you dosage more quickly once your start to feel good (during the dosage decrease process) because its an indication that the dopamine levels are rising and her current dosage of Sinemet may start to be too much, even though it is less than the dosage your body had previously been accustomed to. I.e. if your endogenous dopamine starts to recover while your Sinemet dosage stays the same, you may be overmedicated again.

For example if someone is on 1000mg/day Sinemet and overmedicated, and cuts that daily dosage by 10%, she may have initial withdrawal symptoms and then start to feel good again. But the feeling good may just be a harbinger that the body is adjusting to 900mg. This is just like alcholol tolerance where if you are used to 5 beers in an hour, one beer is nothing; but to someone who doesn't drink one beer may be strong. The issue is if you are used to 10 beers/day with negative effects and cut to 5 for some long period of time, your body may recalibrate over time so even 5 is too much? Does this happen? Her neuro seemed to think that does not happen.

I guess they key here, if I am understand correctly, is whether your body is starting to recover or not? What constitutes recovery?

i'd stop looking at the pdrecovery site and take your neuro's advice.
pdrecovery has never been proven, is the theory of an accupuncturist and i've read many accounts of people who stopped meds and tried the recommended massage/accupuncture and just were miserable. they have parkinson's

if you want to follow that philosophy and possibly risk you mother's health, here's a website
http://health.groups.yahoo.com/group/PDrecoverers/

Soccertese is giving good advice.
 

I tend to agree with Soccertese. I started replying to your other posts several times, and found I could not, because really what you need to be doing is following the advice of a really experienced MDS rather than this e-book.

I have only ever been on sinemet, have an on/off diagnosis like many people do, because PD is hard to diagnose, and am sinemet responsive. I did not find the e-book helpful.

What I did find helpful was the advice of people in this forum, who told me what to expect of medication, and taught me how similar the side effects are to the symptoms of PD, and how to look after myself.

My personal advice to you is either take the neuros advice and give your mom time to settle, because changes do take time, sometimes quite a long time - there are no quick fixes - or get a second opinion from someone experienced.

There are other ways to go, but they are not for the faint-hearted, or in my opinion, the really elderly, as though the are also replacing dopa, they very much do that by trial and error, and take a lot of time.

There is plenty to say that alternatives are helpful, in terms of creating more ease with ones own body, or keeping it moving to help mobility. I have seen little to say that alternatives make a difference to the core problem. Keeping your mom as active as possible is a good way to go, the one constant that I hear is that people improve if they are more mobile. Even a little more mobile helps.

Your real question is does your mom have PD or not. The people who can ascertain that are neurologists, not acupuncturists. On the other hand if you are looking to help your mom feel more comfortable an acupuncturist could possibly be helpful. Reading this e-book is not really an answer or a help. I have to say I went through all the same kind of questions as you after reading it, simply put it made me feel very scared and anxious, without offering me any solutions.

I wish you the best in helping your mom have a better quality of life.

So do we have a bad neuro then? We are dealing with the PA (the MD is on sick leave). Before the MD left, he for no reason (that we can tell from his notes, and my mother cannot recall a reason, and the PA doesn't know) bumped up her Sinemet by 33%. Within two weeks after her increase, she started having arm pain, new problems sleeping, etc.

During multiple visits and back and forth and many suffering months, the neuro discounted that the Sinemet was to blame and looked at diet, did new blood tests, prescribed sleeping pills, prescribed amantadine, etc. All of this failed to do anything about the new symptoms and the amantadine made things worse. Then when she had no other option, and at my insistence to do *something* to lower the meds, she ordered to reduce dosage at 50% over 3 weeks.

I asked the neuro about this rate, because the book that you say I should ignore would have me believe this is a very fast rate and potentially dangerous. The PA gave us no indication of any problems to be aware of or any dangers as a result of lowering the medication. The book indicates that people coming off the meds will experience withdrawal, fatigue, new balance issues, etc. The neuro PA did not advise any of this. So I don't care if the rest of the book is nonsense, it seemed to very descriptive of what my mother is experiencing in that regard. When I said that my mother was feeling really awful, and had some very scary moments coming off the drug, the PA just implied that you need to be aggressive to see results so you know what to do. This is always given as justification post facto as necessary to help them formulate their expert opinion. It's a bit scary. What else will they not tell us that will nearly or otherwise potentially kill my mother so that they can continue their fact finding? I think my mom and I will stick with her slow walk thank you.

Sorry to vent a bit. I'm sure these drugs can be beneficial. But I'm not sure they are doing much good for my mom.

That sounds like a lot of changes....
 

I would get a second opinion, and in the meantime let her settle at the dose she is currently on. It takes time.

Sleeping problems are quite usual with PD and with taking sinemet.

I am not a medical advisor, I cannot advise on medication, neither can anyone else, they can only tell you what their experience is.

My opinion is too much chopping and changing won't help. We have fragile brains, and every time you make a change the brain has to adjust to another set of factors, another imbalance between the fine tightrope our neurotransmitters give us so we can have something like 'normal' living.

The book does describe things that happen to all of us when we make medication changes. As patients we struggle with them, like your mom is doing. We go home with the instructions and try to make sense of what happens to us, and we share experiences, and often they are helpful and informative, and get us by till we see our doctors again.

The theory of the book is scary, and while some have claimed that it works for them, I have yet to meet anyone who has followed this protocol and got off sinemet. I am not claiming that it does not happen, but given that we come across a lot of other PwP, and people who have been re-diagnosed, it is odd not to encounter anyone in the real world who has done this.

You sound like you are determined to take her off sinemet. You have asked a lot of questions, these really need to go to an MDS, not anyone else.

I am sorry I posted now. I did so because you sound so distressed by her condition, and I gave the best advice I can.

Because you want to do this. To reduce her meds.
But I cannot validate your decision to do so.

It could be something else other than PD. No one here can tell you whether it is or it is not. You say she is not doing well, and clearly you are very concerned for her.

The only thing I can add is that if she is still having pains in her arms, and if you have not already done so, you should have her GP check her for angina.

In fact get her to have a good general checkup too if she has not had one recently, because not everything is PD-related.

Let me be clear. I have no dog in this race, i.e. I don't know what we are going to do about her long term use or non-use of Sinemet. I am responding to my mother's reaction to increased dosage and later reduction of Sinemet. She's on lots of other meds that I have no reason to be suspicious of. In fact its the neuro who was suggesting taking her off Sinemet entirely, "to see what the effect would be", presumably so we could learn more about her condition. I lobbied to slow down this process and try some months at her current dosage. But I was concerned this may not be good if my mother "starts to recover", as the book states.

She has had general checkups. Her doctor doesn't really like to comment on these matters, and defers to the neuro. He just said that all his PD patients on these meds are sleepy all the time and have trouble maintaining their weight. Which describes my mother in the past few months.

At this point I'm not sure what the best scenario may be, which is why I was looking for help with people and practioners who have pursued reduction of Sinemet.

Hey there,

It is more than okay. Your mom really needs you, and we all here know it is beyond frustrating when doctors don't seem to hear what you are saying. In their defense, they are just doing what they are trained to do, which is to develop a repertoire of common treatment approaches and rotely apply them in a generic way.

After reading your last post on the PA and neuro seeming clueless about weaning off Sinemet too suddenly, frankly, I would second guess any medicine directive she gave. Please make sure you consult with another doctor. I am not sure if someone mentioned Neuroleptic Malignant Syndrome which can occur if drugs are stopped too abruptly and it can be life threatening. ER docs especially do no this.

As for the recovery guide, I think you are spot on. She must stop taking this very slowly like over the course of weeks or months. I have experience with stopping 2 pd meds over 7 days (I found out I was pregnant.) First I had generic but uncomfortable withdrawal symptoms then I went on a steady decline where I was like your mom and the bed covers. I would go totally akinetic at night and slept in bed like a turtle; it was terrifying because I just could not move from the neck down. I didn't remain like this but came to a point where I wondered if I could have my child without ending severely disabled. My (former) neuro could not explain my reaction other than as symptom rebound from meds.

Hmmm...I think that some of us (sounds like your mom too) are super sensitive to PD drugss. Based on what I learned from my experience is that PD recovery has it right on how to properly stop levodopa. More recently I dropped down 4 mg of an adjunct med over the course of two months it was done by basically following my doc's schedule but more based on how I felt. Say he called for me to drop 1/2 dose of one med over the course of 3 days if I ended up with any brain fog or other unpleasant withdrawal, I stopped dosing down right there. I give it three days minimum or longer at that level until I feel "normal" and then try to start reducing again. I have consulted with two docs who say this is sound.

You are on the right track, but don't do this without some sort of green light from a doctor or pharmacist. The doctor you have now will likely scoff at any alternative to the generic titration guides doled out to every PD patient. Speaking of...there is a pharmacist forum at the National Parkinson Foundation website. Mark is a great guy with lots of experience in all this as he himself has PD. http://forum.parkinson.org/index.php...he-pharmacist/

As for that sensitive period the book describes where we are to lower levodopa as our endogenous supply starts to kick in...I am not sure of how else to do that beyond what I have tried, but it sounds like reducing, plateau, comfort or homeostasis, then trying reduction again falls in line with what they are saying???

Hope this helps,

Laura

Oh, wanted to respond to your thought on trying your mom on a lesser dose for awhile. That is kind of built into it at the plateau phase. You would stop decreasing meds just at the threshold where she becomes too uncomfortable or too symptomatic. At that point where she levels out you could assess and see how she does and then you can note differences for a doctor.

I went from an 8 mg reduction in my agonist with no ill effect and was shocked to see that I actually felt better on less of it and some "symptoms" disappeared altogether. Worst part is I was not even aware I was over medicated until my GP told me she thought I had drug induced Bi-Polar Disorder.

Update us!

Laura,

Thanks so much for your kind post. What you describe as being "akinetic" and a brain fog sound very much like what my mom is experiencing right now. I wish the neuro had suggested reducing more slowly, knowing now what I know, but no going back now. It's been about 5 weeks since the first reduction and about 2 weeks since the last reduction, so I think we're still in early stages. She's seems a little more stable now than last week, just real, real weak and slow physically. Her mind though seems pretty sharp externally at times though she says she is in a fog. I have some more feelers out to various practitioners, will see what happens.

Just an update. We have an appointment tomorrow with Dr. Melissa Nirenberg in NYC/NYU - who has done peer reviewed studies (part funded by the PDF) specifically on PD drug induced addiction.

My mother has been doing better and better the past few weeks, though she does not say so. All her friends are commenting how much stronger and sharper she is. She still seems to have good and bad days. We shall see...

And another quick update. Dr. Nirenberg was very nice and her team did a good job I think in examining my mother's condition. Her thinking is my mother has Lewy Body disease. Still looking into this, but it seems to be the same thing as Lewy Body Dementia. It seems like the relationship to Parkinson's is sort of unclear, from a scientific perspective, though they do share many characteristics.

Glad to hear your mom is generally feeling better. Sounds like you are on the right track with a good neurologist too. I generally it sucks to hear any sort of neurodegenerative diagnosis, at least the doctors can get her the right treatment.