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Old 08-15-2009, 07:33 PM
jadiee-x jadiee-x is offline
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Default Vision blackening

Hi,
I was just wondering whether anyone else suffers from their vision graying/blacking out when they stand up?
Ive suffered with it since i was in nursery, i remember the first time it happened and i told my teacher who was very concerned.

Ive noticed after each surgery i can go days without it happening, or if it does, its very mild and doesnt happen much.
But a few weeks/months later it comes back and gradually gets worse.
At the moment, its very frequent, 4 out of 5 times when i stand up, whether thats from lying or sitting down.
I used to just get this first thing in the morning when i got up quickly form lying down, now its all the time.

Its like, you stand up and after a few seconds you get a dizzy sort of feeling, and before you know it your vision is very very dark to the point of blackness, but the very center of the vision is still there just, and gradually after a few seconds the ball of vision will get a bit bigger until normal vision is back again.
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18 years old, currently treated for an arachnoid cyst and hydrocephalus with a very low pressure shunt.
15 brain surgeries since Sep 08, and 2 prior then.
Treated at Great Ormond Street Hospital.
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Old 08-15-2009, 09:10 PM
LIZARD LIZARD is offline
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Thumbs down

Hmm...never had that, but I'm wondering if it might be some type of sz or something, especially if you're really pressure-sensitive. I'd certainly mention it to the nsg ASAP.




LIZARD
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LIZ in Li'l Rhody; hydrocephalus dx'ed at 3 weeks old. No shunt surgery in 30 years! Epilepsy well-controlled and autoimmune issues being worked on. Mom to Caren, 19, successful ablation 4/18/07 for WPW; and Drewy, 16, (autism dx'ed at 2 1/2, 13 mm ACM dx'ed at 5 1/2, no surgery, doing awesome!!) Wife of 20 years to Don...and friend to Gina. RIP. 9/5/66-10/22/07

http://s.excoboard.com/Livingwithhyd..._Gina_Libonate
http://health.groups.yahoo.com/group/autism-chiari/
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  #3  
Old 08-15-2009, 10:02 PM
CathyE CathyE is offline
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This is just a wild guess, but could it be Intracranial hypertension ?

"Cerebrospinal fluid is one of three major components inside the skull; the other two are the blood supply (the arteries and veins known as the vasculature) that the brain requires to function and the brain itself."
from http://www.ihrfoundation.org/intracr...nsion/info/C16

It sounds to me like the blood supply doesn't adjust its volume fast enough when you stand.

Or anyone know if papilledema can present like that?
I hope it is not dangerous for you!
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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Old 08-15-2009, 10:26 PM
1Lily 1Lily is offline
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Hi Jade,
I get that, in fact I had it before I had the shunt put in. It is caused by your blood pressure not adjusting quickly enough to compensate for the change in position. It is what happens when you are about to faint/black out. The condition has a name, and the doctor can check it by measuring your BP as you go from lying to standing. If the change is great enough, then you have this condition. I can't for the life of me remember it's name. Anyway, I was just a few points shy of having it. I have fainted from it once or twice in my life. Check with your regular doc about it - you don't want your head hitting the ground or anything.
I hope that you are feeling well, by the way, with all that you have just been through.
(((((((((((HUGS!!)))))))))))))
Lily
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Old 08-15-2009, 11:46 PM
laura.xx laura.xx is offline
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Jade,
after reading Lily's post- it all made sense.
i was tested for it too.
go to your GP.

Hope things get figured out <3
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Laura. 20 year old music fanatic
Born 3 months premature with spinal meningitis. Dx'ed with chronic hydrocephalus due to a second occurrence of meningitis. VP shunt fitted at 3 months corrected age, revisions at 2.5years, 7 years, 17 years (x2), and 18.
Now using two Codman programmables (left & right)
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Old 08-15-2009, 11:56 PM
hope9 hope9 is offline
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I get that almost every time I stand up. I always contributed it to my low blood pressure though.
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Krissy! Hydrocephalus due to tectal glioma; diagnosed at age 6, now 19! Recently had my 5th surgery after my shunt of 11 years started over draining.. now I have a programmable! So far, so good
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  #7  
Old 08-16-2009, 10:33 AM
CathyE CathyE is offline
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Is it postural hypertension?
I too was tested for it before getting the Hydro diagnosis.
But my blood pressure went up when I stood up (I think normal?) instead of down.
I was also complaining about nearly blacking out fairly frequently - happens much less often since being shunted!
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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.

Last edited by CathyE; 08-16-2009 at 10:36 AM. Reason: postural, (not positional)
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  #8  
Old 08-16-2009, 01:51 PM
Jess Jess is offline
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Hi Jade
I hope you are feeling better. I have this problem as well. It is orthostatic hypotension. Generally, your blood pressure drops some when you go from lying to standing, hence the feeling of almost fainting. A doctor can take your blood pressure and pulse lying, sitting and standing and get an idea of how much your pulse and bp change as you change positions.
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Hydrocephalus-shunted with a CMVP shunt, one failed ETV, Chiari-decompressed, Myoclonus,SVS,high venous pressure.PTC and spontaneous CSF leak- eventually resolved. 28 yo. 34 surgeries to date.
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  #9  
Old 08-22-2009, 11:04 PM
nv4phil nv4phil is offline
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Jade

Sounds like "Papillidema" to me, from what I remember reading. Just my unprofessional opinion, though. I've never really had all that much in the way of complications with my shunt, that I can remember.

Or, if I have, then...... I've.... just not known it was the shunt.... holy crap....there could be so many things!! Anyway, this is your thread, not mine, so I won't hijack it :-)

Phil
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  #10  
Old 08-23-2009, 07:13 AM
jadiee-x jadiee-x is offline
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Hi guys thank you all for your input
I remember doctors suspecting it was orthostatic hypotension before, they took my blood pressure lying down in a bed, then standing up & there was hardly any change. So they said, perhaps its just a teenage thing, as we get many teenagers describing the same sort of thing :S
...I wasnt a teenager when i first started getting it, i was 3 years old. lol.

As with papilledema, its hard to know exactly, as the first time i had it, i must of had raised pressure for quite a while and not known it, infact my headaches subsided over the weeks heading upto the discovery.
I do get slight pain behind my eyes when like i look to the side or up or down or whatever, but of course this is not all the time, just every now and then.

Its horrible being like it, because youre just waiting for something to go wrong before anything gets spotted. Does anyone else feel like this?
xx
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18 years old, currently treated for an arachnoid cyst and hydrocephalus with a very low pressure shunt.
15 brain surgeries since Sep 08, and 2 prior then.
Treated at Great Ormond Street Hospital.
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