RE: Question(s) - Sleeplessness from Steroids?

[Guest guest]

Hi ,

Yes I have the same problem. I have always been " nocturnal " and am at my

best after about 4pm. Still, I have to force myself to conform to a more

normal waking time and consequently sleep poorly most nights. Mornings are

so difficult as I am forced to consciousness feeling like I've been run

over by a 10-ton truck but when it comes bed time my mind is buzzing and

I'm full of energy - go figure!

I wonder if it could be down to the steroids? I've thought about taking

them at night instead of in the morning. Does any one have any experience

or suggestions on this one?

Graham (37)

West Sussex, UK

At 01:38 27/08/2006, you wrote:

>I am sorry Kirk about your liver and I hope it isn't poopin out on you for

>many reasons.

>

>I also would like to agree that all the crappy stuff happens literally hours

>after leaving the doctor! Why? Grrrrr!

>

>Also, all day, as it is hot in CA and my body hates it. It is my kryptonite.

>I can barely function, if at all during the day. Could sleep all day. Then,

>around 10:00 PM, as it cools down and we open windows my body perks up and I

>am wide awake, ready for the day. Does this happen to anyone else? Could it

>just be my body reacting to the weather, knowing when it would rather

>function. And yes, the sleeping pattern is ridiculous and needs help. But

>who cares? If I function well at night and sleep during the day, what does

>it matter? I don't go to school or have a job. Should I " fix " it or just

>enjoy the cool weather at night? Any suggestions?

>

>In His Strength,

>

>, CA

>

[Guest guest]

Graham-

In my experience the steriods keep me up at night. I split my dosage so it

stays in me longer. I take the higher dosage in the am and the lower dosage in

the evening. It seems to help me. But I too am better in the evening then in

the am. And most of my sleeping meds don't work, I've tryed taking them earlier

in the evening so I'll get sleepy sooner. Doesn't help, I am still up until

12-1am. (sometimes later) Go figure, huh..??

Well get some sleep.. (smile)

Take care.

Love and Friendship,

Keri in CA

RE: Question(s) - Sleeplessness from Steroids?

Hi ,

Yes I have the same problem. I have always been " nocturnal " and am at my

best after about 4pm. Still, I have to force myself to conform to a more

normal waking time and consequently sleep poorly most nights. Mornings are

so difficult as I am forced to consciousness feeling like I've been run

over by a 10-ton truck but when it comes bed time my mind is buzzing and

I'm full of energy - go figure!

I wonder if it could be down to the steroids? I've thought about taking

them at night instead of in the morning. Does any one have any experience

or suggestions on this one?

Graham (37)

West Sussex, UK

At 01:38 27/08/2006, you wrote:

>I am sorry Kirk about your liver and I hope it isn't poopin out on you for

>many reasons.

>

>I also would like to agree that all the crappy stuff happens literally hours

>after leaving the doctor! Why? Grrrrr!

>

>Also, all day, as it is hot in CA and my body hates it. It is my kryptonite.

>I can barely function, if at all during the day. Could sleep all day. Then,

>around 10:00 PM, as it cools down and we open windows my body perks up and I

>am wide awake, ready for the day. Does this happen to anyone else? Could it

>just be my body reacting to the weather, knowing when it would rather

>function. And yes, the sleeping pattern is ridiculous and needs help. But

>who cares? If I function well at night and sleep during the day, what does

>it matter? I don't go to school or have a job. Should I " fix " it or just

>enjoy the cool weather at night? Any suggestions?

>

>In His Strength,

>

>, CA

>

[Guest guest]

Graham,

I would never take my steroid dose in the evening. I would never sleep! I

used to have to do that, split the dosage, but after about two weeks of that, I

felt like I was crawling out of my skin. Doc said it was because I had a

constant dose running through me, so I switched to taking it in the morning.

When I first awaken, I feel sluggish and stiff, but usually a little movement

& some java get me going. I love the mornings and feel like I can get more done

then. After about 1:00 pm, I am good for absolutely nothing at all. Then,

early evening, I am a little better sometimes (at least energy wise). I have

joked around with people that if the " little hand " on the clock is going

downward (afternoon or middle of night), I am not feeling well. I have often

wondered about this. A friend suggested that it could be our body's biorhythms,

but nothing else about this disease makes sense, so why should this?

Have a good day, all..

Gail

Graham wrote:

Hi ,

Yes I have the same problem. I have always been " nocturnal " and am at my

best after about 4pm. Still, I have to force myself to conform to a more

normal waking time and consequently sleep poorly most nights. Mornings are

so difficult as I am forced to consciousness feeling like I've been run

over by a 10-ton truck but when it comes bed time my mind is buzzing and

I'm full of energy - go figure!

I wonder if it could be down to the steroids? I've thought about taking

them at night instead of in the morning. Does any one have any experience

or suggestions on this one?

Graham (37)

West Sussex, UK

At 01:38 27/08/2006, you wrote:

>I am sorry Kirk about your liver and I hope it isn't poopin out on you for

>many reasons.

>

>I also would like to agree that all the crappy stuff happens literally hours

>after leaving the doctor! Why? Grrrrr!

>

>Also, all day, as it is hot in CA and my body hates it. It is my kryptonite.

>I can barely function, if at all during the day. Could sleep all day. Then,

>around 10:00 PM, as it cools down and we open windows my body perks up and I

>am wide awake, ready for the day. Does this happen to anyone else? Could it

>just be my body reacting to the weather, knowing when it would rather

>function. And yes, the sleeping pattern is ridiculous and needs help. But

>who cares? If I function well at night and sleep during the day, what does

>it matter? I don't go to school or have a job. Should I " fix " it or just

>enjoy the cool weather at night? Any suggestions?

>

>In His Strength,

>

>, CA

>

Visit me, your Kay Independent Beauty Consultant (10% of your order will be

donated to the International Still's Disease Foundation)

http://www.marykay.com/glmurphy

---------------------------------

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

[Guest guest]

Hi Keri,

I'm also up until about 1am or later most nights trying to get to

sleep! Sleeping pills do work for me but I feel like cr@p the next day so

I tend to avoid them.

Graham (38)

West Sussex, UK

At 16:42 27/08/2006, you wrote:

>Graham-

>In my experience the steriods keep me up at night. I split my dosage so it

>stays in me longer. I take the higher dosage in the am and the lower

>dosage in the evening. It seems to help me. But I too am better in the

>evening then in the am. And most of my sleeping meds don't work, I've

>tryed taking them earlier in the evening so I'll get sleepy sooner.

>Doesn't help, I am still up until 12-1am. (sometimes later) Go figure, huh..??

>Well get some sleep.. (smile)

>Take care.

>Love and Friendship,

>Keri in CA

[Guest guest]

Gail,

I guess I'll just have to accept that I'm not a morning person :-)

Graham (38)

West Sussex, UK

At 21:35 27/08/2006, you wrote:

>Graham,

>I would never take my steroid dose in the evening. I would never sleep! I

>used to have to do that, split the dosage, but after about two weeks of

>that, I felt like I was crawling out of my skin. Doc said it was because I

>had a constant dose running through me, so I switched to taking it in the

>morning.

>When I first awaken, I feel sluggish and stiff, but usually a little

>movement & some java get me going. I love the mornings and feel like I can

>get more done then. After about 1:00 pm, I am good for absolutely nothing

>at all. Then, early evening, I am a little better sometimes (at least

>energy wise). I have joked around with people that if the " little hand " on

>the clock is going downward (afternoon or middle of night), I am not

>feeling well. I have often wondered about this. A friend suggested that it

>could be our body's biorhythms, but nothing else about this disease makes

>sense, so why should this?

>Have a good day, all..

>

>Gail

[Guest guest]

,

I think you're probably right, I've always been a night owl so it probably

has little to do with the steroids.

The weather doesn't seem to affect me too much, though the recent extended

spell of very hot weather we had here did start to get to my joints.

Graham (38)

West Sussex, UK

At 06:28 29/08/2006, you wrote:

>Heres the thing. I always thought it was the steroids too, but I was like

>this before Stills and prednisone, and, knock on wood everyone, I am off of

>prednisone, have been for about 10 days or so. Don't know exactly, didn't

>want to dwell on it. And still these problems. It is just weird.

>

>The difference between before Stills and after/during is that I really think

>my body feels the weather outside and that effects how I feel inside (double

>usage intended). Does that make sense?

>

>In His Strength,

>

>, CA

[Guest guest]

I know how you feel. I wake a lot during the night and it often feels like

I just don't sleep at all, though of course I do. I just can't remember the

last time I woke up feeling like I'd had a lovely refreshing night's sleep.

Graham (38)

West Sussex, UK

At 04:36 28/08/2006, you wrote:

>Graham,

>I also have a hard time sleeping at night. I recently went off the

>prednisone so maybe I'll start to get some " night " sleep but thus far it

>hasn't happened. I wake up usually a minimum of 3 times & sometimes can't

>get to sleep until after 1am even with sleeping pills. Somedays I drag

>through the day hoping to be exhausted at night but even if I am I still

>have trouble sleeping so I try to nap during the day when I can!

>Take Care,

>Chris

[Guest guest]

Hiya

I have to say Im the same.. I go to bed around 1am, wake at 4am back to sleep

after 1 hour then up at 8am. Im tired all through the day but when i lie down to

sleep i cant. All i feel is restless and feel like my skin is alive and

crawling. Guess its the Pred then.

Nadine

RE: Question(s) - Sleeplessness from Steroids?

Hi Keri,

I'm also up until about 1am or later most nights trying to get to

sleep! Sleeping pills do work for me but I feel like cr@p the next day so

I tend to avoid them.

Graham (38)

West Sussex, UK

At 16:42 27/08/2006, you wrote:

>Graham-

>In my experience the steriods keep me up at night. I split my dosage so it

>stays in me longer. I take the higher dosage in the am and the lower

>dosage in the evening. It seems to help me. But I too am better in the

>evening then in the am. And most of my sleeping meds don't work, I've

>tryed taking them earlier in the evening so I'll get sleepy sooner.

>Doesn't help, I am still up until 12-1am. (sometimes later) Go figure,

huh..??

>Well get some sleep.. (smile)

>Take care.

>Love and Friendship,

>Keri in CA

[Guest guest]

Hey again.....this subject drives me crazy as it sort of came out of nowhere

on me as I didn't have this problem until I had Stills for close to 2 years.

That would have to rule out the steroids I'd think, and we have tried dropping

out various meds that have been added since, with no luck.

I've tried Ambien, but it has a low success rate with me. I used to be able

to take 2 Benedryl with warm milk and pass out but even that isn't that

effective anymore. The screwy part is that at least once a week I will wake up

at 8:00 AM, lay down and sleep non-stop until 2 PM. I've been to sleep

specialists who put me on a C-Flex machine for sleep apnea, have tried meds that

were supposed to wake you up and keep you awake for 12 hours (don't work, I've

been able to take them and go back to sleep immediately) so on & so forth.

I figure when I finally die this problem will dissipate, but I would like a

solution before then, as this really pisses me off.

Kirk

[Guest guest]

Hi Kirk,

One drug I've found that makes me sleep is Amitriptyline, which I take VERY

occasionally. They come in 10mg pills and the doc told me to start with 3

pills but not to be surprised if they didn't work until I got to 5 or 6.

Well being the obedient sort of person I am, I started with just one

pill! If I take one at around 7pm it is enough to give me a lovely relaxed

feeling by around 10-11pm and sound uninterrupted sleep through to 8-9am.

The only problem is I feel pretty fuzzy the next day and unable to

concentrate on much at all so I have to be sure I have nothing pressing to

do the next day.

Still I find if I'm just not getting enough sleep over an extended period

then one of these babies sorts me out for a while.

Graham (38)

West Sussex, UK

At 02:49 03/09/2006, you wrote:

>Hey again.....this subject drives me crazy as it sort of came out of

>nowhere on me as I didn't have this problem until I had Stills for close

>to 2 years. That would have to rule out the steroids I'd think, and we

>have tried dropping out various meds that have been added since, with no luck.

>I've tried Ambien, but it has a low success rate with me. I used to be

>able to take 2 Benedryl with warm milk and pass out but even that isn't

>that effective anymore. The screwy part is that at least once a week I

>will wake up at 8:00 AM, lay down and sleep non-stop until 2 PM. I've been

>to sleep specialists who put me on a C-Flex machine for sleep apnea, have

>tried meds that were supposed to wake you up and keep you awake for 12

>hours (don't work, I've been able to take them and go back to sleep

>immediately) so on & so forth.

>I figure when I finally die this problem will dissipate, but I would like

>a solution before then, as this really pisses me off.

>Kirk