Hi all. I was wondering if any of you take stuff during the night. I never thought it was something I’d consider as I presumed I’d save it for daytime, but I reflected recently that maybe a) it might help with sleep and b) it meant less of an uphill journey for the first drugs in the morning. Your thoughts and experiences most welcome 🙏.
Dopamine through the night: Hi all. I... - Parkinson's Movement
John has added 50mg co-careldopa when he wakes up ( around 12.30pm) slow release , it really help when he needs to move around / get out of bed for the loo in the night , means his sleep is better which has a knock on effect during the day . Only been about 2 months but made a difference already , I rarely have to help him now 😀
Thanks Christine. Hope you’re coping with the current madness!
My neuro didn't like the idea of starting me on levadopa - too young at 59 years old. So I have started on Pramipexole extended release. Whilst dopamine agonists can have serious side effects for some people, so far, it seems to suit me. The advantage that's relevant here is it is one dose once a day which lasts 24 hours.
Yeah it was my first drug too although in the form ofRequip. Never done me any harm and I’m not far off 5 years now. I’m having terrible neuropathy which is as debilitating as the PD motor symptoms in a way. I think this stops me relaxing as there’s constant tingling in my feet. Have taken lots of B12 but nothing helps. Sometimes I’m reluctant to admit I might seek DBS at some point as it appears to help all sorts of neurological generated issues.
Whilst I hope my PD can be controlled for a long time in other ways, and that within that time new and better remedies come along, I would look to DBS if it were appropriate. As for Requip and Pramipexole - The 24 hour extended release versions potentially offer relief at night where they are effective. I'm not sure if its effective for neuropathy though. Hope you find something which fixes it
My husband has had PD for 6 years now. He used to be a good sleeper but now has difficulty sleeping , upnabd downball night! He freezes a lot and his tremor has worsen, his quality of life has gotten worse. We asked his doctor about DBS but he said it wouldn’t help him a lot. Anyone else had their neurologist tell them this?
My neurology department has the person go through a series of tests to see if they're good candidates. Did the doctor say why it wouldn't help him?
My husband doesn't qualify due to having dementia with PD. Tremors on right side are worst than a year ago. Eating is difficult without assistance. Carpa-dopa is no help that I can tell. Same thru out the day except when resting/sleeping. Other drugs are not recommended because of his low heart rate. B-1 doesn't seem to be of any help either. I have him on 1500-2000 mg a day. Getting back to sleep after bathroom breaks at night is hard (for both of us).
Sorry to hear about the neuropathy. B6? I tried to follow the debate about LDopa and Vit B6 deficiency some years ago and gave up! But B6 excess or deficiency can be associated with neuropathy.
ps I take extended release sinimet only (3 x 100/25, 1 every 8 hours or so) so have Ldopa in my system overnight no problem. I used to take a B complex containing B6 but not right now.
I have neuropathy in my feet too. Had a biopsy done which showed small fiber nerve disease. My neurologist started me on Gabepentin which helped a lot. I was first diagnosed with Low B12 and was taken injections when I started with the horrible pain and tingling in my feet.
Did the injections help and do you still take the Gabapentin and if yes, what amount daily please? I have some but I’m uncertain if I give it long enough time?
I felt better after taking the B12 injections but my level was very low, under 200 and anything under 375 can cause neurological damage. It did nothing for the neuropathy. The gabapentin was started and I ended up taking 600 mg four times a day with great relieve from the pain and tingling. I was on that dose for five years and have recently weaned off 2 doses, so 600 mg morning and night, have some numbness but no pain. I use sublingual B12 methocabolimin all so.
Goodness. So at its height that was 4200 mg a day? That strikes me as an enormous amount but then I guess if that’s what it takes eh? Did you try lower doses to begin and then move up or go straight to the afore mentioned figure? What really pisses me off is that they seem to parcel neuropathy as a totally separate issue when I know loads of PWP with its obvious that it’s part of the disease process for many of us. Thanks for your cooperation in this btw 😊
Hey man, How’s it going! Haven’t heard from you for quite a while! I have a big time problem, with peripheral neuropathy! A couple years ago, it was a minor problem. Now , it is like with you, constant tingling in feet, and, at times, tingling in hands. After I’ve shoveled snow, my hands, tingle and ache for about a half hour. At night, I get woken up, by my ‘restless legs’. The neurologist had blood tests done, but nothing came of it. Neither my primary care doctor, or my neurologist, have been able to come up with anything to help me. So, it’s not been a happy time for me. I bet, I’ll get some good advice from this blog/forum, from people that go through the same stuff, I am going through! With this COVOID-19 pandemic, my wife and I have been in self-isolation for 40 days now. Our wonderful daughter brings us anything we might need, and puts it all on the porch-we’ve had no other human contact since we’ve been isolated, except by phone. So, I guess this is the new normal! The whole world seems to have gone Topsy Turvey, since you and I last communicated with each other. I might have to go the DBS route too! Anyway, I hope your wife is doing better, and that you were able to get pension difficulties worked out. Let me know, if you hear of anything that could help, with the debilitating peripheral neuropathy, Stay safe, and take care! Doug
Howdy Doug. Mate, I wish I could be positive but it seems to be a nightmare scenario. Most seem to be given Gabapentin but the majority of these claim it didn’t help. The thing is that neuropathy is generally caused by cancer treatment, diabetes or vitamin deficiency. If you don’t fall into one of these you might as well shout at the moon for all the understanding that the doctors seem to have. I read a study that argues long term use of levadopa erodes B12, so I hung onto that possibility for a while. But my B12 levels seem pretty normal or at least they are now after chewing on B12 tabs like they’re candy for 6 months😊. So a mystery Doug. Sorry I couldn’t provide more solutions. Pension secured and wifey on the road to recovery. Thanks for asking. Oh, btw CBD oil will be my next area of investigation. If I have any luck I’ll come back to you 👍😷
Thanks for your reply, mate! I’m so glad you got the pension problem straightened out, and that your wife is on the road to recovery! Those concerns are eased a bit, for you. Nowadays it seems like there are way too many nightmare scenarios! Oh well, we have to pull ourselves up, by the bootstraps, and carry on! I’ve taken B-12 and B-1 vitamins for a while now, but haven’t seen any improvement. Let me know how the CBD oil works for you! Do you still have your Dog? Take care! Doug👍
My neuro added 100 mg ER L-Dopa before going to bed.
She did not tell why - she never does.
My neurologist prescribed Pramipexole to suppress tremors and restless leg
My neuro wanted me to take an evening c/l in order to keep a consistent level in my body. I had trouble sleeping with it so could not take it at night.
Sinemet CR 200/50mg worked great at first with occasional top up of 50mg of regular Sinemet, then added 0.125mg pramipexole which worked beautifully for four months. Other drug options have been abysmal so I am turning to exercise and environmental changes. Just stumbled on this site thesleepjudge.com/sleep-tip... ; numbers 9 and 10 are intriguing, seriously.
I take half dose regularly about 4 hrs from the last regular dose. It helps with restless leg.
yes, your thinking is right. i take slow release levadopa at about 11pm but still doesnt get me through night. sometimes i try a madophar around 6am but never worked for me. i find mornings dreadful hard, all sorts of 'off' stuff.
Sorry wasn't with it I take sinemet controlled release about930it works for me
Yes I take slow release half Sinemet just b4 bedtime to help with movement i.e.for turning or bathroom trips. It works for me!
I’ve been taking Sinemet 187.5mg three times per day. Recently I’ve had real sleeping problems. Just couldn’t switch off and became restless and fidgety in bed. As a result I was spending several hours each night downstairs making tea and reading. As an experiment I’ve recently tried a 4th daily dose of my medication at bed time and unless it’s pure coincidence, it does appear to help me settle in bed and get off to sleep. I’m not sure whether I should be doing this but my neurologist seems to have disappeared off the planet at the moment and I can’t contact him! I’ve suffered no ill effects from the extra dose but as I say, it does appear to help!
I take both time release and immediate release. I started out with time release because I was very restless. Then I started having bad dreams and the dr added immediate release.
My wife uses two extended-release type of 25/100 carb/levo prior to bedtime. We usually supplement that with an additional ER pill at least once or twice more during the night, thinking of 5-6 hours between dosages as being the longest safe time frame to avoid going into an off time. Consider also taking an ER melatonin between 5-15 mg. My wife uses one 10 mg tablet.
At 77, sleep has become my number one problem in last couple of years (five years after diagnosis). Sleep in one- to two -hour chunks. Often can't get back to sleep. Out of bed by 5 at latest.
I have tried a lot of things. Medical MJ (THC) was first, and it did seem to help but I often woke up woozy, so I switched to 25 MG CBD, 3x a day, and that seemed to help at first, but..... Ibuprofen and aspirin help with minor aches and pains that make it impossible to get to sleep. But my standby about three times a week has been Jack Daniels at 2 in the morning. Not always successful, but pretty good.
Three months ago, my movement disorders specialist thought I might have apnea. I don't, think I do, so I resisted sleep lab, which almost always ends up with CPAP machine. She added car/lev ER 25-100- at bedtime to my dopamine regimen, and I'm not sure what to say about that. Since she did it, I get maybe 2-3 nights out of seven where I can go back to sleep quickly and get maybe 5-6 hours sleep.
I found a sleep webinar with a very long URL at Health Unlocked useful but discouraging. They don't seem to know very much. One of panelists is Dr. Aleksandr Videnovic who works with PD and sleep at Mass General (about 60 miles from me). He impressed me; and I plan to see if he has a clinic I can get into when this lock-down finally ends
I tried taking one dose of Sinemet CR (25-100mg) before going to bed. I thought it would help with my insomnia, but it actually made it worse. Couldn't go to sleep at all. So for now, I'm not taking any medication during the night, except for an occasional antihistamine or melatonin pill to make me fall asleep faster.
I have a hard time at night. My legs are stiff. So it makes I difficult to go to the bathroom. I also wonder if there is something I could do for that. Including taking meds during the night.
I have been thinking about that very thing. I reached out to my neurologist and she said I could take an extra dose of Sinemet in the middle of the night if I had to. I was finding that if I got up to go to the restroom in the middle of the night I would come back to bed and couldn’t get comfortable. In addition, it has been difficult to roll over. So, my chat with my neurologist was a week ago. The crazy thing is is since I talkEd to her I have not had to get up in the middle of the night! Maybe just knowing I can take more medication if I need to was enough to make me sleep through the night. Who knows!?
I also had insomnia with severe restless legs after reducing my levodopa dose (taking mannitol) and eventually staying with none at night. It was a disaster. I didn't understand it was the lack of levopa at night until I spoke to a friend and colleague neurologist. It was all due to the lack of levodpa. Eventually after 2 months of insomnia, I talked to that friend and he pinpointed it. Now I take sinemet CR before going to sleep plus sinemet Plus. For your neuropathic pain, there are more solutions. I don't want to interfere, so try talking to your doctor again and for example ask if you are high enough with the GBP dose. Doctors are just human beings, sometimes you need to ask twice to your friends or relatives too. Neuropathic pain is a nasty one, difficult to treat but there are more solutions.
I saw among the replies someone had an aggravation of his insomnia after taking levodopa at night. If things get complicated, it does make sense to try to get a polysomnography. It is a recording of your activity at night with sticky electrodes on your skin. In some centres they do it at home, a bit like a holter. Then sleep specialists are able to read it and better define the problem. There isn't always a solution but it can help.
In my case I wasn't even aware I had spasms in my legs even though I had 85 per hour. I was so exhausted, I was falling asleep but woke up every few minutes...
I very recently started taking Sinemet 25/100 ER at night and I feel that it helps me sleep more peacefully and also, as you suggest, I don't feel so "off" in the morning. I had been taking just a half tab of regular Sinemet 25/100 before bed but found I would wake up very restless around 3 to 4 a.m. and felt uncomfortably unsteady in the morning. I started taking a second half tab in the middle of the night and that helped me, but the ER seems to be working better. Many times I actually sleep through the night, which is kind of a miracle!
I use mucuna pruriens at bedtime, middle of the night, morning and noon. Keeps my RLS at bay.
When I was first diagnosed the prevailing thought was that it was fluctuations in dopamine levels that contributed if not caused dyskinesia. A good reason to keep your levels up overnight!
Hikoi. Believe it or not I was thinking about you this morning whilst up a ladder! I was thinking how I hasn’t seen many posts from you lately (not that I’m one to talk. 5ish years in and I find that I have less to say than I used to 😕). But I was wondering how you’ve been since the DBS. I always trusted your analysis of any topic the group brought up so your reflections on your experience would be most welcome (good and bad) .Message me if you’d prefer?