Vision blackening

[jadiee-x]

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.

[LIZARD]

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.


*hug

LIZARD :(

[CathyE]

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/intracranial/hypertension/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

[1Lily]

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

[laura.xx]

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

[hope9]

I get that almost every time I stand up. I always contributed it to my low blood pressure though.

[CathyE]

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!

[Jess]

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.

[nv4phil]

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

[jadiee-x]

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

[CSFChallenged]

Jade, I usually post on the csf leakers board but have now had high pressure for some time, and stumbled across your post and thought I'd offer my help. You really do need to know if your symptoms are from high intracranial pressure or from postural hypotension(low blood pressure) as the high ICP is more serious as you know. It sounds like you may have had this off and on since you were 3?? so maybe it is related to your csf pressure if you have had hydro since then. On the other hand if you have been chronically treated with diuretics and have always been kept on the dry side because of hydro, it could also be chronic low blood pressure.

If your symptoms occur with any rapid head movement or turning of your head to the side, leaning forward or when you stand up rapidly, and is accompanied by increased pressure feeling in your head then it is more likely high CSF pressure. Gray outs are extremely common in hich ICP, and are formally called "Transient Visual Obscurations." With high CSF pressure, one can get what is called a plateau wave or slightly higher ramping up of CSF pressure which causes the visual symptoms/pressure on the back of optic nerve. It usually looks like a "gray fuzzing out" from the edges with a tunnel of vision left in the center. Sometimes you lose the central vision too, and then takes a few seconds for it to come back. It resolves more quickly than a blackout from a drop in blood pressure. Again, it is also usually accompanied by increased head pressure which dissipates just as quickly as it came on, but you still have to grab on to something to stay upright.

If it is from low blood pressure, orthostatic hypotension, then your vision usually just goes more to black, and you drop when going from lying or sitting to standing. It doesn't normally occur if you are just sitting in bed and turn your head quickly. Orthostatic hypotension is really easy to diagnose, because you just need a blood pressure lying down and standing, which can be done in the doctor's office. Your family doc would not know the difference and would probably just put it off the blood pressure. Your neurosurgeon may know, but for sure a good neuro opthalmologist should know as they are skilled in this. You don't have to show papilledema to have the symptom as 10% of pts with high pressure never show papilledema(I am one of those). Some neuros think this is controversial, but there are enough patients with proven high pressure and no papilledema to have it be published over and over again.
I have had both a drop in BP from severe dehydration, and TVO's from my high ICP (I'm currently on 2500 diamox).

So, to be safe, since you just had surgery, you should let your doc know.

Hope this helps, I know I don't know you, but I do have a medical background and wanted you to be aware that both options were equally possible and couldn't be determined without good medical follow up. I know shunts can be very tricky and whether you have a new one, revision, or completely unrelated brain surgery, I would want it to go well for you. Good Luck and take care.

CSFChallenged

[1Lily]

Hi CSFC,
Wow - thank you for educating us on this - I get them too, and will pay attention to it more now that you have posted this. I know this is no substitute for the advice of my personal ns, yada yada yada, but you have taught us all by taking the time to post this. Thank you,
Lily

[jadiee-x]

Hi CSFC thank you very much for that info, very detailed.
Ive never been able to describe the vision greying out, but blimey what you said about tunnelling, is SPOT ON. And i will certainly be using that term the next time i mention it to the NS.
I cant really turn my head fast to the side, simply because its like a huge THUD to do so, which will leave me with a headache, but i will certainly keep it in mind should i turn my head quickly not realising it, but i dont think i have experienced it in that way :)

I went to see my NS today, just got back.
My main objective there was for him to see my assumed 'stitch granuloma', as its about as big as the end of a pencil and as deep as the skull, but overnight it feels with gunk, and over the past 4/5 days when a certain area around it is ever so slightly pushed, it pushes out pus. The hole has been there for about a month now and shows no sign in stopping gunking, 2 courses of augmentin antibiotics havent helped either.
This was the first time my actual neurosurgeon has seen it, and he didnt seem impressed and immediately called my ward to see if there was a bed available to admit me for a day case to be seen by plastic surgeons and also to have another CT scan done and xray done. He seems to think they it will need cutting open and cleaning out and stitching back up again, so as soon as a bed becomes available this is the plan.

I swear i live in this place, im 18 in less than 2 months...i think its about time i was moved onto adult care.

Must add the highlight of my day, was my stern strict NS calling me 'Bunny' LOL

[DystoniaGal]

I am so glad to see that your NS is acknowldging the seriousness in this matter. Hopefully you'll get fixed up and good to go in no time.
Suzie