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!

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

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

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.

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?

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.

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.

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.

Hi my car accident was in 2008. I suffer from the same things following the accident. It was many months of self rehab before it subsided. I am not saying that you will overcome this right away or it will resolve, only time will tell. I hope that you will be able to get over these things. If you want to talk add me to chat. Kimmy

[I]My son's worst symptom was the vertigo. He couldn't stand by himself with swaying wildly.

I posted the following in another place on this board, but wanted to post in in your thread to ensure that you would see it. I encourage you to check into a Nucca chiropractor. You can google the subject and find alot of info. My best to you!

This board is such a tremendous support and source of valuable information!! Thank you all!

My son was suffering from unexplained (according to the neurologist), severe vertigo and had blurred vision. He could not read due to the letters on a page being disorganized and "jumping" around the page. He had a constant headache and cognitive issues. Despite having slammed his head onto turf in a soccer incident, the neurologist wrote off his injury claiming that it was "all in his head"!

I researched upper cervical chiropractors after it was suggested by a couple of people on this board. I found a NUCCA chiropractor who immediately demonstrated real concern and compassion for my son. (Incredibly appreciated after what we experienced at the neurologist's office.) Approximately, an hour after the first realignment (xrays and physical tests indicated a relatively significant misalignment of the skull/first vertebrae) my son's blurred vision cleared. He was treated every day for five days and we saw remarkable improvement that very first week. The chiropractor even came in to the office on his day off to treat my son. (We definately did not see that kind of concern from the medical community.) It is now two weeks after we started with the chiropractor and my son is symptom-free with the exception of a few cognitive issues!!

The chiropractor explained how a misalignment of the cervical vertebrae can put pressure on the brainstem resulting in all kinds of neurological issues.

Despite the mechanism of injury, never once did anyone in the medical community suggest that there could have been any neck trauma that should be evaluated. In fact, one MD discouraged me from even consulting a chiropractor.

I truly believe that it was the chiropractor's intervention, along with time, that is bringing my son back to complete health.
Thank you all!!!

BeccaP: Great to hear from you! So glad you found the fistula instead of the bone problem...seems like a much easier fix. Good luck with your next blood injection - hope the fix "sticks" this time! Answers are SWEET!

My daughter is two 1/2 weeks into vision therapy. Very compassionate doctor. It's no walk in the park, though. I would definately figure out your inner ear issues before you try vision therapy. She gets super nauseated and lightheaded...probably not something you wish to invite at this point.

As an alternative, perhaps a vision therapist could prescribe you prism and/or reading glasses that might give you some relief from vision symptoms until you are sufficiently recovered from the fistula tear to try therapy? IDK just an idea that might bring some relief.

All the best! Try to enjoy your summer! I'll tell you what I tell my daughter, "I know your feeling better...almost back to normal...but just be kind to yourself...don't over-do it...rest...hydrate...eat..." Do you feel sufficiently nagged?