Stupid question: are we supposed to wait until the dyskinesia passes before taking our next dose? or plunge ahead according to the clock?
Timing of meds: Stupid question: are we... - Cure Parkinson's
Timing of meds
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Beckey
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It is really your call, as you know yourself best, but I tend to follow the clock as far as possible.
To beat the dyskinesia, I have to take it every 1 hour and 40 minutes. Sometimes I can feel that I need to take it sooner, and I will. Once dyskinesia starts, I double up the dose. That's what works for me. Everyone is different.
jlloy5-i find if i do what you do, then my dyskinesias are worse at the end of that dose. so what works better for me is if i feel the dyskinesias coming on early, i take half my dose, and then the other half when it was supposed to be. i get dyskinesias just before the sinemet wears off (not between doses). beckey-i think you should try different timings/amounts (on days when you are home), and see what works best for you. you know your body best & your md should adjust your prescriptions according to what works for you. i keep a pill box in my pocket at all times, and im always aware of the time. but usually my body tells me when its almost time for my dose. sometimes i feel like cinderella watching the clock, to avoid turning into something,
john- there are different types of dyskinesias. the peak-dose dyskinesias improve with a reduction of sinemet. jjloy5 and myself (and probably beckey) apparantly have the diphasic type which improve with a dose of sinemet. its just another thing we have to figure out..... here is a link with info on the different types -
I was very active, doing Rock Steady Boxing 3 X a week when quite suddenly -- like, in a span of a few days -- I started falling and having more advanced kind of symptoms, like hallucinations. I could barely stand independently, let alone walk fast. I thought, this is either too much sinemet or my disease picking up a head of steam, but my neuro said this was caused by anxiety. She said, "Parkinson's just doesn't move that fast." Now I take mucuna and amantidine, still get terrible dyskinesia.
in reply to Beckey
My neurologist said P can advance quickly in as little as one week. But he is also known for saying my back/leg pain and my decreased lung function is not caused by P.
People, including myself, take levodopa because it alleviates their symptoms.
I have gotten better by taking medication because it kept my symptoms under control, giving me the opportunity to find a modality that resulted in improvement.
I get the dyskinesia from 2 things, completely unrelated. When I am stressed, nervous about something, trying to multi task or have a lot on my mind. When I have a build up of too much meds (Carpa/Levo or Ropinerole). I have been able to reduce dyskinesia when caused by the later. I have found that although my 1st & 2nd dose of meds can be no more than 3 hours apart, if I follow that schedule as directed by my Neurologist, for the rest of the day, the build up is too much. By waiting until I feel slight symptoms coming on, my afternoon & evening doses are apt to be 4-6 hours apart.
You [John Pepper] have admitted you have essential tremor which is not PD. You have admitted you are unable to help people with resting tremor, which is PD.
healthunlocked.com/parkinso...
*"I do not have a resting tremour, but I do have an essential tremour. I have found that I am unable to help those people with the resting tremour."*
I am reporting your comment to admin for destructive language. You have worn out your welcome here.
Who are you talking to? Do you mean me? I don't have ET. It's PD.
What is your point? 4 neurologists have diagnosed Pd? A sniffer dog has diagnosed me as positive for Pd.
The only point I make is that medication cannot make our symptoms improve! The type of Medication I took, together with the fast walking and various other activities have reversed many of my symptoms to the point where I no longer need medication.
This is obviously bad news for those with vested interests, but I am on the side of the patients, who WANT TO GET BETTER!
My question is that if you rewire your brain so you can walk fast and lets say you have lost 80% dopamine production . I would think that your brain might ask itself that this ole boy really likes his walking. What is less important and we will ( rewire through that link ). You think walking is more important than smelling? Do you end up trading one for the other?
We don't rewire out brain, when we do something consciously We merely use a different route to send the instruction to the muscles. That is my take on it.
Why is nobody interested in researching this? I think I know the answer to that question!
John, the comments you made that were deleted showed you value your own self-aggrandizement over the welfare of PWP.
I took a look at your endorsements. I did not see anyone who said their PD reversed. Likewise for your reviews on Amazon. Unlike other treatments that have helped PWP, I did not find any independently made YouTube videos of PWP saying your method helped them, must less reversed their PD.
If you had the cure there would be much stronger positive reporting. You have a method that may be of some help, notwithstanding your own comment that you cannot help people with resting tremor. There are many reports on this forum of other treatments that people have found helpful. It is high time you recognized the reality that John Pepper does not have a monopoly on things that can help PWP, and you certainly do not have a cure.
Self aggrandizement? Where do you find that?
As for endorsements showing that people have reversed their symptoms? It took me 10 years to do that. I have been teaching people fr the past 4 years, since Dr Doidge brought people's attention to me. How can they get better quicker than I have? Every one of them claimed they are getting better. What more do you want?
Who said anything about a cure?
We've heard it said many times, people are different, what works for some doesn't work for others.
If you don't want to read what JP writes, don't read. Everyone brings something to the table. Don't we all have enough stress in our life without having to add more?
This is a very important discussion with John for me and perhaps some others. If you don't like it please take your own advice and don't read it.
Well said!
Self aggrandizement: Saying you have “reversed symptoms” of your PD, that your condition is “as if I never had Pd” when in fact you still have symptoms just like the rest of us:
“When my mind wanders, while doing my bi-daily walking, ... my right foot drags along the ground and makes a scuffing noise and I tend to trip. I have been using my conscious brain to walk since 1998, That is 16 years. ... I have fallen a few times... My condition, as you know, is as if I never had Pd, but I still do have it and I still do occasionally trip or fall” [emphasis added]
healthunlocked.com/parkinso...
“How can they get better quicker than I have?”
How often do you tell people your method takes at least 10 years to see improvement?
Gosh if only there were a bit quicker way.
“What more do you want?”
1. Cease and desist from the type of abuse that got your comments deleted.
2. Accuracy. Conscious movement is a method to manage symptoms, not “reverse” PD.
3. Exercise is universally agreed to be good for PWP. You have no monopoly on it.
This is just a comment on 'Reversing Pd'
In 1992 I was shuffling, bent forward at the waist, unable to write legibly, unable to talk properly, just to name a few symptoms. Those are all in the past!
Would you not say 'That is an improvement?'
John, an improvement is not the same as "reversing" which people would take to mean you have no symptoms, which is not the case.
I noticed a succinct recitation of your contradictions here healthunlocked.com/parkinso...
which might be a place to continue the discussion.
Reverse is a direction, not an end point.
When hyping the saga of his miraculous “PD reversal", JP routinely fails to mention that his original diagnosis was ‘Essential Tremor’ (a non-parkinsonian condition), that his claims of PD “reversal” have NEVER been supported by a single qualified neurologist (N.Doidge is a psychiatrist who writes books), and that he has never had a positive response to Sinemet - the 'levodopa challenge' - further indicating a NON-parkinsonian condition. Furthermore, despite writing a book on the subject and obsessively hyping fast-walking “PD reversal”, JP continues to stubbornly dodge the commonly available means to definitively confirm an actual parkinsonian condition (DaTscan). And, with his ET being 8 times more common than PD, incessant claims of “PD reversal” remain HIGHLY dubious and help no one. Until JP presents the results of a positive DaTscan (indicating a genuine parkinsonian condition), a healthy dose of skepticism is the best medicine.
Park Bear, you do agree that the brain can be rewired bypassing faulty circuitry that no longer works? JMO, I am not a medical professional, this rewiring happens after many repetitive events. The more you do the more hard wired it becomes. How long have we been afflicted? 15-20-25 years or more. One or two trips around the block is not going to correct decades of PD. Like wise, I'm on Tasigna. Does anyone believe that six months or a year of oral medication, is going to clear up the disease that has ravaged our bodies for decades? The root cause must also be corrected (misfolded proteins?). Medicine is so close. Everyone hang in there and keep moving. Tc.
Not only do I believe new brain "wiring" can replace faulty circuitry, I myself am experiencing it over time spans of only months or weeks. All I said here about medication is it has kept my symptoms at bay to enable me to explore ways to do this.
PB: It's VERY important when engaging in argument with JP that you be wary of his most formidable weapon (applied whenever confronted with inconvenient facts). Once he unleashes his literary equivalent of a prolonged bovine stare, as he so deftly does, the argument is doomed...
Parkbear,
There have not been many arguements on this forum and i have been on the forum since its inception.
The one common element in all of this is that all arguements /discussions involve John P. I think there are a number of reasons for this one being that he likes to have the last word.
Many different people have found themselves unintentionally at loggerheads with him over the years. As he says, that must tell you something.
It has been worthwhile debating this matter with you!
Member jujulini posted this comprehensive link
ncbi.nlm.nih.gov/pmc/articl...
Use of controlled‐release preparations of levodopa
The standard preparation of levodopa with a short half‐life has the potential for pulsatile stimulation of the post‐synaptic receptors. It was hoped that a controlled‐release formulation (for example, Sinemet CR) with a longer half‐life would obviate this problem. However, a study comparing standard formulation of levodopa with a controlled‐release type in early Parkinson's disease showed no difference in the frequency of LID after 5 years of follow‐up.27 However, the controlled release formulation has variable absorption and it was administered in a twice‐daily regimen. This could have accounted for the failure to achieve continuous dopaminergic stimulation.
Liquid levodopa/carbidopa produces significant improvement in motor function without dyskinesia exacerbation
neurology.org/content/47/6/...
The formula for making levodopa liquid:
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