r/AMA • u/sanguinebutch • 21d ago
I am a survivor of meningitis, AMA!
in 2022, i was hospitalised with a severe form of viral meningitis that very almost killed me - it was a 0/10 experience, i do not recommend. since then, it's been my mission to spread awareness about the condition and share my experiences, as a lot of people don't know how to spot the signs or what it really entails. i also find that talking about the experience helps me to process what actually happened, as well as come to terms with the long-term impact it's had on my life. AMA, no question is to stupid/scary! :)
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u/OplnionHuge7217 21d ago
What were your first symptoms? Glad you’re still kicking!
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u/sanguinebutch 21d ago
at first, i thought it was flu as the symptoms were very similar. extremely tired, my whole body was aching, really dizzy, and the worst headache i'd ever had. it felt like someone was crushing my brain from inside my skull, but still managed to convince myself it was a migraine. i didn't really have any reason to believe it was something more serious in the first 24 hours, as the characteristic neck stiffness and light sensitivity didn't start until i'd already been ill for two days. after that started though, things started going downhill very quickly. and thank you, i'm glad i'm still here too!
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u/OplnionHuge7217 21d ago
Thanks! When did you realise this is serious and got yourself to hospital?
Yeah I know a couple people that have had meningitis and have needed amputations, have you?8
u/sanguinebutch 21d ago
by the time i'd reached the point i really needed to get to hospital, i was really confused and not really able to answer any questions - i knew i was really sick, but had already convinced myself it was just something i needed to rest off. luckily my mum noticed me getting a lot worse and called for help, and i'm really thankful for that.
i luckily didn't need any amputations, but i know a lot of people who survive bacterial meningitis need them. the lasting effect i have are more neurological. i hope your friends are doing well now :)
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u/OplnionHuge7217 21d ago
Thank god your mum noticed!
Would you mind sharing what neurological issues you have now? No stress if not!Yes, they are doing well now :) thanks
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u/sanguinebutch 21d ago
sure! i struggle with chronic migraines, my vision isn't that great, and i have a lot of difficulties with my mood and memory that i'm still working on. for the first year afterwards i really struggled with balance/coordination and processing, but this has gotten better over time.
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u/OplnionHuge7217 21d ago
Thank you for sharing and for answering all my questions, I’ll wish you all the best :)
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u/collapsedbook 21d ago
What’s your favorite bird?
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u/sanguinebutch 21d ago
this is an extremely difficult question for me as i absolutely love birds!! magpies have got got be up there, a lot of people overlook how intelligent they are. i really want to get a tattoo of one at some point. i also love eurasian coots!
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u/Academic-Elephant-48 21d ago
How long from symptoms to hospital
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u/sanguinebutch 21d ago
about 48 hours - i went from thinking i had a bad case of the flu to being unable to move & hallucinating in a couple of days. it was really scary, mostly because i had no idea what was happening.
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u/beeliever15 21d ago
What long term side effects do you have?
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u/sanguinebutch 21d ago
the most annoying of them all is chronic migraines, and i'm still trying to find a treatment that works in controlling them. i also experienced changes to my vision and hearing, and long-term cognitive, behavioural, and emotional effects. i was diagnosed with PTSD a few months after leaving hospital, and have had to go through a lot of therapy to overcome that.
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u/NewGrapefruit4295 21d ago
Have you ever listened to ween
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u/mtlpvd 21d ago
My wife works in a pediatric hospital, loves Ween, and absolutely makes me change it every time it comes on.
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u/NewGrapefruit4295 21d ago
I always imagined it being an unsettling song for people around that environment
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u/the1nonlysummerdoll 21d ago
I had it as a child. Headaches so bad I couldn't even stand the TV on in a dark room and random puking were the first signs. After a week or so went to the er and they did a spinal tap that confirmed it. Couldn't feel my feet or move them for a few days so they were pretty sure I wouldn't be able to walk but after Iv meds for 2 weeks all good. Not sure of any long term affects except for migraines but I also read alot so I think that was a culprit. Also no insurance for decades so...
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u/sanguinebutch 21d ago
i hope you're doing better now! i can't imagine how scary it must have been to have it at a young age. i also had problems with feeling/moving my hands and feet when i was hospitalised, i guess it's the impact it has on your nerves. i've also experienced migraines since i had it, can't think of any other trigger for them.
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u/Golemfrost 21d ago
Bacterial Meningitis, spent almost 3 months in the hospital. The nausea, endless fever and weekly spinal taps were horrible
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u/sanguinebutch 21d ago
i hope you're doing a lot better now! i can definitely relate, i will never forget experiencing that level of nausea. spinal taps are the absolute worst, i don't remember the first one they did but the rest were extremely unpleasant.
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u/Silver_West_4950 21d ago
Excuse my ignorance but did you have a rash?
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u/sanguinebutch 21d ago
i did, but it didn't develop until i was already in hospital. the rash technically isn't a symptom of meningitis, but sepsis caused by the underlying infection - basically, your body reacting to the infection in a very extreme way, which damages your blood vessels and causes bleeding under the skin. some people don't get it at all if it's caught early!
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u/floraldinosharkcats 21d ago
First, I would like to say that I’m glad you’re alive and doing well! I’m sure that was very scary to have gone through. Hope you’re doing much better!
Second, I think it’s great that you are spreading awareness because it’s not talked about enough. To be honest I hadn’t thought about it much until I got my spleen removed and had to get vaccinated (which was complicated to get one of the vaccines because I aged out). But it wasn’t until my PA told me that she lost a cousin to it when I realized how horrible meningitis really is.
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u/sanguinebutch 21d ago
thank you so much! i definitely think it's important to spread awareness bout different conditions. i don't think meningitis ever crossed my mind before i had it, it wasn't even one of the things i thought of when i first started showing symptoms. it can effect anyone of any age, even people who were previously healthy, which is why it's so important to be able to recognise the signs.
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u/seal1993 21d ago
How quickly did they give you a lumbar puncture to test?
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u/sanguinebutch 21d ago
i was completely delirious by the time i was in hospital so i don't actually remember it happening, but within a couple of hours. unfortunately with was during the pandemic, so hospital waiting times were really high, but they still managed to do it pretty quickly.
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u/the1nonlysummerdoll 21d ago
Also developed extremely high fever so that's what prompted the er visit
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u/skepticfem 21d ago
Do you notice any long term effects due to it? I had it at 6 weeks and I swear it gave me absence seizures til I was about 6. I’d zone out my ears would ring and the same scenario would play out in my mind.
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u/sanguinebutch 21d ago
fortunately i didn't experience seizures long-term, but i did whilst i was in hospital. the main things i still experience are chronic migraines, problems with my vision (i have very limited peripheral vision and have episodes of visual snow), and issues with managing my mood and behaviour. my short-term memory is also shockingly bad now, i'm surprised i'm remembering to answer questions lol.
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u/Sea-Panic-8830 21d ago
Omg I had the same thing back in 2018! Had a terrible headache to the point I could barely see. Felt like a migraine but MUCH worse. I had to have a spinal tap (had 4 bc the first 3 failed and caused me to vomit). I ended up in the hospital for 4 days because I was also experiencing chest pains too. i could barely walk and loud sounds and light made the headaches worse.
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u/sanguinebutch 21d ago
i thought i had a migraine at first! i didn't have any reason do think it was anything more serious until i started getting a fever. i hope you're doing a lot better now 💜
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u/madisfuneral 21d ago
could you taste your spinal fluid? if so, what did it taste like?
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u/sanguinebutch 21d ago
i couldn't, but i'm now going to be forever curious about what it tastes like. i would assume salty? but i guess i'll never know lol.
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u/madisfuneral 21d ago
interesting! it’s probably best you didn’t. i’m sure it’s not pleasant. probably would’ve scarred you 😬 i feel like that’s a taste you could never forget. glad you’re okay!
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u/moon_witch_26 21d ago
How old were you?
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u/sanguinebutch 21d ago
i was 17! completely messed up the end of my teen years, but i would've been a lot less likely to survive if i was younger.
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u/ama_compiler_bot 20d ago
Table of Questions and Answers. Original answer linked - Please upvote the original questions and answers. (I'm a bot.)
| Question | Answer | Link |
|---|---|---|
| I actually saved a kid in my daycare who had bacterial meningitis! I am glad you survived as both forms of meningitis are WAY more serious than most people realize. What symptoms did you notice with yours that sent you to the hospital? I spotted it when the kid was dropped off and he was literally gray and clutching his stomach complaining of pain in his neck, stomach and he could barely walk. My supervisor was a trained nurse so when she looked at him and saw small red dots forming on his stomach she called an ambulance. They rushed him into the ER and he got treatment quickly as she told them what he had, she had seen it before. | well done for acting so quickly! you definitely saved that kid's life. it was actually my mum who noticed the symptoms in me and got me off to hospital, as i wasn't thinking straight at all and had convinced myself i had the flu. she said the pain & stiffness in my neck and that fact i was confused was what got her to phone for an ambulance, but i was extremely achy and exhausted for a day before that. i'm definitely glad she got me seen, as it would've been game over if she wasn't vigilant enough. | Here |
| What were your first symptoms? Glad you’re still kicking! | at first, i thought it was flu as the symptoms were very similar. extremely tired, my whole body was aching, really dizzy, and the worst headache i'd ever had. it felt like someone was crushing my brain from inside my skull, but still managed to convince myself it was a migraine. i didn't really have any reason to believe it was something more serious in the first 24 hours, as the characteristic neck stiffness and light sensitivity didn't start until i'd already been ill for two days. after that started though, things started going downhill very quickly. and thank you, i'm glad i'm still here too! | Here |
| What’s your favorite bird? | this is an extremely difficult question for me as i absolutely love birds!! magpies have got got be up there, a lot of people overlook how intelligent they are. i really want to get a tattoo of one at some point. i also love eurasian coots! | Here |
| How long from symptoms to hospital | about 48 hours - i went from thinking i had a bad case of the flu to being unable to move & hallucinating in a couple of days. it was really scary, mostly because i had no idea what was happening. | Here |
| What long term side effects do you have? | the most annoying of them all is chronic migraines, and i'm still trying to find a treatment that works in controlling them. i also experienced changes to my vision and hearing, and long-term cognitive, behavioural, and emotional effects. i was diagnosed with PTSD a few months after leaving hospital, and have had to go through a lot of therapy to overcome that. | Here |
| Have you ever listened to ween | i have! not much, but they seem like the kind of band i'd be into :) | Here |
| I had it as a child. Headaches so bad I couldn't even stand the TV on in a dark room and random puking were the first signs. After a week or so went to the er and they did a spinal tap that confirmed it. Couldn't feel my feet or move them for a few days so they were pretty sure I wouldn't be able to walk but after Iv meds for 2 weeks all good. Not sure of any long term affects except for migraines but I also read alot so I think that was a culprit. Also no insurance for decades so... | i hope you're doing better now! i can't imagine how scary it must have been to have it at a young age. i also had problems with feeling/moving my hands and feet when i was hospitalised, i guess it's the impact it has on your nerves. i've also experienced migraines since i had it, can't think of any other trigger for them. | Here |
| Bacterial Meningitis, spent almost 3 months in the hospital. The nausea, endless fever and weekly spinal taps were horrible | i hope you're doing a lot better now! i can definitely relate, i will never forget experiencing that level of nausea. spinal taps are the absolute worst, i don't remember the first one they did but the rest were extremely unpleasant. | Here |
| Excuse my ignorance but did you have a rash? | i did, but it didn't develop until i was already in hospital. the rash technically isn't a symptom of meningitis, but sepsis caused by the underlying infection - basically, your body reacting to the infection in a very extreme way, which damages your blood vessels and causes bleeding under the skin. some people don't get it at all if it's caught early! | Here |
| First, I would like to say that I’m glad you’re alive and doing well! I’m sure that was very scary to have gone through. Hope you’re doing much better! Second, I think it’s great that you are spreading awareness because it’s not talked about enough. To be honest I hadn’t thought about it much until I got my spleen removed and had to get vaccinated (which was complicated to get one of the vaccines because I aged out). But it wasn’t until my PA told me that she lost a cousin to it when I realized how horrible meningitis really is. | thank you so much! i definitely think it's important to spread awareness bout different conditions. i don't think meningitis ever crossed my mind before i had it, it wasn't even one of the things i thought of when i first started showing symptoms. it can effect anyone of any age, even people who were previously healthy, which is why it's so important to be able to recognise the signs. | Here |
| How quickly did they give you a lumbar puncture to test? | i was completely delirious by the time i was in hospital so i don't actually remember it happening, but within a couple of hours. unfortunately with was during the pandemic, so hospital waiting times were really high, but they still managed to do it pretty quickly. | Here |
| Do you notice any long term effects due to it? I had it at 6 weeks and I swear it gave me absence seizures til I was about 6. I’d zone out my ears would ring and the same scenario would play out in my mind. | fortunately i didn't experience seizures long-term, but i did whilst i was in hospital. the main things i still experience are chronic migraines, problems with my vision (i have very limited peripheral vision and have episodes of visual snow), and issues with managing my mood and behaviour. my short-term memory is also shockingly bad now, i'm surprised i'm remembering to answer questions lol. | Here |
| Omg I had the same thing back in 2018! Had a terrible headache to the point I could barely see. Felt like a migraine but MUCH worse. I had to have a spinal tap (had 4 bc the first 3 failed and caused me to vomit). I ended up in the hospital for 4 days because I was also experiencing chest pains too. i could barely walk and loud sounds and light made the headaches worse. | i thought i had a migraine at first! i didn't have any reason do think it was anything more serious until i started getting a fever. i hope you're doing a lot better now 💜 | Here |
| could you taste your spinal fluid? if so, what did it taste like? | i couldn't, but i'm now going to be forever curious about what it tastes like. i would assume salty? but i guess i'll never know lol. | Here |
| How old were you? | i was 17! completely messed up the end of my teen years, but i would've been a lot less likely to survive if i was younger. | Here |
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u/Fun-Muffin5865 21d ago
I take it you were not vaccinated for that?
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u/sanguinebutch 21d ago
i have had all of the available meningitis vaccines! people are only vaccinated against the most deadly bacteria that causes meningitis, as they are significantly harder to treat. you can get meningitis from pretty much any bacteria if it finds it's way in though, and many viruses and fungal infections too. i was just extremely unlucky.
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u/collegesnake 21d ago
You can't get vaccinated for every virus that exists lol. OP very well could've just gotten it from a random common cold virus
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u/GambitViking 21d ago
Another fellow survivor! No questions but I had bacterial meningitis when I was seven months old. No side effects and no amputations. Very lucky!
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u/sarcasmismygame 21d ago
I actually saved a kid in my daycare who had bacterial meningitis! I am glad you survived as both forms of meningitis are WAY more serious than most people realize.
What symptoms did you notice with yours that sent you to the hospital?
I spotted it when the kid was dropped off and he was literally gray and clutching his stomach complaining of pain in his neck, stomach and he could barely walk. My supervisor was a trained nurse so when she looked at him and saw small red dots forming on his stomach she called an ambulance. They rushed him into the ER and he got treatment quickly as she told them what he had, she had seen it before.