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  #1  
Old 10-22-2009, 10:51 AM
1Lily 1Lily is offline
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Join Date: Oct 2007
Location: California
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Default Sleeping sitting up

Hi,
I have needed to sleep in an almost upright position at night, to avoid feeling like my brain spent the night in a blender.
Does anyone know what this means?
I also end up with a headache near the end of the day - front right side of head, near the shunt.
Actually, now that I think of it, I have been getting weird pains along the shunt path as well.
Any input? Sound familiar to you shunt 'veterans'?
Bless you for all of the help that you give to newbies like me.
Lily
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  #2  
Old 10-23-2009, 03:12 AM
hydromom hydromom is offline
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Location: back in toronto after living 12 years in acapulco. Son's condition required a move home to Canada
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Hi Lily

Sorry to hear your having a difficult time getting comfy. My son has always required 3-5 pillows to sleep.
During ICP monitoring it did display higher pressures the flatter he was. Af ter 2am his pressures did seem to come dowm a bit, so I will remove a pillow or 2..still do it.
ICP peaks at 2am according to NS and others.
My opinion is that a properly functioning shunt should adjust to the change in position.
Good Luck
Marilou
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  #3  
Old 11-15-2009, 10:29 AM
DystoniaGal DystoniaGal is offline
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Lily
Havent been here in a while. You sound like you might be overdraining. I sleep on an incline to help with the overdraining. Do you have an anti-siphon?
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DYT1 positive dytonia . Dx 1989.
Deep Brain Stimuation at Shands at UF in 2003.
Hydrocephalus dx in 1/2004 due to an infection and resolved as of 4/4/08. Hydrocephalus returned and shunted 7/9/09 with OSV II,revised 8/5/09. So many CT scans I should
GLOW
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  #4  
Old 11-15-2009, 11:56 AM
CathyE CathyE is offline
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Quote:
Originally Posted by DystoniaGal View Post
Lily
Havent been here in a while. You sound like you might be overdraining. I sleep on an incline to help with the overdraining. Do you have an anti-siphon?
I bet this sounds backwards to some people.
But I am guessing that Suzie sleeps on an incline for the same reason that I often have to: to drain more at night to reduce the day time over draining.

Anyone else?
Cathy
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I discovered I had Hydro at age 50 when it apparently decompensated, was shunted 8 months later. I was told I probably wouldn't be able to tolerate a shunt having had enlarged ventricles for so many years. I seem to have to alternate between the top 2 Strata settings.
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  #5  
Old 11-15-2009, 12:19 PM
Suecr Suecr is offline
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No advice, but sorry you are having problems. I know when Hayley was overdraining she felt better laying down and always wanted to "stand on her head"
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Mom to Hayley, born 2/25/04 with complex arachnoid cysts and hydrocephalus, endocrine deficiency (on GH), cardiac autonomic dysfunction and other neurological and vision issues. And mom to Bobby 7 going on 16!
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  #6  
Old 11-21-2009, 12:10 AM
Lemontree Lemontree is offline
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Question

Hi,
I've NEVER been able to sleep without a pillow. I have to prop my head up and usually use a couple of pillows. I also cann't sleep on my back.
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