I was dx in 1996 at the age of 55. During the past 9 years I've been on a variety of medications
but could not tolerate any of them. For the past 4 years or so I've been taking 5 Sinemet CR
50/200mg and 5 Comtan daily. about six months ago I started having problems sleeping. I would wake up during the night take another dose of my medications and would have to wait over an
hour (sometimes much longer) for my meds to work.
I'm still taking the meds above but instead of taking the Sinemet CR in the middle of the night
my neuro suggested I take one and a half of the regular Sinemet 100/25. This seemed to work except I immediately started having extremely vivid nightmares which seem to last
until the Sinemet wore off !!
So I'm back on my previous meds. If I have to stay awake for a couple of hours in the middle
of the night so be it.
Since my dx I have lost over 40 pounds -- I'm now 154 and have stayed at that weight for 3
years now. No matter what I eat I do not gain any weight.
Also my blood pressure is very low which causes a lot of dizziness. I've learned to live with
this. I also use a walker.
Has anyone else had this problem with Sinemet? Any problems getting back to sleep in the
I'm on Stalevo (sinemet comtan ),and fortunately have no sleep problems.I did try sinemet cr,and had to discontinue it because of nightmares.Guess there are not 2 people with the same reaction or results from the same med.I also take mirapex .75 2x a day in the morning and mid afternoon.If I take it at nite before bed I'm up every 2 hrs.There are quite a few people on this forum on sinemet cr as I have talked to them over the years hopefully you will hear from them.Stay well,and stop by often.Good luck with your med fine tuning.EdEd-Diagnosed with Parkinson's Disease in 1998.I am also Diabetic,and have major arthritis issues.As long as I can fish life is good.
support Healing Well thru the sponsors and with donations.The light is always on stay well,and listen to your neurologist.
I was diagnosed this year with Parkinson's and so far, thank God I've managed well. I also take sinemet, 3 x a day and I take only a half pill each time. So far, no problems. I do notice though that if I wake up during the night to go to the bathroom, it takes a long time before I'm able to fall back to sleep. I have a problem with balance. This is driving me nuts. I've gone to an ear clinic and although they said I have a problem with inner ear balance, I've been treating for this and it is no better. When I walk, it is as if I'm drunk. I can't walk a straight line. TAke care of yourself and write anytime.
WELCOME! Since developing PD several years aso I have beome a creature of the night. Parkinson's can majorly disrupt your sleep cycle. I, like many PD'ers I know, I consider 4 hours a good nights sleep. I currently take Sinement (25/100) 1 tab every 2 hours between the hours of 4 AM and mignight. CR has not proven effective for me. I also take 1600 mg of Comtan (8 tabs) and 4 mg or Mirapex in divided doses throughout the day. Sublingual Sinemet is my rescue med. Unlike most PD'ers, my PD is more active at night. I use Klonopin .5 mg PRN - that helps at times. So between a modified sleep cycle and "OFF" periods, a good night's sleep is a thing of the past! As disruptive as it is, you do adjust over time. Wishing you the best. Aren't computers great - now you know what to do at 4:00 AM.
You never have to grow up....
"take the second star to the right and straight on 'til morning"
I thought I had the sleep problem beat.I stopped taking mirapex after 6:00 pm ;went to bed at about 10:30pm ,and got 7 hours of uninterrupted zzzzzzzz time.Now I wake up at least 4 times desperately needing to urinate.This just started.I think it is muscle control problems with the bladder as a check of the prostrate by my family doc says no problem there.Looks like a new PD challenge.Next topic the weather it is currently 5 degrees here in the frozen north,and I hope the rest of the world is warm.EdEd-Diagnosed with Parkinson's Disease in 1998.I am also Diabetic,and have major arthritis issues.As long as I can fish life is good.
support Healing Well thru the sponsors and with donations.The light is always on stay well,and listen to your neurologist.
I can't sleep at night either altho' sinamet plus does help,off periods get longer in daytime,feel horrible,feet shuffle and walk like I'm drunk,hands becoming weak..no grip,legs very weak too,use a walker,mini scooter,w/chair.meds are madapar cr and sinamet plus.I always laugh at myself otherwise at times i could cry,nogood comes of crying I'll have another good shake(ha ha).I now know I'm not alone and I won't moan anymore.Thanks for listening...Grace
My walking is horrible. I shuffle and freeze. I can not walk a straignt line - I veer to the right and my arms no longer swing at my side. At times i look like a potted plant, frozen in place, in the middle of the supermarket aisle. I too have lost my upper body strength. I have just made the big purchase - a power wheelchair. I am not able to manage a scooter (can not pick up my feet to get on) and do not have the upper body strength to use a manuel wheelchair. I gave up on sleeping one year ago. My sinemet only lasts a little over an hour, and recurrent PD symptoms mandate that I dose myself during the middle of the night. CR has not proven effective for me. Because of the aggressive nature and my non-responsiveness to sinemet, my diagnosis has been revised to MSA. You have to laugh at all this...and you are right....you are not alone. You are among friends.
Lived each day to it's fullest. Blessed are the caregivers - for there is a special place in heaven for them and my husband will be sitting at the head of the table.
Dx'd with Parkinson's Disease 12/2004 and re-dx'ed with MSA, cerebellar ataxia and parkinsonism in 1/2006.
Stella Marie Thanks for your quick response,I now understand what is happening to me,my family will too,I can't use my w/chair myself someone has to push me (no strengh).I know what you mean about not able to lift legs to get on & off a scooter, my plan is to buy a powered w/chair next,like you, I have been thinking of this for some time,but keep putting it off,now I will think again, keep well...Grace
Hi there, I'm new to this and somewhat intimidated. I was dx w/PD in Sept. 1992 I also have Kartagener's Syndrome which is in the same family as cystic fibrosis, I have no cilia in my body and have chronic sinusitis & bronchitis, have had pneumonia 43 times, plus I am a breast cancer survivor, had that gem in Dec. 1998.
I've read your letters and I can relate to what you are all saying. I take 7 sinemet cr 200/50 and four 100/25 sinemet, sometimes it can be more or on the odd occasion less. I had a pallidotomy done in Oct. 2002 and it brought me great relief on my left side but it's starting to wear off now. Like all of you I too have sleep problems and have been on sleeping pills for about 2 yrs. now. I am still walking but like most of you I walk like I've been on a bender, oh well it could be worse I guess, at least we're still looking at the grass on the green side.
Hi there, I was diagnosed in Dec 05 after 5 years of symptoms and tests. I am crrently on Sinemet CR 3 x daily (200/50) It sure helps throught the day but at night, I am awake several times and by 3 am, that is it for the night. Of course, i am exhausted through the day making work and driving the 200km round trip a real challenge.
My Dr. has suggested that I take my last pill for the day in half doses, one at dinner and one at bed. I am trying this week and I think it is a little better but not 100% by any means. Good to know I am not alone
But at least now, with Sinemet, I am able to write again and can walk withot stumbling and my legs / arms don't feel heavy and tense all the time. So I think the benefits for me (right now) outweigh the loss of sleep.
Hi, my name is mandy, I have just stumbled on this site while looking up some information on parkinsons for my father who was diagnosed around 9 yrs ago at age 45. movement now is increasingly more eratic for him but he fights on, trying to renevate 2 houses with the help of my myself my mother and young brother, he ceases to amaze me! we have not really met any other sufferers and reading all your entries its comforting to know he really isnt alone. He really is a night person too and suffers terribly from vivid nightmares, he hates to wake my mum but finds it quite lonely wandering the house at night, he finds he can't lay in bed as this is so uncomfortable and ends up roaming around the house till the early hours. I would love for him to start using the internet to contact people in the same boat but he says he finds it so hard to concentrate on anything for any length of time even listening to music which he used to love. does anyone else find concentration hard and blurring of vision? i hope that through me i can put him in contact with others. Thanks for listening
Welcome to healing well .Your father is definitely not alone .many of us have vivid nitemares.I think much of it has to do with the PD meds.I solved most of the problem by changing the timing of my Mirapex.I stopped taking a late pm dose and now sleep better and have far fewer nitemares.I am currently taking this along with stalevo.Enough rambling I hope you hear from others,and keep trying to get dad on the site.I am knocking on 62 and was dx in 98.Best to you dad and family EdEd-Diagnosed with Parkinson's Disease in 1998.I am also Diabetic,and have major arthritis issues.As long as I can fish life is good.
support Healing Well thru the sponsors and with donations.The light is always on stay well,and listen to your neurologist.
Hello Stella Marie,i now have a power wheelchair too,it's much better so it's by by to the scooter. the p/chair is an indoor/outdoor,i can take it on the community bus which opens up what i can do & where i can go..roll on summer here i come.this forum is wonderful there's almost always an answer to our various problems.my thanks to everybody. Grace.L.
about the sleeping. I started taking Melatonin 3mg at night. along with Sinemet CR. Melatonin is a night time sleep aid dietary supplement. Over the counter. This has helped me sleep at night. I was diagnosed over a year ago at age 40.
Welcome to healing well.Glad you found something that works for insomnia.Thankyou for sharing this with us at this site.Stay well.EdEd-Diagnosed with Parkinson's Disease in 1998.I am also Diabetic,and have major arthritis issues.As long as I can fish life is good.
support Healing Well thru the sponsors and with donations.The light is always on stay well,and listen to your neurologist.
Hi there, My name is Billy and I live in Chelmsford UK (about 40 miles from London) and I am a new member. I was diagnosed 6 years ago and am currently on 3 Sinemet Plus and 1 Sinemet CR at bedtime. I also take 1 Selegiline (for those who have not heard of it its supposed to prolong the effects of Sinemet).
My main symptons are tremor in left hand, micographia, poor dexterity and co-ordination, poor voice control, fatigue and stiff legs when the sinemet is wearing off. I have other health problems which include Chronic Renal Failure (diagnosed Jan this year) and Arthritis that has led to two knee joint replacements and a couple of knuckle replacements.
Its interesting to read the board and although non of us wants these horrible diseases it does give a little comfort to know that other folk get the same symptons...it makes me feel less vulnerable being able to pinpoint the reason for something and there is nothing worse than beeing the only one. Until I was told about my kidney failure I blamed everything on PD but since joining a forum for kidney problems have come to realise that some things like feeling cold all the time, having a bad metallic taste in the mouth, itchiness, gout and pains in the hands and feet are more probably down to the kidney problem than PD. It doesn't make the symptons more acceptable but my view of Parkinsons is that because it covers so many symptons and varies so much between each patient there is no positive treatment and we are, more or less, guinea pigs. Does anyone feel the same....sorry for rambling
Welcome to Healing Well.You hit the nail on the head when you said that PD covers so many symptoms and varies so much between those that have been dx,with PD.this makes it hard to relate to the symptoms of others in many cases.You definitely are not alone,and I'm glad you found us at Healing well.Stay in touch the light is always on.EdEd-Diagnosed with Parkinson's Disease in 1998.As long as I can fish life is good.Keep a great attitude.It benefits all.
support Healing Well thru the sponsors and with donations.The light is always on stay well,and listen to your neurologist.
welcome to Healing Well.i have been on stalevo for about 2 years,and i have found it to be more effective ,in my case then sinemet.My first side effect was nausea and this lasted about a week.the other side effect which was worrisome at first was dark colored urine.This is due to the comtan component of stalevo,and will continue as long as you are on the drug.As you know everyone reacts differently to any given med,and that is all the side effects i experienced.Give it a fair trail,and i hope it helps you Ed ps stay in touch and let us know how you doEd-Diagnosed with Parkinson's Disease in 1998.As long as I can fish life is good.Keep a great attitude.It benefits all.
support Healing Well thru the sponsors and with donations.The light is always on stay well,and listen to your neurologist.
Post Edited (yekkimo) : 4/3/2006 8:09:23 PM (GMT-6)
Hi there, I was diagnosed in Dec 05 after 5 years of symptoms and tests. I am crrently on Sinemet CR 3 x daily (200/50) It sure helps throught the day but at night, I am awake several times and by 3 am, that is it for the night. Of course, i am exhausted through the day making work and driving the 200km round trip a real challenge.