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Old 06-20-2007, 02:41 PM #1
Virginia Therese Virginia Therese is offline
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Default PD Tremor dominant

For those of you who may be tremor dominant...or, even just those whose symptoms include a tremor...I would appreciate some input as to what medications seem to work best for you. I realize that this is an individualized disease...that no two people respond in the same way to the various medications...but, I feel that there just may be something that you might say that could be of help to me and my pwp. She has been dx'd for approximately 10 years and, until very recently, has been able to control the tremor with medication(s). Initially, she took Mirapex which proved to be a very good medication for her in all respects...alleviated the tremor...in fact, eliminated it...BUT, she developed the obsessive/compulsive side effect experienced by some so that her neurologist titrated her off Mirapex. She had been taking it at, what I believe, is the maximum dosage, i.e., 4.5mg. daily. Her neurologist then prescribed Sinemet (25/100 mg. 3 times daily) which "worked" fairly well to control the tremor, but eventually resulted in the unwanted side effect of dyskinesia. She had also been taking Comtan along with the Sinemet to try to increase the "on time". Currently, her neurologist is attempting to "find" a good regimen of medications (i.e., if there is such a thing), and Doreen is now taking 1/2 pill less of the Sinemet (which eliminated the dyskinesia), but the tremor has become more pronounced...to the point where she got absolutely no relief from the tremor at all for about 3-4 days last week. This was frightening for her...to think that nothing seemed to be working to relieve the tremor. I should mention that, in attempting to find a good regimen of "meds", her neurologist had added, a short while ago, low doses of both Cogentin and Parlodel (I believe this is within the "family" of agonists)...all very low dosages of all her medications. His goal is to eliminate as many of these medications as possible once he is able to detemine what "works" best for Doreen...he agrees that she is taking too many medications. My own feeling is that she is taking so many medications that it seems it would be very difficult to know exactly "what's doing what"...and all the medications are at such a low dose. I realize that her neurologist does not like titrating up quickly...but, I am at a loss as to what his strategy might be with all this. We will see him at the end of this month and I thought if I could glean any information from people, here, that I might present to him, I would like to do that. He is very open to suggestions...not a "haughty kind of guy" at all...and so intent on helping his patients...always allowing Doreen to be an active participant in her care so that any suggestions that I may "bring" to the next visit will be given consideration. I apologize for the length of this post...even for the somewhat disjointed/disconnected presentation of my thoughts. If you are able to decipher/discern these thoughts and have any suggestions, I would greatly appreciate your input.

Thank you...
Therese
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Old 06-20-2007, 02:59 PM #2
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Default dyskinesia........

is usually cauused by too much sinemet. Try a half a 25/100 x 3 times/daily and see what that does. Doreen might need more than 3x daily at a half pill strength.

Essenital Tremor has been eliminated as a possibility??

Charlie
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Old 06-20-2007, 03:54 PM #3
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Default Thank you, Charlie

Thank you, Charlie, for your very prompt response. You asked if Essential Tremors had been eliminated...yes...two neurologists...approximately ten years ago gave a definitive "yes" to PD. If I understand you correctly, Charlie...you're suggesting a lower dose of the Sinemet, i.e. 1/2 pill taken more frequently throughout the day rather than the scheduled 3x's a day. That seems to be such a sound suggestion, Charlie, since the Sinemet usually DOES "work" but has the dyskinesia side effect...so that if the Sinemet is taken in a lower dose each time, it would seem to make a lot of sense that there probably would not be the dyskinetic side effect while at the same time, she would have a degree of concentration of the Sinemet "working". I THINK I've understood you, Charlie, and I want to thank you for your input. I most definitely will present this as a possible solution to Doreen's present problem when we see her neurologist at the end of the month. I wonder why I didn't think of this, Charlie!!! LOL...but, then, that was my prime reason for posting the question...I had no solutions...thank you so much....

Therese
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Old 06-20-2007, 04:08 PM #4
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Default Thank you, Charlie

Charlie...this may be posted twice. I replied...saw my reply posted...then, it disappeared...so, I will attempt to restate what I originally wrote.

First, thank you so much for your prompt response. If I understood correctly, Charlie, you suggested that Doreen might need to take the 1/2 Sinemet, 25/100, more frequently throughout the day rather than the scheduled dose 3x's a day only. That seems like such a logical solution, Charlie. Doreen would then have the benefit of a degree of concentration of the Sinemet and, in all likelihood, would not have the dyskinesia at the lower dose. That just seems to make so much sense, Charlie. I will present this to Doreen's neurologist as a possibility when we visit him at the end of the month. Why didn't I think of this, Charlie? That's precisely the reason that I posted as I did...because I had no solution! Thanks again, Charlie. Oh, and yes...Essential Tremors was ruled out by two neurologists approximately ten years ago...a definitive "yes" to PD...

Therese
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Old 06-21-2007, 03:44 PM #5
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Default Agree with you Chasmo ...

my Neuro has been saying since seeing presentations at the last world PD conference, that a little (meds) and often is the best way to go, removes the peaks and troughs of dopa build up.

Neil.
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Old 06-21-2007, 04:23 PM #6
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Default Thanks

First of all may I say thank you for all the help we have received through this site.In a questionaire I filled in for the Parkinson's Society(U.K) I mentioned this forum as a main source of information.AND it is questions like this and the replies that make it so informative.My husband is tremor dominant so I read threads like this with interest.
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Old 06-21-2007, 06:59 PM #7
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Default Thank You

Thanks to those who responded to my post...Charlie, Neil, EnglishCountryDancer. I am very anxious to present this to Doreen's neurologist when we see him at the end of this month. Small amounts of Sinemet more often for the reasons given just seems so logical to me. I will let you know the outcome of the visit and the "neuro's" response. As I mentioned to Charlie, this "neuro" is usually most receptive to any ideas that we present...most of these evolving from responses to posts here at this forum. As you said, ECD, the questions and responses, here, are so imformative and helpful. You said that your husband is tremor dominant. I am curious about the medication(s) that he takes...dosages, etc. There just might be something that you can tell me that will be helpful...I would appreciate any input that you may have about this, ECD....thank you all...

Therese
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Old 06-22-2007, 05:29 AM #8
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Default liquid sinemet

my Dear friend Nikki O'Brien takes her meds on an hourly basis. Before she started doiing this, she was in a wheelchair. Now she is a fitness nut with "washboard abs" who does gymnastics!! (she also owns a popular bar in Canberra Australia) (I think I'm in love...LMAO!!)

getting back to the point..... I think that this is the way to go for many PWP's because it eliminates the "dopamine spike" when taking sinemet. UNfortunately many neuros do not know or beliieve in this method.
Nikki mixes hers with juice, and take it a sip at a time.

I think this is the answer for those with dyskinesias.

Charlie
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Old 06-22-2007, 11:58 AM #9
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Default Not Essential Tremor.

My husband's Primary physician (G.P)insisted for 18 months that my husband had E.T and we had to pay to see a neurologist who specialised in movement disorders for a diagnoses that is how tremor dominant he is.There are other signs which the G.P did not pick up.He is on Requip 4mg, 4mg 4mg 1mg and supplements provided by ourselves.The tremor is still there and quite pronounced on occassions but he is as yet still able to do all activities he enjoys and we count our blessing.We have approached the neurologist about medication that would target the tremor as he has to stand in front of the public quite often but we have not had anything suggested.We just now think that when people can see he is competent at what he does if they are concerned about his tremor that is their problem.We count our blessing.
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Old 06-22-2007, 03:18 PM #10
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Default Charlie and EnglishCountryDancer

Charlie...the more you speak of the "less more frequent" approach to Sinemet, the more I see the logic in it, and, as I already mentioned to you, we will present this to Doreen's "neuro" at her next visit.

ECD...thank you for your response about the medication and dosage that he takes. Doreen was initially taking Mirapex...same class of drugs as Requip...and it "worked" so well for her. If it had not been for the obsessive /compulsive side effect, I can readily say that this was a good medication for Doreen...she felt "all-round" very good and it all but eliminated the tremor. As with you and your husband, we, too, count our blessings that to date, she just has the tremor which, at times, is very annoying, but not debilitating...and for this we are grateful. Of course, it has recently increased to the point where it sometimes goes beyond "annoying" in that she works with an ENT cancer specialist as a medical assistant and shes finding that it's somewhat of a problem when she's handing the various instruments needed when working with the doctor...he doesn't see it as a problem, but Doreen does. Her "neuro" has always said..if the tremor ever DOES interfere with her work, then, it would be time to try to find something that will target it without the side effect of dyskinesia which she has experienced taking Sinemet. That is where we are right now...trying to find something that will at least alleviate the tremor without risking the side effect of dyskinesia...not an easy task. This is the reason that I think that Charlie's recommendation seems so logical, i.e., less more often...so, we'll see. I feel that, from what we know about the other symptoms of PD...if we were to have a choice of symptoms, we would opt for the tremor...seemingly a more difficult symptom to treat, but certainly a less debilitating symptom. As one of the doctors at"Ask the Doctor" has dubbed it...tremor is a very "moody" symptom.

Thanks again, ECS
Therese
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