Since Christmas I have been following the approach that the swings in L-dopa supply to our brains are themselves a problem and possibly even destructive as they stress the system with a constant roller coaster effect. Since our bodies seem to be trying to maintain a steady state it makes sense IMHO to try for the same.
As a result, I have gone from taking a single sinemet 10/100 plus a single sinemet CR 50/200 every two hours (total Ldopa 2400 mg daily but no other meds) to taking two sinemet CR 50/200 every three hours (total Ldopa 2400 mg daily with no other meds).
I feel that there have been some definite improvements. I have almost no "off" time and the freezing that comes with it, for example. I wake up in a little better condition than before and have less difficulty wobbling from bed to the bridge of the SS Enterprise ( ). Greater stability throughout the day. And, if I resist the temptation to skip the 9:00 PM dose, I stand a good chance of making it to bed without frightening my wife.

Has anyone compared these two approaches and can it be sustained?

This is a huge issue for me. I have tried all manner of things - equal doses (levodopa, mirapex, selegilene), three times a day, four times a day; full dose in the morning and half-doses more often in the day, all 3 drugs at once, or at 3 different times; with food, with liquid, empty stomach; before physical exercise, or after..
I keep running around like a chicken with its head cut off, roller coaster with no tracks under it. Fluctuations they call it. Of course it could be said i was always like that - PD amuses itself by taking hold of what you are and playing with it - and there is the question of emotion and creative energy causing what is left of my brain to crank out some home-grown levodopa, possibly underdose and overdose caused by fluctuating self-made drugs.
I am still thrashing around experimenting with doses - but i try different tactics weekly, and some people tell me you have to stick with one program for 3 months for your body to take the hint that this is how it is going to be and so your body had better get with the agenda.
I would love to get this straightened out, because this particular roller coaster has some down hills that are like free-fall, pulling up at the last minute, and then being flattened by the G-forces of changing directions again.
All suggestions are appreciated, but will be taken with a grain of salt (with the Tequilla)

Have you tried Comtan? Amantadine? I am about to try Comtan, and would appreciate hearing about anyone's experience with either of these two drugs. I wonder if Comtan will just prolong the agony of the daily withdrawal?

Never tried either one. Don't know if my Neuro will approve; he seems to think that I am a bit too enthusiastic about testing some of the limits on the labels. Everyone says I should follow a strict agenda for taking the pills, but that may not work for me, as I have never had a strict agenda in anything. I take pills when I feel like it. I sleep when I am tired; I eat when I am hungry. I learned that from a cat. So I take drugs when my body starts singing Ozzie Osbourne songs. But then it is hard to tell if it is an overdose or an underdose. I would prefer to follow a strict agenda and be very regular, but it is as if my body won't let me. It demands a pill, or food, or sleep, at wildly different times. Breakfast at 3 a.m., asleep at noon, etc. Random unpredictability.

Atma Namaste (love your alias),

I started on comtan around three years ago, it smoothed things out and helped me quite a lot, as I seemed under medicated to my PD nurse. Depending on what I do it extends my dose, which prior to that had dropped to being around 2 and a half to three hours then completely off. Nowadays I rarely go completely off, just some of the way, and I regained a smile which I hadn't really had for several years. If I run out of comtan which has happened at the weekend twice over the last year as my prescription for it lasts for less than my other meds there is a big difference in the way I function that appears after about 12 waking hours without it. I am rigid/akinetic with v little tremor.

There are a couple of downsides to taking it, it stains urine a deep orange, and there is a possibility of diarrhea as a side effect (best to discontinue if this happens, but make sure it is the comtan that causes it, and not something else), but for me the benefits have outweighed it's rather colourful effect.

I was offered this as an all in one ( l-dopa/comtan) tablet, Stalevo, but preferred to take it separately so I could 'customize' how I take the sinemet. People seem to fare differently on the two ways of taking it, in a not predictable way, it just seems to depend in the individual.

If you go for it, I hope it works as well for you as it does for me.

Lindy

When I tried Comtan, I started with one pill. Had my first nightmare ever that night (my husband swears he'll never be the same after being woken up by my screaming!) and the next day I had a rash all over my belly. End of Comtan.

Bob,

Sounds to me like you are wanting to stay connected to your body, mixed as the signals may seem to be. But life is cyclic and we have lost touch with that in a big way. Maybe the roller coaster ride is a better way to go if it is a reflection of your body responding to stimulus. (take for example spiking a fever when a virus takes hold...such a response is a ssignal of vital force = no fever would indicate immune weakness)
I have to wonder what happens when we attempt to take total control ignoring any ryhthym and go for the steady state.....i usually wait till sx return (le my body tell me) before ii take the next dose. aren't drugs rendered ineffective by oversaturating with them? having said thhis i also recognize that one can miss out on positive response by undermedicating.
we all find balance each in our own way-no hard and fast rules here for me other than keeping the dose to the minimum d i will say that this practice has lead me towards cutting from 3-4 tabs sinemet /day in the winter back to 2 in the summer-now i'm back to winter dosage sigh....

cheers
md

not amantadine? bob i can't see anyone getting thru life with pd without amantadine. lol i only take 25/100s regular every two hours and am rarely off unless i forget or eat too much. if i have obligations to attend to or an exercise class i take extra. [this you could NOT do in the rehab facility ]

Rick it sounds like you are doing similar meds but you don't get dyskinesia? no other meds? - i'll check your list. what has changed to make it better for you to write the post? my worst symptom is my balance. sometimes it's just not there on right side. I was walking and talking on the phone today and i fell- can't multi task when walking. it was my first fall since the fracture but a soft landing. able to go without a walker some of the time but my balance is a pd symptom, not from the fracture. i wonder if it was a benefit for it to happen because now i have a metal reinforcement in my affected hip and can drive and exercise better than before.

when i took CR, or any other dopaminergic drugs, MAO inhibitors, agonists, comtan, selegiline, stalevo - anything at all, i get dyskinetic.i would encourage anyone to ask their doctor about dropping some of the dopamine drugs and concentrate on regulating the other tramsmitters,

which I feel the other drugs are doing. anxiety is bad [xanax - low dose] enhances GABA; nortriptyline - anticholinergic that boosts NOREPENEPHRINE and may help to regulate ACEPTYLCHOLINE. Clonazepam for anxiety, antiseizure, enhances GABA, which took away my rambling speech and helps my mouth to stay more relaxed. It 's a circuitry that includes all the neurotransmitters so our medications need to reflect that.

Today on a conference call we made some analogies. Remember if one light was out on a string of Christmas lights , they might still work but if multiple lights were out the whole string was useless. Or if an appliance blows a fuse it takes out half of the house appliances but not all of them, leaving some usefulness. we don't blow fuses much anymore except in older house . but protein "circuit blow out" is on the rise. No electricity, no power.

Paula-
I am just using the sinemet CR having given up the requip late last year. Dyskinesia was a problem at first but I quickly cut back and at present have only head and face involvement in the evenings. I'm still trimming there too. I have a couple of OTC confessions, as well. I asm trying to work in ginger for stomach stimulation but it powerfully starts the DK so I have shelved it for the moment. I assume that it is working on some pretty powerful pathways if it is able to set me jumping with a single tablet. A half is much more manageable.

Finally, there is potassium. I had been taking potassium gluconate (the cheap stuff) for some time (four months?). Each tab yields up 90 mg or about 6 mEq, a weird little unit of measurement to "eq"uilize the various forms available. I started out taking four of them (or 24 mEq) each morning. I have since added another four at midday and a third round at dinner. Total of 1080 mg or 72 mEq plus a normal diet. My Doc has advised that so long as I am peeing like the proverbial race horse that I'm not likely to overdo it.

Despite all that, my pottassium remains stuck on the extreme low end of "normal" at 3.5. I'm eating potassium by the handful plus taking beta-blockers and ACE inhibitors (the lit says that caution is advised in both instances) and the levels barely budged over the last 18 months! So, how much credit should go to potassium and how much of that is relevent to PWP in general?

Turns out, maybe a lot. -


1. Acta Med Scand. 1977;201(4):291-97.

Kaliuretic effect of L-dopa treatment in parkinsonian patients.

Granérus AK, Jagenburg R, Svanborg A.

Hypokalemia, sometimes severe, was observed in some L-dopa-treated parkinsonian
patients. The influence of L-dopa on the renal excretion of potassium was studied
in 3 patients with hypokalemia and in 5 normokalemic patients by determination of
renal plasma flow, glomerular filtration rate, plasma concentration of potassium
and sodium as well as urinary excretion of potassium, sodium and aldosterone.
L-Dopa intake was found to cause an increased excretion of potassium, and
sometimes also of sodium, in the hypokalemic but not in the normokalemic
patients. This effect on the renal function could be prohibited by the
administration of a peripheral dopa decarbodylase inhibitor. It is not known why
this effect occurred in some individuals but not in others, but our results
indicate a correlation between aldosterone production and this renal effect of
L-dopa.

PMID: 851038 [PubMed - indexed for MEDLINE]


So, despite the fact that potassium plays a huge role in muscles and nerves, and despite the fact that the bladder enhancing powers of levodopa can encourage us to pee away potassium and B-vitamins, we really don't know much more than we did 40 years ago.

All I know is that I am almost freezing - free, that I am getting more functional every day, that I am sleeping better, that I am almost free of leg and foot cramps, etc.
_Rick