TO sleep and wake with out getting out of bed .

[export]

I would like to know how some PD can go to sleep and wake up then go back to sleep with out taking anything or so I am told

IF I wake up I have to get up and take some thing . I am a wake for an hour.

How many can get back to sleep ???

yours EXPORT.

[Hidden]

Hi Pal,

I dont sleep very well , have about 2 hrs sleep a night then up , feel tierd around 2pm but cant be arsed to sleep its hard and messes with your nut , sleep deprivations is worse than waterboarding as a torture and iam sure we PD's are beeing tourtured every wakeing moment, but we have just to get on with it , this week has been crap for me personaly , till today and i went back to work, suppose iam one of the fortunate PD's who can indulge my self,

Not sleeping is one of the hardest side effects that some of us have to deal with, as for my self i just plug in my ipod add simply meltaway with some music, it works for me , just now i have had a few beers and i am listening to The Gratest 60 album ever.

Take Care Export

Al

[export in reply to Hidden]

I like your attitude. I know would get along with you. Thanks for the reply

yours EXPORT.

[Hidden]

I think that security company's should hire people with PD and set up monitor stations at home since we're up all night . Lol

[Hidden]

I sleep about 45 min to an hour, get up, read my Healthunlocked posts, read some scripture, Facebook... then go back to bed. Usually works. Get my best sleep after 6am.

[export in reply to Hidden]

Hi DICan

In your blog you don't say if you take any thing before getting back in bed . Also by the sound of it, were you out of your bed for longer than you were in it??

yours EXPORT

[Hidden in reply to export]

Some nights I take either acetaminophen or Ibuprofen. That helps most of the time.

It depends on how long I can sleep the next morning. I try to make all of my appointments in the afternoon....but this weekend I have 5 grandbabies (3 under the age of 4) staying with me.

When I can sleep late in the morning I try for 8 hrs. I have found it helpful to make the room as dark as I can and to watch the clock only for my middle of the night meds.

[nene1]

Hi Export,

Just like a lot of pwp I just can't sleep,it is very rare that I go to my bed, among night meds I've zopiclone & amitryptiline, but at most is a nod off while on comp or trying to knit (depending on the shakes)

my son has given up on trying to get me to go to my bed. It's the body's done in but the mind is awake!!!

Wendy

[export in reply to nene1]

Hi Wendy try,d Zopiclone didn't do any thing . Amitriptyline try it first night space,t out . After that nothing its not a sleeping tablet.

WELCOME TO THE CAT NAP CLUB

yours EXPORT

[ram927]

same but can go back to sleep fairly easy for another 2-3 hours but on a positive side you extend your day and I can be fairly productive in the extra hours after midnight many times it is during this time I get complicated thing s I had been working on a nd cold not do in the day time I can get donw in those extra hours.

[export in reply to ram927]

ram927

It would be a positive if I could get comfy.

yours EXPORT

[JAYNIE]

I take two P.M stuff what ever is on sale that month, one melatonin, ..... and my son got me lollypops with pot, (medical) one lolly lasts about 4 nights. I fall asleep around 1 or 2 and sleep for 5 hours. If I do wake up I never ever have taken my meds....I am fine when lying down. I have an electric bed and I sleep on my back with head and feet up........ no trouble falling back to sleep, must be the medical mari.

[BILLYRAY in reply to JAYNIE]

yo i think i love you lollypops sounds great nj is legal va is not so i go to nj for a pot run....really does help me Billy Ray

[JAYNIE in reply to BILLYRAY]

I HAVE TO BE CAREFUL AS ONE LOLLIE IS SUPPOSED TO BE 4 NIGHTS WORTH, THEY ARE SO GOOD I HAVE TO MAKE MYSELF PUT IT AWAY. TRY THEM AND LET ME KNOW, OKAY???

JAYNIE

[BILLYRAY in reply to JAYNIE]

jayne...email [e-mail]

[Court]

I take my last Stalevo and a small dose of Diazepan when in bed. Sleep for about 3 hours then bathroom visit. Take another diazapan and eventually doze until morning, waking frequently. Do not take any meds during night, perhaps I should.

[export in reply to Court]

Court . IF you had more L-Dopa would you take one in the night if so would you still take the Diazepam or not ???

yours EXPORT

[Court in reply to export]

Would have to be advised by my Consultant before I could make that decision, but would expect the Stalevo to replace the diazepam, which is only used as a relaxant to control my tremor and help me to sleep.

Will add this to the evergrowing list of questions to ask at my next consultation. Boy will they be glad to see me. I am usually in and out quickly.

[export in reply to Court]

ASK AS MANY QUESTION AS possable..Do you have to pay also do you have to pay for your pills

How dose it work very interested to know how you ???

yours EXPORT

[Court in reply to export]

I see either Consultant or member of team every six months. I also see a PD physiotherapist every six months to assess my condition.

As I live in the UK I do not have to pay for this or for my pills. I will ask questions as I like to know as much about my condition as possible and I do not like information to be sugar coated. I like to be made aware of the best and worst case scenarios.

[BILLYRAY]

I do not seem to have troule sleepin although the pain in my shoulders from falling tend to awake me nnow and than...I take my antivan and my leapro at bedtime and I have a sleep device that makes differant sounds..waves..rain on roof...train...etc..my main thing about a good night sleep is freck it no use wondering about it..God is in control...if all else fails i drink a beer or smoke a joint....Billy Ray

[export in reply to BILLYRAY]

Tel me BILLYRAY. Is the sound there to drown out some think else ?

yours EXPORT

[BILLYRAY in reply to export]

no the sounds are relaxing.....got an address i will send u a machine got an extra one walmart got em.....hang n there my friend....oh ya donot for get to pray that helps me too...iam 61 b 62 in march had the Parkinsonism..whatever ..for 4 yrs..still totally confussed none of my drs... want to call it parkinsons say it is a cousin so i guess i got Leory....were is the beer God Bless Billy Ray

[carolineb211]

I work full time, do a degree in my spare time, housework, shopping, cooking, 4 kids,husband, too bloody knackered to stay awake all night !!!!!!!

[export]

Well lucky look,y you. Some PD,s could not do ant of those thing. Are you sure you have Parkinson's Even 18years ago when i was young and fit i could not. .

IF you can fine the Please tel me which tablets you take ???

yours EXPORT.

[carolineb211 in reply to export]

I take 8 mg Requip xl.

Was only diagnosed in March last year, so early days for me. I do have a tremor with tightness and pain in my right arm and leg. I also get very weird heads which are not pleasant. I just refuse to let it get the better of me. I know the day will come when I'm no longer able to do all the things I do but until then its life as normal.

Caroline

[export]

The reason I ask what tablets you take is because its the tablets side-effects

which are the problem. As far as sleep. Am i right in thinking at the moment you don't take any L-dopa. If not try not to take them for as long as you can.

yours EXPORT. X

[carolineb211 in reply to export]

No export no L-dopa yet, and only low dose DA. I aim to keep of the hard stuff for a bit longer if i can.

[export]

Carolineb211.

You are doing very well .You seem to know what your doing . Are you in the UK Just interested

yours EXPORT.X

[carolineb211 in reply to export]

yes Export. I am from Berkshire

[export]

Hi carolineb211

My name is John and I live in Southport just past Liverpool. Not to sure where Berkshire is ? Would you say that you are well look after by the NHS.

Is your Hospital a trust with more chef,s than Indians like mine.

I will look where Berkshire is

yours EXPORT.X

[carolineb211]

hi John,

Berkshire is down south. Apart from when I was diagnosed, I haven't actually seen my neurologist. I saw a registrar that looked about 12 and didn't seem to have much of a clue about Parkinson's, couldn't make any decisions. she kept having to go out of the room to ask somebody a question, she clearly knew nothing. Then when I got home I had a phone call to say that despite what she said, my actual neurologist had decided to change my medication anyway.

I had originally been on mirapexin. Which made me so ill, I could barely function. The 12-year-old just said to reduce the dose, whereas my neurologist

decided to put me on Requip. It doesn't seem to actually do anything to help my symptoms much but at least it doesn't make me feel like death.

Caroline

[export]

Hi Caroline,

FROM the sound,s of it you are being fob off. I have had Mirapexlin 2.1 prolonged- release one a day. I stop't them . They did nothing

Caroline are you taking any other PD drugs.?

part 1 of my answer . yours JOHN

[carolineb211 in reply to export]

Only Omeprazole for the heartburn the Requip gives me and Domperidone for the nausea . No other PD drugs.

[export]

Sorry about before. The Omeprazole is given if you are taking Ibuprofen. without food.

When you were told you had parkinson's how did they know .Was it a case of going the facts and ruling out ever thing else ? Did you believe it or not ?

I don't believe half of any thing they tel me. I blame the tablets for most of my problems. I will write more in a bit

yours john. xx

[export]

HI Caroline

part 2 . Have you had a second a opinion .Before they said Parkinson's did any one say it was some thing else . Do you ever go off ?

Caroline Please tel me if you mind me asking you. Please feel free to ask me any thing you like. Some thing away from Parkinson's ,.just a chat .

yours EXPORT. XX

[carolineb211 in reply to export]

I'm not sure what it means to go off. I hear people talk about it but I don't really know what it means. I have days when my symptoms are worse than others and I seem to have periods during the day that are worse than others,and when that happens, my head, neck and shoulders seemed to judder slightly, it's an odd sensation and hard to describe.

I originally went to a private neurologist, who did a whole range of tests, including MRI scans, blood tests and urine tests to rule out MS and Wilson's disease. Everything came back pretty much clear. Apart from a few white spots on the MRI scan, which apparently is common. it was the second neurologist who did a clinical exam, and taking into account the progression between appointments diagnosed me with Parkinson's. All my symptoms are down one side and progressing, so there's no doubt that it is Parkinson's.