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06-23-2007, 05:03 AM | #11 | |||
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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 |
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"Thanks for this!" says: | Arsene (12-15-2016) |
06-23-2007, 09:01 AM | #12 | |||
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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 Last edited by chasmo; 06-23-2007 at 09:13 AM. Reason: added a thought |
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06-23-2007, 09:11 AM | #13 | |||
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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 |
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06-23-2007, 09:22 AM | #14 | |||
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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 |
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06-23-2007, 09:52 AM | #15 | |||
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Quote:
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
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"You can't fight City Hall, but you can pee on the steps and run." --Gary North |
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06-23-2007, 10:30 AM | #16 | ||
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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
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06-23-2007, 12:46 PM | #17 | ||
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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
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06-23-2007, 12:58 PM | #18 | |||
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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 |
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06-23-2007, 01:08 PM | #19 | |||
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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. 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. 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. 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 |
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06-23-2007, 01:10 PM | #20 | |||
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It aint short at all is it.
This is short. x |
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