Chiari sufferers-does time of day affect your functioning?

[chiarifamily]

I have not had one single day since age 10-16 were I could function between 3am through approx 12-4pm (i'm now age 31).  Its as if im allergic to lying down and sleeping at night and must recover from it every single day.  All symptoms worse in these hours(pain in head, head fullness, neck pain, tiredness, dropping attacks, extremety numbness, body temperature generally cold etc.)  kinda feels like a severe hangover with additional symptoms everyday.  Has anyone experienced this symptom?

[selmaS]

I have had my issues from childhood also....I find that my symptoms cycled......but I also noticed their intensity increased with activity.....the numbness would come and go...it is more recurrent now...I've started with the drop attacks in May '07......but the inability to sleep...always tired has pleged me for yrs.....my hands and feet r always cold.....I was dx with raynauds...and tarsel tunnel......but I can relate I was always a night owl...still am...I would rather sleep.....3am-to noon....lol....

don't know if that answers ur questions.....I do forget quite easily so I may have forgotten something.....

Good luck
"selma"

[chiarifamily]

diagnosed with reynaulds too many years ago.  knew this was bs but smiled and went on!

[chiarifamily]

if the whole world would sleep from 3am-noon, i would be a much more functional human

[jyojlynn]

Hey there!  Mine usually starts at around 2 pm and lasts until I go to sleep - but then I only sleep for an hour and then I am awake all night.  Lately it has been starting earlier in the day, though.  Every dr I have ever gone thought I was a nut case when I said I have a headache that starts at 2 every day. "That's not possible' they bluster at me. Yeah - you betcha dude!

oh sorry Selma!  I'm on the wrong post for ranting!!! LOL!!!

Joy

[selmaS]

that's quite alright Joy!!!

[Shane99]

My sleep schedule for the last 5 or 6 years has wanted to be from sun up till around 10 - 12n. Even sleeping pills barely touch me.

My wife says it's hard for her to go to sleep without me in bed, so I usually go to bed the same time she does (10p-ish) and we read or whatever and then she goes to sleep around 11p, and I get up and get online or watch a movie or something.

She wakes up at 6:30a and I usually go to bed after she's left for work.

As I said above; this is what my body wants to do. When I was working, I had to work days :(. I was always tired. Of course, I pretty much still am.

[selmaS]

I had the same resistance to sleeping meds also....I just lie there....ans when it's time to get up, is when I can sleep.

When I was still working I was dragging...a avg wk was 70  hrs......

Shane even having the surgery, ur sleep patterns the same?

[Shane99]

Yeah. The first couple of months after surgery was even worse. Now I'm some better. Maybe half the time I can't sleep.

I'm on pain pills, muscle relaxers and sleeping pills, but some nights nothing works. I think mine is mostly a pain thing, but my PCP is going to have me checked for sleep apnea pretty soon.

[selmaS]

well Ihope u have better luck than I did...I was sent to the sleep clinic and was given sleep meds....they didn't work, so he gave me diff meds...and wants me to go to a behavior clinic to learn how to relax and focus on sleep!!!....my insurance doesn't  cover this....and I wonder y he never did the testing for the apnea......

.....I guess this should be on the RANT.....oh well.....wish u luck.

[jyojlynn]

You know, shane, I don't sleep either.  I can go for three or four or more days without sleep. I have taken cymbalta, lunesta, over the counter, muscle relaxers, anti anxiety pills - you name it, I've tried it.  It's horrible to just lay there and see that the clock says 1 am, then 4 am, then 6 am.  I can usually fall into a light sleep about 15 minutes before my husbands alarm clock goes off.  I just don't think it is good for us to go for so long without REM sleep.  Makes you crazy!

[selmaS]

I know what u mean...it cycles for me...4 days no sleep, then when I do sleep it is not a refreshing sleep.
I also took sleep meds, the only thing they did was mess up my IBS treatment....now I need new meds for that.

[mleedix]

Wow... reading this forum makes me feel lesss and less crazy. Tell me ... They give me muscle relaxers and tell me they will knock me out instead the stupid little pill wakes me up! Is this just me being weird again or is this what you all are talking about? Many, Many nights for years even when I try to sleep I'll just lay there awake. Only difference is sleeping the next day as your talking about, forget it, can't do it. I'll sleep 5-6 hours a night maybe 2-3 days a week most weeks. Other nights I'm happy if I can get 2 hours.

[selmaS]

Hi....meds can react differently than what the intent is......it is possible for a med  designed to relax; instead of give energy....and for one to give energy may cause one to relax.....it can work differently on different people...also, I do not believe most of the sleep meds are designed for the neuro issues we r having.

"selma"

PS- I am sleeping much better after PFD.