Continuing the discussion from Intolerance to levodopa:

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Hi I’m Tommy .this is. my third day and night fully awake this week it was the same last week but I did snooze during the day. This week with the weather being better I forced myself to stay awake all day Walking out shopping and with my dog for at least 5 hours a day but with only 1hour snooze today. 2weeks ago my GP received a report from my neuro to withdraw my levodopa “BRISKLY” and increase my clonzepan I’m also taking duloxatine however when standing my leg tremor is intolerable but stops when walking although it feels like I’m constantly going up a steep hill and when lying down I can feel it shake even though it can’t be seen this part is a new thing this is on my right leg but my left hand couldn’t pull the skin off a rice pudding. Sorry to ramble on but I’m so fatigued and angry I feel at the end of my rope Is there any tips ,advice out there. for Getting a proper sleep ,.Please don’t say lie at the edge of the bed as I’ve heard that one .PS it’s taken me over an hour to type this. Thanks losing the plot …Tommy


hi tommy before i start i have to say this is up to you to make the choice like you and many pd sufferers i have bad insomnia i chose to try cbd oil its canabis based but with funny stuff removed you can get it in holland and barret which seems to satisfy my neurologist and pd nurse if you drive it will show on breatheliser check cbd and holland and barret posts plus on you tube ride with larry and micheal j fox foundation i,m getting double sleep i was so far no side effects check any meds you take with gp or pd nurse hope this is some help

Hi Peter
So kind of you to reply .Would you believe it I was sleeping, ironic, Anyway I got to about 6 o’clock this morning and then the dreaded stomach cramps and sickness paid a visit nothing to do with the fact that survive on a slice of toast most days and multi packs of crisps through the nights .I just basically collapsed about 7o’ clock .There is a Holland and Barret local to me so I shall get Myself down there now .Driving is not an issue coz I got rid of the car .I would either be too tired or my right leg shook on the accelerator so much it was crazy …Thanks Again my friend God Bless …Tommy.

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Hi Petec
I managed to get some of you’re suggested oil .A bit difficult to roll with my dodgy left hand and soggy to light. Joking Sorry.
Really though so far so good I missed the 4am club that’s an achievement.
For a man in you’re position to reach out and help little old me is truly humbling.
You are indeed the definition of a true gentleman.
If it was possible for me to grant you a wish it would be quite simply CONTENTMENT
Thanks again my friend… Tommy

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hi Tommy really glad it worked for you only to glad to help keep me posted on how you get on

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Hi Pete
Still works so far do you you listen to podcasts I think I’ve found one to use in conjunction with you’re remedy .it’s called "SLEEP WITH ME " by someone called scooter PS I’m aware the title sounds weird but so is he in a nice way he keeps going off in multiple tangents maybe it’s worth a try if you don’t mind being bored to sleep that is
Take care .Tommy.

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hiTommy really good to hear you,re getting some sleep hope 4am club are still friends😃 i usually listen to some soul saxaphoe music about to take my medicine! earphones in and away with fairies hopefully take care my friend

Yo bro me woz snuggled up in me cot for most of thee night man
Why am I talking in a Bob Marley style? Must be a side affect .Anyway that’s 3nights in a row you don’t know what that means to me .
What am I talking about of course you do you are the guru .
Only woke up twice for the bathroom but that’s something to chat with my G P about well not really his, he’s the best doc I’ve had so far but he has hands like a navvies shovel and fingers like a bunch of bananas so I think I’ll wait until he goes on holiday and hope he’s replaced by a very slight locum if you know what I mean
Hope you enjoyed the saxophone and Fairyland’
God bless Tommy

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Hi peter thanks to you I’m still getting reasonable sleep.
I went to my doc today to discuss this matter
It wasn’t my own G.P he was unavailable and I felt she couldn’t care less.
In fact I felt she couldn’t get rid of me quick enough I think I was as welcome a rabies in a guide dogs home
Or maybe a fart in a space suit .
Anyway went t my cot early about 8 pm got rudely awakened by my wife at 3.30am Being accused of digging my elbow in her back… I told her that wasn’t my elbow l.o.l
Anyway you’re sleep tips have been a Godsend. …a lot better that my visit to the surgery sleep well my friend. Tommy.

hi really glad it worked for you always good to help as never know when you need help yourself keep in touch

Good News Peter
Been offered a new job as the local football team’s new coach.
One problem though
They want to take all my teeth out and put seats in.
PS still getting at least 6 hours in noddyland MOST NIGHTS. But jokes are getting worse .
Swings and Roundabouts EH …God Bless …Tommy

What time do you take your last pd meds as if you take to late ie 9pm then pd meds will kick in say 9.30 10ish and this is called on your brain will be like a light bulb on all night well till about 2am unroll it is take last meds 2 hrs before bed and they should be starting where by time you get in bed.or if you take cr tablets then this is different as they release slowly through night hope this makes sense

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all this extra sleep definatly having an effect on your jokes can,t win em all really glad cbd is working .only thing cheering me up at minute is my team lfc going strong in champions league been a fan since 1971 according to mam still not grown up yet😄

Hi Gus
I am a work in progress my levodopa was (withdrawn briskly) 3 weeks ago and I’m only on antidepressants and clonasepan so my symptoms are getting worse
They are mainly depression, severe right leg tremor and a virtually useless left hand so I’m at the moment in limbo
I take my last meds at 8.30 including CBD oil and retire at 9 if I’m up at 2 or 3 then it’s much better than I was 2 weeks ago because before the oil I could be awake for 48 hours straight and in danger of doing God knows what to make it go away… Tommy

Have you spoken to your pd nurse about taken slow release tablets through the night ie sinemet cr also .I’m on amitriptyline these are a anti depressants but really good for sleeping and don’t wake up morning feeling like…Also have you tried Azilect really good one a day pd tablet but helps a lot of symptoms ie walking,tremors. And you could also ask about a add on drug entacphone these make you sinemet drugs last longer in system. Ie remember eating cheese and other high protein food can wear tablets off quicker.need to put these suggestions to pd nurse or a good gp if understand pd

Hi gus thanks for taking time to reply
I’ve already been on Sinamet for six months to no avail I asked my neuro for DX but the the reply was I don’t know even though in the first report it said I had mild PD on the left side and a functional tremor on the left.
Also I don’t have a PD nurse probably because I’ve got no definitive DX
I will just have to patient… CONFUSED… Tommy

Hi Gus
Just a little more Info for you
My neuro is not head patter which is good
But his face is unreadable if you know what I mean
I can’t tell if he can’t be arsed or if he’s relishing the challenge
I went to my surgery last week for my insomnia I couldn’t get my own GP so got a woman couldn’t understand why I felt so unwelcome like rabies in a guide dogs home
But thinking about it now I remembered she asked me what I wanted her to do
So I said a cure would be good or even a DX
So when I’m filling in the Stazi form… ( PIP) I won’t have to put I don’t know in the illness box .
Now I’ve remembered she had a German surname oops…God bless …Tommy

Mirapexin was knocking me out for 16 hours a day.
Now on one Azilect one sinemet and one mirapexin at breakfast. Another sinemet at lunchtime and another early evening (if I can remember).
If I take the last sinemet too late,like last night then my sleep is disturbed even more than usual.
I also get a craving for chocolate which is piling on the pounds.

So sorry to hear your going you brought smile to mam and me glad i was able to help you look after yourself
Pete and mam