IamA Traumatic Brain Injury survivor AMA!

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Why would I make this up? Ridiculous

Why are you responding to the automated bot?

It's just dumb to post that about proof. Like I would make a brain injury up. It's annoying.

You saying that makes me suspicious.

Cool. Have no reason to make this up. Just wanted to share my experience.

Welcome to the Internet...

?

Post proof please. People fake AmA's all the time, we don't know if you are telling the truth or not.

Excuse me? Wouldn't fake this one bit

How would i know if you are telling the truth or not? You can't just say you are and expect people to believe it, post proof and you are welcomed to stay.

I've provided multiple test results, screenshot of my diagnosis, and a screenshot of some my insurance claims.

Now that you've had a brain injury, do you notice any significant changes in personality? I once heard that after a traumatic brain injury, sometimes you're not yourself again. Any truth to that rumor ?

Yes, this is one of the hardest things to deal with. I find myself not knowing who I am. I admit I am detached from a lot of things. I am short tempered,and sometimes impulsive.

Interesting- my husband who was in a car accident that resulted in a VERY serious head injury (metal plate in head) said that he didn't notice anything different with his personality- but his family did. I can see all of those traits in him. Unfortunately I didn't know him before the accident so I don't know.

After going through this, and reading so much, it all depends on where the trauma happened.

The traits you described are the ones that his family noticed had changed about him. A large Tahoe hit his drivers side door (he was in a little Mazda). Honestly I can't tell you which lobes received the most damage, but according to his family he was happier, easier-going, less impulsive and less pessimistic than before his accident. But then again he was still in puberty when the accident happened so who the hell knows- teen hormones do crazy things.

Just glad he is alive!

When you get angry it's especially noticeable, you find yourself almost detached looking out at yourself from somewhere inside thinking "I'm not like this". This new person I seemed to be wasn't the person I remembered being.

Yeah, I get upset at the smallest things out of nowhere, and I was never like that. When this happens it makes me get down in the dumps, and makes me detach from things.

Hey man fellow TBI survivor, hang in there it gets better!

I just turned 20 and had a TBI from freeskiing when I was 14 in a competition. I knocked a gopro mount (Industrial 3M adhesive) off my helmet and also cracked it. I landed head first into an ice stair (gotta love NJ snow the Ice Coast). Keep a check on depression and other mental health issues and maybe try speech therapy that helped me. Avoid alcohol and addictive drugs, TBI survivors have a strong addiction potential. They are also finding correlation between TBI and PTSD. Keep trying new things you never know what might click with you post-TBI that you never would have enjoyed or been good at before. Don't think your stupid. I still managed a 1960 SAT. It was a hell of a lot harder than pre-TBI but nothing is impossible. If you have any question for me feel free to shoot me a PM.

BTW if you have any brain scans, I could 3d print them for you. Check my post history I just was able to print my own brain after a recent MRI check up. At least for me there is something oddly therapeutic about being a TBI survivor and able to hold a model of my actual brain in my hand.

Would that be something you are interested in? Any questions about my injury or recover? Best of luck!

Hey, glad to see a fellow TBI survivor on here. 6 years ago you had your TBI? I bet you still go through times,and face issues from the TBI. From all the Facebook posts in the TBI groups I'm a member of, it seems like it really changes a lot for along time. Just have to learn this new way of life, and adapt.

I took Speech Therapy for a few months, and it did help a lot. Helped with my thinking, and my memory. It was frustrating at times, but it was worth it.

Since July 2014, I haven't had a drop of alcohol, I really don't have a a desire to drink it again. I have read that TBI patients are prone to addictions. I actually have a disk of my brain scans from August, I'll send you a message.

This may sound weird as hell, but after I got out of the hospital, I asked everyone if they took pictures of me while I was there. I wanted to just see what I looked like, and I guess account for those weeks that I missed in my life. I was actually bummed out no one took any pictures.

Yup still have some issues sleeping it takes forever to heal but don't get down by slow progress, the brain is way more placid (changeable) than we ever imagined! Glad to hear speech therapy was good for you as well. Mine was prefrontal cortex, the area where time is calculated. I do have trouble keeping track of time to this day. Did you ever feel physically exhausted after speech therapy? When I did it I remember leaving feeling like I ran a marathon.

Yeah if you want to send the files over I'll do my best to ship you a 3d print of your brain!

To make it easier for everyone that was giving me rides to my therapies. I would have Speech at 8 AM, OT at 9, PT at 10. M-W-F.

I was absolutely exhausted once it was 11 AM and time to go home.

Btw have you watched The Crash Reel? And this new BBC show "Me and my new Brain"? For some reason when I watch things dealing with TBI's, and watching other people's experiences, it helps me a lot. I feel a sense of relief while I watch.

http://thecrashreel.com/store/?index.php https://www.youtube.com/watch?v=oavmmXLFa0k

The crash reel hits home with me because I got my TBI in a similar fashion just on skis not a snowboard. Brings tears to my eyes when I watch its so sad. I'll look into the BBC show, check out r/neuroscience to!

It's helped me get through some rough times late at night when I can't sleep I'll watch it.

Hi - glad to hear that you made it through!

I have just started work as a doctor. I did a Neurosurgery rotation at Medical School and I found it really heartbreaking and scary.

Obviously I only really saw patients acutely when they were in ITU, the first step in a long recovery process. How long were you in ITU for? What is your first memory since the incident? How do you feel now?

Do you feel like anything has changed since the incident?

Sorry, so many questions!

I was in the ICU for two and a half weeks. Came close to having to have a craniectomy done because the pressure inside my head was building up, thankfully I lucked out and the swelling went down. I had several different brain bleeds, and my electrolytes plummeted, almost put me into heart/kidney failure.

I really have no recollection of the whole hospital stay. When I was discharged, in late July, I still was out of it. I started to slowly come out of this foggy feeling like towards the beginning of September 2014.

Now I have good days & bad days, my neuro doctor's tell me it's miracle with all my injuries, that I am progressing very well,and it's just going to take time. The time issue affects me, because I was so used to just doing things, and going places, etc. Now, I just really don't have the energy, or the patience to be around people. It's hard adjusting to not being able to drive, loss of self independence. I am still at risk for seizures so it's not a safe decision for me to drive.

Sounds a lot like me and I haven't had a brain injury I'm just bi polar. Well I guess I was born with a brain injury of sorts but you know what I mean. Just interesting to me the similarities. The low energy/ fatigue, good days and bad days, irritability, trouble being around people, loss of sense of self/ depersonalization. I've experienced all that. Hope your recovery continues going well man. Good luck.

Thank you for the kind words! I am on a a mood stabilizer, anti-depressant for my mental health.

Hey good job man no shame in that. I put off meds and dealt with being depressed and anxious my whole life until i started self medicating and ended up getting addicted to opiates. But when I got clean and entered treatment I finally got the meds and therapy I've always needed and my life is finally back on track. I think mentally ill people need to support each other as best we can because you don't really understand how it is unless you've dealt with it. Even therapists with 10 years of school don't understand sometimes because they haven't been there. Hope things continue to go well dude. To a speedy recovery! One love.

I'm not going to lie.I'n my early twenties I was a partier. I did coke, X, pop xanax, vicodin. All to keep with the "Lifestyle" going out all the time, buying bottles, getting girls etc. It all came to the end when the cops raided my house, and searched but found nothing(Thankfully I was paranoid and got rid of everything) that was a wake up call to everything about life. I changed my ways completely. Since I never was charged with anyone, I have never had a record. So I decided to join a nursing program. Started in 2012, was supposed to end Jul 2014. Dude to my brain injury that wasnt possible, I fought with them to let me back in and take the courses I had left. They said I couldn't do it, and I wasnt ready, but let me tell you, I'm very stubborn, so I laughed and said "Ok I'll show you" . Wouldn't you know it, 4 months after my severe TBI, I started back(Mind you I was still out it, but I did my best and sat up front, blocked people out) my grades for the next 4 months till I graduate were the best they've ever been in my college career. Showed me that if I take it serious, and focus, I can do anything. Not going to let this define me.

I probably should have waited till around now to restart back, but I was stubborn,and i worked too hard to just give it uo. It's a big accomplishment for me

What opiates did you get hooked on? Strength/how many times a day? what made you get clean?

What all was on your mind that night, just before the shit hit you?

I have no memories of when anything happened. I've been told that after the accident, somehow I was walking around like nothing happened.

That's got to be terrifying, wandering around like that. So dangerous and scary to know you could be up and about with such damage done to your body. Glad you're making progress, though!

Thank you! I am proud of the progress I have made, and count my blessings daily.

What was the drunk driver charged with?

I honestly don't try to dig too deep about what's going on with the drunk driver. It gets me emotional, and I just block it out.

Is this something that you will eventually want to try dealing with? If now just isn't the right time (being focused on recovery) then that's understandable. I worry when someone sais they are blocking something out though, because it almost always seems to make it worse when those emotions find their way to the surface (as emotions tend to).

I see a psychologist, and a psychiatrist. Doing everything I can to get over this. I don't think I'll ever be over it completely.

Try to maintain the hope that you can find peace with everything. I know there's a limit to the brains abilities, but I also know it's constantly surprising science, how much can actually be recovered. I'll be rooting for you yeah? Try to do an update post in the future. Or hell, pm me with an update in a few months if you could.

Thanks for the messages, and for the kind words! Means a lot!

The Brain is very interesting, and there is so much to learn about it. I will be in touch!

How do you feel now in comparison to how you felt after the injury?

Grateful and thankful to be alive, but I now feel like everyday is a hurdle. I have to stop thinking about who/what I was before all of this, and focus on what/who I am now. Luckily I am able to speak, walk fine. I look like nothing happened to me, which is crazy. I have completed 11 months of PT,OT, and 5 months of speech therapy. All of my therapies helped me so much.

What is the most crippling thing about it? How crippled would you say you feel?

There are a few things. Loss of self independence. Not being cleared to drive/work, losing myself, adjusting to things.

Hello I received my second MTBI about 12 months ago and have had vertigo ever since. Usually just when I get out of bed or tilt my head at a specific angle. Is this something you have had to deal with? If so any tips to help?

Do you snowboard,ski, or anything like that? Two Tbi's? Although they do say once you've had your first one, it's easier to have a second, third.

I did have very bad vertigo symptoms for like two months after I was discharged. I was prescribed Antivert, and that helped a lot

No, my first MTBI was when I was 10, l was trying to stand on the front bars of my friends go kart while he was driving it while my best friend stood on the back. My jeans got cuaght in a wheel and I fell off, slamming the back of my head on the road. I don't remember the whole day so I only know what I was told. I instantly started throwing up, and had about a 5 minute memory cycle until the following day when I "woke up/regained my memory" I spent the next two days in the hospital because of the pressured in my skull, but after a couple of weeks I felt better. My second was about a year ago. My childhood best friend who ironically had been on the back of the earlier mentioned go kart passed away. I started drinking a lot and unfortunately on one of my benders I got into a fight with my roommate and slammed the back of my head on the tile floor. Once again I was unconscious, and had a lack of memory. After waking up my also drunk roommate just threw me in my bed thinking I was ok and not realizing I had a major concussion and let me go to sleep. Luckily I woke up the next day, I honestly could have died. Got diagnosed with another MTBI and had a small hematoma under my skull. I had terrible vertigo and balance issues but was released after three days with a script for antivert. It just made me sleepy and didn't help, I was extremely irritable for the next month and had trouble focusing the vertigo and dizzyness got better to the point were I could walk but was still there. I was diagnosed with post concussion syndrome and had to go to a specialist. Now 12 months later I feel ok and only get vertigo when I stand up abruptly or tilt my head way back. I was never really athletic so it doesn't hamper me much it just sucks. My doctor says that it will hopefully go away but at this point it could also be permanent. I have to be extremely careful that I don't get another head injury in the future.

Wow, I'm glad you're okay. Please be careful! It's so nerve racking thinking about how close we've came to really bad endings.

3 months after I was discharged, I was walking down my stairs, trying to push myself to my limits, walking like I was before my TBI, and my socks slipped on the wood floor, and I went tumbling down them, hit my head in almost the same damn sport where my TBI happened.

I luckily somehow caught myself before my head snapped back, and accelerated towards the wall. I was dazed after it, slurred speech, disorientated. I was still conscious, luckily my girlfriend was home and immediately took me to the ER.

I will post the Dr. notes for this, and the CT scan notes, and the charges the 8 hours in the ER cost me. Just so I can prove I'm not making this up.

You don't have to share any evidence I trust you. Be very careful and keep steady my friend. We must be careful and protect our noggins!

Yes, we do have to protect our noggin! Only get one of them!!!!

And I forgot to mention something about the Antivert. It did help my vertigo/motion sickness problems tremendously, but the side effects were terrible. I had urinary problems, thought I had a UTI, having to piss every 2 minutes, with barely any volume. It was horrible. Took me awhile to figure out what was causing the urinary issues. I was so uncomfortable, hard to sit still, and hard to sleep due to having to get up after 2-3 minutes.

Such a tiny little pill affected me so much, it's crazy!

What was your initial GCS?

No idea. I am posting more of my results, and stuff. I have no recollection other than what I have been told, and what my test results say.

Hey there, 28 year old that suffered a traumatic subarachnoid hemorrhage here. I saw a question posed already about whether there's paranoia about whether people are nice to you as a result of the injury so I guess I second that query as well (it's actually how I met my first post-injury girlfriend.)

A weird post-injury thing I've had is a kind of survivors guilt. Even though I was the only one injured in my incident, I've read survival rate of SAH is roughly 50%, with only 10% having outcomes where they return to a normal life...it feels weird being part of that 10%.

So I guess my two questions in this rambling reply are: what are your prospects as far as life and career at this stage in your recovery? Do you deal with similar anxieties or are you able to accept what happened a little more?

Thanks for sharing your experience.

Hi there!

I try to maintain the best attitude I can, always remind myself that things could be worse. Anytime I get a negative thought in my mind, I just tell myself that, and I put on some music.

I do worry about the future. I worked so damn hard and finished Nursing school, but I have all these problems now,and it's just like if I am unable to ever work as a nurse, I feel like I wasted my time and effort.

That's kinda weird...I'm actually on my way to nursing school...I've worked as an ER Tech for 4+ years since the injury. With the benefits of the OT and PT, are you starting to regain a "normal" life? I assume now you function okay with daily activities and whatnot, but have you started working at all again since?

Yeah, I feel like it's becoming more and more normal as time goes by. My doctor's won't clear me to work, or drive. At risk for seizures, and I guess some other things.

I wish I could drive, and work, I beg my doctor's at each appointment to just clear me, but they won't.

Do you still take prescriptions to prevent seizures? I was given keppra for two weeks as a precaution, but haven't taken anything since and (knock on wood) have never had a seizure. Have they talked about a timetable to go back to work or drive? I know my downtime started to drive me nuts with cabin fever

Yeah, I'm on Keppra and Lamictal. I don't like the Keppra due to some side effects.

My neurologist & neurosurgeon want me to see a epileptologist, but around my area, there are none that my insurance covers.

I have a eeg next month, and hopefully the results will be positive, and I can get cleared.

Please provide some proof to the mods, even privately. This can be a very interesting AMA, but no one here knows you and they want some assurance that you indeed suffered a TBI.

Why would you make it up? Stupid internet points. Some people value these points way too much that they are willing to deceive hundreds with misinformation.

I'm a neuroscientist and I have colleagues that focus on TBI research that would be delighted to read what you have to say.

http://hotelcaliforniabos.imgur.com/all/

Here are some tests from the first few days I was in the hospital.

Where exactly was the lesion/injury, and what do you feel like that has affected in your life?

My temporal lobes were really damaged, some damage to my front lobes. I had a closed skull fracture also.

Do you have any visual side effects? If so, what treatment have you received?

For like 6 months after, I was experience diplopia(double vision), and I still am dealing with photophobia. I have eye exams every 3 months or so. All I have had to do so far is get glasses, but there is still a possibility for eye surgery, which I would like to avoid.

Hey, I appreciate all the questions! I wasn't expecting people to really ask, it means a lot! Here is just a snapshot of my insurance claims for only 7 days of my hospital stay. I can provide all the claim screenshots, there are a ton of them. Hope this can show that I am not making this up. I will answer everyone's questions now. I dozed off for a few. http://imgur.com/8SIzk1o

Have any of your senses changed? For example, do you enjoy anything you didn't before or vice versa?

My olfactory bulb was affected, I've lost a few of my senses. I really don't smell things anymore. Taste has gone down, things taste bland now. My eyesight is slowly getting better with lots of eye exercises. I have lost feeling in my fingertips. Sometimes I hear things, like for example if you think the tv is on in the background, I will hear things like that for no reason.

I hear what sounds like TV on in another room when nothing is on a lot. Did the doctors give you any info on this particular issue?

Glad you're recovering so well!

Thank you! I'll have to go through my notebook, and see what I wrote down about this. Whenever I have a doctor appointment, I make a habit of writing down what they tell me so I can learn more about it when I get home, and so I can remember it.

Congrats on beating death my friend. Strange question that runs through my mind. Are you ever paranoid now that people are being nice to you because...um...you are now "special" without even knowing it?

Thank you!

Actually, that hasn't gone through my mind. If anything, I am paranoid that people will think I am lazy because on the outside I look fine, but inside I still am recovering.

Can you tell a list of everything you've been through since the accident until now? Like surgeries, rehabs, things like that.

I haven't needed any surgeries. The doctors thought for awhile that I would have had a few in the beginning though.

I've gone through CT HEAD PLAIN,CT CERVICAL PLAIN,CT Chest with Contrast,CT ABDOMEN PELVIS W/CONTRAST, Chest Portable, Lots of Blood Draws, A lot of EEG's.

Months and months of PT/OT/ Speech Therapy

Eye tests.

I smashed my car into a tree a few months ago and suffered a severe axonal TBI. Thanks to doctors, seatbelts, and luck I'm basically fine but one thing I have lost is all sense of smell. I ask docs about it and they just say 'who knows'. Maybe itll be back next week maybe never. Any experience with this?

Glad you are okay!!

From what I'm going through, it's hard to really tell if you will get your senses back. The nerves have to regenerate, and that takes time. So it really is a coin toss.

How traumatic is hitting the back of your head so hard that you almost black out and can't pick your head up off pillow for almost 2 weeks? A couple years ago I fell snowboarding as I went thru a patch if pure ice. I ended up rolling back wards and all of my 25-30mph of momentum was stopped by the back of my head. I don't really feel that different but maybe I am.?

You should have went to the hospital, slow bleeding in the brain could have developed. Very lucky it didn't!

Congrats on being a total badass.

Other than the awesome appreciate for life you have now, did anything else good come from all this? Like, do you now have some sort of extremely minor super power that you didn't have before, or does music sound 8% louder?

Thanks! I am busting my ass to get to where I want to be, I just have to be patient. Patience has always been one of my downfalls, but I am getting better at it.

I think my injuries have made me somewhat smarter actually. I know that I have to focus, and put time towards things if I want to succeed at them now.

Thanks for the compliments. I appreciate them!

Several good things have came from this injury. I'll list them below.

1. Learned to Appreciate life. Even the times where I'm not doing anything. Never take anything for granted.

2. This has brought me closer to my family, and has shown me my true friends. From all the visits, them giving me rides to my therapies/appointments, helping me stay positive.

3. I was able to get out of a shitty relationship. This was a wake up call. Showed me that everyday is a gift, and life is too short to not be happy.

4. It's made me stronger mentally. Now I have a lot more confidence in myself. If I can get through this, I can get through anything.

Hey OP, I'm glad you made this AMA. Don't pay attention to people saying words like "retarded" or asking for proof. This is not the sort of thing someone would fake for an AMA.

If anyone wants his proof, all I can say is that I have never been able to find a support group...I know one other person who has one and we don't really talk anymore...but nearly everything that the OP is saying hits home hard with me.

You'll be ok, OP. It takes time. We're the same age. On Christmas eve it will be four years since my accident. It was also due to a car accident like your own. I also have issues with smell and taste. Texture has become an issue with food as you mentioned as well. I have a serious mood disorder now and have am not interested in much. I don't have dreams anymore either. Every few months I'll have two or three nights in a row of dreams, but they're always retched nightmares. I have a hard time coordinating my left and right side of my body as well. The list goes on, but I'll save it.

I'm not writing in with my own issues for fun, I'm just trying prove a point that OP is not bullshitting. It is clear due to the way he is writing.

Thank you for the support, and for understanding. With brain injuries, you really don't know what it's like until you have one. Never really know how much everything will be impacted due to a brain injury.

You're exactly right, there isn't much support out there for Brain Injuries. If it wasn't for Facebook, and all the pages for Traumatic Brain Injuries, I wouldn't have anyone really to talk to about this.

It's a struggle dealing with everything, it's even harder because it truly is a Invisible Disability. I am hard on myself because of this, I don't want to look like a lazy ass, but somedays it takes all my effort to even do basic things. It is hard to think about how everything changed in the matter of seconds, that's a lot to face when you come out of the fog.

I wouldn't wish this on my own worst enemy.

Don't most people who receive closed fracture TBI's survive? Isn't it the open/penetrating TBI's that kill?

Honestly I'm not sure. I know that every TBI is different. With my brain bleeds, and the other trauma, it was a lot to get through my doctors said.

Could you give a rundown of a normal day in your life post-accident? I'm glad you made it out and are doing well now, I hope the drunk driver gets a justified punishment.

Thank you!

From 09/2014 till around last month, I had my pt/ot three days a week. The other days I would go to yoga classes just so I could keep my mind active, and my body active.

My doctors/therapists wanted me to take a month off, and still do yoga at least 3-4 days a week. Honestly, my therapies were getting boring to me. I'm only 27, and the other people in therapies were in their 60s/70s, and I just didn't feel like I fit in sometimes.

Are you able to do everything normal in a day on your own, or are basic necessities difficult? I don't think about problems of making breakfast, getting showered, dressed, and all daily routines being a struggle. Do you do them on your own without problems, or do you need assistance?

For the first month I was home, the normal daily activities were hard, but I did them. I am incredibly stubborn, so even if I was having a hard time, I wouldn't let anyone know.

Now I can do everything by myself decently, besides shaving my face. I go to the barber once, some time twice a week for a touch up/line up. I struggle with keeping it all lined up, and even.

I find it hard to get motivated, and when that happens, I just feel beat. I know it doesn't help one bit that I barely sleep much. Ever since my TBI, my sleep has been horrendous. No natural medication works, and I've tried 3 sleeping prescriptions, none work at all.

Thanks for doing this.

My question is do you suffer from short term memory loss? And if so, do you suffer from short term memory loss?

Yeah I am still having problems with my short term memory. My long term memory is great though. I've just learned different ways to remember things, making sure I make reminders in my phone.

It's very frustrating having the short term memory issues.

Do you experience chronic headaches?

Yes, triggered by too much light, and noise.