I was lucky enough to be living in NZ (land of ACC) when I hit my head. That was 9+ months ago and I was quickly diagnosed with a "mild concussion" (despite 30+ minutes loss of consciousness) and sent home. I believed I'd be back to normal in a week or so. Then I believed I'd be back to normal in about a month. Then I hoped I'd be back to normal within a few months. Now, I don't know what to think or believe. Hope is hard to come by.

I don't even remember much of that first week, or several weeks following. Even now, just getting through the day is a challenge, with only dreamlike memory of events and awareness of my surroundings.

I'm sure you can all correctly guess at about half of the symptoms I've been experiencing, and the other half you'd never guess. But I suppose that's all part of a concussion. Of course, if it persists more than 9+ months then it's NOT "just a mild concussion".

Over the last few months I've seen "concussion specialists" and a neurologist, courtesy of ACC. They keep telling me that I'm just manifesting the symptoms through depression, anxiety and PTSD. Nothing new here, huh? At least the neurologist could have acted like I wasn't crazy. Almost everything I told him, his response was a cross between disbelief, ridicule, challenges and insults.

So now I've got two problems: First is a medical problem, which is that I'm all messed up. Second is an administrative problem, which is that ACC doesn't recognize "all messed up" as a medical diagnosis.

I'm concerned that they're about to tell me "get a job, hippy" at which point my inability to function normally, or even stay awake, will really cause me to suffer depression and anxiety while I wait for the bank to auction off my house.

I've got an appointment with an ENT. I've recently learned that some of my more bizarre symptoms are actually fairly textbook for a certain ear injury. Before learning about that I was starting to believe that I was going crazy. As a practical matter, I'd accept a diagnosis of depression or anxiety (as a result of the injury, and keeping me from performing normal activities) if it will keep a roof over my head while I try to figure this out and get better. I don't want to sound like a conspiracy theorist, but it almost seems like ACC (either through malice or incompetence) has sent me to every test and specialist that can "prove" nothing is wrong.

Is there any kind of scan or test that can "prove" that I'm actually suffering from a concussion? I've had MRI and CT, both of which are, of course, normal (which is interpreted by ACC as "nothing wrong"). I've read a little bit about fMRI and DTI being able to demonstrate whether or not a brain is suffering a concussion, and if I have to go out of pocket to "prove" it, I'll do it. But would that even help prove anything? Is there anything I can do to prove that this isn't "just in my head"?

Thanks...

not crazy,

Sorry to hear of your struggles. Welcome to the club.

First, it would help if you told us about your normal symptoms and the 'you wont believe these' symptoms. I doubt you have anything new. The range of symptoms from one person to the next is huge. But with the many PCS experiences represented here, you are likely not unusual.

A little information about your previous lifestyle versus now may be of benefit.

DTI and fMRI can both be helpful but NOT without the direction of a believer in prolonged concussion symptoms. It appears you have been seen by doctors who do not believe your level of concussion will leave lasting symptoms. Wow. Thirty minute LOC is not to be ignored. The 'mild' diagnosis is more due to your symptoms shortly after the event while conscious.
Have you had a neuro-psychological assessment? This will be a good indicator of your struggles. There are validity tests within a good neuro-psych battery to show if you are faking.

Lucy/Lynnlee, are you still watching this board. Can you give any direction in New Zealand?

If you can PM (Private Message) me with your email address, I can send you the doc file to the TBI Survival Guide. It may be of help.

Let us know how you are doing and we'll try to help.

My best to you.

at least you are not a middle aged female... they tend to add early menopause to the depression and anxiety diagnosis...

Not a complete list, but "normal" symptoms: headaches, dizziness, cognitive fatigue (aka brain fog), physical fatigue, memory problems, tinnitus. Unusual symptoms: hallucinations, sound-induced dizziness, hearing things on the wrong side, face blindness, slowed metabolism beyond what can be accounted for by increased sleep and decreased activity.

I haven't noticed anything unusual with smell or taste, no blurred vision and my mood seems stable and normal (with only a few exceptions; episodes I would describe as a "sense of doom").

I now know that one type of hallucination I've been experiencing is oscillopsia, and it's common in cases of SCDS. But my VEMP test was normal. I also now understand that the sound-induced dizziness may by Tullio Syndrome, again consistent with SCDS, and also odd that my VEMP test was normal. Together, those are two of the biggest things leading me to understand that I'm not crazy (I couldn't have made up two "crazy" symptoms that point to an ear injury), and that I need to get to an ear surgeon for further assessment.

Edit: There may also a third "crazy" symptom of SCDS that I may have experienced: Autophony. There was about a week or so that I had to talk very quietly because my own voice produced a very unpleasant sensation that my head was resonating. Other sounds, and even other people talking loudly, didn't bother me so much.

One of the visual hallucinations that I've had a few times, and can't find medical documentation of, is while looking at something white or light colored the object seems to be changing colors.

A few times I had vivid hallucinations (people or events that weren't real) but I can attribute that to fatigue. I've had similar experiences entirely due to sleep deprivation when I was younger.

Working an office job, using a bicycle as a primary means of transportation (which included a daily commute). About once a month or so I'd go out dancing all night (no alcohol or other drugs). Normal sleep was 6 hours per night. I'm a part-time dad and on my weekends we'd almost always do something fun, often outdoors and active.

The "mild concussion" was diagnosed by an ER doc who had me touch my nose, his fingers, etc. It was about a week later that I put together enough clues to figure out that I had 30+ minutes LOC. Prior to that, duration of LOC was unknown. Except for my GP (who's great) all of the "experts" dismiss the 30 minute LOC as 30 minutes of amnesia; which I am certain is not the case. As far as the "experts" have acknowledged I had a very brief LOC since I don't remember falling down or getting up. Everything else is just amnesia, they say.

I've done a short version of a test that was a combination of puzzles and memory tests. I heard there's a long version that takes a few hours, but I haven't done that. IIRC I scored "above average" on the short test. So the "experts" can look at that and say I'm fine... ignoring that I was working as a self-taught engineer without a university degree, that I'm a published author and musician, that I spoke regularly at computer security conferences, etc. The way I see it, "above average" is diminished cognitive capacity for me. I didn't quite realize it at the time, but I did a very short test at the neurologist's office, and his secretary, who administered the test, was "helping" me get some of the answers right. In hindsight, that contributes to my lack of respect for that *&#^&*&@#$%.

I'm still new and I don't yet have access to the PM button. Feel free to PM me and I should be able to reply.

Thanks.

Sometimes rest seems to help. Sometimes I can "do stuff" without getting wiped out.

Top of my list of things that suck:
* My five-year-old has now spent almost 20% of his life knowing me as the guy who just sleeps all the time
* I can't ride my bike
* I can't go out dancing

Top of my list of things I'm lucky for:
* I'm lucky to be alive. I easily could have died that day. I'm also lucky that I won't be spending the rest of my life watching cartoons while someone feeds me and changes my diapers.
* I'm lucky that for the last 9+ months ACC has been sending me to doctors and helping me to not lose my house
* I'm lucky for some of the people that I've met who are helping me get a proper diagnosis, and that should probably include this place

I'm mid-thirties. Since most of the "experts" I've been sent to are guys, I'm sure they'd say I'm just unstable, constantly going from post-menstrual, to pre-menstrual to menstrual. For females, no age group is safe from being diagnosed as "lunatic" (if you understand the origins of the word) by doctors who don't know or don't care.

In the short term, it sure sounds like you have serious vestibular/inner ear problems. What kind of prognosis do the doctors give you regarding these issues?

Until these are improved, The other symptoms will be hard to work with.

Good luck with your hearing and balance therapy. I have luckily never had to deal with this. My closest problem is losing the ability to go deep sea fishing without getting sea sick. I never had this problem before my 12th concussion. It totally changed how i can tolerate the rocking motion. Now, I spend too much time "barking at the seals."

Officially, according to the "experts": I don't have any physical problems, or any problems related to concussion or post-concussion. I'm just suffering from anxiety, depression, PTSD, and/or hypervigilance.

I also just got a copy of the neurologist's report, and he cites my description of oscillopsia, but doesn't mention it by name. There's also no mention of autophony. Did I mention that I have no respect for this idiot?

Hopefully the ENT can make sense of it. Hopefully it can be fixed.

Dear Poster,
Why don't you try a good general practitioner don't tell him about the experts and just tell him what you know from experience, also tell him about the CT and MRI. I have had several docs of that caliber tell me "Yup you have PCS alright." Now, they go on to do nothing for me except write a letter saying that weird stuff is happening to me that I can use at school or work, but otherwise they don't help. But it seems that if you are trying to keep your roof over your head this might be the first step. Then, like me you can travel around to many more docs looking for how to fix it.
I had about a minute LOC and then 10 hours of permanent amnesia, so I can kind of relate. It is a good thing that I had a bunch of close friends who I trust with me or it would be kind of scary because I still can't remember those 10 hours and only know about them from what my friends have said.
Well, Good Luck!!!
Margarite

I've got a GP who is great (mostly because he doesn't pretend to be an expert and isn't afraid to say "I don't know"), but I'm not sure that PCS is recognized by ACC, and I'm not sure if they'll accept a diagnosis from a GP that contradicts their "expert". But I will look into it.

not crazy,

Avoid using medical terms when you talk to doctors. They do not like patients self diagnosis. The current term for this is cyber-condriacs. They think you found your diagnosis on the internet. This alienates them quickly.

Do not try to tell the doctor anything but your symptoms, If you can ask questions like: What can cause me to feel ..... ?
Or, When I do ....such and such.... I react to it by .... What does this mean?

The best question is "Help me understand this?" It empowers the doctors.

You may have already hit the critical mass of doctors entering "somatoform" or such in your medical records.

Tell the doctors what you have done to try to minimize your symptoms such as ... I don't do .... anymore because it makes me feel ......

If you can bring a witness with you who can say when he / she observes like ... personality changes, over-reacting, appearing confused, lack of following verbal instructions, etc.

A rehab specialist may be helpful. They are sometimes labels a Rehab and Physical Medicine specialists.

Search this forum for posts from Lucy (Lynlee). She lives in NZ and may have posted some of her experiences that you can benefit from. She knows her stuff. She is a long time sufferer of PCS and has struggled to get help with the NZ system.

She has a post at mid-page of this link; http://neurotalk.psychcentral.com/sh...all#post488888

Try clicking on her screen name under "view all post by this poster."

Keep yourself relaxed. If you are overvigilant in addition to serious PCS symptoms, the doctors will focus on the over-vigilant as the primary issue.

My best to you.