Sorry to hear about your problem, the dizziness, for me at least and for most people that I have read about, goes away after about 9 months, if not before. For me the dizziness ended about five months after my second concussion (which was two weeks after my first). It came back at 10 months because I went sledding and jostled my head a lot doing that. It took almost five full months to subside, from all the time to just when I exercise, again. Now, during the past two weeks I have been feeling so dizzy that I almost fall over at just really random times. It is strange and sometimes scary. I have not had a single day since March 21, 2009 without a headache. Most of the time it starts as soon as I go outside or if I put on my glasses instead of my contacts or if I eat too much or too little of something. Noise bothers me, not so much the high pitched stuff, but more the amount or loudness of things. I am grumpy all the time because of the pain. The biggest problem is that it isn't constant, but rather ebbs and flows getting worse one day or one week than before. I have seen 6 docs, had 2 CT scans, 1 MRI, and the only info I got was to not take pain killers, not to hit my head again or I could die, and that I would just have to live with it until it went away. Well, I have through all sorts of weird accidents hit my head about 8 times in the year following the first concussion. The first one I fell off a horse and still cannot remember the ten hours surrounding the accident. I was told that I went to the hospital and went to dinner and asked the same questions again and again every five minutes. I even forgot that my uncle had died two years previous. During the three months following the accident I managed to stay in college only because my friends were kind enough to read my homework to me when my headaches were so bad that I couldn't open my eyes. My grades went down to where they had never been in my life, but I passed.
So, anyways,
Because I was getting no answers and because the symptoms were kind of scaring me, I started doing research. I have read for countless hours online and like my doctors there isn't much info out there. The most promising thing that I have found is a treatment where PCS patients slowly increase their physical and mental activities, and when I say slowly I mean very almost excruciatingly slow progress. This is as of yet unproven, but I am trying to work out a plan on my own to do this, because I cannot afford a trainer.
The biggest things are first get a CT to make sure that nothing can be done by doctors for you. Do not use meds they make the headaches worse and hide where you really are on the road to health. Keep living life, but don't hit your head again. Try to spend a little time each day on mental and physical activities.
This is from a non-medical expert, but someone who has spent hours and hours studying this.
Good luck with your journeys!
Margarite

Margarite,

I am surprised that someone has told you that pain meds will make a concussion worse. I have never heard anything like this and I have been researching concussion for more than 10 years. I have bookshelves full of information on mTBI and concussion. I have been aware of concussion issues and the lack of good medical help for concussion since 1971 when I developed a seizure disorder from my concussions.

I take aspirin every morning for arthritis and Tylenol for my head aches.

Amitriptyline is commonly prescribed at small doses (10mgs) with success for head aches from PCS. Ibuprofen is commonly suggested for PCS head aches but should not be taken in conjunction with an SSRI or SNRI.

I currently take a maximum dose of paroxetine for some repetitive thought problems brought on by my concussions. I also take gabapentin to help my body relax so I can sleep. It I don't take the gabapentin, I have a difficulty falling asleep and when I do, I will likely start body twitches that will wake up my wife and sometimes me. Each person's brain will likely respond differently to medications.

The greatest value comes from good nutrition such as B vitamins (B-6 and B-12 are the most important), D3, Omega 3's, folic acid, minimal caffeine and other stimulants, and a good dose of anti-oxidants (E, C, etc.)

Nutrition therapy needs to be a lifestyle. It takes a while to get the improvements but the setbacks can come much more quickly if you stop taking them. I was pointed to nutrition therapy by an M.D. back in 1982. My wife can tell if I stop with my regimen by changes in my moods.

There are only a few doctors in the US who have a good understanding of concussion. Their common understanding is that concussion is wrongly denied as a diagnosis by far too many doctors and that we still have a serious lack of understanding that leaves patients in a dilemma.

The most common false belief is that most concussions will heal completely. They never do. Research has proved this statement. Patients just stop complaining because doctors tend to dismiss their complaints. Just because the patient stops complaining does not mean they have fully recovered.

There is probably more concussion knowledge represented on this forum than at the best hospitals. Combined, we have probably experienced every problem that concussion can cause.

[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?

I've been off the board for quite a while, had to travel and was pretty overwhelmed with life and couldn't handle anything extra, I'm sure many of you can relate. I wanted to give an update on the ear related issues. I had a second blood patch for the perilymph fistula. It helped with the symptoms but again only lasted a couple of weeks and came loose. I was out of the country and had to wait until last week to try it again. I had another patch on Thursday. The ear doc said they may not be sticking (my non-technical term) because my injury was too old and may have scarred around the edges. I didn't see him until 8 months after the injury. So we'll see if this one lasts, if not, I will schedule the outpatient surgery with him.

The relief from the ear symptoms is great, but also a little depressing when I realize that I still have a fair amount of brain stuff going on. Mostly in resolving the ear stuff I'm hoping to be able to sing, talk and laugh again without dizziness, nausea and eye blurring (Tullio's phenomen-I want it to be GONE!).

I'm a month past the one year mark and am attempting to come to terms with the fact that some of this may be a good as it gets. I am mostly functional, just not the same as I used to be, lots slower mentally and physically and lower capacity overall. I still get headaches but they aren't as bad as they used to be. Overall, when I look at where I was a year ago, my improvement is dramatic, I guess I just have to keep trying and be patient. Gotta keep positive and hoping, otherwise it is too easy to despair and have a big pity party. ;-)

Hi Becca, glad to hear you're remaining positive and you have been making at least some progress. Accepting we're different to how we once were is a must but accepting too much is not good, because it's what I did too early and I never searched for good medical help as I thought this was it.

From our previous discussions in this thread it seems like our ear problems are very similar, and since only one of my ears, which happens to be on the side I took the impact, gives me pain and strange sensations, maybe I too have physical damage in there. I always put my ear issues down to the brain not processing sound properly, since I have sound sensitivity in both ears I just accepted it without getting it checked out. In one ear though there's more than that, and it's been a changing state of symptoms. In the past several months I realised that just touching that side of my face causes my inner ear to flutter, if that makes sense. On some occasions I've also felt air escaping through it when breathing, and there has been some pain on the odd occasion. 20 months post injury and considering what you've been told, getting help now may be futile but I think I should try anyway.

I accepted too much too early and let life get in the way of seeking proper medical attention. I'm glad you didn't wait so long and hope you find a solution for your ear troubles

Hi Bob,

I appreciate your post. It is hard to figure out the line between accepting too much or chasing after rainbows! ;-) It is not easy to find good docs who really care about helping you get better. I still have sound sensitivity in both ears but it is different than the sounds that cause dizziness and is getting better with time. I've felt the "flutter" or something like that also, but only in the one ear and it doesn't seem to be related to touching my face, more to sound.

If you do have ear damage, it isn't too late to get help for it. A good doc will help you figure it out. If you have something similar to me, the non-surgical blood patch is what didn't stick, it is most effective when administered early after the injury (my doctor said almost 100% effective). There is an outpatient surgery that will be the next stop for me, I don't think this third attempt worked, I only felt better while my ear was still full, it's all drained out now and the symptoms are back.

From all the reading I've done, the surgery has a decent success rate, even if the injury is old. They graft tissue over the oval and round windows inside your ear. If you haven't before, check out the info on this website http://www.dizziness-and-balance.com.../posttrau.html. This site was helpful to me. If you do decide to see an ear doc, do your homework first. The first one I saw sent me back to the neurologist with the opinion my symptoms were from brain stuff. Luckily, the neuro didn't agree and was happy to give me a second referral, I did a lot of research before I made the second appt. The second doctor knew exactly what to test for based on my symptoms. It seems like the doctors at universities are more current.

It surely won't hurt anything to get your ear checked out and maybe it will be helpful.

Best wishes,

Becca

My diziness would peak with sitting down, especially in the morning.

Thankfully, it has seemed to fade over the past month (I've had PCS for almost four). Headaches are still around, though.

Well, the third attempt at the blood patch didn't take so I made the plunge and had the surgery. I'm a little past the specified recovery period and am very pleased to report that it worked! I can sing, talk, listen to my husband's voice and other low tones without the vertigo. Now it's just the insta-headaches, if I'm too loud, I do still have some sound sensitivity in both ears, a brain thing not an ear thing. ;-) I am ultra paranoid about doing something to mess up the graft now.

The bad news, while the surgeon was in there he found signs of increased intracranial pressure which may explain why it didn't heal. So he put me on something to cut the fluid production while the graft was healing, sent me to a neuro-opthamologist to get my eyes checked (they looked okay but said the meds could be masking any problems so I have to go back a month or so after I stop the anti-fluid med). The neuro-optho ordered some MRI's to check things out, I'm waiting for that now. Then back to the neurologist, then who knows what?

The brain stuff is about the same as usual (sadly it hasn't changed much for the past 8 months), the neuro-optho thinks that most of my eye issues are from the brain injury which fits what the other docs have said. I still have some dizziness but it isn't the same as the vertigo I was having. I'm thankful for the improvement from the surgery, one piece at a time...I'll post more when I know more.

It has been 22 months since my concussion.. I mainly get light headed now when I have to use my brain for anything that requires concentrating. I don't feel like I am going to fall over at this point, but I do stumble from time to time if I get up from sitting too fast, or something..