Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).


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Old 04-20-2010, 11:00 PM #1
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I've never been stoned, but from descriptions I've heard, it seems similar to the brain fog issue, for me the fog is worse when I feel the "dizziness" or the "my head is floating around a couple of feet above my body" feeling. So totally spacey, but also hypersentive to sound/stimuli. The fogginess seems to be gradually improving over time but the actual dizziness (I am very easily unbalanced and feel like I'm moving) doesn't seem to be lessening.

pbob-
How long since your injury? It really does stink to not be able to exercise! Your "dizzy issues" sound very similar to mine. I am also extremely sensitive to sound. I have an adorable, but very loud, 4 year old and feel sorry that I am constantly shushing him. Sitting next to my daughter when she clinks her flatware on her plate while eating is really unpleasant, hurts my ears, like anything else with any volume, but especially the sharper noises as you noted. Sadly, my husband's voice at normal volume is just at the right level to really bother me, if he needs to talk for long I put in earplugs (thankfully, it doesn't offend him), which I use liberally. I do the stuff I have to, and then spend the rest of the time in my room with the door closed. My eyes still do weird stuff (blur, harder to track moving items and follow the flow of text) but at least I can finally handle reading more complex structures! It was good thing we have lots of kid lit with big print and simple sentences around the house, it saved my sanity for the first few months of my self imposed isolation. In general, I tend to avoid being around people more than I have to, it is just too hard. I hope that will change, I isolate myself because I need to, but I don't like being isolated. Total catch-22. Oh well!
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Old 04-22-2010, 03:19 PM #2
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Originally Posted by BeccaP View Post
I've never been stoned, but from descriptions I've heard, it seems similar to the brain fog issue, for me the fog is worse when I feel the "dizziness" or the "my head is floating around a couple of feet above my body" feeling. So totally spacey, but also hypersentive to sound/stimuli. The fogginess seems to be gradually improving over time but the actual dizziness (I am very easily unbalanced and feel like I'm moving) doesn't seem to be lessening.

pbob-
How long since your injury? It really does stink to not be able to exercise! Your "dizzy issues" sound very similar to mine. I am also extremely sensitive to sound. I have an adorable, but very loud, 4 year old and feel sorry that I am constantly shushing him. Sitting next to my daughter when she clinks her flatware on her plate while eating is really unpleasant, hurts my ears, like anything else with any volume, but especially the sharper noises as you noted. Sadly, my husband's voice at normal volume is just at the right level to really bother me, if he needs to talk for long I put in earplugs (thankfully, it doesn't offend him), which I use liberally. I do the stuff I have to, and then spend the rest of the time in my room with the door closed. My eyes still do weird stuff (blur, harder to track moving items and follow the flow of text) but at least I can finally handle reading more complex structures! It was good thing we have lots of kid lit with big print and simple sentences around the house, it saved my sanity for the first few months of my self imposed isolation. In general, I tend to avoid being around people more than I have to, it is just too hard. I hope that will change, I isolate myself because I need to, but I don't like being isolated. Total catch-22. Oh well!
It's been about a year and a half since my injury, the sound sensitivity hasn't improved. I think the fog/lightheadedness was worst in the first several months but any improvement was short lived. Dizzyness has got worse if anything, but it's really hard to tell. I have kept a log, although there are gaps because writing about this stuff isn't exactly a great way to stay positive, but it's essential.

re sound sensitivity, do you have any tinnitus also? My ears have always felt different, just not right. I can't put it into words. Anyway, I noted some ringing when all this first started but it wasn't prominent enough for me to be sure and I think I just forgot about it. From then I think I may have noticed it/thought about it a few more times but I can't be sure, and recently I've noticed it again but this time it's stuck. It's mild, so I'm not sure if it's always been there and I'm just more concerned about it now or if it has actually developed/got worse. Oh and I'm considering getting some fitted ear plus to wear permanently, sharp sounds can cause some horrible pain.

One thing that did improve was fatigue. I was exhausted for months and it subsided at some point. In my log I have notes about having lots of dreams and then waking up exhausted in the morning, and basically always feeling tired.

So on the whole my recovery has not been too hopeful. I have never received any help for this and I will visit the doc at some point, I doubt I can get any help. Neurofeedback may be something I try if and when I can afford it. Light/sound sensitivity is on the list of things it can improve, apparently.
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Old 04-22-2010, 05:55 PM #3
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Sounds to me you are having vestibular issues. I have the same symptoms of most that have posted here. My Mild TBI was 10-05. I have been going to vestibular therapy since 2006, it helps, not cure the problem but with the therapy, I'm learning to when I'm unbalanced and how to work around it. As I said, it helps but does not cure.
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Old 04-23-2010, 09:57 PM #4
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Sounds to me you are having vestibular issues. I have the same symptoms of most that have posted here. My Mild TBI was 10-05. I have been going to vestibular therapy since 2006, it helps, not cure the problem but with the therapy, I'm learning to when I'm unbalanced and how to work around it. As I said, it helps but does not cure.
I think I am having vestibular issues as well. I spent a couple of months with a physical therapist working on vestibular rehab and balance and didn't see much improvement. She was a regular PT with no special vestibular rehab training. I went there because it was close to my house and it's hard to drive far. Maybe I should have made the 45 minute drive to a specialist. What types of things do they have you do? Do you feel unbalanced all the time or does it come and go?
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Old 02-09-2011, 11:53 AM #5
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Sounds to me you are having vestibular issues. I have the same symptoms of most that have posted here. My Mild TBI was 10-05. I have been going to vestibular therapy since 2006, it helps, not cure the problem but with the therapy, I'm learning to when I'm unbalanced and how to work around it. As I said, it helps but does not cure.
I saw a vestibular therapist last week after being sent by my neurologist. The therapist explained that she has to train my brain to not think left when I am going right. Doesn't make a lot of sense to me, but I will give it a try.
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Old 04-23-2010, 08:35 PM #6
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re sound sensitivity, do you have any tinnitus also? My ears have always felt different, just not right. I can't put it into words. Anyway, I noted some ringing when all this first started but it wasn't prominent enough for me to be sure and I think I just forgot about it. From then I think I may have noticed it/thought about it a few more times but I can't be sure, and recently I've noticed it again but this time it's stuck. It's mild, so I'm not sure if it's always been there and I'm just more concerned about it now or if it has actually developed/got worse. Oh and I'm considering getting some fitted ear plus to wear permanently, sharp sounds can cause some horrible pain.
Neurofeedback may be something I try if and when I can afford it. Light/sound sensitivity is on the list of things it can improve, apparently.
Yes, I have tinnitus also, it is constant low rushing and sporadic louder low tone ringing. I use ear plugs liberally but haven't looked into the fitted type, maybe I should. Neurofeedback sounds really interesting. The little bits of improvement I've noted make me so hungry for more, however I can get it. This forum is such a great source of information, so glad I found it.
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Old 04-23-2010, 09:20 PM #7
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I actually think the ringing has got worse, there's no way I wouldn't have noticed it before, it's blatantly obvious. That's worrying because perhaps all that being sensitive to sound stuff has caused further damage. If the brain can't tolerate as much sound and I've spent almost 18 months with no ear plugs, I might have been causing damage all that time
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Old 04-23-2010, 10:22 PM #8
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I actually think the ringing has got worse, there's no way I wouldn't have noticed it before, it's blatantly obvious. That's worrying because perhaps all that being sensitive to sound stuff has caused further damage. If the brain can't tolerate as much sound and I've spent almost 18 months with no ear plugs, I might have been causing damage all that time
Hopefully not. Don't beat yourself up about it, it stinks to wear earplugs all the time and you couldn't know/tell what direction this stuff will go. It's pretty tough to try to live in a bubble. I've heard of some homeopathic remedies that are supposed to help with tinnitus (something called Quietus, there's probably others) but don't have any experience with them. The constant rushing I hear is soft enough I only hear it when it's quiet around me, the other tinnitus comes and goes. You said it is constant for you and it's gotten louder? Can you get your hearing checked? I had mine checked a few weeks ago and it was in the normal ranges. If you can get it tested it might set your mind at ease that even if the ringing is driving you nuts, at least your hearing isn't damaged...
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Old 05-12-2010, 07:27 AM #9
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I think I have experienced the rushing you mentioned. Is it like a swooshing sound, almost like wind? Things tend to be worse all round for me when I'm tired, and recently when I went to bed I could hear something like that.

My ears feel like they have got a lot worse. There's this permanent droning sound/sensation that I have. Hard to describe. They have also felt blocked lately and sometimes swallowing caused a slight change in pressure in one or both ears. I've had a cold over the past week or so though so the pressure thing might be related to that.
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Old 05-16-2010, 08:44 PM #10
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I think I have experienced the rushing you mentioned. Is it like a swooshing sound, almost like wind? Things tend to be worse all round for me when I'm tired, and recently when I went to bed I could hear something like that.

My ears feel like they have got a lot worse. There's this permanent droning sound/sensation that I have. Hard to describe. They have also felt blocked lately and sometimes swallowing caused a slight change in pressure in one or both ears. I've had a cold over the past week or so though so the pressure thing might be related to that.
Have you had your ears/vestibular system checked?

I'm consulting with an neuro-otologist (sub specialty ENT) because they suspected that I have a perilymph fistula (small tear in inner ear causing perilymph fluid to leak). This doc said that my symptoms could also be caused by superior or posterior canal dehiscence (a bone problem). My issues are worse in my right ear. They did the CT scan to check for this and it was positive. Yuck. So the next thing is a test called a vestibular evoked myogenic potential or VEMP test. We'll see how this all turns out. The first ENT I saw was not very interested in my case and said my symptoms were all from the brain injury. My neurologist did not agree and gave me another referral. I think the first ENT didn't know his stuff very well, the second guy pinpointed the problem right away and knew what to test.

Evidently, both of these problems are somewhat rare, but do occur after head trauma in some people. I don't enjoy all the stress of appts and getting the referrals coordinated with insurance, but I am willing to pursue anything that will help things get better. I can't live in a no noise, no talking bubble. I am developing a love/hate relationship with earplugs. They are good because they block out noise coming in, but the sounds coming from inside (my voice) are much worse with them in, so that's not good. Thus I am happiest when I am in a quiet place and don't have to talk to anyone. Certain frequencies of sound are worse, sadly, my husband's voice is among them, bothers my ears making me dizzy and queasy. Not a good thing for communication. Thankfully, he is understanding and not offended when I reach for the earplugs!
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