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Originally Posted by Mark in Idaho
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.
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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.
Quote:
Originally Posted by Mark in Idaho
A little information about your previous lifestyle versus now may be of benefit.
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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.
Quote:
Originally Posted by Mark in Idaho
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.
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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.
Quote:
Originally Posted by Mark in Idaho
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.
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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 *&#^&*&@#$%.
Quote:
Originally Posted by Mark in Idaho
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.
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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.
Quote:
Originally Posted by Mark in Idaho
Let us know how you are doing and we'll try to help.
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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