HI Friends, I want to learn from your experience please. If you have to wake up to go to the bathroom and night,and you can't function from the bed to the bathroom,do you have to take additional sinemet or other c/l brand in other to function at night ? If so what is your drug schedule and how many do you have to take at night,in addition to your day time pills?
AS A PERSON WITH PD,AND TAKING C/L,HO... - Parkinson's Movement
Hi, I don't remember do you take thiamine HCL? Till I started it I was having horrible time trying to get in and out of bed. Also, my schedule is little bit different from Roy's. for one thing I take continuous release generic sinemet. I do take 25 / 100 mg. I do take sinemet through the night, otherwise I would be shaking and my toes would be curling under. I take one at 10 p.m., then starting my new day, one about 4:30 a.m.,then about 9 a.m. then about 1 p.m. and between 4 & 6 p.m. and 10 p.m. also some days I take another sinemet and I break it in half and I take 1 + 1/2 for the most active time in my day. that would be time at 9 and time at 1 p.m. so, everyone is different. It seems to be working the best for me. Took me awhile to make this adjustment. I have been diagnosed for 7 years and I need more sinemet to function through the day.
I tried HDT at about 3 years post diagnosis for a month and it seems to make the fatigue worse for me so I quit.I started with 500mg twice daily. Maybe I will try it again.I am roughly 4 years post diagnosis and i am on generic sinemet , 25/100 mg ,2 tabs at 8:00 am,12:00pm,4:00pm and 8:00pm. I recently just started having increased "off " period symptoms especially when I don't sleep well and it has extended into the late nights.I have a video call coming up with my MDS next week. I might switch to slow release c/L I pray the drug options continue to work. I will call my doctor to see if I can take something at night.Thanks for your kind response.
I do take melatonin, 5 mg, before going to bed. From my experience when you first start B1 especially since you took it before, you might want to start with a bigger dose and continue till you're feeling better and then after a while taper it off to a more manageable dosage. I believe the feeling of tiredness can be caused by almost anything. Glutathione is a good one and coenzyme Q10 or ubiquinol is a good one too. good luck, we're all going to need it
I was taking COQ10 before with melatonin,but my doctor who does not believe in supplements prescribed mirtazapine 7.5 mg at bedtime for me,and asked me to stop COQ10 and melatonin.The mirtazapine worked for awhile,but then stopped working so I switched back to 2.5mg melatonin at11;00pm and 12 midnight. I do appreciate you my friend.
More than a year ago I started my husband on vitamin B1 hcl. I think it’s important to get your B1 dose sorted out first. As I read that everyone was taking high dose B1 I started him on 500 mg and after 2 weeks increased to 750 mg and after another 2 weeks to 1000 mg. At 1000 mg his symptoms got worse. We stopped 3-5 days and cut back to 500 mg and reduced until now he is on 100 mg 6 says a week. We recently started melatonin for his nocturia and he is taking 4 mg. Would like him to take 6-8 mg but he is resistant. Too much B1 and melatonin can give active dreams so you have to know which is the culprit.
Hi. There is no standard dose and those who started on 3-4 g a day have found that over time they actually have to reduce the dose. So any worsening of symptoms is not due to a real deterioration but just too much B1 hcl. My husband was on 100 mg a day for about a year and began having active dreams . So I reduced it to 6 days a week and active dreams have stopped. There are a few of us on this forum who are good with low dose. And those with high dose have gradually had to reduce dose over time, not increase.
The nocturia became much better after he took melatonin- it’s a miracle
He wakes up 1-3 times now on 4 mg of melatonin. For years he was waking up 6-8 times a night. With pumpkin seed extract it became 3-5 times n with melatonin it’s been great. He says he’s not greedy and does not want to increase his melatonin dose.
My hubby has had PD over 10 years & we'd rather he not take any more C/L than necessary as he was getting hallucinations from it & other PD meds.
He also has nocturia & averages 1200-1600 cc -sometimes more- urine at night. We set 3 alarms to wake him up because adult briefs won't hold that much.
It took him a minimum of 25 minutes each time to get in/out of bed & to/from the bathroom. I would need to help him too. Neither of us was getting much sleep.
Finally we started using external catheters at night. Now there's no need to set alarms or take extra meds, etc. & we're both getting more rest.
Meds are controlling his hallucinations. Hallucinations began about 3 years ago.
He recently started meds for cognitive/confusion issues.
He started meds for restless legs a few years ago...those meds were decreased about a year ago.
Early in his PD he experienced a lot of pain & very painful cramping, meds have helped with that too.
Actually his C/L hasn't increased too much for a few years now. The last increase of 1/2 a tab, twice a day didn't help his mobility much at all, but increased his hallucinations, so the increase was reduced to 1/2 tab once a day. He takes 2 1/2 C/L in the morning; 2 in the afternoon & 2 in the eve.
He also experiences orthostatic hypotension from time to time. It's gotten much better since stopping blood pressure meds.
"9 Natural Sleep Aids That Are Backed by Science"
I take many of these and notice the difference when I don't take them. I also take a 50/200 CR at bedtime.
Hi oreolu, I take meletonin 10 mg at 8pm then at 930 pm I take 1 macuna puriens by Barlow . I take another10 mg of melatonin at 10 30 PM. Then I go to bed and sleep til 12 30 am .. at 1230 I take 2 sinamet cr 100/25 and I sleep well til 6 am. The meletonin made all the difference in the world. I tried cutting it back but it didn't work as well. . Sometimes it takes the sinamet cr an hour to work . But I'm now getting a longer deeper sleep and feel refreshed in the morning. Hope this gives you some ideas . Bev