[Jim091866]

Hey I'm looking for anything relative to levodopa toxicity. Maybe a moderator or some of you with a bit of experience can help here. The reason is that I saw the MDS today. As you may recall from an earlier posting he told me that my PD was psychological in nature and that the symptoms were in my psyche. He did not feel that I had true rigidity and scored me an 11 on the PD rating scale. That was about 2 mos ago. Today upon my visit he entered the room and stated, "I want you to listen to me, because I am going to say this for the last time." "Your symptoms are not that bad because of the PD." "This is in your brain, you take the pill (sinemet) and you feel better." "It's like a sort of placebo for you." He stated he did not want to follow me further because I would be taking the medication above the levels he would like me to be on and that the DBS procedure was in his words "a waste of resources in my case." I now take 2 sinemet 25/100 every 2-3 hours. His insistence is that the DBS is placed correctly (he was not the surgeon) and that it is functioning, I should not need this much medication. My view is that, it is what it is- I haven't been able to cut down but I don't have the dyskinesia as bad or at all since the DBS. He felt that this was not in fact how DBS works- it will not affect dyskinesia, control it or worsen it, only the PD symptoms will it affect. The dyskinesias are drug affect. So he agreed to see me once more if I follow his regimen. one sinemet 25/100 every 4 hours, at most 5 a day. He says that I am eventually going to have effects from the toxicity. Which manifest themselves as paranoia, hallucinations, even to the point of being violent in that I am having deluded thoughts that people are plotting against me, etc. and he relates that this could be as bad as I attack my wife thinking she is going to harm me!! I am very depressed regarding this. What kind of outlook do I have if I am going to be facing this or should I be back in my powerchair, walker and be stumbling around and falling because my sinemet is not where it is working for me. At the dose I was taking I was on 1,000 to at most 1,600 mg levodopa a day never more than that, and often less because I frequently nap during the day at being so darn worn out. So I miss a dose or 2. Adding that I often take 2 each dose in the morning then end up dosing down to sometimes 1 at a time even every 3 hours if I feel I am still on. If I go until I am off it is NEVER more than 3 hours in between. My wife says that if it gets to that where I am not in touch w/ reality "that's it for me." Yesterday I was walking, taking the dog out, etc till I went to bed because I took the meds as I felt they should be done. I am not looking forward to tommorrow morning when I start this new schedule but I assured him that I would give him a chance. So we'll see. Do any of you know of any evidence of levodopa toxicity at this level? I apologize if this seems run on or is hard to follow. I tried my best. Thanks

[Jim091866]

I counted my latest refill I've averaged 12 sinemet 25/100 since Nov 24th. So I'm right where I thought I was, nowhere near 18-20 a day which I was worried about. I guess I just have to see where this leads. He'll see me in another 3mos. I'm not the doc so it's a matter of time. I wonder if there is a point at which my DBS willl "kick in" and I'll all of a sudden be on, I don't think so, if it's not on now with the meds it sure as hell isn't going to jump to on by itself. But then again sinemet for me is just a placebo and this is all in my head. So ya gotta wonder where in the hell is the reward aspect of this if this is psychological. Sympathy from others?, yeah right. I'm not getting rich, getting high from it, it's not getting me any press and about the only thing I can say is that I don't have to do anything tommorrow-even if I did, I COULDN'T.
So the object here is to stay alive for one more day because if I die my wife loses my benefits/income. No biggie, I just lay on the floor-where I'm comfy in front of our TV, with my dogs-2 labs and a poodle and not play with any power tools or go near a ladder!! Whatcha doin for the next 15-20?
Years! 'cause I'm off. No, I'm not suicidal. My "friends" wonder wow, you don't have to work, must be nice! Yeah, it's great.

[Jomar]

Hi Jim,
All I can really add is that my sis in law had bad dyskinesia "spells" last summer and hers was probably due to meds or a mix of meds.
She doesn't have PD or a clear dx of anything, just a mix of weird sx that drs were trying various meds & combos for.

I hadn't seen her for over a year and at Thanksgiving she was seeming to be doing pretty well.
But they live in another state and she and my bro were split for awhile and just got back together -- so i don't know if she is on or off most of those meds now or not.

I just wanted to mention her story, I think she did go off many of the meds because she lost her ins coverage for awhile.
In her case it seemed to work.


PS-
We do have a SOS forum { Survivors of Suicide } if you ever have the need to talk about those feelings.
http://neurotalk.psychcentral.com/forum29.html

[Ronhutton]

Hi Jim,
Hang in there, things are not that bad. Yes, levodopa can form toxic compounds, but there are loads of case histories where people taking it for very long periods, can still function quite well. Prolonged use will generally give you dyskinesia, I have been taking it for 18 years now, and yes dyskinesia is a problem, but not one you can't take in your stride.
You are taking a high dose, at an average of 1600mg. The max dose in the USA is recommended at 1200mg although in some countries it is 1500mg See
http://journal.medscape.com/viewarticle/488542_21
It might be worth getting your settings checked on your DBS, you should have been able to cut down your sinemet more.
Ron

[Jim091866]

Thanks Ron, if you'll notice in the above posting, I went back and counted my pills, I've been taking an avg. of 1200 a day. Thanks, I saw Dr. Hauser years ago. Talk about thorough!!!

My wife and I feel that I need to be taking the least amount of drug to give me a good quality of life, obviously. I know that I can cut this to 1 every 3 hours with a comtan, yielding about 6 a day. This guy doesn't want me taking comtan, just the sinemet and wants to cut it to 5x a day. At that rate I may as well not get out of bed. Not to mention the stress that he added about "I'm not going to see you any more.., etc." and the symptoms he described to my wife which had her on the verge of tears. Thanks though.

[lou_lou]

Originally Posted by Jim0918

Thanks Ron, if you'll notice in the above posting, I went back and counted my pills, I've been taking an avg. of 1200 a day. Thanks, I saw Dr. Hauser years ago. Talk about thorough!!!

My wife and I feel that I need to be taking the least amount of drug to give me a good quality of life, obviously. I know that I can cut this to 1 every 3 hours with a comtan, yielding about 6 a day. This guy doesn't want me taking comtan, just the sinemet and wants to cut it to 5x a day. At that rate I may as well not get out of bed. Not to mention the stress that he added about "I'm not going to see you any more.., etc." and the symptoms he described to my wife which had her on the verge of tears. Thanks though.

you should go to a specialist in another area,
I had a firm dxd had been seen by many top neurologist around the USA,
because I traveled to help PRO which is in Palm Dessert CA.
I went home for a check up - but my regular Neurologists was out of the country - I saw a woman Neurologist who seemed she wanted to prove some type of point?
she said without any test -!
that I did not have PD - that I was too young for that nonsense,
told me I had Mutiple Sclerosis, in which she took me off all my drugs!
I had to go to the ER because she took me off / cold turkey [a benzodiazepine]
I had to call my great Dr.in LA. CA. -he called to tell her to put me back on my prescriptions that he had me on -
some doctors - should not be doctors, this lady doctor is no longer practicing medicine - as a result of doing this same stunt to too many patients...
go see a specialist - please...

[jcitron]

Jim,

I agree with CTena Louise.

Please go see another specialist. Could there be a problem with your DBS? I mean the device may be installed in the right place, but perhaps it has a bad connection. I don't know how it's connected, but I worked as an electronics technician for many years and by the sound of it, it appears that there is something a miss here.

My first neuro said I had focal dystonia and refused to look at any other symptom. I finally got a second opinion at a better hospital, versus a local neurological clinic, and the diagnosis was quite different.

Good luck, and try to stay positive. Think of all the good times and good things that you can do. Try to get involved in a hobby or something else to occupy your mind rather than dwelling on the symptoms Please seak help if you are having really bad thoughts about harming yourself or your family.

John

[Jim091866]

Thank you to all who have replied. First of all I want to say I am in no way, shape or otherwise suicidal or down regarding this. It was just a huge blow to have him be so direct with his remarks, mostly for my wife. We are both afraid of the long term effects he mentioned. I just don't feel that I will have any "on" time with this new schedule. He wants me to take 1 pill every 4 hrs. I can do every 3 hours but that is with a comtan and he doesn't even want me to take that. I have no dyskinesia, no tremor and have not had any adverse side effects (at least as far as we're concerned) of the medication at the dose I was at. Again prior to yesterday I was doing 1 1/2 every 2 hrs, 1200 mg a day. Back in September I tried comtan and was able to do 1 every 3 hrs. I am since "in the hole" with my meds so I can't get the comtan. It's about $200.00 a month.
I get new drug coverage in Jan. so we plan to
1. Give this a try.
2. Work on getting me to Tampa or Gainesville, (Centers of Excellence.)
3. Maintain as little medication as possible. Get back on the sinemet/
Comtan regimen once I get new drug coverage.

I feel that I was not overdosing my system, I have not had dyskinesia since the DBS. I was not outside the max doseages, just above what they felt I should be taking. I had a regimen that worked for me. without the comtan its gonna have to be every 2 hours. Give me the comtan and I can cut that down. It's not like this has some sort of prize for who takes the mosts meds, it's a pain. I had a QOL (quality of life) that I was happy with. Now I was not able to fall asleep last night(too rigid). Thanks. Lots to sort out/lots to say. No energy to do so.

[Jim091866]

After I left the office yesterday ( I had taken meds at 12:00) he wanted me to go every 4 hrs. Soooooo, I waited until it was 4 hrs. to take any other meds, took 1 sinemet as directed. I think I made it this far due to the meds in my system but I was pretty bad off at 4 hour mark. I was off at 5, 5:30 and never got "on" for the rest of the night including an 8 'o clock dose. I did not sleep all night due to the rigidity in my back and legs. I took another pill at 6 and again at 10 as directed, never having an "on". At 12:30 I was done with it and I took 1 1/2 and a comtan which I had from samples I obtained from ____. I was "on" at about 1:30 and plan on following this schedule 1 1/2 and 1 comtan every three hours for a total of 900 mg of levodopa. A vast improvement from the 1200 I was taking. I have been in contact with Gainesville and we are working ouir way through the process, I am authorized but its the paperwork, etc. Now when I get up there if they tell me I've got my head screwed on wrong I'll believe it.