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Kim replied on Permalink
Em what happened with your boyfriend? My situation is literally almost exactly like yours.
Justin replied on Permalink
I had a tbi in July and I'm curious if you still have tinnitus and vision problems. I'm a bit worried that both are life long symptoms. My ear dr appointment is in 3 days and my eye Dr appointment is in a month. Please tell me they at least got better over time.
Vera replied on Permalink
Hello, I was wondering how it goes with your tinnitus and eye complaints. My boyfriend had a concussion exactly one year ago due to a blow to the head and is still experiencing tinnitus and eye complaints. MRI doesn't show any details. Are you rid of your complaints?
Susan Osentoski replied on Permalink
My tbi was 8-6-16 and the vision issues were treated with prism lenses 3 different level. The hearing issues get somewhat better, still use noise canceling earbuds.
Anonymous replied on Permalink
How are you doing now?
Noonie replied on Permalink
As a RN, who suffered a TBI while at work, I was lucky and was referred to a TBI expert at the University hospital downtown from my hospital. I also saw a neurologist, and a speech therapist. I love this article, it has helped me so much with my PCS, symptoms that I'm left with. I have printed this article and given it to my family members, so they can better understand my "Spells". That is what I call the days when I have a hard time with lights and sound, and spend the days in my office where it is dark and quiet. The best thing, I have found for me is meditation. The music calms me.
Linda replied on Permalink
Thank you Noonie for sharing....I just found this and I'm feeling so grateful right now. I get so down because I just want my life back. I was in a car accident 2 1/2 years ago, doctors telling me it will get better. On July 4th I had a TGA. My family was all around for a wonderful day and I have no memory of the day whatsoever. My mind evidently had gone into overload.
Mike replied on Permalink
I had 3 concussions in the last 5 years. I healed but the last one..any loud impact noises trigger symptoms and I'm done for the day. A young guy below me keeps slamming the door in the apartment below me. The door is made of steel and when he slams it the whole apartment shakes. I approached him and he said it's because the door's broken but it feels like he is doing it on purpose. I spoke to family but they think I should find a more suitable place. Everyone is exposed to it. It brings on foggiest irrationality. It feels like you have gone a few days with no sleep. It is frustrating because I seem to get better and then a loud door slam or his truck which is directly below me. Why would a loud impact like a truck or car door being shut bring on symptoms?
Stephanie replied on Permalink
Hi Mike, I experience something very similar with certain sounds causing my symptoms to flare up, and I also have a problem with noise from a neighbor. I've found out that you can ask your landlord for reasonable accommodations for a disability. Fixing the neighbor's door would fall into that category. Hope something in that might be helpful for you.
Steph replied on Permalink
Because after 3 concussions your nervous system is really overly sensitized - to many things. Pressure, touch, sounds, memories. Think of it, that slam does create a sound wave that your highly sensitive body feels in so many ways you don't even notice. A loud enough noise blast can literally kill people. Also your brain remembers the pain and the crashes. They had sounds too - metal slam i would think. Triggering sounds for an over protective brain. Parts of your brain are also literally gone. They broke and then died in the aftermath of the concussions. Its one of the things drs kind of neglect to talk about. But that's why we're have so many memory gaps, and problems doing things we used to. And it takes a while to relearn things. Cuz we are having to form new learning paths in our brain. But sometimes the parts that died arent just paths they're important. But you can get brain over load now because of it. And certain sounds or tones or frequencies are more triggering than others. Diets higher in good fats, nuts, fish oils, avacados- spread throughout the day and supplements like magnesium l-threonate really help your brain to cope and heal better.
Sharon replied on Permalink
So thankful to find this and read it and all of these comments. Told my hubby it's like finding my species (or community). Nice to know I'm not alone. I have a mild tbi from a car accident, just passed the 1 year mark. Still not able to work. All the same symptoms, headache, d iui zzy fatigue, sensitivity to sound, light, motion, stimuli. Tinnitus. Plan to look into that Choline someone mentioned. I know I've made progress but it feels like I still have far to go. I get a random day here or there where i still have symptoms but my head feels clearer and I'm hopeful that I'm almost over it but then I always seem to slide back a bit. One step at a time I guess. Progress not perfection. Be well everyone.
sherry replied on Permalink
About 4 months back i fell and hit my head off my bathroom sink ( i was an idiot and was drunk ), and a year before that i hit my head hard off of a marble counter at work ( after the marble counter encounter i almost knocked myself out , blurred vision ect ) i just shook it off and went back to work , after a day or so all i got was a goose egg. after the last incident i noticed major issues with my memory - forgetting what day it is , even what year, getting lost in grocery stores , having a hard time learning new information, anxiety is also so much worse ( ive always had anxiety but i managed it with keeping busy , diet ) . can you get issues like this months after hitting your head? I just got a new doctor shes a physicians assistant ( its hard organizing doctors ect when you have severe brain fog, no energy ) . I told her about these two incidents and she said * most doctors would ask why you didn't * black out *after each incident , - i did kind of pass out after hitting my head off my sink but i dont know if it was because i was drunk or ..from hitting my head. ... another symptom i noticed is when i try to sign my name i feel like im going to have a seizure, my entire body tenses up, face ect..i told her this and she said * your thyroid will be checked and to see if your anemic , see you in two weeks * Im like ..what the hell? why wouldnt she order an MRI or CAT Scan...her reasoning was * could cause cancer, lol! i dont understand why after me telling her all my symptoms and what occurred why shed think im anemic ...simply because i said im fatigued..but than she ignored every other symptom. I know its partly my fault because i didn't go to a doctor directly after these incidents but its because all i had was a mild headache that went away and a goose egg. Should i go through all the blood work or just got find another doctor that will scan me or do other neurological testing ? Its a nightmare trying to find a doctor . the odd thing is she even admitted i could have a concussion but not be brain injured....if im not injured than why all the symptoms i asked . Im barely keeping it together, and i feel like a burden ...i got a simple job just doing janitorial but its in a busy place- may be to much for me right now but i refuse to not work atm .I dont want to make it worse if it is a concussion ..... sadly my diet is also garbage i skip meals daily ..... so its hard to pin point exactly what it is . The human body is a mysterious thing . Any advice /tips would be appreciated...i feel like im mentally handicapped .
Person replied on Permalink
If you are able to find a group of concussion experts, you should do that... for example Barrows Neurological Center in Phx has a group of people that make up their Concussion Team - Neurologist, Neuro-Opthamologist, Speech Pathologist, Physical Therapist, Occupational Therapist.
The latest research in concussion tells us that you do not need to black out to have a concussion. Concussion can happen over a period of months and it is a metabolic response to your brains healing. Your body sends an abundance of the already existing proteins that are necessary in your brain, but the over abundance causes a negative response and is toxic.
If the doctor says you should have blacked out or need to exhibit these three symptoms w/in 24 hours they are likely operating under old concussion research. It's likely not their focus or interest. So, if you do not have access to concussion experts and then find a doctor that is willing to except that they may not have the most recent information on concussion, but are willing to learn so that they can better assist you.
Recruit a friend, family member, librarian, college student, etc to help you find more recent data so that you can go to your doctor office prepared.
Alyssa replied on Permalink
Hi Sherry, My advice would be to get a second opinion!
Walter Meyer replied on Permalink
I normally wouldn't comment but I think I should in hopes that perhaps I can be of encouragement to someone else.
In July 2016 I hit my head while long boarding with my Husky. (It looked easy enough when my 18 year old did it).
Because I already had earplugs becauae of one of my clients I found I had to use them all the time if I was in a group of people of more then 3 or 4. I also use my prescription safety classes even inside. These are dark with dark side panels too.
I will add one other symptom to the above list in addition to the buzzing with was not in the article but someone else mentioned.
I found through observation and documentation that I am heat sensitive too. If the room is 21c then I am fine. But if the temperature goes up I don't notice I am starting to fatigue at 22 c but by 23c I realise why I am fatigued.
The clincher for me on the temp issue was the following.
I often fatigue while driving for about a half hour. This one day I had to drive 400km because we had to be home for the next morning And I knew I couldn't do the drive at night. I put the temp on 16c and remained clear headed the entire time. Yes I was super freezing and my wife had to sit in the sun and warm up for 2 hours after we got home but I realized definitively at that time I was truly heat sensitive also and this was a major factor in my symptoms in addition to the light a sound etc.
Here is my encouragement to all of you. Keep pushing forward. I don't notice improvements on a daily or weekly or even monthly basis. But looking back yes I am improving. I have had a half day without a headache I didn't realize this till it started raising in the afternoon that I had been headache free for that morning.
When I first started to do walkabouts. I could only walk 200 m at about 1.6km/hour it took a long time to improve and it has been slow. Some days I regress and like I said the progress isn't noticeable daily. By September 2018 I was walking every day averaging 6km in one continuous walk without breaks. And I was walking about 6.5km/hour.
There is a light at the end of the tunnel. Yes it is a constant battle. Yes I have to take breaks especially from the computer screen. And yes there are relapses. But keep walking. That seems to be one of the things that has really helped me push through the fog.
I alao believe it really helped I had a friend I was taking to on the phone while I was walking. It was wonderful to hear her voice in my ear and she seemed to encourage me on. Simply by speaking with me and being there
So walking with someone helps. You aren't alone Even if that person is virtually walking beside you. It was when I was talking with her that my walks jumped up dramatically as I seemed to have platoed at 2km and couldn't seem to push past that for many months. From April 2018 to September 2018 was when I really started to improve in my walks while talking with her on the phone.
My point. Keep doing the little things to heal. Don't give up. You might not notice the progress right then. But don't give up. I even can speak Spanish fluidly now again. That also took a long time.
Anonymous replied on Permalink
This is heart inspring advice; thank you
Mark replied on Permalink
I somehow acquired a TBI in April '18 without hitting my head. I was at a party in Mexico when I noticed something was suddenly wrong with me. The music there was catastrophically loud. I had been the life of the party, but the music had been bothering me all night, and at some point around 10 pm someone asked me a question, and my answer was gibberish. I knew it was gibberish, so I tried to explain my answer, and that answer was also gibberish. The rest of my time in Mexico I was antisocial and had a really difficult time talking to other people. But with two consecutive rounds of food poisoning, until I finally left a week later, I just kept to myself.
When I got back to the States, I immediately started a new job. The guy that hired me accused me of lying on my resume and later of doing drugs to explain my odd, stupid, antisocial behavior. I initially thought I had meningitis because it felt like my brain was swelling. I was hypersensitive to everything, I had very poor balance (felt like I was drunk), had very low awareness of everything that was going on around me, I couldn't hold a conversation, and I couldn't form any thoughts. I honestly thought I was dying.
I went to urgent care and she sent me home with ibuprofen. The symptoms persisted and a few weeks later I went to a different doctor, who did the same thing.
By the 2.5 month mark, I started doing research. It took almost a week to narrow down that my symptoms were probably related to a TBI. It took so long because I never hit my head.
I went back to that doctor and told him what I'd found. He asked if I thought I needed to see a psychologist or a neurologist. The insinuation that I might be out of touch with reality vs. experiencing serious medical issues destroyed my faith in him.
I saw a neurologist who was far more interested in regaling me with stories of his medical residency 30 years ago than in helping me out. He also didn't believe me and said I seemed fine, but said he'd order an MRI if I wanted. I did, and I had it immediately after his stupid visit. I wish someone would have warned me that the machine sounded like a jack hammer, but I grit my teeth and bared with it.
The results came back with a big white splotch in the prefrontal cortex in front of my left ventricle. Brain damage for which they couldn't determine the cause.
EVEN AFTER getting these results back, he was skeptical, "Well that could've happened to you during birth...." He didn't offer me any guidelines, suggestion, or support about how to recover. He spent the rest of the 90-minute meeting telling me about his trip to London and France. Thanks.
It's taking me a very long time through trial, error, and research to come up with things to avoid and things to engage in to, at least for my recovery, improve and recover from the symptoms. I still worry that there'll be some permanency to some of the symptoms.
I've already come to terms with the fact that even when I recover and feel normal for a while, it's not permanent. Too much stimulation suddenly causes relapse and then I'm dull and stupid again and it's like no one's home, and I can't handle social situations or complexity.
Things I've found to avoid: electronic screens of any kind, noisy places or situations where there's too much going on, too much sensory stimulation of any kind, anything bumpy or jostling, heart rate going too high/intense exercise, focusing or having to focus or concentrate...
Things I've found that helped: CDP choline (a supplement in the US, a prescription for brain injuries everywhere else); regular, low-impact mild-to-moderate physical exercise like walking, hiking, kayaking (running and sports probably have too much bounce); sitting quietly, doing nothing; and spending periods of time throughout the day being mindfully aware of bodily sensations, feelings, and thoughts. That one really seems to help. Getting out of my head seems to be when most of my progress has been made.
Ed replied on Permalink
Thank you for your detailed and informative account. I experienced a TBI nearly three years ago resulting from a vehicle accident, and continue to have symptoms consistent with PCS.
My experience with Neurology was similar to yours, as well as with Neuro-Psychology. Modern testing methods simply aren't comprehensive diagnostics, and of course if they can't see it on an MRI as in my case then it doesn't exist. Sadly, one thing I've learned through all of this is that for all of the "experts" in the field, very little is actually known about how the human brain works. There's a whole lot of theory, but damned little understanding. Each specialist I've seen has opinions about which they're completely convinced, yet were unable to definitively answer even my simplest questions. That said, I'd love to be proven wrong in the future.
My coping structure closely resembles yours. I'll be adding CDP choline to my diet, and see from other comments that some folks have good luck with acupuncture, so I'll be looking to add that to self-care as well. One supplement that I believe has helped me is (standardized) ginko biloba, to assist with memory. I still use a high quality CBD oil to help me function through mood regulation issues resulting from certain and excessive stimuli; it also helps with social situations. Kanna is a natural SSRI that still helps me through periodic episodes of acute/suicidal depression, an herb I discovered when I refused to be put on an anti-depressant early on in treatment. Also, medical cannabis has turned out to be a godsend, for which PCS is a qualifying condition in my state. From the outset, I've felt impelled to address my (own) well-being as naturally as possible, and will continue to do so. For although the TBI has caused a lot of trouble in some respects, it also seems to have awakened part of my brain that seems to be trying to work itself (or something) out. I'm doing my best to support this process, though I'm not always entirely successful.
My heart goes out to you, and to the other folks represented in the comments.
Wishing healing to all those with a personal reason to visit this page. <3
Mike replied on Permalink
Sounds to me like you had an ischemic stroke, a transient ischemic stroke to be more precise. The abrupt loss of speech is very telling. You might want to investigate stroke recovery, albeit it probably looks very similar to TBI recovery at this point. Best of luck to you, keep pushing forward, the system will recover as best it can.
David replied on Permalink
I hope you have gotten further in your recovery by now. My friend has TBI and is yet to see a neurologist. He’s been put on all kinds of antipsychotic medications and antidepressants. I’m trying to help him. He’s been denied ssdi twice and now I’ve hired an attorney. Good luck with your recovery.
Chaplainjudy replied on Permalink
I had a TMI from a bike accident October 2018 and went to the ER. I was wearing a helmet, and the CT scan indicated no bleeding. 2 months later, however, after experiencing dizziness, and weakness on my right side, and being miss diagnosed, I was admitted to the ER with a subdural hematoma. Had emergency brain surgery and now recovering. I'm still resting a lot and can't handle fluorescent lights. Headaches come and go.
Andi replied on Permalink
What an excellent understanding article. I received mild TBI after a rear end car accident in August 2017 and am still suffering. I felt like nobody believed me other than my lovely wife. They finally found I had broken a few bones in my inner ear and I developed Tullio. My doctor had never heard of the condition which causes vertigo on certain pitches of noise. I suffered from the hyper sensitivity to noise but was told to get the ER 25 custom ear plugs. Yet again my doctor had never heard of this and the insurance company is currently refusing to fund but they really work well in busy situations. If your having issues with sound in public places please see your consultant and look into the ear plugs. They cost me $250 AUD for the pair (custom made). I was told I should expect all the healing to be completed within 18mths. It looks like the new me is here to stay and that's no picnic. Good luck to everyone else experiencing these issues. Your not alone.
Sam replied on Permalink
I have a mild TBI - got a concussion by hitting my head off 2 walls. Left side at the back hit first and ricochet to the the wall on my right. I also have whiplash. I've been getting acupuncture to help. My fatigue if awful though. By afternoon I'm exhausted. I sleep for 2 hours and am ready for bed by 9 pm. My eyes are still very light sensitive. My balance isn't quite right either. Has anyone ever tried on of though vibration exercise machines to help with symptoms? would it even help? My physio doc said low impact exercise would help with the fatigue.
Kim replied on Permalink
Hi Sam, I am still making progress almost two years after my TBI from a car wreck. I had a great doc right off the bat (I have yet to find a Neurologist who knows anything about TBI). I could barely move my body for several months other than to eat and walk my dog. All speech was slow and slurred. She had me on a schedule that was broken down to every two hours, I had to take a 20 minute "brain break"....this meant lying down in dark quiet room with eyes closed. I did every single thing at the same time every day. She had me start exercising by walking only five minutes to start and even then, I set my timer for 2-1/2 minutes and had to rest, then walk back home.
All of this to say that fatigue is the boss. It is nothing like being sick or tired and pushing your way through. If you push TBI fatigue, a person could end up back in bed for days. Then start over with the routine. Being patient and realizing that you are taking care of yourself by allowing your brain to heal in the best way it can and hard as it may be, on its own time. Take those scheduled breaks and see if it will stem the huge wave of fatigue from hitting. Best wishes.
Mark replied on Permalink
I've had a mild TBI since April '18. I actually bought a vibrating plate exercise machine last month. I absolutely would not recommend it for people with TBI. All the shaking traveled up my spine and I ended up relapsing (my TBI suddenly got worse after having recovered). The only two things I've discovered that help are CDP Choline, and mindfulness of the body (basically, getting out of my own head and back into my body) and practices that support mindfulness of the body, like tai chi and mild/moderate physical exercise (non-bouncy).
tompaul replied on Permalink
Frank replied on Permalink
Been out of work for 8 months due to TBI...I have apparently suffered multiple undiagnosed concussions and the last one did it. Didn't have any symptoms for about 2 months, besides a wicked headache and then the other symptoms hit me like a truck! I have all of the symptoms mentioned in the article and more. The worst part is the feeling that other people think you are making it all up because the symptoms are not "visible". To the point where sometimes I'm thinking it too...and then I try to move quicker than I should and realize it is still there! I'm glad I am not the only one out there going through this. Haven't started treatment yet as the doctors took forever to figure out what this was, looking forward to it though and hopefully finding some relief
adam replied on Permalink
You certainly are not the only one. I suffered a similar injury to the face two years ago. Unknowing the effects it would eventually have, I just carried on as usual. Some days soon after, my symptoms developed and worsened to the point where I thought I was losing my mind. The diagnoses as you said before can't be determined by a test. So in the event of expressing my concerns to my dr, he diagnosed me with anxiety and clinical depression. It wasn't till I was I recalled the injury did we piece it together. By then weeks had gone by and was suffering immensely. My mind had stopped functioning; I began mixing up my words, stumbling my sentences. I no longer was able to follow conversations. Incoming memories were dissolving in my mind. My depth perception was effected, as I found my self bumping into things. It takes me so much time to collect a thought that when I finally do, I'm just so frustrated, I let it go. And to endure each day in darkness is terrible. I can't imagine how people with even worse symptoms manage to exist. Because my inactive mind has deterred my ability and drive to exist. I only exist currently on a physical realm, but mentally I'm lost, and in a constant fear that ill never return to the person I was, The constant obsession of my injury which plays continuously in my head, pollutes me. And at times is the only reachable thought I can consume from memory. It's ironic how the most obtainable thought is one which delivers the memory of my issues. I guess that's just life's cruel little joke.
Martha replied on Permalink
6 months after falling and hitting my head on concrete, I have improved thanks to Speech Therapy. I have also been to physical and occupational Therapies, although they have not been as effective. What made me think I would one day get my brain back was an app called “Constant Therapy” that my Speech Therapist recommended. I worked on it every day for 3 months and she confirmed with testing that it worked! I could also tell I was better. I hope you’ll give it a try. Best wishes!
Kessie replied on Permalink
I’ve never taken time to post on a site but this comment got me. I really understand how you feel existing physically due to this condition and how it can effect our lives. Please just know we have to keep going! One foot in front of the other that’s all. I found meditations listening to them in the dark helped. I actually recorded myself talking about healing and listened to it, I felt crazy. I’m 7 months into symptoms and things slowly get better keep goi g
Jim replied on Permalink
Thank you all so much, I am a month into recovery from a motorcycle accident, Totaled bike, hit face first into gas tank putting a big dent in tank, helmet cut my face but surely saved my life. My symptoms are minor, loss of balance, hearing pulses, ringing ears but Dr prescribed acetaminophen, I sleep well with melatonin, thank God but so happy to hear I'm not alone. God bless you all.
Leanne Cox replied on Permalink
Oh god yes. That's exactly what I'm experiencing, headache from the start but took a few weeks to notice the other symptoms. Its worse when it feels like doctors don't believe you but they have no idea. One opthamologist told me my vision was a bit off because I was just getting old despite it being perfect before the injury then it was like someone flicked a switch. Then a behavioural optometrist said no you have perfect vision but you have a horizontal misalignment caused by the blow. Damn idiot is supposed to be a specialist if I can find and understand these symptoms here why can't he. Also people at work don't care as you say they can't see it. I want the lights off but I get overridden by the majority. Then I'm in agony, mood plummets and I tell you I feel like just giving up.
Meredith replied on Permalink
Even being the one having the symptoms, I can't shake the feeling that my TBI isn't "real" or "worthy" because the physical damage was so minimal (barely broke the skin), I never even lost consciousness at all, and I made mistakes (even knowing better) in my initial healing, which was only four months ago anyway.
Being around people who don't understand TBI -- who does, really? -- and all but roll their eyes when we talk doesn't help my misconception. It's a common one, eh? Thank God and Physics and whoever you pray to, too, that my husband is so extraordinarily compassionate and understanding. Even so, I could really go for a conversation with someone else in my specific situation. Such a personal experience as TBI recovery sure can get ...so very... lonely.
Even so, here I am and I'm pretty convinced the light and sound sensitivity will be my final frontiers of healing. I just have to keep the faith that there will be a "final," ever. I have to, because whenever I forget to have faith, right down I go into the spiral of frustration and self-recrimination. Happened just two nights ago, and then I found this page. Thank you all for helping me get back to faith and hope.
Take it easy, and keep the faith. This is my new mantra.
Cathy Martin replied on Permalink
I know exactly how you feel! I am going through the same thing!
Scott replied on Permalink
Ann replied on Permalink
Hi Scott, I recently had a bicycle accident too and now suffering from TBI. I just wanted to say your comment is very positive and inspiring, thank you. I hope your words of wisdom stay with me during my recovery.
Michael replied on Permalink
So very Positive re: your recovery!
I was also in a bicycle accident back in 9/16...side swiped, not wearing a helmet, slid into the back of the car that hit me. Diagnosed months later w/a mild TBI.
Im older (now 66) as was the old lady that struck me, but no excuses - should have worn a helmet!
Unfortunately my condition has improved little, the medical community is largely clueless re:head injuries, but your words were positive for me to read - Thank You!
Karen replied on Permalink
I understand your need to talk to someone going thru this. I went shopping with my mom on Black Friday. Trying to explain my noise sensitivity and my mom seeing what happens is different.We were at the cash register and almost done when a store alarm started going off. My hands automatically went to cover my ears. This shocked both my mom and the employee.
My injury happened in July 2018.
Shelly replied on Permalink
I had injury end of Sept 2018, head hit corner of chair had buzzing sound, still have headaches, dizziness nausea , especially when concentrating, or movements, feel frustrated , people around dont understand , ppl shd be educated by professionals on concussion, cant handle noise, crowds, light, cant handle conversations, slowed me down in life, going for treatment, hope i get better soon, its 3 mths now still struggling.. mild concussion, dont know when and how dizziness will go away w nausea. Cant handle skytrain rides . Its crazy.
Kim replied on Permalink
I had a similar injury in September of 2018 also. I’m experiencing all the same symptoms. I’m currently on disability and doing vision and vestibular therapy and have to take an anxiety depression medication. I also just saw a neurologist and he is doing several tests including EEG, MRI and a few other tests. I feel very frustrated and hope this goes away soon.
donna gaumond replied on Permalink
I had a car accident I was hit by a bonanza but broadside when you was 16 years old bath passenger died. I was in a coma for 11 days but I remember my father telling me about o squeeze his has, I remember my mom asking he blood from my hair and Man other small memories. I am fine today. Have hearing loss in both ears from broken middle ear bones, neck pain, and leg pain. I handle all pain throu exercise. I have a masters degree and I’m a teacher. Do all coma patient have I near death experience? I did not. I am curious about what kids H.G. of brain injury I had. I had a hole in my head drilled to relieve pressure and had seizures. No one looking or speaking out to me would I know hat I’ve been th ough. I am very fortunate to recover. Why don’t I have more effects?
Anonymous replied on Permalink
I had a CVST (Cerebral Venous Sinus Thrombosis) 6 years ago and have suffered from severe ringing in the ears since. All of my doctors have been baffled by this as I never suffered from this before the clot was discovered. Nothing I have done works to mask the ringing. If anyone can help with this, I would appreciate it.
Carol replied on Permalink
I am TBI survivor trying to figure out my issues after 8 years
Meredith replied on Permalink
Carol, for what it's worth, know that your simple comment made a huge difference for me. I'm a mere four and a half months into figuring out how to live life now and was feeling very down about my progress and mistakes I initially made, and hearing that it's a figuring out and it takes time gave me a lot of hope. Thank you, a lot.
Steve replied on Permalink
I may have ABi. Or tbi. After your brain injury did you notice that you had a major sensitivity to caffeine? Did you also notice that you were getting your words and sentences all mixed up. I’m going through this right now
Kristin replied on Permalink
Yes. I have moderate TBI and I was caffine sensitive. At first, all I could drink was decaf. With caffine, CRAZINESS! Although, I am able to drink a coffee after about 10 years! Then for my 2nd cup, I will drink decaf! I love coffee!
Krista Poliniak replied on Permalink
Have you read this survival guide??
Taylor Smith replied on Permalink
I actually suffer from Hyperacusis (hypersensitivity to sound) unrelated to my concussion. Let me tell you it is awful. Especially when I lived with it when it was very severe for nearly 7 months. It was related to a hearing injury a while back. Its typically from Chronic loud noise exposure. That's how I got mine.
It is not even nearly close related to the eardrum. The eardrum is just a sliver of skin protecting contaminants from your middle ear. Its connected to the 3 bones in your ear that contracts when you hear loud noises. Your ears pop when you swallow due to the eardrums connections to the Estachian tubes. Which regulate pressure to the middle ear. Its a rare condition. It has believed to either be related to an aggravated auditory nerve or the hearing organ (the cochlea) itself.
I am very fortunate to not have any setbacks in my Hypercausis department once my concussion. I just wondered onto this page because I'm still recovering and I have awful reading difficulty at the moment. I would highly recommend anyone to check out Hyperacusis Network Forum. Someone may be able to help you there. When it comes to this. Every cause to the problem is different. I've met people who got hypersensitivity of ototoxic drugs, ear infections (middle and inner), loud noise, a blow to the head, and one even having theirs related to Epilepsy. Everyone is different. Therefore, your healing is different.
Karen replied on Permalink
Taylor, I just happened to stumble on your post here. I also have hyperacusis--three years now, due to work injury. I am hard of hearing, and wore hearing aids to do my job as a video relay interpreter (sign language) when someone on other side of call yelled comment into microphone of desktop conference phone. Yes, the sound came in via my headset that connects directly with my hearing aids, so the sound was presented immediately next to my eardrums. I felt like I had a concussion for five days. Miserable for months. Still struggling. I can't wear my hearing aids, so understanding people around me is even harder and more exhausting. Anyways, I am trying to find info where such a focused sound blast CAN cause a tbi. Plenty of examples via military, but usually includes an explosive positive/negative blast as well as the sound blast. Anyways my point of responding--new research paper (Sept 2018) by Nunez et al, "An integrative model accounting for the Symptom Cluster Triggered after an acoustic shock." It is the best explanation to date that it's "not all in our head" --yet is!
Mindy replied on Permalink
So this is going to sound crazy, but I've been having all the symptoms described here, but I haven't had an injury. The doctors have been totally baffled, but I finally landed in the hands of a physical therapist who is helping with my vision and vestibular issues. She's the one who suggested that I might have a brain injury since I have all of these symptoms of one. Has anyone ever heard of spontaneous brain injury? Just wondering if this is really what is going on since every article I read about brain injury seems to fit with what I'm experiencing!