What does everyone do at night? I'm not taking anything but need something to get to the bathroom. I'm o on sinemet 25/100 4x during the day and LDN.
Nighttime: What does everyone do at night... - Cure Parkinson's
Nighttime
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michaela13
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I take two 25/100 4 times a day at 7am , 11am , 3pm, and 7 pm. with other meds at the same time. My Neuro prescribed time release sinemet before bed but I had problems with the time release part with nightmares so I discontinued. Now I usually delay the last dose from 7pm to just before I go to bed. I still sleep without moving and I am in the exact same position and location in the bed when I wake up, that I was when I fell asleep. I go to bed at 9pm, up 3 or 4 times and start the day around 6 am. If we are out late for dinner and a show I will take the dose at 6pm and then sneak an extra dose before I sleep. But don't tell anybody.
When I forget to take this dose before bed, which usually happens when I stay up past 9 and crash, I know it the instant I wake up because I am shaking like a leaf and it is very difficult to move and I have been laying in the same spot too long and blood flow to extremities is poor and the rest of the day is not good and spent trying to catch up. I hope this helps
michaela13• in reply to
Thank you.
michaela13• in reply to
Thank you.
• in reply to
That's interesting. I was experiencing Sleep Behaviour Disorder when I was diagnosd with PD 4/5 years ago. It was getting quite serious particularly for my wife. I was put on Azilect and Stalevo (like Sinamet) and the disorder went away. Over time my dose became 1 Azilect and 4 Stalevo 100 mg at 7am 11am 3pm 7pm. Later when I was having trouble getting asleep I added a 5th Stalevo at 11pm, and the Sleep Behaviour Disorder started again. I gave up the 5th Stalevo and started switching off the computer at 8pm. Eventually sleep returned and the disorder went away. I have difficulty getting to the toilet at night but I'm managing. As the PD progresses and the dosage goes up the problems may return and I'll just have to deal with them. Maybe a slow release Stalevo.
• in reply to
That's interesting. I was experiencing Sleep Behaviour Disorder when I was diagnosd with PD 4/5 years ago. It was getting quite serious particularly for my wife. I was put on Azilect and Stalevo (like Sinamet) and the disorder went away. Over time my dose became 1 Azilect and 4 Stalevo 100 mg at 7am 11am 3pm 7pm. Later when I was having trouble getting asleep I added a 5th Stalevo at 11pm, and the Sleep Behaviour Disorder started again. I gave up the 5th Stalevo and started switching off the computer at 8pm. Eventually sleep returned and the disorder went away. I have difficulty getting to the toilet at night but I'm managing. As the PD progresses and the dosage goes up the problems may return and I'll just have to deal with them. Maybe a slow release Stalevo.
Ramuu• in reply to
Thanks for your input. I am totally on Ayurvedic ; Kappi Kachhu ( Indian MP) and Ashwagandharista , Yoga , walking & exercise 6.30am , 10.30am , skip afternoon as I take nap between 2pm to 3 pm ; do yoga and exercise during this time bit stiff & sometimes get cramps in left foot , toes & cuff muscle , last dose I take at 6.30pm ; which will last till 9pm ; go to bed by 9.15 - 9.30pm . Off-late ; I am experiencing problem in rolling in the bed . shifting from one side to other , I sleep on stomach without pillow ( for last 10 years i have been sleeping w/o pillow , as i had cervical problem ) . please any advise
have you tried TAI CHI as well as YOGA?
I FIND IT GDOD FOR MY BALANCE AND IT SLOWS ME DOWN
LOL JILL
SP I HAVE PSP A TYPE FO PARKINSONS,BUT NO EMDS FOR IT AT ALL
BUZZ1397• in reply to
Neuro Rx Sinemet at bedtime? Odd. My neuro said to me, Sinemet won't do you any good while you sleep. Because, she said, while you are asleep you have no tremors, and their are side-effects of Sinemet that can prevent you from having "good sleep". By "good sleep" she referenced the completion of 2 or 3 sleep-cycles including rem sleep periods. She is very serious about improving patients sleep because we all do better after a good sleep. I hope I helped you.
• in reply toBUZZ1397
BUZZZ, It is about being able to move around in the bed while you sleep so that you can change positions without waking? We do not have tremors while sleeping, true, but I do not have a lot of tremor while awake either. Plus it sure makes getting out of bed a lot easier when your body is not sore from laying in the exact same place and position all night. My neurologist (Movement Specialist) understands why I take the meds. before bed and agrees. He thinks that I should try the slow release Sinemet again.
P.S. I only have nightmares the nights that I forget to take the meds or took the slow release.
At bedtime I take a so called half Sinemet. This is a slow release (12 hours) version of ordinary Sinemet. This usually keeps me steady if I have to get up in the middle of the night. The effect is not as profound as a normal Sinemet (Madopar, Carb-levo (sp ?)) but just helps alleviate some of the worst like freezing.
Thanks ; but I would like to continue Ayurvedic Med ; for the time being I want to avoid allopathy
Hello Ramuu, please can you say what allopathy is?
Allopathy is western Medicine viz ; Sinemet , Levadopa , Syndopa etc
Thank you. Is there a word for the opposite?
I believe the opposite of allopathy is alternative medicine which includes homeopathy, acupuncture etc..
I have a difficult time sleeping for more than two hours at a time. Regards Sinemet 25/100, I am an early riser and take 1 and 1/2 at 5:00 am or when I awake if later.......then another one and 1/2 at 11:00 am .....and then 1 and 1/2 more at 5:00 pm. Regards the night, I take one further tablet when I go to bed, usually between 10 ad 11 pm. I have been diagnosed for ten years, have minor tremor, but major problems now recently walking. The fourth dose was set up to impact my mobility issues....it has not. PT is gradually improving my mobility. Curiously, never noticed much wearing off. Meanwhile take 1 mg of Requip at during the day and two selegiline in morning and noon.
I also do not take any meds during night time and if I have to go to the loo during the night in an “off” stage and can’t walk - I simply go there and back on my hands and knees. This may sound (and look) weird but it works for me. For emergencies I keep an empty plastic mayonnaise jar in my bedside table. Good luck!
I have also done the same-crawling.
And me.
Nobody has mentioned Amitriptyline , given in the low dose it help with restlessness . Since my husband has had a hospital be he sleeps easier not laying too flat at with knee part raised a little . Do you have a bed grab rail . This helps when getting in and out of bed or even turning . Something to hold onto as you steady yourself getting out of bed .
You haven't said whether your problem is because you feel unsafe walking to to the toilet , do you have grab rail anywhere I put them up in doorways and a bathroom wall .
When my husband kept waking me to get to the toilet I approached the GP and he arrange for a Nightingale nurse to visit . She then provided convenes which attach to a bag . SORTED FOR BOTH OF US . He isn't incontinenet just unable to walk
That's exactly what the continence nurse did for my husband. Now instead of having to get up to help him 4 or 5 times a night, we can both get some sleep!
If ever the time came that you cannot manage with the convene don't worry if you need to use pads instead . I was very worried that my husband would get sore bottom from rubbing particularly if wet .
They are very good and have never caused him any trouble while in bed . Luckily he is mostly dry in the morning , just the odd night when he has had to use it not to wake me .
Different story if I put one on him during the day if I go out for a few hours . Be pause he is sitting in a different posturing in his chair h can get uncomfortable with them . I always remove it when I get home again .
Had a fright yesterday though when I tried to raise the hoist it stopped . The lead of the battery had slipped out and run out of battery . Luckily it didn't take long to recharge . Wouldn't manage with it now .
My husband was in hospital for a month in April/May this year, unable to walk, and they used pads then. Fortunately since he came home he regained his ability to walk and is currently pretty mobile during the day, and can get himself to the toilet. The convene system does the job wonderfully at night.
Glad he improved forbid and yourself . We managed great with the convene until John started to retract so badly .
• in reply tocabbagecottage
I know how this is! It's awful! I'm just drifting off to sleep and I feel "the twinge" and I start to panic. I can't get out of bed very well, and then it takes me 10 minutes to walk the few feet to the bathroom, and by the time I crawl back into bed, arrange me between the legs pillow, push at the cat away and get situated, I have to go again! I'm developing a phobia to the one thing I enjoyed: crawling into my comfy bed with my husband and the three of us sleeping the night away! I have just learned to use a catheter and I try to empty fully before going to sleep, but the panic sets in eventually. Then I wake at 2 or 3, unable to move, bladder full and hurting, and surprise! Guess who has a UTI after i week of cathing! I used to be on amitriptyline, and it worked better than this, and now they want to give me trospium. Sorry, I have enough problems with constipation!
My wife was tried on sinemet 25/100 at bed-time, but had problems, we settled for a commode next to the bed with a grab rail on the wall, this is not perfect but with a little practice seems to work.
She is on requip 8mg in the morning, and stalevo 4 times per day and madopar dispersable quick release "on demand" when required (up to 4 per day).
Good luck!.
My neuro prescribed half a sinimet CR with the regular sinimet at bedtime. This helps usually. Although today I was really slow getting the covers off. It was difficult when I had a UTI and had to wear depends. But normally this gets me through the night. I take klonopin to sleep with melatonin and valerian. I am dx 10 years, 8 on sinimet.
Thank you everyone.
I was thinking slow release sinemet-1/2
I have a small enough bedroom so the comode is only about six feet from the foot of the bed.
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