Originally Posted by jeffreyn

Bergamotte said: "The doctor doesn't want to roll back the dose increases. He says, 'It's never a good idea to reduce doses'."

I'm not sure I've heard this before. And it definitely sounds wrong.

My copy of the Madopar Pi document (Prescribing Information) uses the term "dosage reduction" (or equivalent wording) 4 or 5 times in relation to unwanted side effects such as dyskinesia, sudden sleep etc.

Do you have access to the MDS neurologist (or his nurse) after each increase in medication? I'd be surprised if they say to keep increasing after you give them the feedback which you've given us.

Maybe it's just me, but if it was me experiencing these adverse side effects, I'd be reducing the medication without waiting for anybody's permission. And I've done just that in the past (for dyskinesia).

Originally Posted by Bergamotte

Thank you, stevem53. I found your post extremely interesting (sorry you had to endure some substandard care). It's encouraging that your appointment scores are improving over time, even if the DBS system is turned off for now. A couple of things:

Yes, the Madopar which is my husband's mainstay treatment is a European equivalent to Sinemet, but it replaces carbidopa with benserazide, which has slightly less side effects. Madopar comes both as regular hard tablets which kick in slowly but have a good "on" time, and as water dispersible tablets which kick in rapidly but don't last quite as long. The morning dose is a combination of both, so that he has levodopa support quickly but doesn't run out of steam too soon. He'll continue on this combo for the morning dose, for so long as we can obtain the water dispersible tablets. They're not always available.

The Exelon patches are rivastigmine, an acetylcholinesterase inhibitor (intended to support the memory). Exelon at 4.6 mg a day does nothing for my husband as far as I can tell. It seems to do no harm, though. The neurologist wants him on it, thinking it MAY be neuroprotective and delay disease progression (no hard proof of that however).

Regarding PD and stress: I completely agree with what you're saying. My husband worked in a high-stress office job until he retired; I would bet that his adrenal glands became huge, having to constantly produce cortisol and adrenaline to deal with low level and high level stress at unpredictable times. I mentioned that he has flushing as a "wearing-off" symptom; maybe, when dopamine goes low, cortisol is produced to try to compensate. The flushing may be from high cortisol.

Since developing PD, my husband loses his memory completely when under stress. For example: He had an appointment at a new doctor's office, but he drove to the wrong clinic. He phoned the receptionist asking for directions to the correct clinic. Although he knows the layout of the town very, very well, he forgot everything he knew about it as the lady gave him directions and landmarks to look for. He was shaking his head and asking, "You're located past the town hall? But where is that?"

stevem53, we'll take your advice and see a psychiatrist, if any psychiatric meds really become necessary. Thank you for that tip. All the best to you too.

Originally Posted by stevem53

I am not familiar with the names of the drugs you mentioned, but my guess would be that they are similar to stalevo, sinemet, or mirapex


I also think he is taking too much, and too much will make you worse..Another thought I have is just because a Dr, or a mechanic, etc, has schools he got degrees from, framed on his wall doesn't mean he is any good at what he does..The neuro that diagnosed me had a bedside manner like an alligator with an abscessed tooth..He couldnt figure out how to titrade me up on my medications..He gave me instructions to take 3 of these per day and set up a follow up appointment..These meds make you nauseated..He did the same thing the with the next 2 drugs that he gave me to try..When I tried that with Requip, I thought I was gonna die..His reply.."I don't know what to tell ya"..My reply was..I do..Good bye!!..Personally, I will dump any Dr who I think should have been a janitor, and I learned a lot about that on this forum board


Psych problems, psych medications..In my opinion based on my experiences, I can share this with you..Stress, anxiety, and depression to pd, is like swallowing a bottle of poison..I have a high stress and anxiety level, and when it hits, it will make my meds stop working in a minute..I take 10 mg of valuim per day, and it doesn't do anything..It's not enough, but I had DBS surgery 7 months ago and I can't change any of my meds until my Dr says I can


There is a psychological element involved with pd..I am sure of it..I think meds can intensify it, and I know DBS settings can cause problems with it as well..Here is something that blew my mind, and I am still having a hard time digesting it..I went to my MDS for a DBS programming appointment..He tinkered around with me for a while to try to get to know my system..While we were ready to wrap it up, my Dr wanted to try 3 more settings, so I said ok..He said ok, I am going to turn your batteries on..And when he did, I swore that I felt the electricity going through my body..He picked a setting and asked me how it felt, and I told him that I felt a weakness above and below my right knee..Then he said that he was going to go one step higher..I got wild dyskinesia that almost put me off the chair and on the floor..Then he said he was going to go one step higher..Both of my legs got so weak that I had trouble standing up, and couldn't move either one of my feet one inch..Then he said that he was going to shut the batteries off, and I felt relived, relaxed..And my Dr told me that he had to tell me something..So I asked him what the problem was?..He told me that during those last 3 settings, he never turned the batteries on..He just told me he did..So basically I reacted to nothing 3 times..He told me that he does that to all of his patients to figure out what we are thinking..So I said, what was I thinking?..And he said that I want all of the benefits of the DBS without turning the batteries on


Well guess what?..I told him that was exactly the way I felt..I was going through an extended honeymoon period, and he told me that I was going to crash and burn soon, and then he said we will start the programming when you do


Well my DBS has been on for one week, 6 weeks after the surgery, and 4 days later my morning meds started taking 3-5 hours to kick in, and the dyskinesia got worse..So I shut the thing off, and it has been off for 7 months, and the leads are treating my symptoms in the absence of stimulation..The dyskinesia is gone, and my balance is starting to improve over the past 4 days, and I am not falling down as much as I was


My Dr rates appointments on a scale of 1-100..1 being the best and 100 being the worst..Prior to DBS my number was 65..After DBS my number was 43 in December..At the end of March, it was 41..Its not much..It's only 2 points, but it is progress nonetheless..I am willing to bet it is lower right now


So my suggestion would be to find him a psychiatrist who is familiar with pd, because dealing with
psych meds is a very delicate and timely endeavor


Best of luck to you