Getting to sleep is sometimes a problem for me, the only way is to get up for a while
I found my sleep was interrupted and woke in the early hours. When I woke I was disorientated and sat on the edge of the bed wondering what was happening to me. My PD nurse gave me a slow release co beneldopa to take 1 hr before bed. This more or less fixed the sleeping problem, when I get to sleep.
The fatigue has to be a part of PD surely? I get tired and drop off if I sit down for any length of time in the middle of the day. When this happens I have had illusions on waking. They were not scary, just very real for a few seconds.
One side effect of my Madopar seems to be muscular pain. I take two paracetamol three times a day to lessen the impact of this. Some times it makes it difficult to get to sleep and find a comfortable position.
First thing in the mornings when I get up I feel pretty groggy for an hour or two till things get going and the meds kick in.
I shall be discussing this and other issues with my consultant next month.
Morph
I find I fall asleep around 6 in the evening for An hour or so but hadn't felt overly tired before then. Don't necessarily find I'm fatigued at any time of late but did before being given Pd meds. Had to complete a dvla questionnaire on whether I fall asleep in different situations, last thing I want is to lose my driving licence.
Sativex (made from cannabis by GW pharma in the UK) is used by MS sufferers to stop the shakes.
I am surprised that Sativex is not used by PD sufferers in the UK. Has anybody tried this? Any result?
Sativex will help you to sleep.
In short yes and yes, the parky bleeds off your energy both mental and physical, and the disturbed sleep patterns, which in my case were accompanied by hideous dreams and hallucinations can indeed be very very tiring, I have found that over the years I have developed a system which is when I am sleepy , I sleep I realise that this is not practical for many of PD sufferers and that I am lucky to be in a position where I can sleep in the afternoon as I often do not go to bed until 3 or 4 am, I suppose the words Roll with the Punches comes to mind, instead of clashing heads with the Beast I just go with the flow.
Hope this Helps Fed
I have weird dreams. Last night I dreamt I was walking round Grange duck pond when a giant alligator rushed out of the water and ate me.
To the best of my knowledge alligators have never lived in Grange duck pond. It makes life interesting though. I await tonights episode.......it's more interesting than telly.
I see the consultant on Tuesday. Due to all the cut backs I doubt they will stick me in the looney bin.
Some people pay a lot of money to see what we see and we get it free on the NHS. I'm with you Fed, just go with the flow......wouldn't mind a bit less pain though.
Morph.
amitripyline helps with sleep also the pain.
HI
after weeks of not sleeping and even more fatigue I gave in last night and took 10 mg Amitriptiline . I don t take drugs readily due to sensitivity to side effects. Anyway long story short had 8 hours sleep. Only woke to turn over and that was easier. Can t believe it. Hope it continues. Gus absolutely right. Seriously consider Amitriptiline.
bw Samdog
sometimes you get really nice dreams on them samdog did they ease any pain you had aswell !
Hi Gus
yes pain definitely eased but must admit feel sleepy today. Maybe no more than usual. Will carry on taking it and see what happens.
bw samdog
I have had a neurological disease, not PD for about 16 years, and I get fatigue. Fatigue is NOT tiredness or sleepiness, It is an all encompassing inability to do anything, when I get it bad I cannot even raise and arm from the bed.
It is caused by the effort of signals from the brain trying to reach where they need to but not being able to because of illness, blocked paths etc.
Fatigue can in fact be a symptom of PD, but what is described here by most seems to be tiredness, lack of energy, or sleepiness, all of which can come from the medicines or from the lack of sleep.
Just be aware that tiredness is not Fatigue.
I just had a peculiar couple of days. Like McCall says, not tiredness, a sudden inability to do a very simple job left me sat wondering what the hell was going on. I didn't freeze as such, but my arms became like lead. Lethargy was at 100%. It was like being unplugged. Cause unknown. Just one of the joys of PD, I presume.
Trying chewing (sugarless) gum - for some reason, chewing increases alertness and completely gets rid of day time sleepiness. It makes a huge difference to me in the afternoon after lunch; start chewing, sleepiness gone. If I stop chewing, that vale of overwhelming sleepiness kicks in within a minute or two. Simple solution that is good for your teeth, which in my case makes up for difficulty of cleaning my teeth properly before I go to bed due to PD.
interestingly, my work mates are all coming to me for gum too now, its not just PWP who suffer from post prandial narcosis
hi saturn ,was your meds coming to a end or just waiting for them to kick in !
Hi Gus,
I was taking meds as usual, no deviation or alteration. It was just like I had been run over by a steam roller.
Not that I have ever suffered that particular fate.
Just lately I have had a slight increase in the shakes.
The only thing that stands out as different is that my sweating increased with the warmer weather. Maybe I'm loosing too many essential salts. The sweating is attributed to my Parkinson's and has plagued me for many years.
Sweating sounds like a very inoffensive condition. In my case it isn't. I had real problems in my working days. Dehydration caused disorientation, splitting headaches, and on one occasion I keeled over.
My PD nurse advised Dyrolite salts to help.
Morph
i also suffered from sweating they do say you can get excessive sweating with pd ,i have regular botox injections in my armpits work a treat ! i get bad days when i over do it ,this wheres the pd drugs of quicker so take care. saturn
Gus you are confirming something I suspected, but was not sure of. Thanks for the input.
I am trying to be careful because of past problems. My entire body gets soaked and it literally drips off my nose in a continuous stream when I exert myself in warm weather. I look like I've been swimming and not dried off.
There is a catch 22 which is hard to combat..........no exercise = no sweat...............but muscle wastage and weight gain are a problem......exercise = sweat......feel lousy but helps keep weight down and muscles working.
It's like a 5 ball juggling act trying to keep all the balls in the air. The consultant I saw before it was confirmed as part of PD tried everything.
There is an op which disconnects nerves in the spine, but it is a very dodgy op. It was decided to give it a miss. I'd rather sweat and control it than be paralysed.
I look at it this way..........I'm 64 and knackered basically.......it's been a good ride and I can't complain, it's now time to make the most of good days and ignore the bad days.
It helps to know I'm not suffering alone and I still have my sense of humour. Things could be worse.
Morph
I've just started having nero pyhsio its just mild movements to try and get the lower part of my body moving ie bum & stomach muscles moving while trying not to wear me out referred to by gp after pulling out my shoulder also had bed lever fitted by ot great now getting in & out of bed ! take it easy morph sometimes we forget were ill & over do it ! .then we pay for it.
Too right Gus I have come down to earth with a bump several times pushing the limits. Today for some reason better known to my confused brain I am having a good day.
Hope the physio helps, I'm sure it will. If it does we have till 2016 in Rio De Janeiro to get ready for the Olympics. Not the paralympics, the full blown ones.
I am entering the Marathon, I fully expect to loose at least 5 stone in sweat and gain an Olympic gold. They will not hang the medal round my neck because the weight might tipple me over.
Can I put you down for the Shot Put, Javelin and Hammer Throwing?
Morph.
no problem quite fancy the hammer throwing ! some people say its good to start the day with a shower as the spray on the back of head & neck stimulates the brain works for me give it a go ! morph