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 (63)

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 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

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 !!!!!
I just wanted to say thank you for this list. Although I don't experience all of them there are many that I do. Its comforting to know I am not alone. Again thank you.
I was 21 in 1991 and I was the victim of a cerebral aneurysm near my right eye. The neurosurgeons were trying to destroy some tumoral cells on my pituitary gland and the operation went wrong because I was bleeding from my arteria. Now I am 44 I emigrated to London and I started my studies again. I've got a certificate in counselling and I am studying to become a psychologist. I volunteer and I am enjoying every instant of my life. Every day I thank God I can see the light of the sun but still in every memory there is a tiny veil of sadness because I know I cannot do things before that I really enjoyed such as swimming and going underwater, doing sport such as running for 5,000 metres or playing volleyball. My lifestyle has changed but I am married and I have a daughter, my family knows my story and they know that my life is every day a question mark even if my bleeding arteria has been closed, but are now 23 years ago. What I suggest to people having the same experience is to enjoy what you really like and including the effort and the achievements you deserve...live in the present and accept your life as it is...
I had a brain injury along with a t7 Sci. Haven't driven since 07 and my life is filled with people who help me with things. I finally went home after a year and a half at the hospital. But I've gone farther than anyone ever thought I would.. I have never given up! (And never will!!)
Thank you for this article. I needed to read something on long-term TBI living, to remember ... this is the normal. (after TBI of coarse, how we measure life in the new me) I am 24 yr surviving woman alone and I so appreciate your sharing your feelings. True to the T ! Be Well ~
Yes! Yes! and OMG YES!!! THIS IS MY HEAD in a nutshell!!!!
I promise things get easier! After almost 13 yrs., I will tell you that I still fall sometimes, and I am dizzy very often, and at times the headaches are fierce.Each time I do, I am humbled all the more, I know that I am so very blessed and that my brain injury is part of God's plan for me.
I suffered a severe traumatic brain injury 15 years ago and all I can say it's a process. Try to write everything down, sort of like a journal to track your progress. At every difficulty you have, strategize a way to overcome it and practice until it becomes natural for you to do without thought process. You can't expect it to happen overnight, you just have to keep working at it and repetition will become your best friend. Just don't give up no matter how hopeless the situation might feel, just know that you're not alone in this struggle and that you can overcome the difficulties that arise as a result of your injury and just keep practicing until you perfect it!
Thank you my friend suffers from TBI some odd 30 years ago from fallling off a horse. Now she's got issues, and this article has really helped me understand, thank you so much for your article it's really enlightening to me and her.
I received a brain injury thru a car accident a few years ago. It took them almost a year and a half to confirm that I had a brain injury. I keep telling them I was having problems and they sent me to two different neurologists and they both passed me off. It wasn't until I spent a few hours with a brain specialist that my symptoms started to show up. I have problems with my balance, speech,concentration, sometimes i am standing a round a few people talking and all the sudden they all sounded like they where speaking a different language(really freaky) I thot I was going crazy. It has been horrible. Christine
Thank you so much for sharing. It helps a lot to know I am not alone. Another one doctors don't warn you about, is not being able to feel touch, not being able to enjoy sex with the one you love. It's like I hit menopause at the age 25. Taking Maca Root is usually for older people, and it felt embarrassing for me to take it, but it works. So for anyone else out there struggling in their sex life, take Maca Root. and don't worry, cause you won't be alone. i am thankful to have a very good man who has stuck by my side and helps me get things done. It is not easy for them either when everything about us changes. But my faith is also strong and have learned so much through this journey. And no matter who is in your life, we are never alone through this.

Reading all these stories, so similar, yet so different from mine is very comforting. Before my accident (TBI) I was always praised at work ..constantly being told I am such a great worker and valuable asset to the company ..after my accident (TBI) ..I am constantly hearing others making comments about how "she's just stupid" ..."I don't think she's all there" ..even after attempting to explain I've had a brain injury and am not capable of thinking the way I used too ..no matter how bad or much I really want to ..It's very comforting for me to know this really exists and I am not the only one going through it.

Does anyone know of any support groups out there?

I am not sure where you live, but March Of Dimes can help you find a support group.
I love you for sharing your personal wisdom! ONLY another Tbi'er can truly empathize with each and every point you make. I was shaking my head yes to each and every statement ( oh and so grateful to not have the vomit reaction). Its always so rewarding and uplifting to hear that someone else is tired or not okay most of the day. Tired from trying to function is hard and a lot of civilians (as I call the regular people) dont understand this because we "look" fine. But I appreciate you reminding me of just how awesome we are!
www.biausa.org has the state to state listings of support groups and any TBI related info. And if your state has their own brain injury association they will be linked under the BIA USA site.

I got out a sheet of paper to make notes while reading this post. I wrote down 1, 2, 6, 7, ~8, 10, 13, 17, and 18+.

The ~8 meant I have experienced the problem, but not to that extent. The 18+ meant I have experienced the problem with even more intensity. Number 7 reminded me of an experience posted in my own blog.

http://bicyclecrash.blogspot.com/2012/08/why-yes-i-am-brain-damaged-how-astute.html

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