help please PArkinson RLS, need to sleep

[marcet]

Dear all,

I have been diagnosed with Parkinson end of 2012 and i am now 65 years old.

Based on my neurologist prescription I am actually taking weekly b1 injection and

07h 1 azilect, 1 requip 2mg, 1 madopar 125mg capsule and i feel fine

12h 1 madopar 62.5mg capsule et 1/4 madopar comprimé and i feel not so fine, a bit slow

17h 1 madopar 62.5mg capsule et 1/4 madopar comprimé, 1 requip 2 mg and i feel not so fine, a bit slow

Then the nightmare starts :

Normally i have to take 1 madopar dr slow release 250 mg before going to bed.

If i take it at 10pm, i have rls from 9p up to 1 am and can’t sleep before 1am and then i am up at 4am or 5am

If i take it at 9pm, i can sleep well from 10pm to 00h30 am and then get rls and can’t sleep and i am up at 4am or 5am.

it’s a nightmare

what would you suggest to get the best possible night from 10 pm ?

Thanks for your help

Marc

[Esperanto]

Very recognisable Marcel…. The debilitating effect of poor sleep is perhaps one of the most troublesome PD complaints. For me, not with the combi RLS but a PN, a modified vitamin B supplementation “normalised” my sleep patterns within a week (from 2 hours to 6 hours!). The pain attacks have almost disappeared. Since you have a doctor who has prescribed vitamin B1, my advice is most likely redundant, but just to be sure, have your blood checked through your GP for vitamin B12, B6 (Some people have very high serum B6 levels what can lead, just as a too low level as in my case, to neurological symptoms), B1 and B9 folic acid.

Other members may be able to advise you on adjusting your medication schedule, but the solution need not always be in increasing medication. Better absorption is just as important. Good luck for you and “dormir bem”!

[marcet in reply to Esperanto]

many thanks

[Dragona in reply to Esperanto]

Hello can you tell me please which b vitamin complex

[Esperanto in reply to Dragona]

It does not matter that much, but note that the B6 component consists of P5P and not pyridoxine which is harmful in excessive amounts. I take “Vitamin B komplex intense” from Vit4ever. But as mentioned, preferably have all your B levels tested with a detailed blood test so you know which supplements you really need. I so regret not doing that earlier. It could have prevented many (including irreparable) symptoms. 🍀

[Marcia123 in reply to Esperanto]

writing this at 2:49 AM Difficulty sleeping

[Astra7]

I have improved my sleep quality with 5mg slow release melatonin and 10mg CBD before bed.

I was also prescribed pramipexole which I take in the morning, but I think it is causing me to wiggle around so I would take that one with caution.

[marcet in reply to Astra7]

Thanks, melatonin doesn’t work, just increase RLS

[Sydney75]

My HWP uses the neupro patch at a low dose 1/3 of of a 4mg patch and it has really helped with the leg jerks. We notice they come back when he forgets to put on a new patch. Not sure he really has RLS because walking is supposed to be a relief for RLS and that does not really help him. I think his leg jerks are myclonic jerks which is different cause than RLS. Patch helps, low does klonopin is used for myclonic jerks. Good luck. CBD gummies with 5% THC has helped his sleep too.

[marcet in reply to Sydney75]

many thanks

[laglag]

Try a weighted blanket. It works for me.🥊

[marcet in reply to laglag]

many thanks

[chartist]

Some people find benefit for their restless leg syndrome (RLS) by putting a quarter teaspoon of baking soda (Sodium Bicarbonate) in 4 ounces of water, mixing and drinking that right before going to bed. There are only anecdotal reports with no studies to support it, but it seems like a simple, inexpensive and non invasive thing to calm the RLS and try to help get a better nights sleep. If you try it please let us know if it helps you or not as this is an often mentioned problem on this forum.

Art

[marcet]

many thanks, i ll try tonight and keep you posted

[Hidden]

Probably not recommended but I pop 400mg Ibuprofen after my first wake up. Gets me another couple of hours. Check with your Dr first. Best wishes & good luck with it.

[marcet in reply to Hidden]

many thanks

[estubbs79]

I am so sorry to hear that. I can’t take that much medication. Too many side effects. Mostly natural for me. I have been struggling with insomnia the last three months but I’m working on it Daily and napping when I can

[marcet in reply to estubbs79]

thanks

[Pezo]

Well , I think you need a different class of drugs specifically to help sleep , like a benzodiazepine type / tEmazepam or Diazepam

[marcet in reply to Pezo]

thanks

[ryzlot in reply to Pezo]

THC works well for me

[MattAA]

You have failed to mention what your exercise regimen is like. I encourage everyone who’s looking at this website to remember the exercise is an important pillar defining greater comfort and less symptomatic issues

[marcet]

i am not much into sport but i usually walk 45 mn per day

[LAJ12345]

for my husband the slow release madopar was a nightmare giving him insomnia, constipation agitation and made him suicidal. He is 100% better on the instant release 12.5 /50 and he only needs 1/2 of one at bed time.

I think overlaying doses build up during the day and the natural dopamine cycle peaks at night too so it is easy to be over medicated and suffer symptoms at night. The PD nurse said my husband was sundowning and it was pd progressing but when the medication was decreased and he went back to the instant release it went away.

[marcet in reply to LAJ12345]

thanks, before going to bed i will try the instant release 12.5/50 but i think it is not enough for the full night

[LAJ12345 in reply to marcet]

if it doesn’t seem enough you could take more of the instant instead of the slow release ie a 25/100. For him it was the slow release was the problem. It probably depends if you are producing any naturally too. That peaks at midnight and has low point at mid day. See my rough picture

Overlaying doses

[marcet in reply to LAJ12345]

thanks

[Hikoi in reply to marcet]

i agree with LAJ. A build up of slow release gives me the tremors. It took ages to work out what was happening. I didnt realise the levadopa was actually giving me tremors, real bad and it could take 2 hours to stop. I go to bed under medicated now and manage through the night, even though turning is difficult (and impossible without a bed frame to hold onto). I am quite good when first I wake in the am and can move quite well. I wonder why you need any levadopa at night and especially a whacking 200mg when you only have 200mg over 10 hours during the day. Personally I would want to try 100mg doses at 7am 12 and 5pm . I would also try without any night medication for a few days and if that doesnt help take short acting 50mg or if that isnt enough 100 mg. Good luck.

[marcet in reply to Hikoi]

thanks, without the 250 mg dr dose i couldn’t fall a sleep at all and rls was worse.

[Hikoi in reply to marcet]

oh dear. You must dread niight. All i know about rl is there is a forum on health unlocked you could join. Some of my friends use agonisfs at night for rl and neuro says you have to rotate meds every x2-3 yrs as they stop working.

[marcet in reply to Hikoi]

thanks Hikoi

[Rafafan]

My husband is on madapar and he can't sleep at night either. He has been told to have 2 pills at 9am 1 pill at 1pm, 1 pill at 4pm and 1 pill at 6pm and he still sleeps most of the day on the sofa and is awake at night. He's wide awake when I go to bed at about 11.30pm and he doesnt go to bed till 1 or 2am and only leeps 2 hours. His body clock seems upside down as he's dozing all day. Some days he tries to stay awake and watch TV or do gardening or something but he staill can't sleep at night. Sorry I can't help but just so you know youre not alone in this problem My husband is 68.

[marcet in reply to Rafafan]

very difficult too, thanks

[Civic407]

Hello. I also developed severe restless legs and ran on about 2 hours of sleep for a few months. Changing my rytary dosing didn't help. Marijuana before bed did bring some relief, especially indica gummies. My tremors were gone and my legs didn't have the urge to constantly move so I could sleep.

[marcet in reply to Civic407]

thanks

[Ascme2ski]

I take Queitamine Fumarte for sleep works great

[marcet in reply to Ascme2ski]

thanks, how long have you been using it ?

[Ascme2ski]

9 months nothing else worked

[marcet in reply to Ascme2ski]

thanks

[Kat343]

Perhaps you may want to try Magnesium for RLS. It seems to help my husband with PD and my sister with RLS. We use Magtein, I divide it into 2 doses after dinner (its normally 3 pills for a full dose) and also use Magnesium Oil spray on his feet every night as its highly absorbable. I also give him CDG (some research shows the 'G' may be good for PD) and THC gummies at night. We use the Wylde brand. I started him on a 1/3 gummy to make sure he could handle it well, and now use 1/2 gummy very night. I think it all helps. We just started this regime in May and overall, his restless legs (or it may be REM Sleep Disorder) is definitely better! Good luck, lots of good ideas here.

[marcet in reply to Kat343]

many thanks

[st8farm]

My daughter-in-law is a nurse and told me to try Magnesium in the evening to counteract sleep problems and feelings of depression. Has worked like a charm.

Larry

[marcet in reply to st8farm]

thanks, what kind of magnesium helps the best ?

[st8farm]

You can get it in 3 or 4 different versions but the one that she recommended to me was a powder named CALM. You mix it up like hot tea and drink it. Made by Natural Vitality and is flavored Raspberry-Lemon flavor. I also have it in pill form and take one in the afternoon and one before bed.