A few days ago someone pointed me to a post on Reddit where a person claimed to have Post Concussive Syndrome. It was suggested I message them, as I have been recovering for over a year. After reading the post, a few red flags went up. Immediately, I asked my friend, "why would someone lie about that? I've been going through this for a year and its been absolute hell!? I cant believe someone would make up a lie about something so terrible.

Okay, so I am using a throwaway account but here is my story. In October 2013, I got a slight bump on the head. Honestly it hurt but it was nothing too serious. As the night progressed, the pain got worse. By the next day, I was literally sobbing in pain. Fast forward a few ER visits later and countless hours getting CT' scans, poked with needles etc etc and I was diagnosed with Post Concussive Syndrome. My caregiver was told that within 7-10 days i would be okay. Boy were The Dr's at NorthWestern Memorial wrong. Its been a year and I am in horrific pain.

Background: I graduated with a Bachelors in English 2009 and taught for a few years. My life was pretty great and now its drastically different. I've gone from near perfect dictation to struggling to pronounce some words. My memory is almost non-existent. There are tons of other aspects but feel free to ask me anything.

Proof: http://imgur.com/zkD6F3m http://imgur.com/PSX5tnO http://imgur.com/aUjx5Jj here is my published article http://the-toast.net/tag/lana-epps/ My Blog: http://sweetlittlesomethingsnet.wordpress.com/

I'll try to answer as many questions as I can. Keep in mind, my memory is not the best. Also, my grammar and spelling has suffered as well. Hopefully I don't make too many mistakes.

EDIT1: many have messaged me and some have asked what lead to this. For me it's a combination of factors:I'd had several previous head injuries, I took melatonin the night before the head injury (first time) and I was sleep deprived. Prior to my recent injury I was in the process of opening a web store. I hardly slept and was extremely fatigued. Just a few weeks after my store I hit my head. Of course it's speculation but doctors figured these factors leading up, increased my chances and lead to PCS

EDIT2: good morning, I'm back to answer more questions. And thanks so much for the awesome supporting private messages

Comments: 602 • Responses: 76  • Date: 

53campbell179 karma

May I ask how you bumped your head? 2 years ago my teenage son fell back wards and hit his head on an asphalt parking lot. While we went through the difficult post concussive recovery he pretty much healed up. I say pretty much as I think he was forever changed in certain aspects of his life. His long term memory seems to be impaired and his ability to critically think his way though stressful situations took a hit...no pun intended. I am sorry for your situation and I'm thankful my son is at least functioning. Concussions are nasty things. I hope you recover soon.

BrainInjuredGirl171 karma

When you're 5 ft nothing, never wrap a blanket around you while walking up a flight of stairs. Sorry to hear about your son. He definitely has age on his side.

salt-lick6 karma

Because I can't afford much heating I'm constantly wrapped in a blanket. I'm also short. Now I shall fear for my life every time I go up the stairs!

BrainInjuredGirl5 karma

I also have difficulty regulating body temperature now. Either I'm literally trembling from being cold or soaked in sweat.

dorkish30 karma

I actually had a scarily similar situation. At 11 I fell off a golf cart and landed on the street, knocked out for two minutes and ended up having an acute subdural hematoma. I lost almost complete memory of the year before and after that accident (looking back now) and has some fairly marked personality changes. I've got a bit of trouble with long term memories and I developed a stutter but otherwise am alright (at least now, I'm only 21. Long term effects look scary...). Your son definitely has age on his side, but do watch him closely

Grock235 karma

I just got into a car accident last month (drunk lady hit me) I hit my head on the window and now I stutter or can't start sentences.

BrainInjuredGirl8 karma

Go to the doctor please. I also stutter now and word search

Patrol_Border18 karma

My (then)19yr old brother did almost the exact same thing (balcony to concrete) about 3years ago and seems to be experiencing similar impairments with the exception being his short term memory. He's horrible under pressure or stress (he was recently rear ended in a car and had serious difficulties giving his details to the police - but thankfully it was a low-speed crash and the car took the only damage) and had to drop out of college because he found studying and learning new things far more difficult than before (he's still working on it and intends to return one day). That said, one of the things that has really helped him has been physical activity (primary lifting) and is currently working as a personal training - he thinks it has something to do with the repetitive activities, counting and exposing himself to new people forcing himself to make new connections.

BrainInjuredGirl10 karma

I was told by my Neuro to be active and I am to a certain degree. My issue is being so sound and light sensitive so going to a gym is out.mi like walking but never remember to look before crossing the street. bike at home a bit on a stationary though. Happy to hear your brother is getting better

pawpeople81 karma

I feel for you - I am in the same situation. Got a mild bump on the head hitting a tree snowboarding (wearing a helmet) and thought nothing of it for a few days even as the headaches got worse. Over 9 months later I am still recovering; I have good days and bad days but the cognitive fatigue and the headaches still prevent me from doing a whole lot.

It's interesting that we are the same age and gender and both have a history of multiple concussions.

I am wondering if you have tried the things I have tried that have helped - making sure not to push through symptoms, going off all the meds they gave me that were supposed to help but really just seemed to interfere with my brain's ability to heal, etc. But most of all, have you heard of something called LENS therapy? I discovered it from a blog post and found there is a place in my area that does it. Basically they fire an electrical signal into your brain to reset your brain waves, kind of like a defibrillator for your brain as I understand it. It has been shown to help with TBI recovery. I have found that it has helped massively with the concussion symptoms - I started almost 3 months ago and at that point had made almost no progress whatsoever in my recovery due to many setbacks. Ever since I started I've finally been making headway. I go once a week. My insurance covers it.

Is there anything you've found that helps for you? Really interested to hear your take on it as I have never met anyone in person who's gone through this. Best of luck to you, my brain injury sister.

BrainInjuredGirl14 karma

Sorry for your injury. Blogging has helped me interact with other that have had injuries as we'll it helps to feel you aren't alone, especially drying this.nit becomes isolating.

BrainInjuredGirl14 karma

I've never heard of it. Seriously need to write a lot of this down. I know it's always trial and error though. It's great something is working for you. And yes, fatigue is apparently one of the last symptoms to go

BrainInjuredGirl2 karma

My sister friend told me about this actually. She is a PT. No. my Neuro has never suggested it. Fatigue and headache are a long the worse. I slept 12 hrs straight about a week ago.

BrainInjuredGirl2 karma

Sorry about your injury. I definitely don't blow it off. If I'm tired, I nap. I avoid going out at certain times etc because I know it makes my headaches worse. I'm looking forward to good days. Hopefully any day now.

plosone65 karma

Its been a year and I am in horrific pain

Like does it pain all day? How do you cope? I have severe migraine headaches and sometimes I stay awake the whole night sobbing. How do you deal with it? Sorry to hear about your condition. Get well soon.

BrainInjuredGirl71 karma

Yes, it's all day. I'm sorry to hear about your migraines. Try ice packs, it's the only thing that offers me a little relief.

SteelRanger69 karma

This sounds ridiculous but try some pot (if you're in a state where medicinal or recreational is legal), it has many pain relief properties that will most likely help you. I used to get some gnarly headaches after my concussion (from bmx biking) but pot genuinely helps. Sometimes I forget I was in pain in the first place

BrainInjuredGirl68 karma

Are you serious? I'm never smoked but I wonder if this will help. Also I have asthma, will it be affected?

KittyCommand0R5 karma

[deleted]

BrainInjuredGirl3 karma

Sorry about your injury. I eat a lot of ginger due to nausea. It seems to help a bit

the_hurtiest_panda5 karma

Can you give an update as to whether you try this?

BrainInjuredGirl4 karma

Try?

memorythief3 karma

Look into how CBDs can help you http://www.projectcbd.org/

BrainInjuredGirl5 karma

You have an awesome username

I_Am_A_Pumpkin0 karma

I've had pretty bad asthma since I was a kid, and I smoke fairly regularly. if you keep an inhaler with you then you should be fine :3

BrainInjuredGirl1 karma

Thanks!

mycreativename48 karma

You should ask your neurologist about botox injections. I get them for my post-concussion syndrome headaches and they have helped. I also take zonisamide as a daily preventative

BrainInjuredGirl9 karma

I have an appointment this month and now tons of treatments to ask about. Thank you and I smile knowing you're feeling better

ChipTheGuy5 karma

I too had post concussion syndrome, I got multiple concussions playing rugby in the past few years but I still have minor signs of PCS. I use to be able to read a question on a test and just continue on with my work but now I find myself rereading the same question multiple times.

BrainInjuredGirl5 karma

So sorry. Has the fatigue and headaches gotten better? That's what I'm trying to accept, "years later having minor signs"

seabreeze15159 karma

Ugh. Me too. Do people actually believe you ? People tell me it's "all in my head" (lol I guess literally it is) and that I should just "try harder and get over it". Sometimes it sucks having an invisible disability.

My instructor at school thought he knew better, wouldn't give me my disability accommodations (partly to get back at his colleague, my disability helper) I then failed the course, lost my student loans, got them back a year later after filing a human rights complaint, forcing me in to the work force and into the catch 22 of making too much to qualify for loans but not enough to pay for school. Now I have 2 years of a degree I can't use, can't continue and a mountain of debt. Yay.

BrainInjuredGirl35 karma

No, so many don't. Hence the naysayer on here. People google and think they have the answered. I cry to my Neuro because I dint understand it and the everyday pain takes a toll. In unviable disabilities are the worse. People assume you're okay when you're literally confused and broken. Feel better

Tobiatrist2 karma

After my TBI, the people around me would google it and read horror stories, and then assume whatever about me. Nobody could ask ME anything. It kinda sucks having an injury they can't see... some friends even got upset when I would wrap a white cloth around my head...

BrainInjuredGirl6 karma

I'm sorry and yes invisible conditions are hard because people can't physically see what you're going through. No one understands unless they've experienced it. It's difficult and isolating

showmm44 karma

You mention your caregiver - is that someone who already had that role, or who got that role after you injured yourself?

BrainInjuredGirl55 karma

No, they got the role post concussion.

dreddit_reddit11 karma

Is your caregiver a profesional like a hired nurse / assistant or is it maybe family or a friend? I am not sure if i understand correctly that you actually need assistance to, for example, live on your own. If this is too detailed / personal then nevermind :)
Thanks for doing the AMA.

BrainInjuredGirl16 karma

Thank you. It's an awesome loved one. Things that occur: I get random spasms now, forget I can be burned (currently have a burn from a week ago where I leaned too close to a stainless steel burn did not feel my arm against it and have a burn), just walk in the street without checking-so now I can't go out alone, become overwhelmed making decisions so need a little help. I'm impulsive, have a hard time focusing etc

Dr_Martin_V_Nostrand41 karma

Aside from the effects the pain and discomfort has had on you, has your personality changed at all from the head injury?

BrainInjuredGirl85 karma

I've been told it has. For example on my mothers birthday, we ordered some vegetable dish and it was derived to home. My mom, sister and cousin were there. My cousin picked over the vegetables and I told her she should eat them. She responded, "I do eat vegetables" I then said, "it doesn't look Ike it!" My caregiver apologized to my cousin for my response. Later that day, i was told, "you never would have said that before" apparently I no longer have a filter

FatPaco55 karma

My brother has a traumatic brain injury.... And he too has no filter. Can be awkward and/or really mean sometimes but has no clue because he also doesn't have a great sense of social awareness anymore. People tend to not realize how sensitive the brain can be and how big of an impact even small injuries can have on a life.

Best of luck in your continued recovery

BrainInjuredGirl74 karma

Thank you so much. This has been hard and it bothers me when people think it's some ploy. In the beginning everyone is understanding and helpful, as time passes loved ones lose patience and become distant. Please be understanding with your brother. No one understands unless they've been in the situation or have a loved one experiencing it. It's definitely a big deal. Thanks for your comment. Hope your brother is getting better

chilibreez48 karma

THIS. I was a police officer, I was in a full sprint when I fell and hit my head on the asphalt. I've since lost my job (I don't blame them really, I couldn't do my job anymore) but the work comp company has followed me, many of my ex coworkers thought I was lying, (you know, because I was seen walking around and smiling. horrible shit like that) and I can really tell that even my family is losing patience. It's awful. My wife is a very motivated woman who lives a fast-paced life. At first it was working out; she was as patient as you could expect. I had some emotional ups and downs that I had to learn to control, I had and still have issues with memory and confusion, and my speech was fairly poor at the first. I still think quite a bit slower than I used to and it is very frustrating for her. I'm not the person she married; it's always in the back of my mind that I just don't know if she's going to hang in there. I wouldn't blame her; she didn't ask for this and it's hard. It just sucks.

BrainInjuredGirl21 karma

Thank you and I'm so sorry this happened to you. It's a difficult adjustment. Life before and after seems like two different peopke

jxj2427 karma

That is a hallmark of TBI, even "mild" TBI (MTBI).

Higher cognitive ability, called executive function, is affected due to impaired communications between different sections of the cerebral cortex. Reduction in impulse control is common, as well as memory, planning and concentration.

TBI is hard to diagnose effectively, as it doesn't leave easily detected marks on the brain. So a lot of people go on with their lives, unaware that they've got a condition that can grow worse and worse.

One approach now being recommended after someone experiences the sort of incident that is associated with TBU is to take 24-48 hours of "cognitive rest". This means no activity. No moving around. No reading. No TV. Perhaps music, depending on its content.

This should be followed by reduced physical activity for 7-14 days, because during this period the brain is at increased risk for worse damage following the initial injury.

kwlin12 karma

Cognitive rest is so important and unfortunately many people with TBIs blow it off because they don't want to take time out of their lives to take care of their mental health. After my TBI my doctor recommended 2 weeks of cognitive rest and I really believe that my concussion would have healed much more slowly without it. It was hard to put everything on hold for 2 weeks and for some people that might not be possible, but even a few days is so valuable.

wannaholler6 karma

If only my doctors had told me this! My recovery might have been much better. My mild/complexTBI happened six years ago, though, so I'm not sure they realized then how important cognitive rest is. But, then, not sure how much I could have rested given the intense physical rehab needed. Prob should have been in a rehab facility.

BrainInjuredGirl3 karma

Hope you're much better now

McLeod301311 karma

My husband had a brain injury in high school and he is more mean and non filtered. It bothers him though because he cant always understand. I get told I don't make sense a lot but its not me lol.

BrainInjuredGirl12 karma

I understand how your husband feels. Sometimes it's hard to grasp one has said anything wrong. You really don't try to be offensive. Your mind just does not think that way

UnKamenRider11 karma

Huh... I thought my aspergers just turned me into a filterless person that speaks before fully thinking it through. I've struggled post-concussion for years after a car accident that left me home bound for a year in high school. Lots of times I've complained to doctors about impulse control. I usually get, "Well, you have frontal lobe damage, so..."

BrainInjuredGirl14 karma

Your comment is bittersweet. The fact that one suffers for years yet people still think it's made up. Hope you're doing much better

DrJosiah33 karma

I would suggest you seek different opinions in your medical treatment. You obviously have damaged something and it's not getting better, potentially getting worse, if not probably getting worse. Have you sough other opinions or neuro specialists?

I truly can't imagine such significant damage to any area of the brain that wasn't visible through a variety of imaging and tests.

You're reported symptoms also clearly indicate which area(s) of the brain are damaged. Additionally, the worsening of a speech impairment due to an external brain injury just screams red flags all over. From a slow bleed to any number of contusion/growing pressure related issues.

A year is a very long time for recovery, the fact you've gotten worse is indicative of an on going problem. Not an isolated problem that is past and you are recovering from. Point in case, you are getting worse, not recovering.

Get to some quality docs and get whatever it is fixed. Obviously it's not getting better on it's own and simply coping out to a "syndrome" title is not the answer.

How about a change in language that promotes active seeking of quality care?

You have an undiagnosed brain injury that is getting progressively worse. Not "post concussion syndrome".

BrainInjuredGirl28 karma

I wouldn't say it's gotten worse. My Neuro says it's a combination of hits. I've had several concussion. And this seems to be the final topping. Everything is trial and error with this. I've said to my Neurologist several times that I feel like a mice going through trials. How come they can't find a medication that works, when will I get better! It's frustrating to say the least

DrJosiah32 karma

Like I suggested, seek out more then 1 or 2 opinions. Doctors, even the best, are just humans doing a job. You can show the same scan to 5 different guys and maybe none of them catch the problem. Or 3 our of 5. Not to mention science of the brain is very, very young.

A second or third set of eyes on a problem almost always opens doors.

It should not be trial and error. You are a human. Not a lab rat. Find the problem first, locate it, identify it, then identify possible treatments. Since you haven't identified the problem, you're still on step one.

BrainInjuredGirl18 karma

The problem is I'm on state insurance. I'd just moved back to the U.S so it's frustrating waiting for referrals etc. thanks so much Dr

jxj244 karma

Some studies have looked at the use of SSRIs (antidepressants) following TBI. While mostly used for the post-concussive disorder depression, there are some indications that there are other benefits.

There's just too much we still do not know about how the injured brain recovers, either at the cellular or network levels.

BrainInjuredGirl6 karma

Thanks. Many are quick to dismiss if a person is still recovering a year later. Head injuries are nothing to play with and because the brain is so complex, there is a lot unknown. That's what's frustrating

pawpeople2 karma

I was prescribed a couple different tricyclic antidepressants myself to help with PCS. They helped a lot with sleep (insomnia was a big issue for me, especially since I had to be completely sedentary for months), and I was told that they can help with headaches as well. I didn't notice any difference in the headaches really, and I had to go off of them due to side effects, but I am prone to bad reactions to medications in general. I hope they can help others more than they did me.

BrainInjuredGirl2 karma

Amitripline helps me sleep

rhythmkiller10 karma

I've received a strong kick to the head 7 years ago which gave me my 3rd concussion. I still have daily migraines, as well as other daily symptoms (nausea, dizziness).

I've seen 5 neurologists who specialize in the treatment of concussions, as well as 2 other neuros. I've had every test under the sun (MRIs, CAT scans, EEGs, x-rays, neruo-psychological testing...). Hemorrhaging is something that can be present, in my case it was, but it's usually found rather quickly. Basically what I'm saying is that if it's possible to have been diagnosed with something else, I would have been.

The thing about concussions is that they play dirty. Some people are better after a week, some people are like me and don't know when. Some medication works for a couple people, some only help one. It's a frustrating experience of trial and error.

PCS is very broad and doesn't just mean you have a migraine and feel dizzy. It's definition changes depending who you ask and on what day.

I've gotten used to people offering treatment advice, but that is something incredibly frustrating. I appreciate people who want to help but it's something that feels almost insulting when it's someone who isn't a neruo or has suffered a TBI. We dedicate so much of our time just trying to get any amount of relief.

I know you were just trying to help, but arm chair diagnosis generally aren't appreciated.

BrainInjuredGirl5 karma

Wish you were better and it's true. What works for one will have no effect on another. The brain is tricky. I laugh when asked what's my level of pain on a scald of 1-10. I asked my Neuro if he had another scale. Pain is subjective. I've had headaches, I've had migraines, those feel nothing like what I experience from waking to sleeping. How I wish it were as simple as a headache

downtherabbittrail31 karma

Is your caregiver a family member or someone outside your family? What is it like to have to depend on a caregiver for some of your needs? I am a caregiver and I want to make sure that I am as compassionate and unobtrusive as possible to those individuals that I work with.
Peace to you and thank you for posting to this forum.

BrainInjuredGirl31 karma

Bit a family member, a friend that happens to be a nurse. It's difficult. Going from really independent yo having someone remind me to eat and stand there while I go to the bathroom. My advice is try to be patient even when you're tired and have a outlet. My caregiver, it takes a toll. Over time, it's hard for them to remain so patient

itoddicus28 karma

Did you have an "Oh, fuck, I am not OK" moment? I did after my head injury.

BrainInjuredGirl39 karma

Yes, my moment was the morning. I couldn't reach my shoes and I collapsed on the bed sobbing-over shoes. Tears were pouring down. I couldn't grasp why but I knew done thing was wrong

Cannedbeans48 karma

I hit the steering wheel in car accident in 2007. As soon as I realized what had happened, I remember hearing a sound, like someone plucked a cello string really hard...WONNGGG. The back of my head got really hot, and then spread down my back. I went to the hospital and had every scan under the sun, and all was negative. Now I have migraines no medicine will touch, and a very, very short memory. Sometimes I say the same thing over and over again, like asking the kids to brush their teeth, maybe 5 times, and not recall. Thank goodness they take it in stride. There is definitely something wrong with me, and most people don't believe me, so I don't mention it anymore. I know how you feel. :(

BrainInjuredGirl8 karma

So sorry! Try ice packs they offer a bit of relief. Medication does nothing for me as well. I weaned myself off the last one. Seems dilly to keep taking pill after pill with the same results

rinnie111 karma

Doctor here. What medications, and other treatments, do you receive currently? What treatments have you had in the past that failed to help?

Have you had an exercise-test for concussive symptoms? I see that you've had CT scans. Have you had an MRI of the head and/or neck?

I did a rotation with a renowned concussion specialist in med school. PM me if you'd like his information. Best wishes for your recovery :)

BrainInjuredGirl7 karma

Hi thanks for responding. I've taken several but the most recent was neurotin and Amitripline. Not sure if I spelled that right. I'm not sure how to PM but please message me. Any information helps

7komodo10 karma

Hi there. Has your personality changed at all in the way that you experience emotions or the way you are able to control them?

the-name11 karma

I second this question. I'm 3 years out from a decent concussion and still have emotional swings I can't control. Had to give up on Agents of SHIELD this season: couldn't avoid bawling at post-TBI Fitz.

BrainInjuredGirl17 karma

Yes, I cry-a lot. Can't explain why but I do. Also I become or rated for reasons unknown. Feel better and you can email me. It helps being in contact with others that understand. Most don't get it

elseedubya8 karma

[deleted]

BrainInjuredGirl4 karma

I applied for it, pretty sure it'll be dismissed. They kept saying I just needed glasses. I told the Dr when my headaches are bad, my vision is blurry. She just said, "okay, well let you know in six weeks"

thesaxophoneofterror8 karma

My 16 year old brother is here with me, and he's had post concussion syndrome for about 13 months. He says he feels the pain of everyone in this thread and that there's all these subtle mental symptoms you can't understand unless you've been through it. He wants to know how far you are in your recovery in terms of being able to do things-he can't do anything. How do you cope with the unholy boredom? There's a lot of variance in how people deal with the symptoms. Some people put it away, ignore it, and others (like him) are completely incapacitated. What do you do during the day, and what is the advice of your doctors at this point?

BrainInjuredGirl2 karma

Sending hugs to your brother. Please relay this to him. I'm almost 13 months in. I take naps, use ice packs a lot. I write and limit internet/tv time. I've attached my blog link, please read it to him. I felt so alone before blogging. And then others began responding of the same, it was bitter comfort in knowing I was not alone. Please be patient with him. It's hard being like this and you can't always describe how much it's affected you because it's difficult. You also adjust to some symptoms and forget others don't experience them.

Snowmakesmehappy7 karma

Occupational Therapist here. I work at a rehab hospital that specializes in treating people with post concussive syndrome. Can I ask what kind of treatment you have received other than medications? We focus on a total rehab approach with a team of therapists; OT, PT, speech, and psych; to help treat symptoms. Although obviously every person's recovery is different, there are a number of treatments that seem to help the most amount of people: 1. seeing a PT that knows manual treatment, specifically cranial-sacral massage. This helps with the headaches. Vestibular therapy helps with the dizziness. 2. Speech therapy will help with the cognitive aspects and can help provide techniques to help with the concussive 'fog' and memory difficulties. 3. Psychology. I can't stress enough how important it is to find a proper psychologist that is familiar with head injuries. 80% of our patients who have long term symptoms have some kind of depression or anxiety as well. If this isn't treated, it will prevent you from being able to move past the symptoms. 4. Neural optometrist or an OT that focuses in vision therapy. A lot of times some prism lenses can rid the majority of symptoms.

I would love to help, if you have any questions feel free to PM me.

BrainInjuredGirl2 karma

I do have severe anxiety now and lots of death thoughts. I responded a few times about the delay in Speech a Therapy. Please Pm thanks

alpharatsnest6 karma

This happened a few years ago to one of my cousins. It's been really hard on her and confusing for everyone because the doctors weren't sure what exactly was wrong/why it was taking so long for her to recover, etc. I think now enough time has passed that she has started to feel like she will never make a full recovery. She is a lot better now, but definitely not the same person she used to be. I really feel for you and thank you for trying to educate and answer questions.

My question would be, how can I support my family member who has a similar story, without being condescending or pitying? What things did your friends/family do to help you feel better?

Best of luck to you.

BrainInjuredGirl13 karma

Sorry about your cousin. I know exactly how she feels. I refer to myself pre concussion as she. Be patient and if she does not remember something, don't force it. My brother will keep pushing to jog my memory and it makes me feel worse

PerhapsLater_6 karma

What do the doctors say now? Will you be completely healed? I'm sorry to hear about you having to suffer pain everyday. I pray that you recover soon!

Also, if you don't mind, how bad was your memory during the first few months after the bump?

BrainInjuredGirl5 karma

My Neuro keep saying it can be years but does not give a definite response. Everyone brains is different and the many hits have done a bit of damage. Thanks for your kind words

Verias836 karma

I've had a few serious concussions, and what I've walked away with is a real lack of a short term memory and I have a lot of long term memory that's pretty much gone. When you say that your memory is almost non-existent is it mostly short, long, or a combination of the two?

BrainInjuredGirl12 karma

Combination from forgetting small tasks-burning food, forgetting where I placed something constantly to long term effects. My childhood us fragments. An uncle died a few weeks ago, I sobbed as I looked at his photo because there was nothing there. I mean nothing, no recognition no memories. My mom said I was very close to him as a child. He's dead and I don't remember him

wherethefisWallace5 karma

I work in brain injury rehabilitation so it's always interesting to hear your side of it, thanks for doing this AMA.

What sort of things do you to help with memory, speech and stuff? Do you receive any therapy to help improve your symptoms or are you just getting help as you need it?

BrainInjuredGirl5 karma

Hi thanks for asking. I go to a Neuro regularly. And was referred to Speech Therapy. I've yet to attend. When I struggle to pronounce a word, I avoid it. Or my career will practice it with me. It's difficult and I get embarrassed

kwlin5 karma

Hi there. Sorry to hear about your situation; I had a similar experience (I had a pretty bad concussion about 4 years ago and still have some pretty significant memory issues and side effects). I wouldn't wish it on anyone. My question is how do you deal with your memory issues? It's affected me on an emotional level (I feel guilty when I can't remember things that I know I should remember) and I'm wondering if you have similar feelings and how you deal with them. Thanks!

BrainInjuredGirl8 karma

Me too! The guilt ears you up. Had an uncle die and I cried because I can't remember him. I blog now. It's like a permanent record. Some post I keep private but they are still ther. Writing helps

kwlin5 karma

I definitely get that, the guilt is just so awful. I used to write a lot but I should really try to write more often, there are just so many things I don't want to forget. Thanks for your reply!

BrainInjuredGirl3 karma

You're welcome. Writing has helped me in so many ways. Hope it works for you too

ProfObladee4 karma

[deleted]

BrainInjuredGirl3 karma

No, I didn't read yours and I'm so sorry you're going through this.

homopopsicle4 karma

Do you see a speech-language pathologist to help with your speech? Do you feel like its beneficial? Thoughts on how the SLP could improve his/her clinical practices to make you more comfortable?

BrainInjuredGirl5 karma

I was referred for Speevh a Therapy. But she refuses to see me until I receive a cognitive test from NeuroPsych. And so far haven't found one that accepts my insurance

eriberrie4 karma

I got a concussion about a week ago. It was really bad for the first few days but seems to be getting better now. Is there anything they said they could have done to prevent post-concussive syndrome, or anything you wish you did differently, like rest more early on? Or can it not be prevented? (I know you're not a doctor, but you probably have pretty good knowledge of it)

BrainInjuredGirl2 karma

Oh no! Did you go to the hospital? I guess I wish I went to the dr immediately. I didn't and it got worse. I fund rest early on though. Months in bed, mostly dark room, no TV, no PC etc

ladyfoghladha4 karma

This may sound unrelated but I'd like to suggest that you look into the field of Vision Therapy. We've been making some remarkable strides in treating patients with TBIs and PCS. This is a good place to start. I wish you the absolute best of luck with your recovery and I admire your spirit!

BrainInjuredGirl3 karma

Thank you, I'll be sure to mention it to my Neuro on the 17th

BrainInjuredGirl2 karma

Thanks!

Roundedlevel13 karma

Have you tried cannabis oil as a medicine?

BrainInjuredGirl4 karma

I just ordered hemp oil. Is that the same?

bowlofwhiterice3 karma

How many concussions have you had total? Because for what sounds like a light hit there must have been some pretty bad previous trauma. I've been recovering from a concussion too for about 2 and 1/2 months now. Luckily my symptoms don't include headaches but mainly memory loss and trouble concentrating. Have you tried vestibular therapy or massages? My doctors recommended those to me and I think they have helped tremendously. Good luck getting better!

BrainInjuredGirl3 karma

And it's my third-I believe

BrainInjuredGirl3 karma

Sorry about your concussion. I just began getting massages about a month ago. They help a little

Neamow2 karma

I've gone from near perfect dictation to struggling to pronounce some words. My memory is almost non-existent.

Can you expand on this? Losing your memories (because of an accident or through diseases like Alzheimer's) always seemed to me the cruelest thing someone can go through. How much have you forgotten? Do you know your family, friends, etc...?

BrainInjuredGirl3 karma

I remember my immediate family but details, events are fraction really. It's hard to recall conversations or activities. That Dort of thing.

FloatyFloat2 karma

  1. Can you talk about the kind of memories did you lost/still keep? Are they from a specific time frame or subject?

  2. How well do you remember music? Can you still sing? I've heard music can be helpful in terms of memory issues. Has it had an effect on you?

BrainInjuredGirl24 karma

This summer my niece told stories of things we rid when she was a toddler. I'm close with my niece-like a mom but I don't remember. She told me, "dint worry, I'll keep your memories" I cried.

TomKat7102 karma

Can you remember a whole lot from before you hit your head? Like early childhood memories, etc?

BrainInjuredGirl4 karma

Some but not very detailed unfortunately

stumperbicker2 karma

Hi, sorry if you've already been asked this, but has your memory improved since then? One of my relatives had a head injury recently, and seems to understand what we're saying, but doesn't seem to recognize who we are. Do you think that he will one day? Thanks for sharing, and I hope everything goes well with you!

BrainInjuredGirl2 karma

Sorry to hear about your loved one. I'd say age could factor. I can't speculate because everyone is different. I've found, so far that what I don't remember hasn't been jogged. And I grind myself avoiding people that keep trying to force me to remember

BrainInjuredGirl2 karma

Thank you and sorry about your loved one. As it stands, my memory gas not improved. It's incredibly difficult and makes me sad. I'm sure your relative is experiencing the same or will, once they can comprehend a bit more. It took me a few months to grasp how different I was

HellsChosen2 karma

If you could revert one negative aspect of it what would it be? Like pain, memories etc.

BrainInjuredGirl4 karma

Definitely memories

Czechmarks2 karma

Do you ever have memory problems? As someone with 4 sports related concussions I often find myself struggling to remember what I was talking about.

BrainInjuredGirl3 karma

Yes, I do. Are you getting better? I am sure you were much different pre doncussion

captainryo2 karma

Have you seen any change in the way you see the world?

BrainInjuredGirl2 karma

Definitely my thought process is a lot different so is my outlook. Honestly the world seems more fascinating. I become very intrigued. Everyone says it reminds them of a child asking a ton of questions. Also, I tend to become more overwhelmed and frightened so it's such an interesting change. I don't quite understand it yet

eats_aborted_fetuses2 karma

hey! i happen to have PCS after my ninth concussion (skateboarding) and was super dizzy for about 7 weeks. anyways, sometimes i get a ringing in my ear and then suddenly get overwhemingly dizzy, do you ever have this?

BrainInjuredGirl2 karma

Sorry about your injury. Yes I do experience fizziness and blurred vision and also this loud long noise in my ears

crunchyloam2 karma

What is the difference between concussions and pcs? Is it a matter of chance, or something similar but minutely different in Impact?

BrainInjuredGirl2 karma

Well everyone that gets a concussion won't develop PCS. There are a lot of factors such as age, gender, previous injuries if you were rested at the time or severely sleep deprived etc

MrJasonWestJones2 karma

Do you feel like your health care could be better?

BrainInjuredGirl3 karma

Yes, I do. Because I didn't have proper insurance, it Tok a lot of reference to even get to see a Neurologist. The delays weren't helpful

Heyutl2 karma

I find it strange that I've had several concussions and other head bumps, but have never had this occurrence. I've only been to the E.R. for my first one when I was six, but after that, I've just kinda worked through it.

How exactly did you "bump" your head to receive such trauma? Seems to me like you would have need more of a baseball bat to the head to get that more than bumping your head on a car door.

BrainInjuredGirl13 karma

I find it strange to. That's the annoying part. I keep asking why did this happen to me? Why from such a small hit. The answer I keep getting every single time, the brain is complex no one knows why it happens for some and not others. For the life of me I find it annoying and it's not rational at all. I'm sick of hearing your brain is like a computer etc etc. thankfully through blogging I've connected with others that have had mild to serious TBI's. Some I've even come to email often and we all are perplexed.

BasketFish-3 karma

How long does it normally take to recover? My football/soccer position is the one most likely to get concussion.

BrainInjuredGirl1 karma

I've not gotten a concrete response. My Neurologist says it varies. The younger you are the better the outcome

Scoopie-6 karma

Has anyone told you excessive use of technology and other brain stimulating activities slow the recovery?

BrainInjuredGirl1 karma

Yes, I limit my internet time and rarely watch a TV. For the first nine months or so, I didn't watch a TV at all

FetusChrist-7 karma

Why do you post this same ama every week?

BrainInjuredGirl1 karma

Sorry, this is my first post. I'm not sure what's on reddit every week

Moh7-39 karma

Something seriously doesn't make sense here.

So you diagnosed yourself with brain damage a couple of days ago off of a reddit post?

Yea alright.

Anyways any short google search of "post concussion syndrome" will reveal that for most subjects symptoms will go away after a couple of weeks but for some (50%) symptoms can stay for up to a year and more.

I think you need to stop over reacting because it definitely seems like you are.

Are you a SJW by any chance?

BrainInjuredGirl12 karma

Yup the internet says that. But it's not the case. Post concussive it's just now starting to be more understood, I was told 7-10 days and when it went longer I thought something wasn't right. It was only when I began connecting with others that I realized how BS that was