if someone has sere dyskinesia and keeps falling asleep do you give more or less Sinemet I can't seem to win what cd ever I do
Don't really know Johnnie, best to phone the help line and speak to one of the nurses to get the best answer,hope this helps
Hello Jonnie, Gus is correct in saying to much sinemet will kickstart dyskie, we walk a very fine line with all anti pd drugs and sometimes its a while before the optimum dose is found, inform your PD nurse if the dyskinesia is uncomfortable, though your system may take a while to accept this invasion of alien chemicals I have duodopa and madopar and was first prescribed in 99 I can if I am careless and slightly overdose and the resulting dyskie is very bad, its like chasing your tail Johnnie ,you just think youve cracked it and it avoids your well laid plans and you have to start again, its a war John and you will win most of your battles, but not all.
I wish you well in your endeavours. FED
like your new toy fed any chance having a go ! what you said i battled for years then it was just to much dyskinsia won but had a trump card in my pocket ! deep brain stimulation but still had to battle for 16 months to get the right dosage & timing of meds right but i would say most days good ! what a beautiful day for feb sun out down here in dorset.
I HAVE TRIED 3 TIMES TO INFORM YOU GUS IN A INTERESTING SHORT ESSAY LIKE WAY AND EACH TIME THE POST HAS VANISHED BEFORE COMPLETION, WHY I DO NOT KNOW, I WILL HAVE TO RETURN TO BREAKING MY INFFO INTO SECTIONS, PART 1,2,3 ETC,MY E MAIL IS AVAILABLE IF YOU WOULD LIKE TO PICK UP ON THE HISTORY OF THE AMAZING 6X6 ADT (volvo), also many pictures you would find interesting, (all legal)aa I AM GOING TO STOP NOW BEFORE THIS POST JOINS THE OTHERS.
KINDEST REGARDS FED
Hello again Gus
Last week old friend, I was battered into allmost complete submission by the worse continuous Dyskie each day was a war Gus, the only description possible is like jogging 24/7, I was exhausted totally drained,it just would not let me be, I worked out after checking my drugs that I was uuptaking only slightly mind you,,too much levadopa, will come back to this in part 2
Sorry about that, I have informed you of our planned xtenshun,?? well a highly recommended builder has just arrived so I must go as my dear wife had to handle three builders all within 1hr last week, oh that does'nt sound right shall i rephrase,,,,,,,,,,,,,no lets not, she is not happy talking tech but she did well,and stood her ground when asking if they wanted anything up front,,,,oh there I go again all of them did and I WONT GO THERE so we have had 8 builders here they will send their estimates next week, then i will pick not necessarily the lowest bid but the best, my wife wanted the first one, he came about 3 wks ago he wanted 5000£ up front which she knows I wont do, but he was incredibly good looking Gus, the swine, I wouldnt say he was , but he made TOM CRUISE KEV COSTNER GEORGE CLARK BOB REDFORD AND THE LIKE look pale by comparison.
so he aint getting the contract gus no no noway Jealous --------who me,,nah
Keep in touch my friend FED
I am new to the forum and decided to join after seeing a few posts on dyskinsia. My doctor, who is a movement specialists does not do a good job of informing me about this symptom. She suggested I decrease my Levadopia, which I have done but so far I am not getting any results from that except I am not able to walk as well as I was. I have spent countless hours with my sleep interrupted by it. My primary Parkinson's leg kicks and kicks and kicks during the night. I have gotten to the point that I notice a slight tingling in that foot just before it happens. I have tried getting out of bed and walking around. I have tried riding my recumbent bike. The primary thing that helps is just getting out of bed and doing anything so I am not on the edge of sleep. I don't really know what is the ideal amount of time to do this. The other thing that happens is the awful shutter that effects the upper part of my body. When that happens, I hear my self-talk, "I cannot live with this." I am not suicidal and I take an antidepressant which I have taken much of my adult life so that won't change. I think it is just a call for action. I read somewhere that consuming more caffeine might help and I did decrease my caffeine usage just before it started. Has anyone tried acupuncture? Because I am noticing that little tickle just before it starts, I am think about applying a medication I have for tooth pain to the site. I just want to know all the things that others have tried to manage this. We are the ones with the problem and we know it well. Let's talk about what works.
try & take pd meds at least 2hrs before bed ,you could also ask pd nurse about slow release tablet for night time this will help with movement & restless legs during nighttime ,also remember pd drugs last about 4hrs in system allow half an hour to work,also with dyskinesia if getting it on say 125mg then try half 62.5mg maybe every 2hrs instead of 125mg every 4hrs its all about what suits your body different times & dosage .remember im not a pd nurse so talk this over with your nurse.you will find it takes a while.
I cut back on my carb/levo and that didn't really help. I wish I had a nurse to discuss this with but I don't. I started noticing the symptoms sometimes start before I am even ready to go to bed. The interesting thing to me is that if I notice that I have skipped a dose, late in the day, the symptoms will sometimes warn me. So if I go ahead and take it while the kicking and trembling are just starting, taking the meds will stop the symptoms.
This is very confusing to me. It reminds me of hot flashes when I was going thru the change. My understanding about that was that the "hot flashes" were trying to jump start my female hormones which just were not available anymore. They eventually stopped.
Are we sure that the symptoms are not my body attempting to get the dopamine going? The trembling and shaking symptoms are just so intolerable for me.
this was me for the last month when dyskie was crippling me, I instictively knew it was the Ddopa that was the cause and when the little lady who was my mentor arrived at my home, she had driven from BHIIIIRMEENEEHAM, To fix old FED, after looking through my medical info she told me exactly what I expected to ere, or even hear, I was overdosing on the madopar, levadopa,carbidpa medication, indeed I was going through my recent history, ( I have copies of every visit appointment of any of my B LACKHEARTS INTRUSIONS into ny life since 1999, every copy, I asked for copies of all medical procedures examinations, anything as all, and having perused my way through 22metric tons of my records it all pointed to the same conclusion, ( what you are about to read is private and confidential, only the kind folk of this FORUM are to be party to my findings, so divint oppen yah gob tive any other gadgies reet),,sorry but when discussing very serious subjects , I have just got to be silly, and as you may have read elseware on this great little FORUM I am embarking on a mission to mars with my fellow Astronaught and LSA,, STM,WLU,and JBRFTPaD, 1st class and GENRALLY NICE GUY ,,Mr MORPH,,try and work out the meaning of the prestidigous, oh bug???r,thats near enough, there is a very special prize if you can get ANY of the awarded honours awards most honourably awarded to SOFC, thats another, you will love the prize, beieve me, if I give the tantalising clue or clues of, my wife, and 36dd, and other very 5exy, and just in case this is misinterpreted well it means exactly whatever you think it may be,but then it might not, you wont find out unless you try, now as you have probably noticed I am way off track here,my motive is to bring a little humour into peoples lives, especially those who are Dudopa BROTHERS IN ARMS, as I mentioned at the start of this essay the most viscous savage unending Dyskie was killing me, and thats the truth my friends, no silly,, just plain and simple I thought I would not be posting this post to you all, in fact although I guessed the reason for the severity, I was still blind as to the solution, and so it came to pass that a petite little lady with the mental strength of six Einsteins, visited me yesterday and within10 mins she said you are a complete plonker FED, you are uptaking way to much levadopa, ( I KNEW THIS ) but my beloved despite reasurances will only go by the book, I know I have spelt reasurances wrong but I cant be bothered to spell it rite,,!!!!!! rite anyway my wellcome visitor was with me for 3.1/2 hrs, and gave both my wife and I THE REASSURANCES we needed in the war with BLACKHEART,also my dear Lady my angel has been informed she has both Cateracts and another more serious defect in her right eye, blindness in that eye is a 1 in 2o possibiity, my Lady is terrified, but this shared battle has made the bond between us very very much stronger, as you will know, those of you who read my posts, I am a strictly non religous person, in fact I actually envy those of you who believe, so may I ask of you my friends, please say a prayer for my Lovely Lady, she doe's not deserve this and your words may just tip the balance in her favour, thankyou.
I have much more to say but my little HONEY BADGER needs to go shopping so must go now.
Best of all bestness to you great folks I consider it a great honour to call you my friends,,,, and that even includes the bosses ,admin managers, you know who you are, BFN FEDEX
OR FED IF YOU PREFER
I attended a workshop for Parkinson's on Saturday. It was sponsored by the MJFox Foundation. I learned a great deal from the workshop. One of the things I learned was that if the dyskinesia is caused by taking too many meds, it will start happening within a short time of taking the medications. This is definitely not the case for me. It starts when I haven't had the meds in a while. I have an appointment with my movement disorder specialist on Friday and I will definitely be discussing this with her at that appointment. I'll let you know what she has to say about this. I really hope she has some answers for me regarding this. My other symptoms from Parkinson's are minor compared to this.
There may be a number of reasons you have these problems.
Please list out your daily medication and when you take it and also your meal times.
when does your dyskinesia occur most and how does it manifest eg kicking leg at night.
i was told I have myoclonus but what I might have is a form of dyskinsia that resembles myoclonus .I have found it is more prevalent when im due for a dose of sinemet or late.I have found I can control my jerks as long as Im concentrating on something or when im busy outside.I also use other tools such as always wearing polar sunglasses outside in the sun,watch my caffeine,avoid low blood sugar.I also avoid overexertion which is bad for it.I also was worse when I was on requip,8 mg sr.
Let me know if any of these have helped you with dyskinsia.
i saw my parkinsons nurse about a week ago and she mentioned cog rigidity what does that mean.
Your bike needs oiling
Thanks for that Leyther. At the moment I'm only on Rasagilene to slow the disease down. I'm not on anything for the symptoms.