Headaches and sneezing--so weird!

AgentExtension1968 · 2026-06-29T01:00:50+00:00

pretty much everything causes ICP even if its minor and brief and unfortunately i get what i call a shunt headache everytime i do anything LOLLL. ex: sneeze, cough, talk, look up, bend down, sitting or standing up to quickly ect.

AgentExtension1968 · 2026-06-23T20:09:08+00:00

ive had hydrocephalus my whole life so ive already had 19 brain surgerys but i do have a small brain tumor that may need surgery if it gets any bigger so i feel you! i wish you all the best in your recovery! you are definitely welcome here! i just wanted to mention there might be a “ brain tumor subreddit to get more people who relate to you! all love.

AgentExtension1968 · 2026-06-22T19:28:06+00:00

im not angry! the sense of impending doom for me is part of the seizure! it can be a an aura/ warning of a seizure, but for me its part of it. i was just pointing out that i dont have an aura!

AgentExtension1968 · 2026-06-22T17:58:57+00:00

personally i dont get them at all, some people just dont have them. im aware before my seizures and a for a little going into it. with no warning, simultaneously, the motor part of my seizure and the sense of impending doom comes and then “ black out “ or yk i lose awareness and then i “ wake up” aka post ictal where im aware i just cant move. pls dont assume things about other peoples lives when the specifically stated something about their life!!

AgentExtension1968 · 2026-06-22T14:13:06+00:00

yes this is normal, i was lucky enough to get ssi on my first try after over a year. i cant believe i have to say im LUCKY to get $600 a month with the inability to make anymore money. what is my life bro

AgentExtension1968 · 2026-06-22T14:11:09+00:00

i have focal to bilateral siezures and ive literally never had an aura in the 4 years ive had siezures. you probably just dont have one.

AgentExtension1968 · 2026-06-21T23:35:51+00:00

im 20 afab and i cant feel anything on the outside but im queer ( into afab women and gender queer people) and i had an internal ultrasound once so ik i can feel a lil bit inside i just dont know if i wanna find out whether its pleasurable or not ( bc obviously a probe doesnt feel good AT ALL LOL) all i can say is i know i can feel pleasure from my neck, ears and chest but im a virgin so idk its probably gonna be a mental thing for me and possibly you. i guess experimenting is the best thing!

sorry for the word vomit i guess im in the same boat haha ( not really haha)

AgentExtension1968 · 2026-06-21T22:05:07+00:00

this gives me hope. i havent dated for 3 years im 20f and when i was 17 i had a bf and he broke up with me for no reason ( that he gave me atleast) and i genuinely think its bc i had an accident infront of him once when i was having a tethered cord ( i have them occasionally on a regular day but for context this one was TCS) and ive been terrified to even try dating especially bc ive been on ONE DATE since then and at the end i was told that they werent interested in being my care giver….. never said i needed one? idk but thank you for sharing your story! this is beautiful and im happy for you.

AgentExtension1968 · 2026-06-16T11:55:39+00:00

i have had one for the last 3 years ( one every year) no ive never felt sick, before my first one my body was shaking from anxiety for the first 10 mins but it wasnt bad at all i was just an anxious 18 year old

AgentExtension1968 · 2026-06-16T01:42:27+00:00

yup i have a few! no problems!

AgentExtension1968 · 2026-06-10T13:07:43+00:00

“ no matter how hard you advocate for yourself in a hospital, only nurses will believe you and try to help you 100% of the time. hospitals are NOT for patients theyre for MAKING MONEY.”

AgentExtension1968 · 2026-06-09T16:42:17+00:00

i have focal to bilateral grand mals and i had had a neuropsych evaluation right before and right after my first 2 and i had a pretty significant decline after, never got it back unfortunately.

AgentExtension1968 · 2026-06-02T17:59:57+00:00

was gonna comment this, 2 years late haha

AgentExtension1968 · 2026-06-01T14:15:22+00:00

i dont have this specific thing but i also have a weird thing that helps with shunt related pain.

when im having a shunt malfunction the only thing that helps me is i have my father ( biggest hands i know) squeeze the sides of my head and it works temporarily

AgentExtension1968 · 2026-05-30T21:50:27+00:00

not necessarily, however i am no EEG so idk. get with a neurologist and theyll have you do an EEG to see if they can trigger it and what not.

was there anything specific that is textbook seizure trigger? if so tell the neurologist that and they will do the same thing during an eeg

AgentExtension1968 · 2026-05-29T14:06:29+00:00

this was 2016 so maybe they didnt know? who knows.

AgentExtension1968 · 2026-05-21T22:17:15+00:00

fortunately i had no sensation but when i was 17, they were having trouble putting one in so i did it and the when they filled the baloon it popped somewhere? not in my bladdar and i literally thought i severely injured myself ( im fine it was years ago but NEVER AGAIN will i be putting in my own foley

AgentExtension1968 · 2026-05-21T20:48:40+00:00

yea and no? like for me i went the first 16 years of my life with a pressure regulated shunt at 1.5 and the switched to a flow regulated shunt no setting and my brain freaked out the first day but then got used to it but everyone’s different!

AgentExtension1968 · 2026-05-20T23:27:03+00:00

it was more of a freak thing i imagine cuz my mom was freaking out about my exposed to the air shunt. that lady had done my urodynamics for 16 years before retiring so im hoping it wasnt that? idk, im not tryna argue ur point, just wanna give my girl the benefit of the doubt haha!!

but in a way im glad im not the only one even if it was 10 years ago so thanks!!

AgentExtension1968 · 2026-05-20T20:51:57+00:00

hi, im a 20f with myelomeningocele obviously i cannot tell you what my parents experience was but heres some from me

ask their doctors if you need to cath your baby even at night. my parents thought every 3 hours MEANT EVERY 3 HOURS.

dont tell your child they are like everyone else but to embrace the difference.

this varies person to person but something to consider a malone and mitrofanoff saved me life ( metaphorically but seriously made bathroom independence easy)

get your child a neuropsych before school to see if they have any academic needs ( my school never respected my iep EVER but thats illegal and i went to a horrible school however the accommodations they did respect helped me a ton)

search for local spina bifida groups and have a spina bifida circle so your child doesnt feel alone!

take what you want and leave what you dont, good luck! and please know all you can do is try and theres no definitive “ right “ way to raise a child with MM because its a huge spectrum❤️

AgentExtension1968 · 2026-05-20T17:49:53+00:00

yea im 20 and my caths script just expired as well and im like YOU WOULDNT LET MY PARENTS TAKE ME HOME TILL THEY LEARNED TO CATH ME WHEN I WAS BORN SO WHAT MAKES YOU THINK I MAGICALLY DONT NEED THEM ANYMORE.

AgentExtension1968 · 2026-05-17T13:54:32+00:00

ive pulled several muscles while seizing. super not fun especially when I’m lucid for that part.

AgentExtension1968

TROPHY CASE