While it is tempting to look at this as a "simple" addiction to levodopa and Max's experience as cold turkey withdrawal, I think there is more to it but it is such a tangled mess that it is hard to magine the other possibilities.

Since many of the symptoms we encounter existed prior to L-dopa treatment, there is obviously something there being obscured by the drugs.

There is also a substantial time difference between the time that L-dopa relieves symptoms (2 to 4 hours) and the time before the hammer fell on Max.

As for the poor guy referred to by Dr. Koeller, do they not see that, for 42 years old, he is doped to the max? Do they not read the inserts and think about the fact that the effects of a little too much of most of them are nearly identical to the symptoms themselves? I mean, 1800 mg of sinemet just for starters? I can't count the number of times I thought my symptoms were worsening only to realize that I was over medicating again.

It would be interesting to see how the official symptoms of PD have morphed over the years as medications have been introduced.

My experience echoes yours.. Every now and then, conditions ppermitting/dictating, I spontaneously take a 'drug holiday' - usually skipping my pm dose (1 Sinemet 10/100 w/ 1g mucuna w/ ashwagandha and ginger). I find this can be a really good thing, relaxing, peaceful .... AND that I will likely be a little compromised the next day! Fortunately, I was at home when I learned this lesson - by suddendly - w/ no Dysk warning! - going off and I do mean off! It was alarming. I think it might be understood via J W-H's PD meds book where she talks about THRESHOLD levels of l-dopa. the key to dosing being hovering as close to thresh level as possible. Not so easy when one is blindfolded!

ibby

A cardiologist from the Mayo Clinic with PD observed that when he got up in the morning his mental capacity was improved compared to periods dosed with Sinemet.He recommended a washing out period daily.I take 300mg of Sinemet daily with the lasst dose at 6pm.When I get up at 7am after 2=3 minutes of walking ,I start walking as if I was on Sinemet.What is even more amazing is rigidity in my upper back is reduced and I feel almost normal.I take my first dose of Sinemet at 8am.14 hours after my last dose.The improvements dissapate by 9am.I believe the natural Levodopa produced overnight in the body is more beneficiasl then Sinemet.Washing out periods may induce the body to produce it's own Levodopa.

I agree with Tina totally. Don't ever try this. I never though it would be this bad. I'm ok now, but it was pretty scary for the past 2 days. Keep in mind that I was only taking 1 Sinemet (200/50) a day, broken into 1/3's. But I was also taking 1 tsp of mucuna 3 times a day. I was already unmedicated for an average of 15 hours a day. I didn't think I was that dependent. In my regular unmedicated times, I wasn't that bad. I could wake up after being unmedicated for 15 hours and go for a 40 minute walk. I had no idea that after I got back to my normal routine, that I would suddenly crash.
Any changes has to be done gradual ( weeks/months never in 1 day). The following is a quote from Robert Rodgers "Most drugs for any disease (including Parkinson's) have a strong addictive character to them. You cannot just stop taking the drug one day. You will pay serious consequences, perhaps even death. The body will experience very serious withdrawal symptoms. Most people who attempt to stop taking their drugs cold turkey wind up having to take a stronger dose later. If you do decide to reduce the dose of any drugs you are taking, do so only in close collaboration with your medical doctor. A program to reduce dosage will take a very long time - months and sometimes years."

But I agree with accu200 too. I also think there's some good giving your body a mini-break off the drugs during the day. "Washing out periods may induce the body to produce it's own Levodopa."

Has anyone else heard about this "Washing out periods may induce the body to produce it's own Levodopa"?

Thank you,
Max
P.S. Thank you for all your responses and advice. I have a lot of respect to the member of this group.

I have a similar morning pattern. I usually go to bed around 11:00 PM and in bad shape with freezing and a real struggle to walk. If I get up prior to about 4:00 AM I am not much better off. But if I get up after about 5:00 AM it is a different story and I am reasonably functional.

I usually get up around 6 AM, take the first meds, and wait for kick-in about an hour later. Often I lose ground during that wait even though I am usually doing nothing but going online.

If I graphed a typical morning in terms of function, it would be at baseline at midnight, begin to rise at 3 AM, peak at 5 AM and plateau to about 6:30, ski slope down until 8 AM, then a slow climb up to normal around 10 AM.

What I suspect is a link with the circadian rhythm of waking up. Normal cortisol levels follow a similar pattern. That's what wakes us up. But I'm not sure now "normal" ours are.

Hi,

If you are looking for some curcumin to buy on the internet Life Extension sells a high quality bioavailable supplement.

Normal is a word that applys to nothing in life that I can identify. Everything is relative!

I have a little 4 compartment pill case. Each day I put 8 sinemet cr 25/100 in compartment #1, 2.5 mg of Mirapex in Compartment #2, 3 entacapone in compartment #3 and as many as 10 clobazam (benzodiazapines) in compartment #4. I also have 2 25/100 Sinemet cr +.5 mg of mirapex + 1 entacapone in a small shot glass next to my bed. The pills in the shot glass are my 1st doseage in the morning. I usually fall asleep around 11:30 and I eat before I go to bed , usually protien so stable blood sugar overnite. I wake at 7 am. This is my way of tracking my meds. I often can;t remember if I took my last meds, but can quickly tell by doing a little math with my 4 compartment pill case. I often screw up on the timing, but as long as I feel okay I just carry on down the road taking my pills at more or less 2 hr intervals . I find on a good day, I have pills left over(gonna party tonight cuz I still have pills!!) after 9 pm. I only take benzo's if I need them, so often have days when I haven't taken any. On a rough day..oh well, just give up and go to bed when meds run out. If I totally loose track of my pills and timing I go into what I call 'smorgasbord medication behavior" ...a little of this, and a little of that and lets see what happens. This is my life, I tell this to my Neuro and he nearly goes into cardiac arrest. Lately I have added a little (very little) Mucuna and it does make the day go smoother. I have come up with a sure fire way to take it....I lick my finger, stick it in the MP powder then lick my finger to transfer MP pwder into my mouth and wash it down with water. Works like a charm. I'd say I'm getting 1/16th of a tsp at a time. No black seed casing left in the bottom of the glass. My body has trouble acting addicted because it never can be sure of anything. On the whole, my med schedule and amts, have changed very little over last 5 years. One day at a time, as the old saying goes. Many days no dyskinesia at all.
12 years down, who knows how many more ahead.

Glad you lived to talk about it Max! Thanks for sharing. Love you all ..rosie

Glad you're okay Max. That was a risky, brave thing to do. It was very interesting reading your experiences. Thanks for that.
I too sometimes wonder what I would be like without my meds. I don't think I take as much as most. I take Mirapex 50 mg 3/day, stalevo 150 mg 3/day, sinemet 25/100 (not sure how much that is - 25 or 100?), cymbalta 60 mg 2/day and welbutrin 60 mg 2/day. Good grief, when I type it all down I realize I am taking alot. I have to carry a pill case otherwise there is no way I would remember when and how much. Often I am off schedule, but I usually am so stiff and hurt most of the time, I can't tell difference. I am starting to break out in sweat at work after lunch, so that must be a sign that I am late on meds. I am not very good at connecting my symptoms with meds.
Rose, what are benzos and what are they for?

Rosebud I laughed when I read your post. I believe we are on the same roller coaster, if I knew where you were sitting I'd join you. The smorgasboard behaviour happens to me too. A little of this and a little of that. I really must try the Mucuna, after all I have to keep up with the rest of you. I am willing to try anything, who know we might stumble on something that really works!

"benzos" are benzodiazapines. Tena just posted a list on one of her threads. They were originally developed for seizure problems and many are sleeping pills. CS is the real expert in this dept I think. I don't know what other uses they serve, BUT clonazepam (generic name) is very common for people with PD. I take one of those at night as a sleeping pill. My personal favorite is Clobazam as it will stop my tremory legs and get me down from the ceiling in 20 minutes. I saw them on Tena's list, but no one in the states seems to know anything about them....The brand name is Frisium. They are my salvation especially if I have had too much sugar. They are considered addictive, and like all meds become less effective the more you take. So I treat them with the respect due them.