Fiona, thank you for sharing your experience. From his experience, he firmly believe that the increased dosage cause the worsening OFF time. He is talking about weaning from the med and go back to the state of last Oct, namely take the med only when needed. He takes Sinemet 4x per day, 2 tablet each time. He wants to cut the first dose scheduled at 8:30AM. I am getting a little nervous having read about the sinemet withdrawal. I'm need to observe him carefully when he does that.

Hi Laowantong,
I really feel for your dad in this circumstance. Ive been on sinemet only for 5 years, and have had the experience of backing off meds n a clinical setting, and also taking too much (was doing a lot and was wearing off really quick, and increased dose for short period, it was difficult to get back down to previous dose). It seems as though that is a very big increase in meds for your father in a relatively short period of time. If he is going to reduce intake make it very slow, a little off each dose rather than miss a complete scheduled dose, and with supervision from doctor if possible. The more even the dose over the day the better. Reduce a little and let it stabilise, give it time, and then maybe the next week reduce a little again. Slow is better, and supervised is best. I would agree that some of what seems like PD can sometimes be attributed to meds. Like others I am grateful for the better mobility that sinemet gives me, but am very aware that other things 'happen' because I am taking it. Not so sure I think of it as an addictive drug, it is a bit like insulin is for diabetics, that too has its down sides, but the alternative is worse. Something that occurs to me when I read your posts is that most drugs are used on the basis that if you feel worse you take more - sinemet is definitely not like that, and on occasions when I have been advised my my neuro to take more for one reason or another I have backed off again myself because the wearing off and wearing on have become unmaneagable. Also that sudden off's are a feature of longer term PD, and may need managing differently, perhaps with a different drug, rather than more sinemet?

Best wishes to both of you in finding a solution, let us know how your dad is doing.

Lindy

Lindy, he said that he is going to start reducing the dosage starting May 1st. I will certainly keep everyone posted. I hope he can be successful with this endeavor and hope people here can benifit from his experience.

L

Going off the topic a little...

Does anyone find that Sinemet lowers BP? My father-in-law has been on BP control meds for 20 years. He said that the amount of BP meds he needed to keep the BP normal has gradually decreased. He just measured his BP, it was 120/70, and he didn't even take any BP med today...

Just something to share...

Laowantong,

For slow, safe med reduction info, download Janice Walton-Hadlock's book on The Medications of Parkinson's Disease - Once Upon A Pill. There is a chapter on how to safely reduce meds. I've tried it w/ good results. Good luck.

Ibby

Sinemet can lower BP. 120/70 is excellent considering he was on a BP lowering drug. My BP ranges from 96/43 to 108/73.

John

PWP tend to have high BP at night and when lying down and low BP when first standing up or after eating.

EXACTLY. I have been saying this to 3 different neuros over the past two years. I have researched this topic and it is rare anyone successfully gets off it (without surgery) even though the side effects get worse. Addictive? Your damn right, I think it is the most addictive drug out there. I am furious.

I was surprised to see this thread pulled up again, and reread all the original posts and the new ones. I have a few insights that I can share since I first posted this thread. Technically levo-dopa is not addictive...but it can be an unwelcome guest. It is not unlike insulin for diabetics in that it is a replacement for what is missing. The problem with levodopa is that it takes over the brains job of producing its own dopamine. It's what an alcoholic would call an "enabler". It has the appearance of doing good, but robs the body of its ability to produce it's own dopamine for movement, thereby creating a greater and greater dependancy! Dopamine as a neurotransmiter is only one of its uses. The body can rapidly convert it to adrenaline -and many of you have had experiences where something happens, the adrenaline kicks in and your PD is over ridden and you become Superparkie, and could leap buildings in a single bound. Bad news...soon any stressful situation converts dopamine to adrenaline and you become a shaking, sweating, train wreck! I have not been able to walk for about 5 years now when my meds are off. The correct term for what has happened to my brain is "inhibition feedback"
In other words my brain is getting its dopamine for free and does not have to work anymore so takes a holiday to Mexico or whereever and lets the drugstore take care of my dopamine needs. Problem: The body goes on a big party with easily convertable dopamine to adrenaline and you get more stressed, until you think your going to lose your mind. You think your shaking like a crazy person because your tremor is getting worse but everytime you put another sinemet in your mouth it actually gets worse. Next you call your neuro who puts you on benzodiazapines (Atavan, clonazepam, and a dozen more...) These relieve the tremor and the pharmasist says "Oh you are on a SEIZURE medication." What's the clue that something is wrong???? In my case, I used the word seizure with my neurologist and he said.."it's not a "seizure"! There's a lot more to this story, but you'll have to wait for the book. I belieeve I was incorrectly diagnosed, but after 11 years on Sinemet...yes I do have PD. Can you guess where I got it??? Now I'm going to get rid of it!

Rosebud, your story is my story, I have not walked properly, without pain for 5 years either. I was started on Sinemet right from the get go - 11 yrs ago. I forgot the time while typing this and forgot to take my 1400 meds. I feel no worse for it; in fact at 1300 my symptoms came on like gang busters. I was blaming this forum, reading posts that hit too close to home may have made me anxious. I was so out of it I re-logged on and there was your post that just nailed it. I hoped someday I'd find someone who was going through what I have, just the understanding alone, sanity issues, get out and walk and exercise and you will be fine pep talks. Riiiiiiiiiiight!

I also believe I have been misdiagnosed; an innate feeling you must pay attention too. I wonder if we have the same neurologist? He thinks I am difficult (boy there is a story here). Like you I believe I have drug induced pd. At times I do question if I am in denial because l am also a train wreck and wonder why I am still sane.

I have tried to find some type of rehab facility to withdraw from dopamine on my own, still looking, may have to go out of province. I would like to speak with you, this is the most important issue I have. I am pro-active and committed and you seem the same. Two heads are better than one in some cases. I would like to ask you how you are going to accomplish your goal which is my goal. Would you mind emailing me at smithclayriley4@yahoo.ca with a telephone # I'd like to talk to you if you are into it. Or I can give you my phone # if you'd rather.

Bonnie Clay-Riley