Ruptured brain aneurysm/hemorrhagic stroke survivor

Lithe

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On Thursday, I posted in this thread "Queen of Snapchat" Katie May dies from stroke the above comment.

Today is my 4 year "annieversary" (in the aneurysm survivor community, we call aneurysms "annie") where I am celebrating having survived the rupture, stroke, and emergency brain surgery. Over the past few days, there have been a lot of health related threads about illnesses suddenly appearing, affecting young lives, so I wanted to start this thread to answer any questions/concerns y'all might have.

Please keep it serious, because this is really not a game and if I can offer some information or insight that might help save a life, or give some comfort for someone who has known/loved someone who had a stroke or neurological illness, I feel compelled to do so. If anything gets out of line, I will have the mods delete this thread, but I really would like to open a discussion about it, so let's keep it 100.

If y'all have any questions regarding the rupture/surgery recovery/or life since having had the stroke (it was hemorrhagic, meaning caused by a bleed, not ischemic where blood supply is cut off by obstruction), I would be happy to answer them. Commentary, too. Discussion is good and I like the idea of raising awareness, being real about these unseen injuries, because they are devastating, even when the person "seems normal." Trust me, they aren't.

So, any questions? Thoughts? Concerns? Bring 'em in here!
 

FSP

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One of those can happen to you at any time for any reason things.

That's life unfortunately. Only defense is to think happy thoughts

Pretty sure I caught PTSD from that testicular torsion thing

Can't even imagine something like that happening to my BRAIN.

fukk BREHS
 

Lithe

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One of those can happen to you at any time for any reason things.

That's life unfortunately. Only defense is to think happy thoughts

Definitely. My life literally changed overnight and I didn't even know what an aneurysm was until I woke up in an ICU and someone gave me my phone. I overheard the nurse talking about Bret Michaels, saw her write the word "subarachnoid hemorrhage" on the white board, and I started searching Google for anything to explain to me what happened. I'm not sad about it, I'm a warrior, I'm a survivor and I'm doing pretty well considering what "should have" been. I know what a gift life is, so everyday is a good day for me.
 

FSP

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Definitely. My life literally changed overnight and I didn't even know what an aneurysm was until I woke up in an ICU and someone gave me my phone. I overheard the nurse talking about Bret Michaels, saw her write the word "subarachnoid hemorrhage" on the white board, and I started searching Google for anything to explain to me what happened. I'm not sad about it, I'm a warrior, I'm a survivor and I'm doing pretty well considering what "should have" been. I know what a gift life is, so everyday is a good day for me.
Bro you have my utmost respect for that attitude:salute:

I went through testicular torsion and a kidney stone in the same year. 22. No warning. Just sudden pain and confusion both times. This shyt is real.
 

Lithe

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Bro you have my utmost respect for that attitude:salute:

I went through testicular torsion and a kidney stone in the same year. 22. No warning. Just sudden pain and confusion both times. This shyt is real.

Thank you very much. I'm positive, and that's what got me through, even though it was an absolute living hell in the beginning. The first year afterwards, I thought I would never genuinely smile again. I don't even know if I have the words (still, 4 years later) to explain how miserable and defeated I felt. Then one day, I got back into writing and just being raw about everything, I realized that I could use this as an opportunity to be better, do greater, try harder. The way my rupture happened and all of the alignment was the absolute best case worst case scenario.

I'm a woman, so I have no idea what that must have been like, but I really have a scrunched up face right now just trying to imagine the torture. I have two brothers and some of the things they've said about taking hits during sports, I'm sure it's an inexplicable pain unless you experience it. It's really shocking to have something so serious happen to you without warning! Glad you're okay now though!!
 

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Pretty sure I caught PTSD from that testicular torsion thing

Can't even imagine something like that happening to my BRAIN.

fukk BREHS

:russ: it's not funny at all, but this just made me laugh! Yes, I was diagnosed with PTSD and severe health anxiety afterwards, for which I saw a therapist (and still do see him sometimes) for over a year to work on coping techniques. I don't remember the pain, because I was kept in a medically induced coma most of the time (Propofol controlled sedation, and they could turn it on and off) but the only reason I have these "memories" is because of how detailed my family was in keeping my journal, and how open they and my friends were with answering my non stop questions of "what happened to me?!" I have a very strong need to know, and not even my "brain exploding" could stop that. The pain I do remember was the incision, the electric like shocks shooting through my scalp as the nerves tried to heal, and severe, severe migraines. Oh my God, sometimes I literally wondered why I didn't just die.
 

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Wow. Good thing you're still with us. That sounds like quite the ordeal.

Thank you, glad to be here. Yes, it's been such a challenge. So destructive yet so fortifying at the same time. I was a very strong writer before my stroke, and I am so thankful that I had a right sided stroke, as the language center is usually in the left hemisphere for most people. I did not lose my ability to write, talk, or speak. I did have some trouble understanding what was spoken to me though, even though I speak English, it sounded like a foreign language. That, and delayed processing, so I'd automatically say "huh" or "what" after someone said/asked me something, even though I heard them. It took my brain a while to really comprehend I guess. That was very annoying! Because I "look normal," people thought I was joking or trying to be funny when I say I forgot something or didn't understand. No, I'm not joking. It's just frustrating to try and explain when I'm having a "bad brain day" that my cognitive deficits will be more apparent, and the fatigue is out of this world. Yeah I'm 28, I should be full of energy and able to just get up and go, but I need a lot of rest and recovery time.

I remember taking a shower for the first time in 9 days (with help and supervision from my mother because I was still a fall risk) and I took a 4 hour nap afterwards. The fatigue and exhaustion is so real. But I have told people that the brain is the computer of the body. It holds all the files and makes things happen. If something is corrupted in the system, it will show up somehow and that function will not work correctly. That's as simple as I can make it. Doesn't matter how normal that person seems, I guarantee that there is a deficit somewhere and it will show itself.
 

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Thank you, glad to be here. Yes, it's been such a challenge. So destructive yet so fortifying at the same time. I was a very strong writer before my stroke, and I am so thankful that I had a right sided stroke, as the language center is usually in the left hemisphere for most people. I did not lose my ability to write, talk, or speak. I did have some trouble understanding what was spoken to me though, even though I speak English, it sounded like a foreign language. That, and delayed processing, so I'd automatically say "huh" or "what" after someone said/asked me something, even though I heard them. It took my brain a while to really comprehend I guess. That was very annoying! Because I "look normal," people thought I was joking or trying to be funny when I say I forgot something or didn't understand. No, I'm not joking. It's just frustrating to try and explain when I'm having a "bad brain day" that my cognitive deficits will be more apparent, and the fatigue is out of this world. Yeah I'm 28, I should be full of energy and able to just get up and go, but I need a lot of rest and recovery time.

I remember taking a shower for the first time in 9 days (with help and supervision from my mother because I was still a fall risk) and I took a 4 hour nap afterwards. The fatigue and exhaustion is so real. But I have told people that the brain is the computer of the body. It holds all the files and makes things happen. If something is corrupted in the system, it will show up somehow and that function will not work correctly. That's as simple as I can make it. Doesn't matter how normal that person seems, I guarantee that there is a deficit somewhere and it will show itself.

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I am Groot...
 

Lithe

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Did you feel any symptoms b4 hand? This is one of those things that terrify me.
Yes! I just didn't know what it was. Here's a timeline.

02/01/12: Around 7 AM, I had a "weird migraine" wake me up out of my sleep. I had just been in attendance at one of my good friends' father's funerals the day before, and I thought maybe it was stress related from that, but this headache was different than anything I had ever felt. It was in the crown of my head and it had an electric sensation. I can say it felt like a lightning strike (not that I know what that feels like, just the sensation was different) because it was so sudden and odd. I've never had a headache wake me from my sleep before. I got up, told my mom (I was still living in my family's home at the time) that I had a "weird migraine," and was going to take some Tylenol and go back to sleep. I had to work at 9, so just took 2 extra strength tylenol (good thing I chose that type of pain reliever and not an NSAID) and laid down until I got up to go to work.

02/01/12-02/04/12: This same headache from the 1st waxed and waned in intensity throughout the days. I didn't go to the doctor because I had been having headaches for years before this, I genuinely had no idea that it was the beginning of an aneurysm rupture, as this was when it began to leak. I remember that Wednesday night (02/01) I told my friends "stop making me laugh, it makes my head hurt so bad" but I still didn't think much of it.

02/04/12: I took some ibuprofen, drank a caramel macchiato and was at work from 9-5. In the past, an NSAID (Motrin, Aleve)) and caffeine have helped take the headache away. I even said "hope this takes away this wicked headache," not knowing there was a danger lurking in my brain. I remember telling a co worker "I just feel out of it, like I'm not really here or something." That evening, I went home, took a bath, drank 1/2 a beer, took Advil cold and sinus (NSAID and psuedoephedrine), and was in my bed texting friends making plans for the Superbowl (Sunday 02/05) when I got upset about something, stood up, and passed straight out. I remember falling, and my mother heard this loud crash. She ran into my room and told me that she saw me all contorted with my left side twisted up, I was seizing and gasping for air. She flipped me onto my stomach in case I started vomiting, and ran to get my father. He was in the garage working on his car.

I don't know when I came to (how long I was passed out beforehand) but I remember being pissed at the medics telling them "this is so rude, you just came in here and woke me up. I was sleeping." They told me "No, you passed out. What happened? How are you feeling? What do you remember?" For some reason, I remember this part of the night, but nothing after the exit to the hopsital when I was in the ground ambulance. Maybe it's a neuroprotective thing that I don't have a memory in the ER or anything else for 9 days. I told them "I have had a headache, I drank half of a beer (it was still sitting on the floor where I put the bottle down) and took a bath trying to relax, but my head still hurts" then I just started vomiting so much. I was burning up, and very embarrassed. I'm actually a very private person, so I kept apologizing to the 3 medics and my parents in the room. I kept saying "I'm so sorry, I don't know what's wrong, but my head hurts really bad. I just want to go back to sleep. Y'all can leave, and I'll just go to sleep. I'm so sorry." My father is the one who told me "You need to put on some warm clothes and go to the hospital, there is something wrong with you." I said "No, I just want to sleep." He is the one (thank God, and may he rest in peace) that made me throw on a sweat suit and some shoes to go to the hospital. I still thought I just had a weird headache until I stood up to go to my closet. I couldn't walk! I lost all control of the left side of my body, and I had to hold myself up against the wall to walk to to the closet. It was 15 steps away from the bed where I had been sitting, telling my story. I was internally panicking but I told myself "don't freak out, that won't help. Something is wrong. If you just get dressed, you can go find out." I somehow got to the bathroom right down the hall, got myself dressed, and a female medic had the gurney in the hallway ready for me to get on. I told her "I can walk, I'm okay" but she made me lie down. Thankfully she did, because I was really out of it.

I remember them driving to the hospital, the exit taken to get to the hospital, and hearing "that's her mom behind us." And absolutely nothing after that, nothing at all. But I was still conscious. I'm the one who gave the triage nurse and doctor my story, I walked to the bathroom with the help of my mom and sister (my sister was working in the ER that night) to get the urine sample. But I don't remember any of this at all.

Come to find out at a followup with my neurosurgeon, that headache I experienced on 02/01/12 is a "sentinel headache" which is a warning headache. It's because the aneurysm was leaking blood, but not fully ruptured. It's often described as a thunderclap headache, which fits in my experience. It's a very weird type of headache.
 
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Lithe

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Waking up high as a kite until you go home :blessed:

Sort of, yeah, but it's not like it's joyful when you can look at yourself in the mirror and see a half shaved head and 33 staples in your scalp. But yes, I had a PICC line drip of Dilaudid, and that stuff is... Intense. I had never been high before (never smoked, never took any pills or anything) so that was my first time being high. It was kind of funny because they give you the dosage based on your weight, but I'm pretty petite and it's going directly into my system, so I would be talking to my brother and just fall asleep in the middle of a sentence. We laughed about it later, but my mom got pissed and told them to stop giving me the drip because it was too strong. Had to switch to Norco (hydrocodone/acetaminophen) after that. We argued about that because I told her that it's not her body, not her pain and she doesn't know. But at the same time, it was hard for them to give me my neuropsychological tests and neuro checks when I'm not really coherent so I get it, but still... That pain is so unbelievable, you need something to keep you going. Not only did I have the head pain, but my whole body hurt, my throat hurt because of the tubes I had down it when I was still on the ventilator, I was in mental and emotional shock, and I was exhausted beyond words. Just let that Dilaudid drip and I'd be out.
 

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I am Groot...

Thank you!!

As a hypochondriac I'm bout this close to getting off the internet forever.
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Do what you gotta do, I'm just being real about my experience and trying to bring awareness. I understand that though, you couldn't tell me I wasn't going to die for a good 18 months after I came home. I was convinced that anything would kill me suddenly. It's terrifying!
 
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