Quote:
Originally Posted by I_Got_it_2
Well I have survived (so far) the withdrawal from meds. I continue to take only (1) 23.75/95 Rytary starting about 6:00 in the morning along with one 81 MG aspirin and 300 MG Ubiquinol (reduced form CoQ10) and a cup or two of coffee. I have discovered it is better to take (1) 23.75/95 Rytary every 1.5 hours and have been on that regimen for weeks. But just as I think I have passed though the eye of the storm WHAM! I get another setback.
For the last month my regimen above has resulted in fairly consistent baseline results. I come "on" and stay on as long as I don't eat and have minimal interaction with others. Once I get outside my comfort zone I begin to deteriorate albeit moderately. As long as I am in my car/house it is fairly well tolerable, even to the point I felt comfortable to start experimenting. Let me tell you of my baseline existence under the above regimen.
The "ons" are good and strong and somewhat dependable. They were however tending to give me tight muscles and jerkiness making it difficult to walk normally, eat normally and drive. I was also experiencing restless leg syndrome where in the night my right leg would simply move in a twitching motion, sometimes for hours. Sometimes it was pleasant being "on" even though I had not been medicated for 5+ hours. Other times it was irritating and kept me awake.
My main problem appears to be under and over medication. The frustrating thing is how simple the fix appears to be. It is right there in front of me. If you are under medicated, take more. If you are over medicated, take less. Yet this is where my problem lies.
As I stated above I thought I had reached a point where I could experiment, after maintaining a baseline for several weeks. Until I ate something I stayed on subject to the jerkiness and rigidity which was difficult to tolerate. When I ate something I lost some of the on making it much more tolerable although with some loss of function. So two days ago I decided to change the dosage for the 2.75 Rytary from every 1.5 hours to every two hours.
This went well the entire day and I thought as I retired for the night that I might have discovered the answer to my problem. After going through the day with only very mild loss of function I thought yesterday was going to be similar. But I was wrong. My first dosage was at 6 AM but I returned to bed and slept until 7:30 AM. I took my second Rytary at 8 AM and had some apple slices and coffee. Then I uncharacteristically set about cleaning the kitchen for the next 30 minutes and began to notice it was getting warm in the house. I checked the air conditioning and found it was 70° then realized I was sweating mildly so I sat down in my chair. And then the off came rather forcefully. I can only describe it as the traditional sluggishness accompanied by awareness that my heart is pumping with some unnoticed exertion. Truthfully I do not know if this is my imagination brought on by my experience with the statins or it is a real. This is a curse that accompanies the statin scare from several months ago. It is also accompanied by a strange feeling in my head, sufficient to make me think something is happening, a mild alarming sensation.
My immediate dilemma is what to do, what is causing my problem now? Do I have a cold, or will the medication kick in at any moment? Should I increase the dosage and ruin the experiment? Am I overreacting? Was it the apple slices? Cleaning the kitchen? The coffee which I had that morning but hadn't had for several days? How frustrating not to know the direction I should take! And so I decide to increase the dosage of medication. This proves to remedy the problem and yet I still have a full day of extraordinary ons and offs, going to bed at 11 PM last night and getting up at 2 AM. I don't know.
I guess I will experiment some more next week. I will report if there is any change. For now I just suffer the frustration of going it alone, uneducated and unqualified but knowing that nobody else seems to care in the medical community, specifically the pharmaceutical companies. It just seems like such a minor problem that could be remedied.
Jim
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not to defend the drug companies but they have tried to address ON/OFF with long lasting agonists, especially the REQUIP AND MIRAPEX XL and NEUPRO PATCH. Any drug that you take orally and is affected by food, protein interference, stomach emptying is always going to have variablity in it's affect. that's why there's a sublingual apomorphine, inhaled l-dopa and extended release amantadine in the pipeline so we can deal with OFF better.. it sucks, i agree, especially if one can't tolerate/afford these longer lasting drugs.
i have one suggestion, start the day with one simple 25/100 or 1.5 tablets, that will get carbidopa into your blood which is just as important as l-dopa. when you start to go off, take another 25/100. if you don't come on in 45min, then there is something wrong with your digestive system. you might have to take a 25/100 every hour but at least take it for your first 2 doses of the day as a "diagnostic" tool. after you come on with 1-2 doses of 25/100, then take the rytary. i do this myself with CR, after the first (2) 25//100 i'll take 50mg with 200mg CR and will get 3-4hrs of on time. i'll repeat the pattern, i don't like taking (2) 50/200 in a row.
protein is my enemy too but i try to eat a breakfast and think i have a better overall day, i find boxed soups like tomato, sweet potato are low in protein and i'll add some veggies and add a 25/100 to my normal dose if i don't come on or just accept being off after eating, if i lose self-control and eat a cup of yogurt i know it will be 2.5-3 hrs before i can take C/L, any sooner and zippo.
Which is why i bit the bullet and got into the DBS line. at our stage no matter what we do C/L is not going to do the job. either not enough dopamine receptors, oral l-dopa gets destroyed too fast in the brain, dopamine receptors get over/under sensitized. remember, cells are responding to changing l-dopa concentrations by changing enzyme levels of enzymes that mfg/breakdown l-dopa at unnatural levels so they're alway undershooting/overshooting.
fwiw, for those with intolerable OFF/ON and can't tolerate or can't get the adequate relief from agonists and can't/won't do DBS, there is the DUPDOPA but hopefully neuoderms L-DOPA pump which doesn't require surgery will soon be available. interestingly, you get higher doses of l-dopa than you do orally but less dyskinesias. and if you go off the continuous feed l-dopa and back to oral and the benefit lingers.