[BeccaP]

I've had PCS for ~6 months, pretty typical array of symptoms from what I've read in many posts. I can see progress with many of the symptoms, except those relating to dizziness.

I am dizzy (feels like I'm a swaying tree in the wind) whenever I am around noise of any volume (if it is very soft it doesn't bother me), talk loudly, sing or laugh, when I move around, cough, sneeze, blow my nose, bend over, worsens if I do anything that gets my heart rate up (ridiculous things like going up stairs, whisking soup, walking up a hill). If I'm standing still, I sway slightly all the time, if I close my eyes the sway is more pronouced, same if it is dark. I am easily unbalanced. Nausea accompanies the dizziness. My eyes feel weird, heavy and my vision blurs a little in spurts when I feel dizzy. It goes away if it is quiet and I hold still/lay down.

Is this similar to what's happening with others? Could you describe your experiences with this aspect of PCS? How long did it last, what was it like for you? Thanks!

[Concussed Scientist]

Hi Becca,

I also have dizziness that accompanies the other symptoms of PCS. Like you I noticed that the dizziness did not seem to change when other symptoms made some improvements.

The dizziness that I have was never my worst symptom, not by a long way. I could say that it is the symptom that bothers me the least.

I do not have any problems with my vision fortunately so my vision keeps me balanced pretty well but if it is dark or if I shut my eyes then it is noticeable. Walking in a straight line is more difficult than it should be. My dizziness is generally associated with movement. If I am sitting still I feel completely stable. I don't have classical vertigo with the room spinning round.

One test of the vestibular system is Unterberger's Sign.
This involves walking on the spot with your hands clasped and out in front of you. You should be able to do this with eyes open. However, when you shut your eyes and keep walking on the spot you may notice that you rotate in one characteristic direction. This generally indicates the direction of the problem in your vestibular system. I rotate to the left. It is very reproducible.

Try it. Probably best to do it with someone else present to prevent you from bumping into things. Also, it has to be done without any way of orientation when you shut your eyes. So, no sound coming from any particular direction e.g. someone talking to you. Nothing that you can feel on the floor with your feet e.g. a slope. All those things will render the test useless because you will just follow the subconcious cues. But if done properly, I think that it is a good test of whether there is something wrong with your vestibular system.

CS

[pbob10]

I become dizzy with any extensive movement, excercising etc. Typically I'm not dizzy other than that. I do have brain fog though and I find it hard to differentiate between the two things, but since I don't usually feel unbalanced I'd say I'm not dizzy. Light headed sometimes though.

Blah, I don't know what it is

[PCSLearner]

Yesterday I was visiting with a friend who just got a new pair of bi-focal glasses. She said she didn't think the prescription was correct because when she wore them she felt dizzy, with the dizzy feeling lasting an hour or so after taking them off, nauseated, and she felt like it muddied her thinking. It was as though she was describing a PCS experience!

Just another justification for PCS patients to get extensive testing on their eyes. Not just 20/20 wall charts...I'm talking about extensive, what's up with your optic nerve, spend a day at an eye center, type testing.

[BeccaP]

Originally Posted by pbob10

I become dizzy with any extensive movement, excercising etc. Typically I'm not dizzy other than that. I do have brain fog though and I find it hard to differentiate between the two things, but since I don't usually feel unbalanced I'd say I'm not dizzy. Light headed sometimes though.

Blah, I don't know what it is

Amen! It is so hard to describe some of these crazy symptoms. Every day I get up hoping that I won't have them, but sure enough when I start moving around they're there. The dizziness is more intense and prevalent (for a couple of days) after I exercise (get my heart rate up for a period of time) or move a lot, pretty good dis-incentive, I'm not trying to exercise lately, I guess it can wait until things improve. How long since your injury?

[tangje]

Dizziness and nausea were my primary complaints after my injury. I was pretty much dizzy and nauseous every day for a year. Those symptoms have subsided now and are much less frequent. Unfortunately they have been replaced by near daily headaches which appear to be getting worse (medication overuse headaches perhaps?).

I found the dizziness very hard to describe as well. I was often feeling foggy and just "off". I tended to use the term lightheaded more as I thought that described the sensation more appropriately as dizzy seems to connote some sort of room spinning around you. During the initial months after my injury I definitely had more orthostatic challenges (feeling lightheaded when moving from a lying down or seated position to standing). At times I think I might have had some positional vertigo as I couldn't turn over in bed without getting dizzy and nauseous. I also found noise to be a real problem. Even the sound of water from a river could set off a dizzy and nauseous spell. My brain seemed to become hyper sensitive to stimui after the concussion.

[pbob10]

Originally Posted by BeccaP

Amen! It is so hard to describe some of these crazy symptoms. Every day I get up hoping that I won't have them, but sure enough when I start moving around they're there. The dizziness is more intense and prevalent (for a couple of days) after I exercise (get my heart rate up for a period of time) or move a lot, pretty good dis-incentive, I'm not trying to exercise lately, I guess it can wait until things improve. How long since your injury?

Yeah I pretty much can't do anything without getting dizzy. Several months after my concussion I was going swimming on a weekly basis for a while. One time I got out to my car and felt like I was spinning all over the place. I felt sick and had to sit there for a while until it subsided. No more excercise since then, which blows.

Originally Posted by tangje

Dizziness and nausea were my primary complaints after my injury. I was pretty much dizzy and nauseous every day for a year. Those symptoms have subsided now and are much less frequent. Unfortunately they have been replaced by near daily headaches which appear to be getting worse (medication overuse headaches perhaps?).

I found the dizziness very hard to describe as well. I was often feeling foggy and just "off". I tended to use the term lightheaded more as I thought that described the sensation more appropriately as dizzy seems to connote some sort of room spinning around you. During the initial months after my injury I definitely had more orthostatic challenges (feeling lightheaded when moving from a lying down or seated position to standing). At times I think I might have had some positional vertigo as I couldn't turn over in bed without getting dizzy and nauseous. I also found noise to be a real problem. Even the sound of water from a river could set off a dizzy and nauseous spell. My brain seemed to become hyper sensitive to stimui after the concussion.

My lightheadedness/fog or whatever it is was worse when it first started. I remember describing it like I'd had a couple of alcoholic drinks. At the time I was like what the hell is this and without knowing about PCS, dizziness etc that's what it seemed like. I call it fog or lightheadedness now, because I'm not dizzy like the unbalanced kind of dizzy (unless I excercise). I'm also sensitive to sound for what it's worth. Sharp noises like cutlery banging hurts my ears.

[BeccaP]

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!

[pbob10]

Originally Posted by BeccaP

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.

[melek]

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.