Lack of sleep


#1
I regularly wake up at 3am and I stay awake all night (my record is being awake for 21 hours straight).I realised last night that I wake up in the same position I fell asleep in; I also have numb arms - I'm not moving in my sleep.

Anyone else having this problem? Any solutions?

Thanks

drj

www.dialoguewithdisability.blogspot.co.uk

#2
I have similar problems. So far I haven't found any solution that works for long. I was told recently that pd turns the body clock upside down, certainly if I am not asleep before about 11pm then I am awake for most of the night. I catch up with an afternoon siesta.

#3
Hi Dr Jonny.

I have just posted a reply under Cramps which may help you. However the downside to this medication is that I sleep more deeply and am unable to change my position in bed resulting in cramp down the side on which I have been lying.

I would love to know if you find a solution

#4
Thanks mosie and keygirl. I wish there was a solution too. Lack of sleep and tiredness is such a burden

dr jonny

#5
Hi - my lack of sleep due to PD has been compounded by ongoing chemotherapy. I also get fatigued easily and walking has become a big problem. My PD prescription needs updating but both consultants (cancer & PD) have advised against it for 2 or 3 months!! What can I do?

#6
Hello Dr Johnny
I bought a nuclear powered adjustable bed, not only does it adjust to thousnds of a inch, it also applies heat to aching limbs whilst generating enough
spare electricity to supply four houses. Seriously I do have a adjustable bed and it does aid restful sleep, but its a double edged sword as when I sleep deeply the
Night Terrors return with a vengeance.
Kindest Regards Fed

#7
I am certianly experiencing the inability to have a nights sleep and I don`t like it!
Like some others I have to cat nap while my disabled daughter is at the day centre.

If anyone has found a way to help this problem I'd be very interested!!
Tony in Cornwall

#8
Thanks Boyo, Fed and Tony

I take prolonged release mirapexin and madopar (levadopa). I take the madopar 4x a day and I used to take the mirapexin on a morning. Because I think I'm not moving in my sleep I take the mirapexin when I go to bed along with the last dose of madopar. Its early days but I'm waking up around 5am (as opposed to 3am) and I'm waking up in a different position to the one I feel asleep in.

Worth a try...?

DISCLAIMER: this is not scientific :smile:

dr jonny

#9
Lack of sleep??

I never get a full night's sleep as my OH, the PWP, is up 2 or 3 times a night to visit the loo. They get back to sleep within a few minutes but it takes me an hour or more.

Next day, sleep deprived me has to cope, OH has many naps during the day. Let's give a thought to the carers please.

This is why I am on the forum so late, hoping to be so tired that their night time wanderings do not disturb me.

#10

As you will all know, if you have PD then you will have sleep disturbance, or depravation , its all a trade off you play the game with the most evil of invisible entities if  you take the optimum amount of Anti Parky drug , in other words enough to achieve normality then you know what to expect when its time for bed, at least dreams which are unpleasant, at worst  you are thrust into a parallel universe , a dark and dangerous world where evil is king, things you trusted in your waking hours  become the enemy when you sleep, I become a killer, a manic fighting machine shooting slicing and beating to a pulp all who come within range, I  find my lovely wife having well lets say relationship with two of my friends every detail is there ,then they notice me and they laugh at me Its fatal, I shoot all three in the head then ring the police. I watch as a giant 747 crashes into fields near my home , that is horrific enough but when I run to the crash site bodies lie scattered blackened and scorched I hear children screaming and plunge into the flames, I release the safety belts and throw them out of the shattered hull of the massive Aircraft then I reach two little girls, my two little girls, I release the belts but cannot free them their legs trapped in twisted metal , I scream with anger fear frustration , and then I see the fire axe so I have a  choice chop off my daughters legs or leave them to die, or stay in the  fearsome fire and burn with them ,the pain is real the heat is real my daughters screaming "daddy help us help us" pierce through my unconsciousness and a break in the side of the fuselage  appears and I cant bear the searing heat and leap to safety, my daughters screams in my ears ,I scream and sob my heart out I gradually regain consciousness my wife shouting " your dreaming, wake up its only a nightmare" I return from hell I am awake its 3.30 am and I have no intention of going back to sleep for I always return to the same horror and take up where I left off, I wont sleep again until the end of the day, as I cant even escape when I snooze how my mind  holds up I do not know.

This was one of the worst night terrors ever it occurred last Saturday,every night I visit scenarios almost as bad and if you combine the terrors and the hallucinations, visual tactile and auditory ,it does not make for restfull sleep.                          Regards   Fed


#11

Fedex,

It's good that you can describe in detail your worst scenarios, it's good to share and offload,  BUT just think for a moment about a newly  diagnosed  PWP accessing this forum and hoping to have their fears  for the future  allayed in some way

Ask yourself if you go some  way into allaying those fears OR  worrying them as to what may, or not, occur, in the future, maybe unnecessarily??


#12

You are correct in your view that I may be alarming new additions to PUK  or  PFUK and yes some lucky people may escape the savagery of the visions that haunt me and I of course that would please me greatly .but for warned is for armed as the saying goes, though having four arms would be  a bit troublesome unless your chosen trade is painting and decorating.   Sorry benji I do  not  mean to be disrespectful  but the disturbances that haunt my sleep  have been practising on me for 20yrs and  just when I think they could not possibly worsen, they introduce me to the  latest updates and I have to start again from scratch building defence mechanisms to ward off the newly refined versions, which can be too difficult to post on this Forum,and do not make for pleasant reading, so yes you are right I maybe should not be so graphic , but if I was about to walk into a minefield I would like to know where and what kind of mines I may encounter.

                                        Best wishes               Fedeye roll

 


#13

Fedexlike, your night terrors sound torturous beyond belief.  For that torment you certainly have my deepest sympathy.  To this date, I have not suffered more than the occasional run-of-the-mill nightmare.  But your sharing now may help me in the future; if and when I begin having worse sleep disturbances (what an understatement!), at least I'll know it is not insanity but one more gift from PD and its treatment.

Best regards,

J


#14

When i first started pd medication i did have a few very vivid dreams  one involved me being chased by the klu klux klan  and another not so pleasant dream which i wont mention  but  i did have a weird but funny dream , i was all set to go away for  naughty weekend when i opened the caravan door instead of seeing the guy sitting there , my mother was sitting there waiting for me ,Mr P  has a lot to answer for eye roll

 


#15

Hello J and Shelly.

                  Thankyou for replying, ,the subject of this thread is always difficult to write about as it forces me to  delve into my memory banks and its similar to opening old wounds, it hurts, and as its 2.00am and I am soon to do battle, I will let sleeping Dragons lie awhile.

                         Best wishes I hope the year is good to you.   Fed


#16

Same here , i hate that i rarely get  a "tidy" sleep these days, and i was such a lover of sleep lol i could sleep the clock around when i was working, but since being diagnosed at 32 im now 52 im lucky if i get 3 -4 unintterupted shut eye !!! i hate it..........i try to get a routine going, but fat chance of that,  ive tried loads 0f differant routines , like no cat naps during the day etc.........im staring at my ceiling and walls till god knows what hour, try to stay in bed rather than get out and watch tv or jump on here for a while ,once im on here (my pc) lol i cant get off the damn thing lol

                              anyways you all keep safe please

                                         ((cwtchs))

 

                                         Hugh aka Welshbearuk


#17

Hello Welshbear.

 Last night or early this morning I went to bed, or Fed went to bed to rest his head but had to fight a war instead, the prospect filled me with  dread,around me lay my comrades all of them dead all were shot in the  head , as I walked among them I  my dead friends I was carefull where I tread as brains were spattered everywhere when they should have been in their head,they had all been executed and I would track down their killers and administer justice , I found them sleeping Piepers  SS AND ATTACKED immediately with total success  my friends avenged but oh what a mess this was D day as it appeared to me, thank god its something I shall never see, we owe so much to our Warriors over the sea.

I have adopted a poetic slant to my terrors last night as it seems all I do is fight fight fight,but  read between the lines and the truth lies in plain sight,

Thank you for replying Hugh the words I have laid down are not meant to be flippant but to tell them as I experienced them I am sorry I just couldnt. .it sounds like Baldrick in Black Adder but  it is  still much sadder and makes less sense than a old sheeps bladder.       I know I know but I couldnt think of anything to ryme.

                                                      Fed

                                                               Fed


#18

same here its 5pm in the afternoon and i am totally exhausted need to go have a nap  i can sleep for england during the day but come night time i cant sleep  5.30 am when i went to sleep this morning confused


#19

Hi  Shelbig grin

 As you can see I am glad to see you, have you decided to stay in the same body for a while, it must be tiring all that morphing into alternate entities , a bit like Dr Who.I lost so much sleep last night I decided to have a few zzzzz s this afternoon, MISTAKE not only was I instantly in a very unpleasant dream, I wont go there, but a vivid hallucination appeared I have seen this horrible small ,,Thing.. for that is the only name for it,, come to think of it  the --Thing and  It -were a couple of horror films, Im digressing again, my Lady gives me a good  ticking off if I digress, thats  a bit unfair but in sickness and in well you know my  angle, as I was saying  before being rudely interrupted by,??me,  this little creature , it looks like one of those Gremlin thingies from the movie of the same name, it has long pointy ears and long fangs, a bit like a Yorkie, I know his game now he jumps onto the mirror wardrobe and clings there for a while like a housefly, then he leaps on my bed and crawls towards me , then you will never guess, I  shouted at this horror F<<??!!k OFF, and it did, I am no longer scared of these  visions Shel, they have battered me for so long that even when I am sleeping I  see them for  exactly what they are , isnt it strange how we adapt and defend ourselves, now its just parky to deal with.                            Night Night  Shel  I hope you are dream free.

                                              Fed

 

 

 

 

 

 

 

 

 

 

 

 


#20

Hello J

                 Its 1.30 here in UK  and I was wondering if you are affected by  the terrible weather over there, if  you are keep warm, I have noticed that extremes of cold or hot weather disable me ,even Ddpa will have no effect, and it looks bad but it is winter and these things are supposed to happen, just dont  send it  Eastwood or ward should I say.

                             Best wishes and good morning

                                               FedcoolIm wearing these to stop snow blindness?