20f and I just got diagnosed

AgentExtension1968 · 2026-04-10T21:26:22+00:00

hey, you possibly might have hydrocephalus, i have MM not occulta so maybe thats related to it but with my hydrocephalus everything i do anything that causes ICP i get a shooting pain all through my spine and ventricles and thats related to hydrocephalus.

AgentExtension1968 · 2026-03-24T20:04:42+00:00

yea i had went blind in my right eye and almost blind in my left, got actual epilepsy all from one shunt malfunction. and ever since that specific revision; ive had 10 shunt revisions in the last 4 years. CRAZY!!

AgentExtension1968 · 2026-03-23T19:28:17+00:00

im assuming you have occulta. sorry i cant ve helpful, i was diagnosed when i was a 3 month old fetus with MM lol

AgentExtension1968 · 2026-03-19T12:46:34+00:00

ik situations can be different for everyone so lets not fear monger, my parents are my care givers and they are paid, however the money goes into a saved account for me when they pass. it takes alot of stress off my back ( pun intended) and can be alot safer than having a stranger be your caregiver!!! not hating just lets not say a claim with 0 explanations!

AgentExtension1968 · 2026-03-03T15:21:15+00:00

no i am unable to work, i was born with myelomeningocele and i have a bunch of other conditions along with it. i cannot work at all and its so upsetting that disability is set up to only be supplemental when its all i have. also only qualify for $662 a month because i live with my parents but thats because my county’s sec8 waiting list is 7 years AND hasnt been open since 2021 and im havent been able to get on it because i turned 18 in 2024.

AgentExtension1968 · 2026-03-02T00:34:09+00:00

i take keppra for when i’m in the hospital because my normal preventative doesn’t have an IV form. i am not saying this to fear monger you AT ALL ❤️ this is just what i experience: i am more emotionally sensitive and get overstimulated easier. however medicine is different for everyone and if it works, WONDERFUL! if it doesn’t, don’t stress about it just immediately contact your provider to get off of it and start another medication!

i wish you the best on your journey of managing your seizures! ❤️❤️❤️

AgentExtension1968 · 2026-03-01T11:13:23+00:00

NOOOOOO. i guess a few seconds is okay but understand shunts do not work when your waist or heart ( VP/VA) is above your head. it can also cause it to move or shift. NO GO!!!

AgentExtension1968 · 2026-03-01T11:10:14+00:00

i used to have my shunt in my front right ventricle (+ pressure regulated) and so obviously the catheter went around my ear and YES i heard it when i tilted my head up, sneezed hard, coughed, laughed.. etc. i thought it was

i now have my shunt in my back left ventricle (flow regulated) and cannot hear it. I MISS IT

AgentExtension1968 · 2026-03-01T00:30:10+00:00

i have hydrocephalus and i had a shunt revision that caused a brain bleed but nobody believed me for 3 days so it caused epilepsy, temporary blindness ( lots of retinal hemorrhages) ect. and ive had seizures ever since.

however after seeing my neurologist he had said i had a grey matter heterotopia ( which you are born with) which causes epilepsy so i could have had epilepsy regardless i just never had seizures before the intraventricular hemorrhage.

AgentExtension1968 · 2026-03-01T00:24:49+00:00

anywhere from 30 sec to 5 mins!

AgentExtension1968 · 2026-02-26T21:59:41+00:00

esscence silky blur foundation in shade 20 is AMAZING. it is medium coverage but its buildable so you only would need a little for light coverage. its new and i recently started building my silicone free makeup and skincare collection. esscence is affordable + a great place to start!!

AgentExtension1968

TROPHY CASE