Preparing for off times

Just wondered how everyone prepares for off time when med is not due. I'm usually wearing off 1/2 -1 hr before Sinemet is due.. Just seen new neurologist and working on it but I'm almost up to my max in meds. I try not to watch the clock and meditate but would like to know what other people do,

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  • I just stay busy. Adjust your meds or try different ones Don,t let the so called limit on meds i take 2.5 times the "limit" of carbidopa levodopa without any bad side effects.

  • I did have a cardiac event and 10 day stay in hospital due to high doses of Sinemet . Now home and trying to work thru the anxiety that comes with wearing off. Doing better walking it off meditating. Just curious as to what other people do?

  • Annie11.

    Sorry to hear about your cardiac event! I have never heard of Sinemet being the cause. It lowers my blood pressure. How much were you on to cause this? I have terrible kick in time and wearing off lately. I just wait till it passes! Literally cannot plan anything. It is so debilitating!! I am afraid I have no answers as to how to deal with the wearing off.

  • I take C/L every 4 hours 24 hours a day. Keeps me even all the time am already on when i wake up.

  • My "off" times have greatly disappeared once my Neuro prescribed taking Amantadine - one in the morning and one at noon . . . I rarely have those off times . . . also, my R hand no longer shakes when I take it . . .

  • I'm wondering if rytary might be a better fit for you. Have you tried that yet? As you no doubt know it is a time release sinemet. I am still breaking my 25/100 sinemet pills in half and taking them at least every 2 hours because my neurologist doesn't seem to be very impressed with Rytary. Next time I see him I'm going to insist on at least giving it a try. Why not?

  • I haven't tried Rytary yet. My neurologist said I don't take enough sinemet to make it worthwhile or for it to work right or something. I need to ask him more about this. I'm still doing okay on my half a pill every 2 hours technique. I use my phone alarm app.

  • I take amantadine 2 100mg tabs 2x per day once in the am and at night. Do you think I would be better off (less shaky) during the day. If I take it in the am and in the afternoon and skip the bed time dose.

    I know ur not a neuro but would like your opinion

    Thanks

  • Thanks for the info

  • Sleepless

    From your post im not sure, are you taking 4 amantadine a day or 2 a day.

    Just to add to Hals comments Amantadine is known for causing sleep problems for some people. Thats why they have it prescribed morning and noon but not at night. Not a problem for everyone but very common .

    What other meds do you take?

  • I take 2 100mg tabs twice a day that a total of 4 per day. 2 in a the am and 2 at night.

    Other medications.

    Rytary- 3 tabs 3 times a day and requip 1 2mg tab 3 times per day 1 in the am, noon, pm. I also take clonozapam 2mg tab 1 tab at bed time. I also take mythephendate 15mg in the morning and 15mg afternoon for brain fog

  • What are you taking?

  • Not too diffeent sleepless (i wrote them all out then lost it) . I asked bcause i wondered if u were only on Amantadine. It seems a high dose you are on. The most i know of is people taking 3 a day.

  • Rytary uses a different way of controlling the release of the med. Rytary is a cap not a table.

  • If you qualify by having a lower income, you can get it subsidized by the pharma company that makes Rytary.

  • Annie, puddlejumper

    I have been in a similar quandry for a while now. My sinimet was lasting 2 or 21/2 hrss. My wearing off can be quick. I have wearing on (kick in time) with bad tremor which is even worse. Then i find im confused between symptoms and side effects and in an attempt to control my debilitating tremor can make things worse by overdosing. A vicious cycle.

    Recently things have improved somewhat. First l added an inhibitor - entacopone, then amantadine. It has taken weeks to adjust the doses to get maximun cover with minimum drugs. I nearly gave up a number of times.

    Entacopone can be taken in the combined levadopa drug stalevo but i take it separate and so have more control to build up slowly and titrate to best dose.

    (Actually just to confuse matters i have been changed to Tolcapone which is way more effective but requires regular blood testing and is not available in many countries. There is also the new once daily drug which is more effective than entacopone but not yet widely available)

    I think Amantadine has also helped with the worst of the wearing on problems. I was precribed 3 day but (after seeing little green men) take two day.

    I also take a long acting agonist which helps smooth out meds.

    From observtion of people i meet i would also consider tying a mix of short and long acting sinimet. It seems to help some people.

    Hope this makes sense and is helpful.

  • Thank you Hikoi, I will ask my neuro for CR Levocarb during the day. I take 200/50 levocarb CR at bedtime. Helps for approx 4-5 hrs kick in one hour or more! Nothing is perfect. Everything is trial and error!

  • Hikoi, Annie11

    Entacapone result was very minimal for me. My neuro told me that Levocarb wears off due to lack of storage in the brain. Have you heard of this? Some days are better, but seems to be worse lately.

    Hikoi, how is amantadine? How much do you take? Side effects? Hopefully bearable

  • Sorry i didnt reply sooner puddlejumper

    Yes thats my understanding about levcarb. In the early days we have enough neurons to store some ldopa but over time loose more and more and cant store any. So we have to take meds more frequently. When we get to this stage our meds may wear off in 2-3 hours.

    Entacopone works by prolonging the breakdown of dopamine. Yes its not dramatic for me it was about half an hour per dose. You could try the combined drug which is Stalevo but it may be expensive.

    Amantadine has helped alot in controlling my tremor and by doing that i have been able to get through the day with less off time. It can interfere with sleep so i take 2 not 3 and have them in the first part of the day. At three i had visual hallucinations as well. It can dry your mouth drop your blood pressure and make you feel nauseous. It did all those to me but then my body adjusted and its ok now. I always take them with food (avoid nausea) though which means at a different time from sinemet (avoid low bp).

    The neuro said Carb/lev long acting takes 2 hours to kick in. It seems to for me. And you can take entacopone with long acting meds so that may be worth a try sometime.

    How are you going now pj - any changes?

  • Thanks so much for your response Hikoi. I tried Stalevo and Entacopone but I developed anxiety and no longer take them. I take Levocarb CR at bedtime and it does take 2 hrs to kick in! I get approximately 4 hrs of sleep then I am awake for rest of the night. I never had tremor, just extreme stiffness. With wearing off I have painful squeezing around my waist and some difficult breathing plus dystonia in both feet some nights. Ideally it would be amazing to keep a steady flow of dopamine. Everyday day is different and the level of dopamine is inconsistent. A daily struggle as PD progresses. Trying my utmost to eat well and exercise daily...a constant challenge though! My neuro has suggested tritrating more levocarb. Hate to add more, will have to think on it.

  • So you are stiffness dominant PJ. My observation is that you can have quite a tough time getting adequate relief from meds, you seem to need more or they dont seem quite as effective as us shakers.

    Anxiety is terrible. My friend developed it from one pd drug (would have to check which) and they didnt believe it could be so, but stop the drug and it stopped.

    Have you thought of apomorph? Same friend has been on it about 6 yrs. she had dreadful dystoniabut doesnt get it now.

    I suggest you check out moodyblues postings through his profile. He may be tremor dominant but has many years experience of pd and takes the minimum meds and uses it effectively

  • Thank you Hikoi! I have heard of apomorphine. It is an agonist given by injection. In Canada it is called Apokyn and given to advanced PD. My neuro will not prescribe it at this time I am not in advanced. I pass all the tests? He should live in my body for one day! I will continue to strive to cope, one day at a time!

    I will check out moodyblues posts. Thanks so much for all your information.

    Best,

    PJ 😀

  • Grrrh that makes me cross! I think you have had PD for a number of years now havent you? DBS is an expensive op and i think the waiting list can be long in Canada. It is very hard to push for things when you have pd especially when its for yourself. I think we all need someone by our side as an advocate. I'd be tempted to attend the next neuro appointment in an off state! Do you still want to pursue DBS or apokyn or have you moved on from that?

  • Hi Annie. 'Off' times are a side effect of levodopa, at least I am led to believe so. With all medication, the body adjusts to it and we have to take more medication to get the same effect. The trouble is that there is a limit to how much medication we can take. So what do you do when you can't get any further benefit from the levodopa medication? That is the question!

    There is still only one way to slow down or reverse Pd and that is FAST WALKING. Maybe other exercises can do it as well but fast walking has done it for me. I did fast walking for 8 years, after which I was able to come off my Pd medication and have been medication-free for the past 14 years. I have had Pd symptoms since 1963 but was only diagnosed in 1992.

    If you think you are not able to do fast walking, then don't believe it until you have tried to do it. Like everything else, you have to start slowly and build it up. It costs NOTHING! Unless you have another medical problem that prevents you from walking then go to my website - reverseparkinsons.net and read more about it.

  • John, wearing off is NOT a side effect of the medication, it is a feature of disease progression. Without medication there would be no wearing off because there would be no 'on' to wear off from.

    Not everything can be cured by walking or exercise. Even those of us who are walking/exercising/ Boxing their hearts out report disease progression.

  • Who spoke about curing Pd? In my first Pd support group back in 1996 I met a man who had had Pd for several years. He asked me if I took any Pd medication, and I said yes. He said he does not take any because it is all a rip-off. I said to him that if we want to take it we have to pay the price. He said he will never take Pd medication. To cut a long story short, he only died since 2010 and he outlived all the other members of that group. He never had an "Off" moment. He was slow but he still walked and was quite mobile. I have seen patients in an "Off" time and they were unable to move. Can you explain that?

  • Who talked about curing Parkinson's? I was talking about curing off time. Your website is called reverse Parkinson's.net What else are people to think when they see that?

    Off time is not a side effect of the Parkinson's drugs. Unmedicated Parkinson's was not easy before L Dopa.

  • Not nit-picking, but you said, "Not everything can be cured by walking". We have to be careful not to confuse treatment with cure!

  • I am looking forward to your reply to Davidlouisekeller and his request for evidence for your statements about the cause of wearing off. Otherwise we go round and round in the same discussion.

    If you read his comment again, he is not expecting you to run a double blind study, just to find the evidence for your statement that levodopa causes wearing off.

    I am sure we would all like to look at the same papers that you both find and judge for ourselves.

  • I have not seen any evidence of double blind studies on this, nor have I said that I have. I have read in various places that doctors have said that the "On/off" syndrome is a side effect of medication. I have been busy looking for this but I do not put on file anything about this aspect.

  • That's fine. We can wait for you to find the doctors' statements that led you to the opinion you expressed at the outset of this conversation.

  • Hi Soup. I am getting very confused or somebody else is. I got this question from Hikoi, according to the HeathUnlocked message I received. But when I tried to find this question I could not.

    Here was my response to her:

    Google genetherapynet.com/viral-ve...

    and read all about it.

  • John, my comment to you was to agree with davidlouiskeller's request for documented, scientific evidence to back up your opening statement that wearing off is a side effect of levodopa.

    Your link is to a gene therapy site so not the correct one.

  • Hi Soup. I have found some websites that all speak of the "off times" as a side effect of Medication.:

    parkinsons.org.uk/content/s...

    everydayhealth.com/parkinso...

    pdf.org/parkinson_briefing_...

    There must be more

  • Everyday health does not mention wearing off anywhere obvious and the PDF briefing talks about wearing off in Disease progression (from minute 32) but does not say thT levodopa is the cause of wearing off. This is the same for the Parkinson's UK website.

  • Hi Soup. You asked for documented evidence. I heard about it in articles I have read but have not kept. That is the best I can do.

  • Ok John, but if you make unsubstantiated claims on a site where new

    Y diagnosed people will read them you must expect to be challenged.

  • Hi Soup. We are all Pd patients and we share our views here to help one another. I am in a unique situation, Many of my symptoms have got a lot better. That is not usual, in fact it appear to not have happened before. There has to be a reason why it has happened to me!

    The only reasons why I think it has happened to me are because the medication I took was very unusual and the exercise I did, for other reasons, was highly unusual. The possibilities of other Pd patients taking a montherapy of Selegiline and walking for one hour every second day for several years is very small indeed. Added to that, I became very positive about my Pd prognosis and I gave up my job to get rid of the stress I was experiencing.

    If you had been in this position, would you not have told the whole world about it? Would you not want to help other achieve the same outcome?

  • I would be telling my story, yes. But I would acknoweldge the fact that it was just my story and not extrapolate to include everybody else. Making any claims beyond that which involved my opinions about drugs would be backedup by documentation or I would make it clear that they are just opinions.

  • Point taken!

  • Hi Soup. Jist in case you don't see this elsewhere, here are 3 articles referring to the"Off" condition as side effects of medication:

    parkinsons.org.uk/content/s...

    everydayhealth.com/parkinso...

    pdf.org/parkinson_briefing_...

  • John, the case of your friend is "anecdotal evidence" (considered very weak) to support your theory that "'Off' times are a side effect of levodopa". To prove that theory, you would have to run a double-blinded, placebo-controlled clinical trial comparing levodopa-treated patients with PD patients not treated with levodopa. When patients taking sinemet were compared to patients taking a dopamine agonist ("DA", like Requip or Mirapex) in this way, there was somewhat less dyskinesia in the DA group, but also less benefit on movement. The American Academy of Neurology concluded that "there is no evidence that levodopa accelerates the progression of PD". This is all from my memory, so I better look up & come back with citations to those studies.

  • You are correct in what you say. I, as a retired 82-year-old stand no chance of setting up and paying for a double blind scientific study on any of the things that I say. But that does not make what I say wrong!

    Anything to do with medication has a huge, well-financed industry to back up anything it says. Whatever it wants to get us to believe has every chance of achieving that goal.

    I have been campaigning for people with Pd to start doing fast walking for the past 14 years. Only recently am I seeing more and more proof that what I have been saying all this time is correct.

    Think of all those people diagnosed with Pd over that period who could have been persuaded to do fast walking and could by now be living a 'normal' life, without the need of medication, even though they may still have Pd, as I do.

    The establishment drag their heels on anything that does not involve medication and will continue to do so. I understand their position, but I don't like it!

  • John, I honestly do not believe that any form of financial bias is possible with regard to the generics for sinemet or requip/mirapex, because the standard forms of all three are available as dirt-cheap generics. Nobody is getting rich selling cheap generic meds. But do stay vigilant regarding expensive branded medications, which might be necessary, but always ask whether an appropriate generic substitute is available.

  • Hi David. I don't understand what you mean by financial BIAS? I am talking about why there is no support for a non-medical approach to dealing with Pd, even though it is the only approach that has proved to be able to reverse the symptoms. There is no money in it for anybody, but it replaces medication, which brings in billions of dollars a year for the drugs industry.

  • "Financial bias" is defined in this context best by example. Let's say a neurologist invests in a DaT scanning machine, sharing the expense of purchasing it with several other neurologists. This may be viewed as beneficial if it brings a needed imaging modality to a small town that lacks it. But there is also a subtle bias to use the machine not just to benefit patients, but to prevent the neurologists from losing money on their investment. The neurologist may find himself using the DaTscan test more frequently and maybe stretching the indications for the test a bit. The ratio of benefit to harm may be reduced thereby, and patients may ultimately be harmed. That is an example of the pernicious effect of financial bias.

  • My husband was a prime example of someone who wouldn't give in and kept walking , he walked until his knees crumbled beneath him ,

    It wa a bit like looking at thecomedian who walked behind a counter and pretend to go down some steps , Only it wasn't funny ,

    On two occasion he had to be carried back home by two sitring men ,

    You can't fight what u can't win ..only one winner

  • Hi cabbagecottage. I assume that your husband is no longer with you. May I ask, as a matter of vital interest, did he slowly build up his walking time or did he just go out there and walk until he dropped? That would be asking too much of someone with Pd.

  • Hi John I see you were dx in 1992 am interested in how they dx you?

    I do a lot of walking but still seem to get the wearing off time. I was diagnosed by DAT scan in 2010 .

    I agree that walking is brilliant but sometimes I really struggle despite trying to work through the symptoms everyday is different.

    I know some people say they have managed to have no meds ,but after a lot of research have found that they have never actually had a dx of Parkinson's, but have Parkinson's like symptoms........ This is different and I get quite worried by people telling others that they no longer need meds, some people then become quite poorly because they then decide to cut meds down or stop . Also to keep in mind that PD is unique to everyone who has it, and what works for 1 person maybe not right for someone else.

    WitH this in mind I am very pleased for you that you are doing so well and hope it continues for you.

  • Hi Twotutts. There is no specific diagnosis for Pd. Mine was done by clinical observation by my neurologist, after both my GP and a physician had both decided that I have Pd. A DAT scan is not foolproof!

    It depends on what you call walking! Do you walk as fast as you can? Do you measure the distance and time and arrive at a time per distance walked? If you don't do any of these things then you are unlikely to derive any noticeable benefit.

    If you build up to one hour of walking every second day and you continue to walk faster and faster, until you get to your maximum then you will be on the right track.

    When you do this your brain produces a chemical called GDNF and that repairs your damaged brain cells. That is what I am led to believe and that is what has happened to me.

  • Hi John

    I have 4 dogs so I get to walk about Three to Four hours a day. For 1 hour a day usually in the morning I do a fast or power walk for a bout 1 mile maybe 1 and 1/2 miles. Some days good.... some days I get cramp and have to stop. Been doing this since being dx.

    The main thing'I found to give me more energy was LDN.

  • It would be impossible to do serious fast walking under those circumstances. I cannot say that with what you explained above you will produce GDNF in the brain. Normally, people slowly build up their fast walking by starting at around 10 to 15 minutes every second day for two weeks then they add an additional five minutes every second week until they are up to one hour an about six months.

    The understanding of the production of GDNF is still in its early stages and a lot more studies have to be done on it.

  • Hi John

    I have built up to it. I do feel better when I do it but it does not stop the cramps and foot pain which sometimes occurs. I am also building up to try and do the Glenn Way walk next year. I also have been enquiring about the PD Warrior programme that is running near me....... although my consultant is not enthusiastic. Like you said GDNF is still being investigated, I nearly did the GDNF trials at Frenchay Hospital a couple of years back which involved it going direct to brain but changed my mind when it wasn't guaranteed to work.and involved extensive surgery.I believe that this was the 2nd Trial of its kind for GDNF.

    Hopefully this should be getting nearer to a conclusion about GDNF.

    I think exercise is important but also the diet we eat.

  • Hi twotutts. They say that Rome was not built in a day. It took me 8 years on an MAO-b inhibitor before I was able to come completely off medication. It also took 8 years of fast walking, and stress control and having a POSITIVE ATTITUDE to get me where I am. Which one of these reversed the symptoms I do not know but my guess is all four did the trick.

    So keep working at it and slowly you will start to feel the change taking place.

  • John you ask people to. Work out how far and how long , are you sure you have oarkinsons because most people who do eventually find it very difficult to process their thoughts ,

  • Hi cabbagecottage. Yes, I am positive that I have Pd. 4 different neurologists have examined me and they all agree that I do have Pd. The latest one was in 2015.

    Have you read Dr Norman Doidge's book, "The brain's Way of Healing?" in chapter 2 of his book he tells my story, having personally come all the way from Canada to South Africa to talk to my GP, two of my neurologists and several people I have been able to help over the past few years.

    This is my video

    My book is available at reverseparkinsons.net or on Kindle.

    Many people go to great lengths to try to persuade other people that I do not have Pd because it is obviously bad for business. The choice is yours.

    In response to your question of how long: I would suggest that you start doing fast walking for no more than 10 minutes, as fast as YOU CAN! Do it every second day for 2 weeks. At the end of 2 weeks you can add an additional 5 minutes and every second week thereafter add an additional 5 minutes until you reach one hour. Then continue walking for one hour every second day, trying to increase your speed. You will be amazed at just how fast you are able to walk and how well you will feel. It will overcome all sorts of other problems as well as the Pd. IT COSTS NOTHING!

  • Maybe he w as just one of the lucky one and not as advanced more stable . No two people the same ,

  • Hi cabbagecottage. You say he may have been lucky; I think that the care-givers have the worst time with Pd. Most of the Pd symptoms are annoying and frustrating, seldom painful. Whereas the care-givers have to run around looking after the patient's every need, while still having to do their normal work. It is hard to see your loved-one deteriorating and not being able to do anything to stop it from happening.

  • Soup, your statement is completely in accordance with what I was taught, but John might have newer information. I have asked him to document his statement that "'Off' times are a side effect of levodopa" which conflicts with what I was taught. But I have learned to always keep an open mind.....

  • Hi John. I agree with your strong recommendation of exercise, and fast walking is my favorite, too, when I can do it. The problem is that if I get a foot dystonia, I can find myself many blocks from home, unable to walk, and my only option being to crawl home on my hands and knees. This may be one reason stationary bikes are the recommended exercise machines for PD patients.

    Can you supply me with a citation or web URL link to support your statement that "off times are a side-effect of levodopa"? I am not disputing this idea, which kind of makes sense from a purely logical point of view, but evidence from clinical trials is required to convince me of anything any more. Thanks, in advance....

  • Hi David. I will look for evidence of this, but because I read an enormous amount on Pd and try to file the important ones my executive powers with my Pd don't serve me very well. I did not think this was important, so I have not filed it away. I will look up 'Symptoms' and see if I can find anything there. All this takes time, of which I just don't have enough.

  • Yes. Life seems to speed up with PD - the days fly past, and if I can accomplish one small task each day, it seems like a major victory.

    There is an alternative medical doctor named Marty Hinz who believes that it is the carbidopa that is toxic through irreversible binding to vitamin B6. Hinz is an MD and knows a lot of biochemistry, but his papers do not fully convince me, although I did find confirmation about carbidopa binding B6, so I take a B6 supplement. Hinz was not a PhD when I checked, and has questionable papers published by "vanity" presses. I am waiting for a definitive evaluation of his theories by a trusted authority. Until then, he is on my watch list. I do not advocate his theories, although I play it safe by taking a B6 supplement. I cannot advise others though. He might be a crackpot, or a genius, or something in between. He was NOT a board-certified neurologist the last I checked.

  • Please note that my remarks about Marty Hinz MD represent my personal opinions only and may be in error. Please ask your own neurologist to discuss any of my opinions expressed on this website before changing any part of your regimen. Thanks!

  • John, I don't understand what you're saying here. Before I started sinemet all I had was off time. Walking, writing, balance, pain on and on with symptoms

  • Hi Enidah. Let's get onto the same page. My understanding of what is meant by "off" time is when patients who are on high levels of medication, go into a state in which they are virtually unable to move, when the meds wear off. When you are in the early stages, when taking small doses of meds you are still able to move and do things. That is very different to the first example.

  • Your approach is great as long as it works. People ask when should they start medication for Parkinson's, and I give the same answer you probably would: you don't need medication if you don't need medication. The patient decides when they need it, and I agree with you that every PD patient should delay taking PD meds as long as they can because, while we can debate whether the meds are harmful, we know for sure that they do not help anything but symptoms. The meds we have do not heal the brain, and you are correct that more and more evidence is emerging that exercise might have some healing (neuroprotective) effect. So, we are totally on the same page. I was a jogger and fast-walker until I could not continue either, and these exercises probably helped when I could do them. Parkinson's is not one disease, it is one name for a large, varied group of different diseases that share some symptoms and pathology. I have early-onset PIGD type PD with dystonia, which is "not your grandpa's PD". I don't have much tremor at all, but without levodopa my activities would be limited to those of a paperweight or doorstop. I would give up all my meds if I could, but I am way past fast walking or anything except a cure, such as dopamine stem cell injection into my basal ganglia. Fetal brain cell transplant did very well, but that was done in Mexico. Aside from legal and ethical issues, being exposed to cells collected from 10 to 20 other individuals (even fetuses) has obvious hazards.

  • i David. Sorry to have to ask you this: why are you unable to walk? are you shuffling? Is it because of freezing?

  • I usually am able to walk, but I get unpredictable foot dystonias which are so severe that I cannot weight-bear on the affected foot at all. I always carry sinemet ODT which relieves the dystonia in about 40 minutes, but I do not like having to sit on the sidewalk waiting for it to kick in. I do also shuffle and freeze at times, but I can "big step" and use other maneuvers to break out of those conditions. I do not know of any quick-release mechanism to break dystonia.

    Do you?

  • david from my experience with my husband I can relate to what you are telling us .

    What I am concerned of with Johns statements are if the family or friends read and believe when he tells us to keep walking when you are unable to they will believe you are given in and not fighting it . At the same time making you feel more depressed .

    Exercise is good . I firmly believe it is . But you are limited

    I am sure you have been and are still fighting , you will never give in . Nobody wants Not to be able to .

    I agree the medications are a nightmare and have adverse side effects for some .

  • For me, the medications have not been a nightmare, they have been a blessing. I have not felt a single pang of depression since starting PD meds 11 years ago. Previously I had non-psychological feelings of sadness or depression (a cold feeling in the pit of my stomach) which did not respond to fluoxetine but vanished a few days after starting dopaminergic medication - and no more of that dopamine-deficiency depression ever since. It was a true "chemical imbalance" in the brain!

    I have really not had any adverse effects from the PD meds I take now. I did not tolerate Comtan due to palpitations. But sinemet in all forms and dopamine agonists have been remarkably tolerable for me - and their absence is intolerable due to PD symptoms. I consider dyskinesia to be a consequence of SN neuron loss, not caused by medication, but triggered by taking more than I can tolerate given my depleted SN.

  • Hi David. Just in case you don't see this elsewhere, here are 3 articles that say the "Off" condition is a side effect of medication:

    parkinsons.org.uk/content/s...

    everydayhealth.com/parkinso...

    pdf.org/parkinson_briefing_...

  • I can't find any text that states the "off" condition is a side-effect of medication. Can you copy and paste the quote please? Like so:

    "Wearing off

    When Parkinson's medication is working well, Parkinson's symptoms will be well-controlled. This is called 'on' time.

    When symptoms are not well-controlled and don't respond to medication, this is called being 'off'.

    As Parkinson's progresses, some people find that a dose doesn't last as long as it used to. This is called wearing off.

    Sometimes the effects of wearing off can happen quickly and there will be a sudden change between being 'on' and 'off'."

    The above quote is from your first link. It does not contradict my understanding that the "off" state is part of the natural course of Parkinson's disease. It is a symptom that existed before the first Parkinson medicine was discovered. The off state is the effect of the disease, not of the medicine. I would be off all the time if I had never taken any Parkinson medicine. That is the conventional wisdom. Can you direct me to any statement which contradicts my understanding?

    Many thanks,

  • Hi David. I downloaded the first and the heading is Side Effects and under that heading is all about the On and Off condition. If it wasn't a side effect this would not be there.

    The third article is "Side Effects of Medication" and the 1st paragraph is:

    Over time, many people with Parkinson's will experience side effects of medications used to treat the disease, particularly as new medications are added or doses of existing medications are increased. Find out more about common side effects of Parkinson's medications, such as dyskinesia, wearing-off, drowsiness, sleep attacks, hallucinations and impulse control disorders. Find practical strategies for managing them.

    I don't know how to highlight "Wearing off" but it is there.

  • Okay, drowsiness, sleep attacks, hallucinations and impulse-control disorders are "side-effects" of dopaminergic medications because they are adverse effects of the medicine and you would not get them from the disease itself if not treated with the medicine. Wearing off is due to the medicine only insofar as no medicine can last forever. When the effects of the medicine wear off, which is inevitable, the PD patient is then returned to the natural unmedicated state he would be in if he had never taken any medication, which is the "off" state. "Wearing off" is the process of getting to the "off" state. All the experts and PD literature indicate that before levodopa, all advanced PD patients were off all the time. Levodopa does not cause the off state. Levodopa wears off as all medicines do, which we experience as "wearing off". In doing so, it returns us to the wretched state we would exist in permanently if not for levodopa. That is the best I can do for an explanation. Beyond that I must refer you to your neurologist. My meds are wearing off now!

  • Hi David. I understand it slightly differently. I am not arguing with you, but I spoke about a Pd patient, whom i knew many years ago who refused to use medication because he said it was a rip-off. He outlived all the other patients in that group and did not ever get to the stage where he could not move. That is very different to those who have been on levodopa for many years and cannot do anything when they are "Off"

  • Your friend may not have had Parkinson's disease. Many people are misdiagnosed. Please see your neurologist for further discussion.

  • Exactly right. I have done lots of research and lots of people were misdiagnosed in the past, These people had parkinson type symptoms. Guess all I I'm saying is everyone different and what works for one may not for some. I also suffer with foot Dystonia and it is so painful and without meds would not stop. NEUROLOGISTs don't always get it right.

  • My neurologist has been correct 100% of the time. I have no complaints about neurologists. Unfortunately, Parkinson's disease for some reason attracts a lot of crackpot alternative practitioners, including physicians who are not neurologists, medical ancillary staff, dentists and non-clinicians, all of whom claim to know better than medical scientists who have devoted their lives to the systematic study of neurodegenerative diseases, not sitting around exchanging anecdotes which purport to expose the incompetence and stubborn closed-mindedness of medical doctors. Most deplorable of all would be those who do not in fact suffer from Parkinson's who come before us offering unproven remedies or urging us to reject the best treatments available on the basis of? On what basis? What research? Crackpot advice based on fabricated anecdotes, as far as l can tell. I wish I were well enough to argue with these people, but alas I am not. Good night, I now exit to uncheck all the boxes in settings. No good deed goes unpunished anywhere, as I should have learned long ago.

  • The important point underlying your question is this: Does sinemet, for example, harm the brain? Temporary or reversible side effects are not the issue. You want to know whether damage from sinemet or requip is the cause of any form of irreversible brain damage or disease progression. That is an important question that can only be answered by medical scientists. I am a physician, not even a neurologist, but I have read a major statement from the AAN (american academy of neurologists) that levodopa does not harm the brain based on all the research done by experimental scientists. You can choose to believe the AAN or not. I believe their statement. I have done enough reading and science myself to get a sense about things like bias and experimental and statistical errors. I believe the AAN conclusion that our medicines do not cause brain damage. You will have to decide for yourself who and what you believe. That is the extent to which I can help you with this.

  • Hi David. I am led to believe that all medications are harmful. The trick is to decide if the medication provides more advantages than disadvantages. My guess is that levodopa does do some damage, otherwise guy who took no medication was better off than those who did.

  • You may be correct. Our discussion is over, do not contact me further. Please see a neurologist for further questions. You seem to be selling an alternative therapy of some sort and I perceive that you are not questioning me to get information but to push your views. I do not wish to be part of that. Stop sending me messages. Thank you.

  • Hi David. I am not SELLING anything! I am always looking for information that can lead to reversing the symptoms of Pd, until a cure is found.

  • Okay, if your book is free, I'll have a look at it.

  • Hi David. If you contact me on my website - reverseparkinsons.net - and give me your address, I will post a free book to you with pleasure.

    I know that doctors do not like reading medical information written by non-medical people but it is not possible to tell my story in any other way,

  • In case you don't see my reply elsewhere none of these links state that levodopa therapy causes wearing off. I have looked and listened to them.

  • Hi Soup. Surely, if the heading is "Side Effects of Medication" and the item included under that heading says "Wearing off' of "Off" then it must mean that this is a side effect of medication.

    I have read many times in articles written by doctors and or scientists that it is a side effect. I have not saved any of these articles but will keep my eyes opne for them now.

  • I am a non-neurologist physician with advanced Parkinson's disease ("PD") and a separate condition which prohibits me from getting DBS surgery. I require about 2,000 mg per day of levodopa, a comparatively high dose, plus the maximum dose of Mirapex ER (4.5 mg per day). I need to take enough medication, frequently enough, to minimize my "off" time, but I also need to keep my doses small enough and infrequent enough to avoid dyskinesia. Success is defined as "on" time without dyskinesias. Fortunately, I do not experience side-effects like impulsivity or hallucinations.

    My neurologist said that there is no fixed maximum dose of sinemet. Each patient has their own optimum total daily levodopa dose, which can vary. The daily levodopa dose should be high enough to minimize the patient's "off" time, but low enough to avoid dyskinesias, impulsive behavior and hallucinations. Sinemet is not directly toxic for most patients. Patients might need more sinemet on days when they did not sleep well the night before, or for other reasons.

    I can prescribe my own sinemet, so I do not have to put up with horrible "off" episodes while I wait for my next dose. Phone your neurologist's office and ask why you cannot be prescribed enough sinemet, taken at short enough intervals, to keep you from suffering in these pre-dose "off" episodes. Too little sinemet can cause uncomfortable "off" episodes. Too much sinemet can cause dyskinesias, which are nearly as bad, and also hallucinations and impulsive behavior.

    You should discuss your symptoms and your medication doses with your neurologist until you understand the effects and side-effects of low and high doses of your medicines. You should keep asking questions until you clearly understand all the issues involved. With enough knowledge and experience with these medicines, you can better help your neurologist optimize their doses to avoid being "off" or dyskinetic.

  • I have often thought I wished I could have been in control of trialling and titrating the medications ,. The consultants don't live with us .

  • I agree. Patients and their care-givers should be given as much control over the titration of PD meds as they can safely handle - which for well-informed and intelligent patients and care-givers like you is a LOT of control. As you know, titration is not a one-time process, the patient's needs can fluctuate daily and only the patient & caregiver can make that daily assessment with the utmost accuracy, perhaps with the assistance of the neurologist by telephone when needed. If I could not self-prescribe I would page my neurologist at 3 am if they did not prescribe the right dose and I was having problems. I believe that it is the right of patients to have control or a doctor who is willing to help 24/7 if they insist on keeping control.

  • And that leads well into this article

    An hour with the neuro a year so what about the remaining 8765 hrs in the year.

    riggare.se/saras-self-track...

  • I left this reply to the author of the self-tracking article who only sees her neurologist twice per year:

    I am a disabled primary-care physician with advanced Parkinson disease, with dyskinesias and not a candidate for DBS. Even though I have the ability to self-prescribe, and I read the PD literature daily, I see both of my neurologists at least 4 times per year for each. My general neurologist knows me the best over 15 years, and I also see an academic research movement disorders sub-specialist. Self-tracking is great and very important, but it cannot take the place of frequent contact and guidance from your neurologist. Any patient with questions, problems or uncertainties about any aspect of PD should make an appointment with their neurologist and not wait 6 months or even 1 week. If you are in an HMO, demand to see your neurologist. You have that right. David L. Keller, MD, FACP

    ncbi.nlm.nih.gov/myncbi/dav...

  • Is the Duodopa pump an option for you?

  • Soup, the Duodopa pump is not an option for me, either. My hope for continuous infusion lies with a company called Neuroderm, located in Israel, which has patented a subcutaneous infusion pump system, like the one diabetics use. It pumps a liquid solution of levodopa through a catheter tunneled into the skin of the waist area (as I recall) and the neurologist adjusts the basal rate of levodopa infusion, and the patient can add boluses of levodopa solution as required. This device is undergoing phase III trials, and I understand that the phase II trial was quite successful. I am lazy, tired and have to go now, but let me know if you need citations (google "Neuroderm Parkinson" for starters.......

  • Thank you. I hadn't heard of that before.

  • Here is the link to Neuroderm:

    neuroderm.com/overview-3/

  • I am sure you are not lazy ....

  • You are right, "lazy" is my shorthand for the oppressive fatigue and weakness of the "off" condition. I'll write "I'm wearing off" from now on!

  • I put puppy on lead put my headphones on & my fav music & head to the beach where I belt out all my fav songs at top volume

    Sometimes to the embrassment of puppy lol lol

  • Hi Annie. Fortunately, I have never been in this position. I empathize with you, and can only suggest a different approach. That cannot be done on a blog like this. Please contact me via my website reverseparkinsons.net.

  • When I'm out in public, I take each dose little early so there will no wearing off. When I'm at home, I always sit down when the time is approaching to take the medication, and I remain in the chair until I feel the dose has taken effect. If I don't sit down, my feet and back start hurting terribly. I get really frustrated because I have to interrupt the project I'm working on to go sit. To counter the frustration, I usually sit at my desk (I have a very comfortable office chair), and I'll have a project spread out on my desk to work on until the medication is back on. I don't like working that way - going back and forth between projects - but I've accepted it. At least I'm making progress in a couple of different areas. If the wear off is really bad and I feel really miserable, I'll close my eyes, put my feet up on a stool, do deep breathing exercises, and do a face massage. (I've mentioned face massage in several other posts. People are probably tired of hearing about it, but it is something I really rely on to get me through the worse times.)

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