PD Tremor dominant

[therese]

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

[chasmo]

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

[therese]

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

[therese]

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

[aftermathman]

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.

[EnglishCountryDancer]

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.

[therese]

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

[chasmo]

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

[EnglishCountryDancer]

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.

[therese]

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

[steffi 001]

It has answered a few questions for me also,and Chasmo,your replies have been comforting and welcome.
I never considered halving my sinemet tablets.No-one in the medical profession has suggested this very useful strategy to cope with the alarming effects of dyskenesia. Indeed it is two years since I have spoken to my neurologist,...this in itself needs addressing and is long overdue,but in response to your initial question Therese...
I take 4 sinemet tablets a day,the same strength as Doreens plus 16 mg of Requip [ropinarole]I should be on more Requip but refuse to up my dosage.
Also I take a slow release sinemet at night,two diclofenac and one amitriptyline tablet a day.A cocktail of drugs all of which at this stage in my illness seem to be "arguing" with one another.
I really thought my "honeymoon" period was over and have been dealing with increased repetative movements,horrendous fatigue [which hits me without warning] and the dystonia has returned with a vengeance.
BUT...I tried to be smart and titrated my requip too suddenly,by decreasing by 4mg a day in one go.

I have been on requip for about 4 years now and have not had any compulsive disorder with it so perhaps,[obviously needs to be sanctioned by Doreens neurologist] the Requip might suit her.It has taken several years to find a combination which suits me and it now appears I need to readjust again...but first I will give Chasmo`s suggestion of little and often a go first.
What I find particularly disturbing at present is the fact that when I take my dose of meds....almost instantly my body begins its merry dance and in complete contrast,my energy seems to just drain from me.I am unable to function at any level for at least three quarters of an hour.

I assume my dystonia returned because I am alternating the Covonia with the Metatone.Is it possible I am putting too much extra in my system to cope?
I don`t know.
I know I haven`t helped your query much Therese,butg inadvertantly this thread has proved to be the answer perhaps to my recent dilemma.
Thank you and I wish you all the best at your next hospital visit.
Steff

[chasmo]

first let me say "welcome back!!" you were missed!!!
half even quarter pills may be needed to adjust your dosage. You must also steer clear of any protein within an hour and a half of sinemet dosing.
HAVE you tried a COMT inhibitor such as Tasmar or entolcapone? ( can't think of the name of it to save me!!)Stalevo??

IT might be time to either adjust your requip dosing or try one of the new ones.

two years since seeing your neuro (MDS I hope?) is unacceptable!
Your symptoms now are most-likely caused nearly equally from improper medication as they are from PD.
You need to get an appt with a movement disorder specialist and get your med protocol updated. Remembering back to my "meds days", I do not recall ever going more than 6 months without a meds ajustment.
Be very careful if you try Mirapex, the world just is not prepared for an OCD'ed Steffi!!!...LOL

CHarlie

[steffi 001]

I have missed you lot too...very very much but half the time my fingers were like bolts...so I wouldn`t have made the individual keys.You`d have got a message something like..
drugh evuehriugziug eaiygiawg,ikgi,awkug,kg,kg,k,hsb,kh

Your information has been so useful...although I don`t wish to digress from Therese`s question at all.
Charlie? What is OCD`ed? See....still as dumb as ever.

xxx

[chasmo]

Obsessive compulsive disorder, it can be nasty, I have one friend who gambled away 250K
shopping and the "biggie"
sexual. i have seen several marriages torn apart by this.

Charlie

[GregD]

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.


Hi All,
First let me say that I am tremor dominate. I was having severe dyskinesia after taking my Sinemet. We found that for one I was taking too much Sinemet. The doctor had me cut back on the amount of Sinemet I was taking. That helped but not completely. We further reduced the Sinemet dose by splitting pills and seeing what worked. Today I take Sinimet 500/100 5 times a day and 2 Sinemet CR two times a day. The dyskinesia is completely gone.
ECD, I've tried several drugs over the years to help the tremor. So far, none have really worked very well for me. However, I have seen on more than one occasion where Amantadine has helped tremendously. As usual it has it's side effects but it can help tremor.

GregD

[therese]

Charlie is so right, Steffi, about your needing to be in touch with your neurologist more often...I could not believe the 2-year period in which you do not see him/her. Doreen sees her neurologist every 3 months...AND in between time..especially while attempting to adjust her medications, she is in contact with him weekly...his request. It DOES seem as though you could be over-medicated..and, in fact, that could be the situation with Doreen right now...taking too many "meds"...at low dosages, though...but, my question to the neurologist will be...how is he able to determine what's "working" and what is NOT "working" while there are so many "meds" involved...will see what he has to say to this next Friday....and oh, yes..Mirapex...you may not have read...or, you may have forgotten...what I posted, here, about the terrible Obsessive/Compulsive behavior Doreen experienced...which was unfortunate in that this medication "worked" well for her...eliminated her tremor and she felt very well all-round...BUT, the behavior became such that she had to be titrated off Mirapex. I have wondered, though, if her neurologist might consider letting her take the Mirapex at a lower dosage...she had been taking the maximum 4.5 mg. daily. I will pose this to her "neuro", but first, I will ask him about Charlie's recommendation of taking less more frequently of the Sinemet...should be an interesting "neuro" visit!!! As I mentioned to Charlie, though, Doreen's "neuro" is very receptive to suggestions...not at all haughty about it...so, Steffi...get on that telephone and make an appointment with your neurologist!!! Why? Because I said so and so did Charlie!!!! LOL

[EnglishCountryDancer]

I would like to say how much I like the new photo of you :the old one did make you look miserable/thoughtful and you do have such a wonderful sense of humour. I cannot understand why you have not seen your neuro .This shows how different Trusts within the National Health Service vary.My husband is seen every 6 months.Sorry, he is supposed to see him every 6 months they forgot him last time and did not send a reminder.He had to chase them up.I think it might be easy to fall out of the system so phone and make sure you have not dropped through the cracks so to speak..The G.P is just not expert enough on this specialist field.I shall sign off with my name as my husband(PwP) has started posting on another P.D site using my name so in case he posts here this is my name so you can tell which of it is Barbara

[chasmo]

bemused in her avatar.
it REALLY helps to have a sense of humor with PD!

I know this has been said b4, but dyskinesia is almost ALWAYS caused by a excess of Dopamine in the brain. You can control it by taking smaller more frequent doses. You may, however, need a "loading dose" to get you moving upon arising.

Charlie

[steffi 001]

So many "Oh my Goshes" to exclaim here,
Firstly. Chasmo!!!!!!!!!!!!!!!!! OCD! I had that BEFORE my meds but don`t have it now...gambling,drinking,sexual or otherwise[ i am laughing by the way]

Don`t you remember my posts about folding towels with the label at the top right hand corner....bathing in disinfectant 3 times a day...talking to plugs to tell them "you are now out of the socket so you won`t cause a fire" ...and the worst one of all..pegging out my undies so that the gussets [the bit which keeps you decent] all faced the house!!! How much more OCD can you get.:eek:

Second "Oh my GOSH!!!!" ECD...[how close your initials are to OCD...I think that`s where my confusion set in...lol] My pic.I didn`t realise.:eek:
ALL THIS TIME I HAVE BEEN LOOKING LIKE A MISERABLE OLD FART!!!!
I prefer "thoughtful" YOu made me smile with this. x So funny.And thank you for your kind words about my latest mugshot.Thought it was time to look you all in the eye.:rolleyes:


Therese...Part of the missed neuro is my fault..I was stubborn and thought I didn`t need to go as often,but they should check and remind..or be insistent I guess..or is that ditching the responsibility.
I am so glad Doreen has a good neuro. He sounds extremely caring and thorough.
My gp has been my life saver.He has been a tower of support and I guess this is rare,but is up on pd.He is always available for me to chat or ask questions whenever I feel like it so that is a bonus.

Greg. That`s an awful lot of Sin emet so you too have given me some hope that this dyskenesia might be controllable.
Thank you for all your responses.
Yes...you`ve read correctly.This is amazingly short for me.Go celebrate...lol

[steffi 001]

It aint short at all is it.
This is short.
x

[chasmo]

Don`t you remember my posts about folding towels with the label at the top right hand corner....bathing in disinfectant 3 times a day...talking to plugs to tell them "you are now out of the socket so you won`t cause a fire" ...and the worst one of all..pegging out my undies so that the gussets [the bit which keeps you decent] all faced the house!!! How much more OCD can you get.:eek:


Yea I remember but I simply ascribed it to your being English!! :D

anytime you up your Mirapex dosing, you run the risk of developing OCD.

Charlie

[steffi 001]

Am on requip..not mirapex...x

[therese]

Steffi...Requip has been known to cause OCD, too. Being in the same "class" of drugs, I suppose that's no surprise. In our case, it is such a shame that Mirapex had such dire and dissastrous side effects because it worked so well for Doreen. She was as "happy as a lark" while all the while spending, spending, spending without a thought as to what that could mean for her..for us. I believe it was Charlie...maybe Greg...who mentioned having known someone to spend $250,000...I have often heard of this and, too, that many marriages have broken up due to the side effects of Mirapex. It is ironic that I am the one who first brought the OCD behavior side effect to both Doreen and her neurologist's attention...yet, it is I who will "venture/risk" asking him if he would consider prescribing Mirapex at a lower dosage than the 4.5 mg. that she was taking during one of the most terrible times of our lives. Actually, I suffered more than Doreen...she was having a "merry time of it" while I looked on and saw her changing before my eyes. Thankfully, I read about the possible OCD side effect at another forum...had no clue until then. I really didn't intend to go off on a tangent, here, about Mirapex...just wanted you, Steffi, to be aware of the same possibility with Requip for SOME people.

Therese