Does anyone else with PSP have a problem with tension?

[LyndaEllis]

I wake up at 2am after 4 hours of sleep and rarely go back to sleep. From then on I am tense.

[jillannf6]

Hi Linda

I too have bad tension probs

M,ainly getting off to sleep and then the toilet stops in the night don't help.

I really think it is worsened by stress and others agree with, me

So it is difficult to avoid the stress element I know

[dorothy-thompson]

dorothy-thompson

Oh dear Liinda where do we all begin? I guess for anyone caring for someone who has a debilitating or life threatening condition, whatever it is or even has one of these conditions themselves, stress and lack of sleep goes with the territory.

I have nights when I can't get to sleep or I wake up after a few hours of exhausted sleep. However I am trying to develop strategies to deal with this. For instance I listen to a "phone-in" station and for a while the sheer ordinaryness of other peoples' lives takes my mind off my problems or I read for a while which is great for replacing those anxious thoughts of what is going to happen tomorrow with a trip into an imaginary world. Doesn't always work though because the reality is still there the next day, but we can always dream. Failing that, a large glass of wine always helps!

As I keep saying, nil desparendum, and, whenever you can, get out, meet with your friends, talk, tell anyone who will listen what you're going through and above all, do not suffer in silence.

Take care, we're all here for you and with you. Much love

dorothy-thompson

[peterjones]

hi Linda im afraid i fi into your bracket i get up at 2--30 3 am most mornings i find i cannot lay there once i am awake so i get up and go to the tv room an watch the tv until its time for my other half to get up[ my wife]\to get up\\so with the torch my hand an find my way out there use the toilet on the way through try not to make a noise or fall over which is always on the cards \\no sense in two of us being washed out in the morning and i make a cup of tea and settle down for the rest of the night i think thats where the saying comes from \\ OH LORD YOU MADE THE NIGHT TO LONG but i just run a few things past myself and i know i cannot change things and wait and see what the day brings and go on one step at a time anyway mate i have no tension not that im aware of i do not feel afraid to go forwards because a lot of it comes with fear of the unknown anyway good luck to you take care of yourself YOU ARE NOT ALONEi peter jones psp sufferer Queensland australia

[kpsmail]

I get up at 2.30or3 and Indo not sleep. Normalperson are supposed to sleepfor 8 hrs. It depends on age Once you cross 65 you sleep less .I think 4 hrs is sufficent for a person above 65. you can yoga ,particularly the ones which give some ecxercise to nerves and lastd I tried to keep head on ground and leg up It increased my sleep by one hour . I am 72 and my sleep prolemwas there before PSP Last one year it has not detotriate

[Kathy]

Hi Lynda,

Are you a PSP carer or sufferer?? I don't sleep well but tend not to take anything to help in case I have an "emergency" call out in the middle of the night. When Mum wasn't sleeping well we tried her on Clonazepam, which seemed to help a bit.

Hope you find something to help soon

love

Kathy x

[PD-plus]

My father has the same issue of sleeplessness and tension. Thinking about things that mean not so important in our lives. And if any real problem arises, he wakes up shouting in the middle of his sleep and his walking disability worsens during such situations.

[JudyJ]

Oh, my, yes. I was diagnosed with PSP 8-12 & haven't had a good night's sleep since, tho I do take a sleep aid at night. But I experience interrupted sleep frequently because of tension...still trying to wrap my mind around PSP, symptoms I'm experiencing, & at this point, calmling others about my own situation...then during the day I'm more tense because of poor sleep. A Catch-22. No easy anwers. During the day, one of the meds I take is a low dose of Xnax; it does help take the edge off my anxiety. For myself, I know if I'm unrested, it makes my symptoms worse & my anxiety higher. Judy from W. St. Paul, MN, USA.

[LyndaEllis]

Perhaps 4 hours is enouigh since I am 68. I take seroquel -even then I only sleep 4 hours.

I will ask the doctor to prescribe some trazodone.

[villagebabe]

I am a psp patient and have trouble sleeping. I watch the clock pass each hour about every third night. I started taking a sleep aid every third night and because I am in assisted living I am usually in bed bt 9 or10 and try to. Be asleep by 11:30or so Most often I wake up about 4:30 or so. Listen to my talking book then and don't sleep again. Or during the day. Usually watch the television for an hour at bedtime. I have slept better since moving the. Oxygenator into the adjoining room and slept well the last three nights. I haven't burn asleep yet tonight and it is 2:00. Got up when a feeling of anxiety came over me,which is very unusual for me ,which has been attributed to my strong faith. It has been 1&1/2 yrs. that I have been aware of psp altho I have been having falls for 41/2to five years now. I was incontinent for a long time but I am no longer and don't even go to the bathroom til I waken at four. My main complaint is my sight,my thought processes slowing and my useless left hand. I am. Now in a wheelchair full time and depend on poles which I pull up. On . I feel very fortunate to be as functional as I am at this point. More another sleepless night. Enuf for now. Lucille

[lepman50]

As for me My problem is Pain during sleep, I mean bad pain....I'm allergic to most pain meds and if the pain ist enough I wake up caughing and chokeing during sleep and some times wake up vommiting because the caughing is so intense and my gag reflex is so messed up I start vommiting. Whays relly bad is I use a C-pap machine for the sleep apnieaha I have developed along with this condition,so it actually can make things get worse.But I would say I wake more often with deep muscle and joint pain more so and luckly before Caughing and chokeing become worse.