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About jolo

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  1. jolo

    adjusting sinemet

    I was diagnosed in 2001 never really got into the Levadopa until about 2011. Had a rough few years experimenting. Finally toward the end of 2014 I ended up taking four doses 150mg four times a day plus 200mg Comtan with each dose starting at 10am. Always min one hour before food. This worked quite well until past few months where on time would often wear off before next dose kicked in. About a week ago I added a same strength dose but decreased the spacing by 15 mins. Seems to be working OK except for the last dose which only lasts about two hours before a meltdown. My question is would I be better off increasing the dose to 200mg levodopa and keep the four hour schedule?
  2. jolo

    adjusting sinemet

    I was diagnosed in 2001 never really got into the Levadopa until about 2011. Had a rough few years experimenting. Finally toward the end of 2014 I ended up taking four doses 150mg four times a day plus 200mg Comtan with each dose starting at 10am. Always min one hour before food. This worked quite well until past few months where on time would wear off before next dose kicked in. About a week ago I added a same strength dose but decrease the spacing by 15 mins. Seems to be working OK except for the last dose which only lasts about two hours before a meltdown. My question is would I be better off increasing the dose to 200mg levodopa and keep the four hour schedule?
  3. Hello, Dx PD 2001, tremor intensive type. Started Prolopa 2011 finally have my dose working fairly well. 150mg Prolopa plus one Comtan every three hours starting at 7am, last dose usually 7.30 pm, try to time it so wears off when asleep otherwise bad tremor and weakness. Live alone, eat mosly frozen vegetarian, canned veggie soup, cereals, berries and fresh fruits. Protien interferes with my meds so avoid them like the plague. My question: How can I work some protein into my diet? I don't cook at all so am hoping there is a supplement I could take during the early hours of morning or is it really that important? I am not sure how to find your reply on-line so will include my email address just in case. jolo.sp@telus.net. Thank you.
  4. Now 76 yo living alone. Was diagnosed with idiopathic, tremor predominant PD in 2001. Held off PD meds until Feb 2012. As I was slowly getting weaker especially the last two years prior to taking meds. I started on Sinemet 100 x 3/d, 8am, 2pm, 8pm. This did improve my overall condition but it was short lived. One year later my condition suddenly started to deteriorate, about one hour after each dose of 150 x 3/day, to a point that I was worse off than when I started on meds in 2012. Little did I know that the Sinemet had started to wear off within one hour, I thought that I was having an allergic reaction as my tremor increased to a point that my arms would ache, I was unable to sit upright in my computer chair and really had to fight or get help to stand from a chair, I also needed help to get into or out from a car. I then started experimenting with the Sinemet by taking 1 x 100 to see how long each dose would last - just over an hour per dose. So if I started at 8am it would mean fourteen doses per day to ‘stay-on’. There didn’t seem to be a buildup nor that much of an overall improvement, but it was better than nothing. About Feb 2014 I noticed that in the mornings I felt good and with ZERO tremor as long as I did not take a dose. So I then decided to see how long I could go in the morning without any meds and discovered that I was fairly comfortable until 3pm when my symptoms gradually started to reappear which to me meant I am still producing some dopamine naturally during the night and there is a gradual wearing off throughout the morning and part of the afternoon, I feel in a more natural state. After much experimenting, for the past five months I have been starting my meds at 2pm, 150 Sinemet + 200 Comtan, same at 4pm, same at 7pm (2 then 3 hours apart) and that lasts me until between 10.30pm and 11.30pm, I usually try to be in bed before 10.30pm. I then find It very difficult to get out of bed at around 12.30 as the meds have worn off but it becomes easier as the night goes by. In the mornings my voice is normal, but after the Sinemet takes hold my voice becomes much weaker and my right cheek pulls upward so that I sometimes close my right eye when speaking (someone might think I am having a stroke). There is also a slight increase in my tremors and I don’t feel any stronger or improved movement. The other thing that happens is that if the meds wear off like when I forget a dose my state comes crashing down with severe tremors and weakness, leaving me in very much worse condition than I was before taking the first dose. At night I usually need to get out of bed at about midnight, 3am, 5am, the finally 7am, and each time is much easier. I really don’t understand what is happening and would appreciate an opinion.
  5. Beau’s Mom… Thank you for the information – it makes sense. You never commented on my second question. I now have a reverse situation with my meds – probably should go to ‘Ask the Doctor’ but will see if there is any feedback from this forum first. Starting three days ago - within one hour of taking my first dose at noon my tremor starts up in right arm (no tremor all morning) to a point where my arm aches, also tremors in both legs, and just to confuse things more my left arm and hand Essential Tremor escalates. (have had ET since teens, only ever bothered me was when stressed and my writing was slow). So now here I am from 1 pm till 11 pm in a off-state, although it does improve gradually to a state of comfort just before the next dose then the cycle continues. So the meds are achieving the opposite of what they are supposed to do. I am thinking that I should experiment by eliminating the 4 pm dose to see where that goes. Seems almost like an allergic reaction to the Comtan.
  6. I am 76 year old diagnosed with tremor intensive Parkinson’s in 2001. Started on Sinemet Feb 2012. For the eight months I have had problems with Sinemet wearing off within two hours or not kicking in at all, 150 mg four times/d four hours apart. Started on Comtan two weeks ago, seems to almost make it to the next dose 70% of the time, but sometimes doesn’t kick in at all. I will need to give it more time, as it is am doing much better than before. At around 2am I need to get out of bed but am very slow. I am not able to turn onto my side or back so I must get out of bed and get in again which I do three or four times. Each time is easier as I am moving better. By 7am I move and function just as well as on-time with meds at least until 1pm. So what I have been doing is starting my meds at 12 noon, 4pm, 8pm, and skipping the 8am dose. My questions are….1. Why does my condition improve during the night? 2. Does it hurt to skip the 8am morning dose? If I take the 8am dose and it does not kick-in then my morning is much worse than it would be by just skipping the dose as I am then in a off-state. Any comments are appreciated.
  7. jolo

    severe sudden off-time

    Have had tremor intensive Parkinson's since 2001, 76 yo, live alone. Diagnosed by three different Neuro's (two of them movement specialists) Tremor, stiffness, etc, effects mainly right side. I also have ET, not bad though. Started Sinemet Feb 2012, 3 x 100mg/d, 5 hr apart, increased to 150mg in Nov 2012. Worked fine until Mar 2013. then it would work for an hour or two then turn off and many times not kick-in at all. I had never before experienced off-time so thought I had developed an allergy to the med. The sad part is if my first dose at 8am does not kick-in then my day is pretty well shot. My off-time is dramatic. It comes on within one to two hours with a sudden increase in severe tremor, slowness of movement, difficulty sitting and standing, shuffling gait and no energy for daily tasks. The strange thing is that I feel OK in the mornings with only slight tremor and movements OK. I am aware that if I don't take the Sinemet I will become weaker so I prolong it until 2 pm then suffer through the afternoon 3 x 100mg 3 hr apart. I am wondering if any of the experts on this forum have had a similar experience and are able to offer some advice as my Neuro apt is several months down the road. Neupro/Rotigitone patch is now available in Canada, would that help? Any other advice is appreciated! Thank You.
  8. jolo

    Sinemet not working

    73 yrs old diagnosed 2003. Started with severe tremor in right foot then six mo later in right hand. Also have essential tremor since teens that effects only my writing, but me writing is still normal size. I have slowed down over the past eight years and seem to have similar symptoms as others. Friends with PD tell me they have difficult time in mornings until meds kick in or if meds wear off between doses. I don’t have any of these problems, my condition is the same all day. I don’t notice much rigidity in my arms (can still swat a fly with my left hand) can grin, make faces, wiggle my ears etc. But do have similar problems with balance, dressing etc. I see a MDS who has tried me on Sinemet & Sinemet CR different doses several times but it has no effect, only seems to make tremors worse. He does not recommend agonists. Does anyone have a similar problem or advice? Current daily meds 1800 mg Gabapentin (neuropathy feet), 3 mg Clonazapam (essential tremor), 30 mg Mirtazapine (to help tremors).
  9. jolo


    Dr Okun & gmk Thank you for information, I will take your advice.
  10. jolo


    -------------------------- Dr Okun and gmk. Thank you for your replies. I feel that I need to provide additional information so that you are able to advise me more accurately. I should mention that into my second year after PD diagnosis by a MDO specialist, with the help of my GP we started on Sinemet and gradually increased the dose to 1200mg/d over a period of about fourteen weeks. The purpose was to try and minimize the tremor as at that time I had no problems with slowness of movement, just severe tremor. Instead it had the opposite effect, the tremors became worse, I was having strange jerky movements, my rotary cuff felt like cog wheels and my feet started to tingle and felt numb. Consequently I phoned the head of our Parkinson’s society who happens to be a registered nurse with PD experience and she advised me to immediately start to wean off over a period of two weeks and advised that Sinemet normally will not help tremor. After I stopped, the tremor was more severe than ever and would not stop at night so I had to place a sandbag on my right leg and lay on top of my right arm to partially control it (tremor was on right side only, and still is except for recent slight tremor in left leg) to try and get some sleep. After about a month of this my GP suggested I try Clonazepam and started 3x.05/d, it was like a miracle, the tremor stopped at night and I was able to sleep again, the Clonazepam helped my essential tremor as well (which had developed in my early teens and only affected my writing or showed up when I became anxious. None the less it was a burden and caused withdrawal, depression and marital problems throughout my life). My GP sent me to a Neuro to have my feet diagnosed as neuropathy. He started the Gabapentin although it seemed like a minor problem to me, and the Gabapentin did not make any noticeable difference. Later he was not sure about my PD diagnosis because of the lack of rigidity and suggested that I see a Specialist in Vancouver 800 miles west in Vancouver. There was a nine month wait but a very thorough exam and a determination that I had a tremor-intensive form of PD, the good news was that it would progress slower. He prescribed Mirtazapine 30mgx1/d for improved sleep and possibility of help with both tremors. That was March 2010. I can’t say that it helps but am still on it. I am now seeing a Neuro at our local MDC. Last saw him about four months ago for the first time and he suggested that we try a starting dose of Sinemet CR100/25x3/d for a period of three months. This did not seem to make any difference to my deteriorating movements and there were no on/off periods, so after the period through his associate physician I have increased it to 4/d every six hours (4, 10, 4, 10). I have been on this regimen for two weeks now and really slept well the first two nights but now sleep is deteriorating and the tremor is a more severe during the day. Also the last few days my feet get hot starting with the soles. The alternative was to contact his nurse in a few weeks and switch to regular Sinemet 3/d for a month and take it from there. It seems I should stop the Sinemet now to see if it is causing complications with my feet and increased tremor and then try it again at a later date. So that rules out increasing the Sinemet in order to wean off the Gabapentin. I have been on Clonazepam 1mgx3/d for the past year, would increasing this to two or three mg then try slowly weaning off the Gabapentin? (one capsule/week?) There is no reason to believe that the weight gain is due to a sedentary lifestyle or overeating as I live alone on a 40 acre parcel twenty miles east of the city. There is plenty to keep me busy and it is easy to regulate my diet as it does not vary much from day to day. I have been cutting down the portions over the past six months but it does not help with weight loss. At bedtime my ankles are like tennis balls and there are deep indents from my socks, and are subsided (but not fully) in am, but my waist size has increased. Also my wrist leaves an indent from watch although loose in am. Now 5’11” and weigh 200 lbs. Was always around 170 steady since early 20’s now 72. Any advice you have to offer is appreciated. Regards. John.
  11. jolo


    I would appreciate some help with weaning off Gabapentin, as it is known to cause edema. Over the last four years have gained 30 lbs, making it more difficult to move in general when I least need it. I have tried weaning off several times over periods up to three weeks but when I get down to three to six hundred mg/d from eighteen hundred the tremors increase and will not stop when I go to bed. Is this a withdrawal symptom or is it possible that the med is actually helping my tremors? It was originally prescribed for peripheral neuropathy after testing my feet more than four years ago. I am unsure that it helped as they still feel the same, no pain, just feel like wearing socks when go to bed and soles get hot at times. I know that I still have feeling in my feet as my physician tests them frequently. My Parkinson’s tremor started in 2003 and have just recently started on Sinemet to help with deteriorating movement. John.