[Virginia Therese]

with a question related to dyskinesia. Before I pose the question, I will note my pwp's daily PD medication regimen:

7 a.m....Sinemet (1 1/2) tabs (25/100
Comtan (1) 200 mg.
Cogentin(1 1/2) tabs (1 mg.)

11 a.m. Same as above

4 p.m....Sinemet (1) tab (25/100
Comtan (1) 200 mg.
Cogentin(1) tab (1 mg.)

Summarizing:
Sinemet..25/100..3x's daily divided
(1 1/2; 1 1/2; 1)
Comtan..3 daily w/each dose of Sinemet
Cogentin..4 daily (1 mg. tabs) divided
(1 1/2; 1 1/2; 1)

Until recently, my pwp has been tremor dominant w/SLIGHT dyskinesia..never both simultaneously. Her neurologist's aim was to get the tremor under control so that it would not interfere with her work as a medical assistant to an ENT cancer specialist which requires a steady hand while assisting him with various procedures. The medication regimen, above, achieved this aim to the point where she had little or no tremor. The dyskinesia remained minimal and tolerable. However, within the past week or so, the dykinesia has increased dramatically, being present almost the entire day and much more pronounced in that her ENTIRE body is dyskinetic...in the past, it affected her hand, arms, and feet only. I guess the question I would ask you is: "What might be causing this sudden change? Do you detect something in her present "med" regimen that COULD provide an answer?"I realize that anything anyone might be able to offer as a possible explanation would only be his/her own experience, but I feel that we can and DO learn from others' experiences...and sometimes, what is learned results in better information...better medication regimens than those coming from the neurologist. As I have mentioned in the past, my pwp neurologist is always open to suggestions. We have an appointment with her neurologist at the end of this month, and I felt that by posing my question, here, there just could be some valuable input that we could bring to this visit. It is the fact that, now, the dyskinesia involves the ENTIRE body that is so puzzling. I should say, too, that I am aware of the possibility/probability of the dyskinesia being related to the Sinemet (not enough, too much, wearing off, peaking, etc). It also seems to me that my pwp is not taking an extremely high dose of Sinemet, but I've wondered if anyone has ever taken this same dosage (perhaps even higher) BUT has taken a lower dose more frequently throughout the day.

I realize that your response will necessarily have to include the fact that everyone is different...both symptomatically and as related to the medications..but, I felt I wanted to pose my question with the possibility that there just might be something that someone, here, offers that could be of value to us. It may be that my pwp may have to make a "choice"...which would she "prefer"..the tremor or the dyskinesia...but, if it's at all possible to find a balance of the right "meds", maybe...just maybe something that someone here might suggest will bring about that balance. As always, thank you so much for any/all responses you may choose to make...very much appreciated.

Therese

[lou_lou]

well - I am not a doctor -so I cant give you refills -but what I can help you with is that I have the illness.
it sounds like too much meds -sinemet/ levo dopa / carbi dopa
or not enough...
more than likely too much- to deactivate hyper dyskenesia -give them something to eat, possibly -organic almond butter on organic crackers,

or
if he/ she~ is taking an agonist w/ Levo dopa /carbi dopa
too much dopa! dopa is addictive...el dopa the first PD med.

have you ever read the book written by a Dr. -called -
OVERDOSED IN AMERICA! its an eye opener for many...

I was overdosed
the meds will/ can causes more harm than good,
I take less meds now than at the beginning of the PD drugs onslaught given to me by a KU doctor... huge ego!

... they will give you anything you ask for it by name referral now. ie
-Drug TV commercials ?

about 10 years ago, the doctors would have
thought that I was an addict or that I was nutz...

but big pharma likes big RX loads...I used to work in the pharmacy.

so - if it were me / I would take the pwp to a holistic doctor, have blood work done, to see what vitamins and minerals are lacking in their body.

sinemet/
instant fizzy drug parcopa has aspartame in it, if you want your pwp to get better-tell the doctor no more parcopa!

phenalalanine = aspartame= equal =poisoning

PS - how long have they taken comtan?
whoooowee - that stuff made me shake for 3 hours, I should have eaten protein quickly...

[Stitcher]

Theresa, the only medication that I am aware of that treats tremor is Amantadine / Symmetrel®.

It works well for me.

As to why the change...PD is so unpredictable, but I would guess that maybe her stress has been increased at work, or she is stressed about hiding her tremor and dyskinesia from the doctor. That in combination with the Sinemet. I am only guessing here.

[Virginia Therese]

Tena and Carolyn for your prompt responses.

Tena...interesting that you said that Comtan made you shake for 3 hours. Just today, I questioned my pwp (Doreen) about its side effects. I was aware that this had been added to the Sinemet to increase the "on time" of the Sinemet, but, I was curious, now, if Comtan might be the culprit..and yes, shaking and no control over muscles.. CAN be a side effect; however, she has been taking Comtan for quite a long time, now...but, I suppose a medication can do a "flip flop" at any time and it just could be that this is the "offender"...she will discuss this with her neurologist...thank you for the "Comtan alert" and your other input. Interestingly, too...just today...Doreen went to Barnes & Noble and Border's in search of Dr. Abramson's book, "Overdosed in America"...neither store had it in stock...said they could order it but was told that an updated version is due to come on the market in December. We had read some excerpts of this book and customer comments on the internet today and found it to be very enlightening...made me even more angry with big Pharma and its interest in and liking of big RX loads, as you referred to it...thank you, again, Tena....

...and Carolyn...the thing is, Doreen's tremor seems to have been controlled with the Sinemet...but, it's the sudden emergence of the almost all-day, full-body dyskinesia that has us puzzled. As for the stress as it involves her work, Doreen couldn't be working in a better place nor for a more understanding doctor. She very early on decided to be "up front" with the doctors and her coworkers...decided that the stress of"not telling" was more than she needed or wanted. She is so fortunate to be in a place where everyone cares for and about her so much...BUT there have been other stresses recently that COULD possibly have some bearing on all this...but, one would think that the stress would bear more heavily on the tremor which is almost non-existent, now...it's the sudden, all-over body dyskinesia all day long that is so difficult for her, now. Thank you so much, Carolyn, for your response...thank you both...I really appreciate your taking the time to try to help with this...

Therese

[reverett123]

Do I understand that no new meds or changes coincided with the dyskinesias?

If so, then obviously the change is in her reaction to them. As I recall, they can be a sign of wearing off or coming on both which makes a heck of a mess.

I think I would try to even things out as much as possible by using the old trick of crushing the day's supply of Sinemet (not CR) into a bottle of water and drink it at an hourly rate to keep blood levels as stable as possible. Then start tinkering with the others once you have that information. Good luck.

[made it up]

Hi Therese,
Sounds like Doreen isn't on a very large amount of Sinemet so I'm wondering if a smaller amount of Sinemet more frequently might help with the dyskinesia.

Dyskinesia is more common amongst young onset PWP and can cause a real dilemna when we weigh up whether or not the benefits of more sinemet (which can cause an increase in dyskinesia) is more beneficial than less.
Does she have clear on and off times or is tremor the main problem?
Perhaps she might try 1 Sinemet to kickstart the day at 7am followed by 1/2 a tablet an hour or two later and subsequent doses 1/2 but still a daily amount in total of what she's is currently on?
If you try this buy a pill cutter for a more accurate dosage each time.
Regards,
Lee

[lou_lou]

the problem with PD is twofold
the meds can either work -stop working after awhile which I believe is due to taxing the body of minerals, like potassium

folic acid
I take these also-

B-12 (methycobalamine) 5000mcg
omega 3 - I take coramega -
ashwagandha
motrin
calcium
eat all organic if possible
drink nothing out of the tap!

make -up *organic* -
stay as peaceful as possible...stress makes your pH balance become acidic
acidosis -deadly
massage therapy -accupressure, calming music - there is also
a brainwave music -dr. jeffrey thompson

there is a way to spiral back up -I know this, unless it is close to a premenstral cycle for doreen -is the only time medicine -can get screwed
for the hormones - I believe block our transmittors
PMS and PD aren't pretty!

so try to see if you can get just - SR. leva dopa carbi dopa and Cr leva dopa /carbi dopa
do not drink big gulp's aka a gallon of pop because it can cause the body
to become acidic and cry out for good water- only water can flush the systems - I drink fiji water, I splurge -because I will do anything to stay away from the doctor, and if you drink tea - you can still dehydrate the body.

the main thing the people of the US have in common is we eat crapola
a Big Mac and fries w/ MSG
pizza hutland - I could get ill thinking about the oreo cookie pizza/pie?!
chinese food -msg -excitotoxin -dr. blaylock
here is a small 6 minute preview that is online w/ permission and with dr. blaylock's contact web address:

http://www.youtube.com/watch?v=lqIFDoOwSFM

research everything,
I used to fill scripts and the doctors accidently are actually human, and I had caught a few scripts from going out to the people
who needed meds -that were filled with the wrong strength of the drug they used?!

only because I remember color - which equal different strengths of meds.

check on the comtan -side effects...and adverse reactions
http://www.rxlist.com/cgi/generic/entac_ad.htm

the other drug she takes
http://www.rxlist.com/cgi/generic/cogentin_ad.htm

also a sumation of "Overdosed America"
http://www.medicalconsumers.org/page...edAmerica.html

the history -of poison sweetners
please research everything~
http://users.westnet.gr/~cgian/asphistory.htm

[Virginia Therese]

who responded to my post asking for help for my pwp...Tena, Carolyn, Reverett, Lee (if I've omitted anyone, I apologize). First, I need to say how nice it is to find people who are so eager to help...it just makes me feel better knowing that others are trying to help me.
Reverett....no...no new "meds" or changes coincided with the enhanced, ENTIRE body dyskinesia, but, there was a new stress factor, i.e., it was discovered that Doreen had torn a tendon in her ankle which was very painful(though no pain medications given) and just trying to find an orthopaedist who seemed to know what he was doing was a "trying" experience...then, having to have a made-to-order boot-like brace made which she must wear for at least 8 more weeks when the ankle will be re-evaluated...so, yes...there was this stress factor, but no new "meds".

...and Lee...no...Doreen seems not to have clear on and off periods...and the tremor (which had been her main symptom has literally become almost non-existent with her present regimen of "meds" which was exactly her neurologist's goal...to eliminate...or at least alleviate the tremor so that it did not interfere wih her work. On her present "med" regimen, then, she had little or no tremor with just SLIGHT dyskinesia until the sudden onset of very enhanced and ENTIRE BODY dysknesia. As you suggested...I also wondered if taking the same TOTAL amount of Sinemet, daily, but taking smaller doses more frequently might resolve the dyskinesia problem...just seems that she would then have a constant amount of the Sinemet but a lesser amount at one time that COULD possibly help. It definitely appears that it is the Sinemet that is the "culprit", here.

...and Tena...thank you again for the additional information. I have not yet researched the links that you provided, but I intend to do that before this day is over.

I just want to say, again, how very much I appreciate everyone's eagerness to help me with this...thank you....

Therese

[Virginia Therese]

for listing those research site pages. As I told you I would before day's end, I have read these pages, and I've actually taken notes that I intend to type to bring to our next visit to Doreen's neurologist...and, when he asks where I got this information...who "said so", I'll tell him "TINA"!!! lol...Of course, I found the excerpt of OVERDOSED IN AMERICA extremely interesting, but also, extremely AGGRAVATING...agreed...this is a "must read" book, and we will purchase its updated version due to come on the market in December. Thanks, again, Tena....

Therese

[K.Ibsen]

As I understand it, Comtan makes the Sinemet more potent because Comtan enables more of the dopaminergic agents to cross the blood-brain barrier. So it might be misleading to say the problem is only the Sinemet or only the Comtan. The use of both need to be considered.

I noticed that the medications are only being taken during a span of nine hours during the day. I'm wondering if a different dosing schedule might be something to consider. Have you considered a schedule that would maintain constant levels of dopamine for the whole 24-hour day? For example, undetected sleep disruption can be a factor. For me, regular dosing helps.

Karl