[schwad01]

Asking for opinions

My PD started very asymmetric-on my dominant left side--arm>leg-over the past 7 years I have gone up on my dopa--presently q 2.5 hour Stalevo 100- I take my first dose at 530-6 am and my last dose approx. 630 pm--though my symptoms remain asymmetric, my l leg is now worse than arm during off periods. Over the past several months I have been waking up with very "stiff" bilateral lower extremities with frequent am dystonia in my right foot-then followed by my left foot--I have tried to take Parcopa 50 30 min before getting up--and now take 50 levodopa/carbidopa- with my 100 Stalevo in the morning and get out of bed 20 minutes later. The latest problem that I have is intermittent tremor of my left foot/leg- (my good side)--it is quite frustrating--and getting worse--as my morning bilateral stiffness seems to be getting longer-- and I don't know if this, which I think is dystonia, is "off" or "on" --I hope someone will help!

[soccertese]

1. have you tried old fashioned 50/200cr carbidopa/levodopa before bedtime, 1 to 2 tablets?
supposedly takes longer to kick in and lasts longer if you take it with some "fatty" food, maybe a piece of avocado or guacamole? but having it last more than 5 hours, don't know if it will.
2. carbidopa and levodopa are not absorbed in the mouth so taking parcopa is just wasting money imho, it was developed for those who have trouble swallowing pills or for taking when out of the house and/or working and not able to drink.
3. sure sounds like you are under medicated.

[moondaughter]

Originally Posted by schwad01

Asking for opinions

My PD started very asymmetric-on my dominant left side--arm>leg-over the past 7 years I have gone up on my dopa--presently q 2.5 hour Stalevo 100- I take my first dose at 530-6 am and my last dose approx. 630 pm--though my symptoms remain asymmetric, my l leg is now worse than arm during off periods. Over the past several months I have been waking up with very "stiff" bilateral lower extremities with frequent am dystonia in my right foot-then followed by my left foot--I have tried to take Parcopa 50 30 min before getting up--and now take 50 levodopa/carbidopa- with my 100 Stalevo in the morning and get out of bed 20 minutes later. The latest problem that I have is intermittent tremor of my left foot/leg- (my good side)--it is quite frustrating--and getting worse--as my morning bilateral stiffness seems to be getting longer-- and I don't know if this, which I think is dystonia, is "off" or "on" --I hope someone will help!

Too much or too little..............hmmmm or maybe a too much AND too little. I haven't had much luck in finding fixed answers to questions like these because balance is not a static state in the body. If it were diagnostic tests would be more conclusive earlier in dis ease processes I think. But you do have a dillemma....and just coping with your conditiion is plenty on your plate.

Far be it from me to give you advice..but, I can share this with you.. When I started taking mucuna with the C/L I was suprised when I decided to try cutting the C/L by half and the difference was less dystonia, less dyskinesia and longer therapeutic effect.....the mucuna revived the vitality I once was receiving from the sinemet whose positive effect had eventually waned. I have been historically very conservative about medication -waited 16 years of tremoring before i started C/L and rejected the agonists- I think they must alter receptor beds somehow-don't really know, but, reading Janice Walton Hadlocks book "Once Upon a Pill" her experience is that the agonists alter the brain in ways that sinemet does not.

I wonder if the brain is plastic enough to grow new receptor beds.....guess I have been sort of afraid of oversaturating them with L dopa. Could it be possible that levadopa therapy in proper doses (and from variious sources - even fava bean pod juice) can habiituate increased receptivity? I say this because I suspect I was not born with a full compliment of dopaminergic neurons (mother took Dieethylstiburol 6 months into pregnancy)and once started on levadopa I was able to relax in ways never before experienced.

I would say to you that you know how your body feels better than anyone....are you exercising ? Where is your locus of control?

Are you feeling that that the Parcopa has any positive effect? Stalevo has entcapone in it yes? How does that make you feel? I know its hard to sor t through al this when half life of these drugs builds up through time....but it would seem prudent to weigh their benefits/other effects now.....Do you like your doc? and if not what are your options? are there other docs available?

Have you considered any complimentary therapies? I think parkinsons te aches me to reconditiioon how I receive the world- to habituate into my parasynpathetc system rather than functiion with adrenalin all the time....help can be found by people who are skilled in the arts that teach this. I highy reccomend you consider doinig some thing that would nur ture and support soome of your needs...massage? chiropractic? meditation? Do you have family and friends for support?


Kind regards and sending good thoughts your way,
MD

[Niggs]

Originally Posted by schwad01

Asking for opinions

My PD started very asymmetric-on my dominant left side--arm>leg-over the past 7 years I have gone up on my dopa--presently q 2.5 hour Stalevo 100- I take my first dose at 530-6 am and my last dose approx. 630 pm--though my symptoms remain asymmetric, my l leg is now worse than arm during off periods. Over the past several months I have been waking up with very "stiff" bilateral lower extremities with frequent am dystonia in my right foot-then followed by my left foot--I have tried to take Parcopa 50 30 min before getting up--and now take 50 levodopa/carbidopa- with my 100 Stalevo in the morning and get out of bed 20 minutes later. The latest problem that I have is intermittent tremor of my left foot/leg- (my good side)--it is quite frustrating--and getting worse--as my morning bilateral stiffness seems to be getting longer-- and I don't know if this, which I think is dystonia, is "off" or "on" --I hope someone will help!

My own experience is that Stalevo is very stable and predictable which is good, BUT, when it runs out I crash ! Before I was on sinemet cr, a lot gentler delivery curve but it's plasma levels were all over the place. I'm in the process of ironing out these peaks and troughs with the dreaded Ropinirole which has been a beast of a drug since dx'd in 2009.
However, I'v noticed the higher dose titration is giving me 'less' grief !! I'v gone from 8mg oct '15 to 10mg then 12mg. I'm now 1 week into 16mg and feel
less 'sh*tty than the 8mg to 12mg titration.
I believe this is because I'm nearing the required baseline dopa level and the probs before are due to fluctuating, partially therapeutic doses. ie undermedicaton.

I'm not a health care provider so please understand I'm offering an opinion but you may want to look at;

24h release agonists to raise your base level of dopa and see if it irons out the dips.
use of sinemet cr on a night time, it's slow release may be enough to tip you back into symptom control..

One other thing I'v noticed is that as my meds have got higher there has been a dramatic worsening of off time. Now this has taken place over a year and I'm certain I haven't deteriorated in that time. I would say for a 20% improvement when on, I'm 30% worse when off.
The off time symptoms are very, very, familiar......They are withdrawal symptoms. For me these include dystonia, urinary changes, rigidity.

Hope this helps and you get things sorted mate.

Nigel