Brain Injury: Everything Your Doctor Won't Tell You

The Brain Injury Association of New York State
The Girlfriend’s Guide to TBI: Or Everything Your Doctor Won’t Tell You

While dealing with the swirling questions and frustrations from her brain injury, Lisa came across a book called The Girlfriend's Guide to Pregnancy: Or Everything Your Doctor Won't Tell You. It occurred to her that she — and many people like her with a brain injury — could use such a guide when it came to dealing with the symptoms resulting from her injury. Although Lisa's brain injury occured from an aneurysm, the items in her guide can help anyone with a brain injury, no matter the cause.

  1. I choke on my own spit daily now (probably the lingering effects of the brain injury).  If this happens to you, blame it on your TBI.
  2. I get hiccups after eating or drinking. I blame this on my brain injury, too, so feel free to add your own twist.
  3. I can no longer “hurry.” My brain just shuts down if I have to do anything quickly!  Feel free to shut down on a regular basis.
  4. I constantly unlock my house, go back inside, and then lock it again from the inside — only to find the keys are still hanging in the door.  I do this every time — I still haven’t mastered the sequence five years later!
  5. I didn’t have an appetite for years. I had to set a timer to remind me to eat or I would forget. Chocolate, of course, can always be your exception.
  6. For about a year, simply taking a shower would require a nap to follow. It was so exhausting!
  7. I used to walk through the grocery store saying the name of each item I saw. I had to do this or I wouldn’t recognize what I was looking for. For example, I would be looking for tea and walk right past it unless I was actually saying it out loud. I even once asked somebody if I was really seeing cake mix because the store had been re-organized and I was sure the aisle I just went down used to have juice in it. Can you imagine what that poor person was thinking?  They probably went to look for a butterfly net……
  8. When you take a nap, you will wake up convinced it is the next day. There will not be a person anywhere who can talk you out of this.
  9. If a doctor tells you that parts of your brain have died as a result of the bleed/stroke/injury, they are probably right. Arguing with them will not change this fact.  It is OK.  Even “normal” people only use a small percentage of their fully living brain.
  10. Feeling “numb” is normal. It feels like you are just watching the world go on but you are not actually a part of it. Perhaps it is sheer exhaustion and perhaps the brain can’t keep up with such a rapid world!
  11. I would randomly vomit from time to time. Poor Nate (my hubby) has often been an involuntary human shield. I think I have had every organ and system checked for proper functioning. It always checks out okay, so doctors just shrug their shoulders and say “it is a function of the brain.”  Yeah, yeah.
  12. Okay, Ladies, let’s just get real for a moment. While swimming offers a buoyancy effect that is helpful for those with paralyzed extremities, the thought of putting on a swimsuit in March is not a favorite thing for any women of any age. I was a pale, bag of bones who hadn’t shaved since February 1st (possibly longer). Shaving was painful, as you can imagine! To make matters worse, my whole central nervous system was frazzled and all sensory input felt like another assault. So, feel free not to shave (unfortunately, you can’t skip the swimsuit).
  13. Dialing a phone number was a nightmare and often impossible to do. I could not transfer a number from one place to another. Also, I tried to balance the neglected checkbook once and it caused a massive meltdown!!!
  14. Talking too much makes me nauseous.
  15. When I sleep now, I just radiate heat for some reason?
  16. At first, I had to have my husband, Nate, sit down with me to help plan the next day. We would write numbers next to the event in my planner so I could figure out how to execute the activities for that day. It is five years later and I still need his help sometimes (but now I can usually do it by myself… I think).
  17. All time and events are measured by my brain injury. Everything is either “that was before my brain injury” or “that was after my brain injury."
  18. My short-term memory was terrible but it is slowly improving. I still have to write EVERYTHING down in my daily planner, though.
  19. I was an emotional basket case. I cried at literally everything (even answering a phone), until I was put on a mood stabilizer.
  20. I will say that the gift of Moonlight Path Body Wash and Lotion from my friends, The Masons, was just what I needed to feel just a little bit more human. Oh, to not smell like a hospital was, and still is, priceless!
  21. My faith has carried me through, along with the love and support of an amazing husband, family, and friends. A good friend once told me, “Lisa, no matter how many times you fail, you are not a failure!  I don’t know about you, but sometimes I still need to hear that from time to time.
  22. Finally, I want to share what I consider the thing that makes every pain-staking minute of recovery worthwhile. The “silver lining,” if you will, is ALL OF THE MOMENTS OF LIFE I didn’t miss out on — thanks to my exceptional good fortune of surviving the odds.

 

From BrainInjuryStories.org, a project from the New York Brain Injury Association of New York State. Used with permission. www.bianys.org.

Learn more about Lisa from her blog.

Posted on BrainLine March 14, 2012.

Comments (82)

Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.

I am a brain aneurysm survivor as well. It was helpful to hear this because it can feel like no one else knows what you’re going through. I’ve been home recovering for months now and needed to read some of these.

I’m female, 57, and suffered server concussion at the age of 10. I’ve had 5 moderate concussions. In 2015, a severe concussion left me with 18 staples, 2 convulsions.
I am considered “damaged”, I say this as my mother, father, two brothers, sister in laws and 1 of 3 adult children do not wish to see me, They have not asked to understand what occurred , They do not accept nor engage me.
Does anyone relate to being cut away by family members ?

Boy can I relate. I have been alienated by my two daughters, and my son although he let's me live here. Anytime I try to strike conversation he dismisses me. I just stay in the basement when he is home. I cannot remember what it's like to laugh and have fun. I just moved to this area so no friends. It really stinks.

So glad this was posted! I choke on my spit all of the time, never thought it was from the TBI. Also, the point about rushing and the brain shutting down, oh how much I related to that #soml. and feeling numb was an issue for 4 and a half years, like I couldn't feel sad or happy, just anger, and I lost the capability to cry for 5 and a half years. Currently, it's been 6 and a half years since I was injured, and I'm happy to say that I'm happy to be alive and well. Thanks for sharing this!

I was in a car accident when I was 17, not expected to live, but God is good. My short term memory was awful in the beginning- it's better but still not great, and my mouth produced so much saliva that I had to have a spit cup because it got to where it tasted awful. And the best part, I had the same hiccups for roughly 6 weeks. And by 'the same hiccups' i mean that i went to sleep with the hiccups and I reckon I hiccuped all night because that was the first thing that I did the next morning. I had to learn to force myself to go to sleep- with the hiccups. I might have had a rough day had i not been taking medication to keep me alert.
AAAHH... the good ole days...

The words, "that can happen with a brain injury" are the most frustrating things the doctors have said to me. Mine was 11 years ago. I'm still not the person I was, but the person I am is pretty stinkin' lucky to be here! Thank you for sharing your truths - I really kinda wrote off the choking and overheating at night. I'm so sorry you suffer them - but I'm really glad to see it's not just me...

Well I had a really bad fall at the end of February and hit my forehead so hard on either the ice or forehead and give myself two black eyes and give me a really bad concussion from it and ended up in middle of March being in the hospital for 2 weeks and my doctor put all my problems down to having a concussion and I still get where I'm really hot one moment then really cold the next moment , loud noise and sounds and darkness get to me to now

My husband suffered a TBI in Iraq and chokes on his food quite often, sometimes on his own spit. We never knew why and it's always alarmed me. It's those little bits of info that really help him know that he's not alone! Thank you!

I hit my head on a slab of quartz immediately followed by a piercing ringing in my ear and all I could see was blinding bright white. After, I felt embarrassed and kept going on like it was nothing. By the end of the night I was throwing up, fever, chills and what my husband described as zombie except for when a unexpected noise would happen then I would jump up panicked then fall right back asleep. Then I was total walking zombie. Couldn't respond to anything or anyone. I was like that for a week. Now just over 3months in I have tried to run away, almost got lost in the woods, forgotten things I never thought I could, got confused on what timeline I was in many times. I would think I was "supposed to be" with people I havent seen in years (or at least that's what I thought) I have been physically abusive to my husband (during really bad moments) specifically getting confused about who he was. I have been with him for 14 years! I have cried almost everyday and not little tears, I mean massive fall to the ground breakdowns. My husband tells me I say the same things almost every day. Like How he looks so much older as well as our daughter. Sometimes I feel like I must be off in a coma somewhere because life just doesn't make sense. (Sometimes I hope I am) I'm not use to being and feeling so vulnerable. My dyslexia that I already had is so much worse, Started writing backwards (right to left) I have also had speech difficulties. Telling left from right is also much more challenging. It's also thrown off my lady cycle. Going anywhere is much harder than I ever imagined it could be. And I use to love going out. I have huge struggles, but I am grateful for the abilities I do have. Some people are much worse off than I and I tried to remind myself of that everyday. Things could be worse! I am on the mend though and that's what's keeping me going. The other day I did a chef's crack with an egg and was so surprised I didn't even try, it just happened, then I remembered I use to do it all the time. Figuring out who I am feels next to impossible, but there is light at the end of the tunne. Things that have helped me is watching the toxins I take in a daily. Apperntly your blood brain barrier (what protects your brain from toxins) is thinner and easier for toxins to penetrate after tbi. Like foods (processed meats and dairy make me worse), lotions, hair care products ect. Not being overly stimulated. Also after having no appetite during my zombie phase my husbands friend thought to give me marijuana to help me eat, and it worked. It has also helped calm me down when I become too combative or hyper. There is some evidence that the CBD and THC work together to help heal the brain after tbI. I highly suggest only light exercise. I made the mistake of exercising too much too fast (I love to dance) and it set me back hugely. So now strictly only beginners yoga or sitting exercise with minimal head movements. I have also started consuming these daily, chia seeds for omegas, fish oil, vitamins D3+k, a supplement called N-A-C very good for the brain, magnesium and B6, B12,B3, collagen 1,2,and 3, turmeric capsules, probiotics, spirulnia powder, Chlorella powder. I highly suggest looking into nutrition for healing. Healthy anti inflammatory foods = healthy uninflamed brain! I have also noticed massage from my husband is helpful too. Also Relaxing and SLEEP as much as you possibly can! The brain heals during sleep! My heart goes out to all you other TBI people out there and I wish you the easiest of healing <3

* Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only. And I know it's hard but try to stay positive and remember to have fun and laugh when you can.

Lisa, Your undaunted spirit is inspirational. The list is so moving and honest, I'm so glad you ended it on the positive note. You are one of those motivational people in life who anyone can look up to with wonderment and respect. Dave

I had a severe TBI 7 years ago today actually. I just so happened to stumble across this and I relate to so many of these things in so many ways. I have hiccups nonstop, it drives my husband bonkers lol. I cannot regulate my body temperature to save my life (literally if the shower gets slightly too hot I pass out, and if I get too cold my arms and legs start to turn bluish white). I get dizzy randomly for no reason at all. Being around too many people makes me so anxious that my Apple Watch tells me something’s wrong with my heart rate. I randomly leave my car running in parking lots and will come out of places to a police car sitting behind it waiting for me to come back to it. The numb thing hit me the most of all, I’ve been feeling that way for the past three years and been thinking this whole time it’s just been me. I had thought at times it could be related to my TBI but always had discredited it for whatever reason I could come up with. This has been very enlightening and I am so thankful to you for sharing it!

Wow! This is just overwhelming, to read. I never feel like people get it, and most people don't. Here's my story! When I was 15, I was breaking ( riding out) a filly Colt. She threw me, about a mile and half from my house. I was not conscious, when I got to the hospital, and fell into a coma. During coma, family learned I was pregnant. I did t have knowledge of this, as I had been sexually abused, and I didn't tell anybody, because I was embarrassed. My parents were terrified, as well as confused. When I regained consciousness, I was in very bad shape. I couldn't walk, talk, and had no memory. The pregnancy was kept under wraps for a while. When they told me, I was terrified, scared, and trying to figure out how I would take care of a baby, when I needed others to care for me. I missed a year of school, I didn't even know my ABC's. Time Marches on though. I carried the baby, gave birth to a perfect son. He graduated Valedictorian of his class. The very same school I graduated Valedictorian from. I graduated with my class, without summer school.
The effects long term, are seriously rough on me. My memory is so bad. I'm tired all the time. I cannot keep a job, because I dont think fast enough. My 2 daughters tell me I am a horrible mother. They don't understand, what I have been through. They are 20 and 26. If I could gain anything from this ordeal I have been through, it would be.. I just want to be important to my kids. I'm sorry this was so long.

I had a car accident two years ago now I had a TBI and I can say I am not the same person I was before the wreck like no one gets that cause I only know how I feel and most people round me think I’m fine but deep down I don’t feel like I’m here anymore and have such a bad memory now and I’m only 23 but I do good to remember the day before stresses me out I hope it gets better but it has affected my life completely it’s been rough I must say glad to know other people out there cause I haven’t even had a handle to go to a neurologist since the accident and I have a bad temper and I get very depressed easily and without medication I’m total different person just wish other people would understand but they don’t . Haven’t really talked to anyone else that has had a TBI . I can explain more bout myself if I hear from one of y’all .

I to feel this way I just had my 2nd tBI 18yrs apart I'm now more confused and all to.myself I'm to much for others some times and other times I'm lost I'm fighting for disability I have lota isues I'm here if ya wana chat

I had a moderate traumatic brain injury almost 17 years ago. I fell down some basement stairs and was not found until the morning. I am a very lucky person - in addition to my brain injury I also broke ribs, clavicle and orbit. The accident occurred in July and was able to return to work in January. I am a 6th grade teacher and I started back with half days and after about a month I returned to full time. However, I recently have been struggling with lots of different things. My friends say, it's happening to them too, (just normal aging) but I feel like what I'm experiencing is more than the "normal" stuff. Any of you out there where it's been years since you TBI and you are experiencing similar things? Sometimes I feel like I'm losing my mind. I'm interested to hear from others. Thank you so much!
Sharon

After my TBI in 2014, I was left with PCS. My friends and family would say the same thing as far as aging is concerned. Looking back, I know that those sort of "aging things" happened to me A LOT more than everyone else. I questioned myself because of what they would say, but now that I am a lot better and I know better. No need to question yourself. So it probably is happening to you more often. You are not losing your mind! The fact that you notice, means you in fact have a very good mind!

For example, for me, not remembering a word or saying a similar word instead of the one I was thinking happened daily for years. It doesn't happen as often anymore.
I will still pause longer in my thoughts and/or speech waiting for the word to come when I am talking and doing something at the same time, but it's not a daily occurance anymore.
I have found that the Atlas treatment (specialized Chiropractor), Decompression therapy for my C7 disc and daily stretches I made up after researching on youtube and experimenting on my own with what works for me and my problem areas, has brought me back to very close to the same as before. However I have to keep on top of it or my progress goes backward.
What helped me a lot with the little quirks that happemed to me, was to stop focusing on it and accept it as it was. Other people didn't really notice and not focusing on it, helped it not happen as much somehow.
After doing a ton of self research, I am convinced that my problem does not have to do with my brain, my CT scan and MRI were unremarkable so they called it a TBI.
This is something physical in my spine, I think its tissue damage on my C7 and Thoracic spine plus Disc compression. Daily exercises and streches are KEY to my health. That is just what worked for me. I don't believe the hype for 1 second that after years with PCS that you will not recover much because I am living proof that that is false. I finally found things that work. Doctor's really don't know much from my experience so if you still have symptoms, don't give up and go to many different doctors and try different treatments to get more ideas and see what works for you!! You can probably find a way to alleviate your issues even now:)

Sharon, like you I am a teacher. In a nutshell, back in November 2019 as I was leaving another teacher's classroom to head over across the hall to mine to teach my Honor's Physics class. Two huge students were racing one another down the corridor. I never saw them coming. My teacher friend said all she heard was a "woosh" sound, when she stepped out into the hallway she helped the two students up off the floor, they crashed into me sending me head first into a brick wall. As a special education teacher and a physics teacher - a wonderful combination, I had meetings that I arranged for the next day. I went to the school nurse, she asked me who was going to meet me at the hospital or pick me up. I refused, saying I would be just fine. I tried to teach my last period class and even went to work the next day. Two days later, as I was returning from VA to MD on my way to a family funeral, I had a car accident in my Mercedes SUV. A flat bed truck took my right away and I didn't have enough room to swerve around the long flatbed. After this, I was done. The headaches lasted all day every day along with nausea and photophobia. It was been six months and I am still totally bed ridden. I don't venture out for long outings because it just wipes me out. I live in my bed. If I wake up with the nausea, I just capitulate and ride it out. The neurologist that I see refuses to administer pain meds or pills flor the nausea. Even his colleagues say I should get a second opinion. The neurologist thinks I should deal with the headache, back pain and nausea naturally. I see a therapist, a psychiatrist, a physical therapist and a chiropractor every week. I have had several MRI's, CAT scans and cognitive tests. My last cognitive test I scored 11 out of 100 for word recall, and 23 out of 100 for memory. I use my brain for a living. I have always wanted to write a book, and a former tv new anchorperson, not being able to read and think clearly is daunting. I have conversations with my family and friends and in the short time frame of the discussion, I often forget that I have just mentioned or said something. My new normal entails me writing post-its to remind me where I have put things. With the memory loss, I feel like I am getting worse. The headaches don't last the entire day anymore since about one month ago and neither does the nausea, but they can be triggered by loud noise and bright lights. I am on sleeping pills that are not effective. I fall asleep whenever. Sometimes not being able to sleep until 8 am in the morning, hence, I schedule appointments for later in the day, because I wake up so late. In all of this, my school system is fighting my worker's compensation claim. It's a good thing I took out private insurance, or I would not be receiving any sort of income. The accident was caught on video camera, thankfully, but because of Covid 19 all courts were shut down and have only recently opened. I have been told by my school system's HR department that I must pay $3500 to keep my health, dental and eye insurance because they will no longer pay. So, until I go before the Commission and either win my case or lose, I will have to pay $1000 a month to continue my health insurance coverage, and the money in arrears. It's like a catch 22. I need the therapies and medicines and if I don't have the physical and cognitive therapy by default my school system may say I am not that sick. I have been diagnosed with a severe traumatic brain injury, PTSD, and depression. Both my parents died within six months of each other last year, four more family members passed away last year. I took care of my Mom the last year of her life, I did not want to put her in a nursing home. To save the family home, I moved from my beautiful townhome in VA, back to the home my parents had in Maryland to save it from foreclosure. As the only child my parents had, I have had to settle their wills and business while having this injury as my school system fights this claim. I am a survivor. I know that time is a healer and I am very, very thankful that I have the private insurance that I have. I receive a monthly check that is only $1000 less my regular paycheck. I am looking into Social Security but this I am told can take awhile for them to process. I am hoping for a full disability as I am seven years from retirement. I can't imagine teaching 160 students everyday in a busy high school setting with a long commute. This accident has changed my life. I am hopeful and optimistic that I will get better, I don't have an option. I have so many other interests in life and on my bucket list, that I refuse to let this injury define me. I am an avid believer in the power of the mind to heal oneself, and while everyday brings new and seemingly daunting challenges I am thankful for my children, family and friends who support me during this my challenging time. My advice to anyone going through a brain injury; take it very slow with activity, allow your body to heal, don't feel guilty for wanting to sleep/rest and don't think you can do all the things you did before right away. This weekend I am taking my kayak out with my daughter, she will take her kayak and we are headed to a beautiful river in VA. I refuse to let this accident define who I am and what I can achieve. I wish all of you the best. Just know that time is a healer. Namaste

I also had a moderate TBI 17 years ago. From a fall, the medical people were more focused on my broken bones than my brain injury. I was injured in August and after surgeries and rehab I was physically ready to go back to work in January or February. The severe headaches had me in and out of the ER for nearly a year, no one wanted to deal with me. Driving myself to and home from the hospital every time through blinding pain. Wanting to know what happened, every detail was my obsession as well as everything that happened while I was “out of it”. Of course it is still a mystery to me.
I still have difficulties, things, situations, people make my normal kind, calm, relaxed personality go haywire. I get angry when people push me too hard, they just do not understand if I am staring at them thinking and not saying anything it’s because I am trying to find the pathway through my brain to understand. Afterwards I am shaken, and very upset by the experience. I play it over and over in the “spin cycle”, trying to figure out what happened, how it happened, how to avoid it happening again.
I wanted to try to get out more into the real world, in addition to my career job which keeps me in a closed environment. (No public access at all only the people who work with me). I seclude myself in my environment, my house and garden are my safe places. Most times completely alone with my dog and cat. I have gone days and weeks without talking to anyone.
I took a job at a coffee shop. I thought I was ready to be in the real world. I took the job on the weekends. I did this for 9 months until I tripped and fell, not hurting myself physically other than a few bruises. BUT... this caused my brain to short circuit. First I panicked curled into a ball and didn’t want anyone to touch me, or talk to me. I didn’t want help getting back up, when I finally got to my feet, my heart was pounding so hard and I couldn’t catch my breath. I was nauseous with my head pounding even though I didn’t hit my head. I was trying to figure out how to act normal, how to be not losing it. I would have run home in a second but I had 14 hours more to work that day. People kept trying to talk to me, ask if I was ok, if I hurt myself. I wanted them to just leave me alone, so I could figure that out myself.
Since then, I had to take a leave of absence from my coffee job, I lost my temper with my supervisor who was in my face scolding me in front of a customer. After the fall, I couldn’t handle it. I was not able to think or do things that involved other people, serving customers, etc. too many things coming at me makes me feel like I don’t understand even the language they are speaking.

I am working on things again, with a therapist. The struggle is getting what is happening in my brain into words. I am afraid of being thought crazy, worried of hearing things won’t change or get better. It’s a vicious cycle.

Yes, regularly. And when I'm working to climb up out of the aging hole of downward physical as well as mental function,those callouses comments make me want to smack them, especially when I can see they have no clue. And I know some suffer the same problems but are content to self-destruct and feel old and dead inside. I thank God for a few professionals that understand. Unfortunately there are no TBI NEUROs anywhere near here & I am stuck looking for A POSSIBLE SOLUTION, called noninvasive Transcranial Magnetic Electric Stimulation. Would it help me? Would it help you? It is known to help many but it seems as scarce as hen's teeth. But I keep looking! The ignorant & detractors won't change. Maybe not knowing & caring is easier - just not for some of us.

I have had several TBI's about 12 years ago. Thanks to one very large abusive ex husband. Its only been recently that I have accepted the fact... Its still hard to control my emotions, remember simple things, even reacting fast is beyond me now.... I have noticed I sweat more at night too. If only I can get the people around me to understand I'm not doing it for attention... I rather remind in the shadows.... Or that I can control certain things now. I have most if not all the problems on this list except I'm not as supported as y'all. My man tries so hard and I repeatedly tell him all the time... I don't know what happened. I become a different person that I can't even recognize... I hope everyone gets the support and care they need... Its so important not to feel alone... That's when the devil gets you and is relentless... God bless.

How well I know these occurrences, and many more, there is no end to them. It has been nearly 6 years and dealing with the Insurance Company has made everything worse. Happy to be alive though. Have a pleasant Day!!!
I had a minor (!) TBI last year in Feb and see familiarity in a lot of what's above. I would add to the list that after injury, have a sort of cat flap installed just next to the cooker so that all the ruined food can be scraped right through it, onto the pile of burnt toast that is in the back yard under the kitchen window (next to the cooker!). I totally identify with everything being 'before' or 'after the injury' too. Thanks for this :) Jo
After three years reading about my symptoms, going to Neurologist (MD), and trying to coordinated a treatment (or one specific treatment at the time), I having read sometime so accurate that this document. Not that I have all of her symptoms, but most of them are so painful to overcome. At this time, I have so progress and I fill proud of myself, "I am coming back." Thank you for this article, it helps to balance my spirit, in a peaceful way!
Oh my gosh, this is so me. The vomiting, the heat at night, excessive talking making me nauseated I have to get this!!
Thank you for sharing! I had a TBI 11/11/11. I had a seizure from brain swelling caused by a 'very large' meningioma. My craniotomy was 11/15/12. It gave me peace reading your article - I could relate to 95% of what you said! Thank you!!!! God bless...

So proud of you, Lisa, for your courage, sharing, progress, and most of all your kind heart, gentle spirit and inspiration to others. I feel honored to know you.
Robin Cohn

That was fantastic! In regards to #15. Please have your thyroid checked for Graves Disease. I did the same thing and then I found out that my Car Accident (mild TBI) caused Graves disease. I'll be hopeful that yours isn't that ;) Thank you for your list.

Thank you for sharing, I cried and laughed as I read the many items I also deal with on a daily basis. My fav though is that everything now is "before or after my accident" related.
Doug

I have many of the same issues listed here. I had a severe TBI in 2008, and for the most part, I am 'normal', whatever that is! I wish I would have had this guide 4 years ago!

I sustained a TBI on April Fools Day of '99'. I wish to God that that day had never happened, but I also thank Him for letting it be me and not another part of my family. It was a pretty bad car wreck. There needs to be more pages and information about this subject!!

Misty

Love and light Lisa! Thanks for sharing with us! Best of wishes and lots of good vibes!
I am a guy but like this page, . . and I to would suggest going to have your thyroid checked. I have a mild/medium TBI and have 'Graves Disease' as a result. Very hot, fast metabolism, eyes won't focus.
Wow, as I was reading the article I thought about being hot while asleep - because this happens with me. Then I saw that someone commented about Graves Disease and had the same issue and the Graves was because of the TBI?? I have Graves too (along with my tbi) -- the doctor told me it is hereditary. Gonna be double checking this issue!
I got a TBI last September. I am still having vision, memory, balance & emotional issues. I have always been a strong person but, this is really testing me!!!
I had a 'minor' TBI, and I can relate to most of this and especially jo's comment about the burnt food, and not recognising I am hungry until I smell food! The other thing is saying oh I never know that to a friend then having them say that I told them that particular information apparently off the top of my head a month ago... pretty embarrassing at first! But thank you so much for posting this list I feel so much less alone after reading things like this x
Please help get the word out that Low Energy Neurofeedback can dramatically reduce these symptoms. An EEG faintly echoes back brainwaves through three wires to the head for just a few seconds. Totally safe and 95% effective with TBI. Check it out! No expensive mapping starts right out with treatment, so you know right away that it works.

I don't have a TBI but have about 12yrs. of TBI experience. My son suffered severe TBI when he was 1 1/2yrs. Now he's 15 and having many challenges emotionally and socially. His physical and cognitive delays were/are tough, but this is scary new territory. I have been worrying so much about him as he becomes a young man, but after reading all these posts I must say that I am utterly humbled and ashamed. I am humbled because I notice that folks with TBI are so very determined; and not just in the present moment. As I read your posts I can sense a determination beyond measure that has been tempered through acceptance and fueled by amazing will and spirit. Together, these are UNSTOPPABLE COURAGE - Patient, Ever-Present, No-Rush, Forever-Forward, Take-A-Rest, Or-Even-A-Nap!, But-Never-Quit COURAGE! This humbles me because, even though I have seen all these qualities in my son as he has recovered from TBI through childhood, I have never realized until now, from reading your posts that - while I thought I was showing my son courage; he was teaching courage to me. While I have always tried to be a hero for my son; I now realize, truly, that it is my son, Josh, who is forever THE hero to me. He will find a way to be ok. Further, I may seem like just some Dad gushing over his heroic son, but I am grateful to EACH of you who conquer TBI; minute-by-minute, day-in and day-out. You all have helped me realize where courage really comes from. YOU ARE ALL MY HEROES. I am forever grateful. -----Oh, and why am I ashamed? That's Easy! I'm ashamed of wasting all that time worrying!!!!!!

Kindest Regards,
Steve
Glory to GOD!

I can relate to everything, on here thanks so much for coming up with this. It helps me, to understand more of what I have come to call my quirks.
THANK YOU for such beautiful, honest, and inspiring words!!!! (some were even funny, as I completely understood the exhaustion of talking, showering, etc!) :)
My daughter had a TBI in 2008 at 3 months old. She had brain surgery to remove a egg size tumor, she had a stroke, has terminal brain cancer, went through 17 months of chemo and has seizures. She is now 5 years old and I often wonder how her life will be as she grows. She has many disabilities, one of them being she is non verbal so it it very hard for me to truly know how she feeling. Reading your post kinda gave me a look at what my babygirl is going through. Thank you for sharing.
So insightful! My husband radiates heat when he sleeps too! I wonder what that's all about...I call him a human heating pad! I wish you continued healing, love and laughter.
good luck to u........
Omg!!! This is me and my TBI daily. Whenever i trip or fall I say i am hugging the wall/floor or "yep, its sturdy." I hate the random choking especially at night or the hiccups that won't settle. The spins and the sensitive senses ( lights, music, smells, vibrations etc) thank you. I feel like someone gets it other than practitioners. XOXO

Am REALLY GLAD to know that I am not the only one. Had 2 surgeries for subarachnoid hemorrhages. Sorry if the spelling is wrong. Have tried to deal with this for years and you have FINALLY hit it on the head. I guess that I am NOT loosing my mind. After reading this, I CAN admit to myself that I AM DISABLED. Really didn't know what was wrong with me before reading this. You have opened up my eyes! Thank you SO VERY MUCh!

Susie

I had a very bad TBI 03.14.2011 at work. I have every single issue you experience. I also have Major Depressive Disorder, it appeared as a symptom of TBI. I have what I call my INsignificant other. He doesn't get it. Since this this accident happened he has been very rude to me, calls me names, yells at me constantly. He makes me sick. Literally. Then 05.20.2013 I fell out of a very high up cab tow truck. I think I am lucky I am alive. So unfortunately, this new accident has made all the "side effects" worse. I had to have my antidepressants increased in strength. My neck sometimes is so painful that I can not hold up my head. And to top it off, I have an inoperable spine injury from 11.26.2005 along with fibromyalgia. I get no help at home from Bob (insignificant other). And he is so lazy, the last time the lawn got mowed was early to mid June. You know, I don't wish TBIs to to happen to anyone. With the exception of Bob. Then, and ONLY then, would he understand what it is that we with TBIs, under take on a daily basis. However, he is such an idiot, he probably wouldn't. Thank you for "listening/reading" my small story. God bless all of you who suffer from this terrible problem. ♡♡♡
I agree with this posting. Number 10 the feeling of numbness was described to a T
I just want to thank you for writing your book, however I don't see why you had to write it specifically to women. I has a traumatic brain injury 8 years ago and I suffer from many of the same issues. Regardless, thank you for sharing.

right on, those words are my everyday struggle. thank you peace & prayers SURVIVOR 9/19/09

I am 5 years out and still struggling and I still love to hear I am not alone in how I feel!!
It has been 20 years for me! I was 16 when I survived a severe TBI. I have fought and succeeded academically and socially for 20 yrs! I thought that I was all better !?!?! I thought I was beyond that... Now at 36 here I am at this website trying to understand how and why I am "different". I am crashing comparatively to others my age. I am afraid that I have reached the top of the peak and I am falling down faster than most !!!!!

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