In my opinion, I wouldn't worry about the cyberchondriac label. If you suspect your doctor thinks you are a cyberchondriac, you could always find research articles on the internet that prove what you are trying to get him/her to diagnose. Remember, most doctors don't know anything about head injuries and the problems they can create within our bodies. I actually had to do this a month ago when I wanted to get my hormones checked out. My doc thought I was completely nuts for wanting to do that until I brought in a medical article discussing the misdiagnosis of hormone deficiencies following brain injuries. And since that day, he has been nothing short of cooperative. He is even the one who suggested getting my progesterone levels checked and possibly beginning progesterone treatment.

The other thing you can do is fire that doctor and find another one. There are plenty of doctors out there who are more liberal than your average doctors, and you usually have to go through short trial and error period to find one. I had to do this as well a couple of years ago with my neurologist. At the time, the guy was one of the leading sports concussion specialists in the country. He even came up with the criteria for diagnosing mild to moderate concussions. I asked him during one of our appts. about neurofeedback and he told me it was nothing more than voodo magic and mumbo jumbo. I subsequently came back to him with solid research articles that proved its effectiveness, and the narrow minded "you know what" wouldn't even look at it. He told me he wasn't interested and that I was on my own with this. I fired him and found a neuropsychiatrist who did believe in neurofeedback. It's a good thing I did this because I never would have tried neurofeedback if I had stayed with him.

One thing to remember about doctors is that most of them are good at memorizing material and regurgitating it. They are not necessarily "intelligent" people from the aspect of being able to think critically and "outside the box." Another thing to keep in mind is that a lot of the get brainwashed in medical school to only treat symptoms and not the underlying cause - this is why so many neurologist prescribe anti depressants for pcs even though it has been demonstrated in studies to do more harm to an injured brain than good -. And, as everyone knows, the pharmaceuticalIn industry has a big play on this as well. Furthermore, our current medical system is set up so that a lot of them don't have the time nor the desire to try and treat every symptom of pcs. Plus, remember that neuroplasticity has only recently become accepted in the medical community. So, a lot of experienced doctors were trained in the old dogma that you can't treat a head injury.

In my journey to recovery, I found that I am my own advocate and the doctors are just a resource for me to get the therapy/medication I need. I strongly believe that we are in control and that we hire them to perform a service for us. Unfortunately, a lot of doctors think it is the other way around. Obviously there are times that they are more knowledgeable on a subject and we should defer to their expertise, but that doesn't mean they shouldn't work with us, instead of at us, to help us heal ourselves. But, that is just my opinion...

I was not using the term cybercondriac as your response implies. Many doctors will do much better with a suggestion rather than us giving them our self-diagnosis based on on-line research. Your current doc appears to be open to suggestion. He probably would have been more defensive had you said, "This is what is wrong with me and I want it treated this way."

I have been seen by many different egos and communicative styles. I was checking my blood glucose levels and one doctor got after me as "over doing it with self diagnosis." I responded that I was just trying to figure out if my blood glucose was a contributor to my sleepiness. I explained I was being overwhelmed with sleepiness at inappropriate times. This he understood.

A recent rehabilitation doctor called qEEG and neurofeedback 'soft science' as her polite way of calling it worthless. I discounted her opinion and no longer see her.

My current physician is very open to learning. He tends to jump to new research a bit fast but his openness to it is refreshing.

We need to be cautious as we present ourselves to doctors. If we are in a health care system where our records are available to all of our doctors, only one has to make a derogatory comment such as somatoform, prone to self diagnosis, or cybercondriac and it can taint our relationship with other doctors. The new changes to health care will attempt to get medical records so that they are easily available to all of our doctors. As such, we need to be cautious to avoid getting a bad label.

Kaiser Permanente in California is such an system. Patients who have thick files are labeled just by the thickness of their file. Add somatoform to the computerized record and you might as well stay home.

I would like to see a provision in health care reform that gives us a way to respond to being labeled somatoform, cybercondriac, uncooperative, etc. Just because I have a philosophical objection to a certain treatment does not make me uncooperative. But some doctors act like a god. Only their ideas have any merit.

This is especially a problem in the MTBI/PCS community.

Hey, some update.

A week and so after things got a little better. Head pain gone, I relaxed a bit, could get some sleep. Got an appointment with my doctor who prescribed me with PCS.

When I went to see the doctor, things were pretty alright. I told her what was up, she explained what happened as migraines and noticed a pattern that anytime I usually drive on bumpy roads it can occur. The temporary bad memory and such were also explained to be a side effect of migraines. But from the sounds of it she has a migraine issue and is the sort of doctor who then associates that with any sort of pain trouble the patient has. Or it could just be migraines and I'm judgemental (although this observation of mine is an old trait, and it coming back to me is sorta in a weird way a good sign, I guess) I dunno. The "popping" now seems to be more about the back of my neck and the dry icy weather seems to be the cause of my nose.

Asked about Nuerofeedback, she said it was a really good idea and I should ask my insurance if they'll cover it. She also said that in the meantime I can do some "brain exercise" and shown me a couple I can do with my girlfriend (although from the looks of it I could be doing this with Brain Age on my Nintendo DS.) Said I appeared to be getting better in just my behavior and in the following months I'll see more of an improvement. I don't know if that means anything much honestly and it could just be one of those "the power of suggestion" things.

She also said that in a couple months I should be able to "casually" drink. I don't know if I should take that with anything more than a grain of salt.

Took an MRI scan, I got a call saying that they didn't find any sort of blood or sign of brain damage. That's pretty good, I think! I hope that means that none of this is permanent and I don't have TBI.

Also I've been noticing a few signs that my memory may be returning. I listen to a bunch of radio shows, since the concussion I replay them over and over because I just couldn't remember. Including a radio series that stopped a while ago (because hey, if I can't remember any of it, it's new to me right?) I skimmed over that canceled radio series and discovered I was going through each one thinking "yeah, I remember this one" and that bored feeling like I know everything that's going to happen on the show. I listened to a new one just recently and I managed to retain most of what happened! I can also now randomly recall things. I can't retell things in perfect detail, but I've been getting better that remembering bigger things.

Went to the chiropractor again, the nerve pain has changed and now all the pain seems to be located right at the back of my neck. That's can improvement, I hope I can go back after this vacation and soon be rid of most of the pain!

Then, well, I went on an airplane. Probably a dumb move. But I had tickets and me and my girlfriend planned this out months ago so I had to go. Things were pretty alright until the near end, then it felt like for a couple seconds that someone knifed me in the skull, then I had that "wet" feeling again. Now I have small headaches that occur around at night. Nothing too bad yet, in fact that "breakthrough" with the radio show (the new episode, not the canceled ones) occurred after flight, but it hasn't been a week. I have to take the plane again as well.

Also that's interesting about hormone therapy because my **** is kinda broken now too and I would really like to fix that for romance's sake.

ALSO!

Energy drinks, can my cause damage to my brain? How about sugar substitutes?

Eddy,

You docs line "couple months I should be able to "casually" drink" sounds very suspect to me.

I have a similar problem with bumpy roads. I have discovered that I need to lean forward so that my shoulder blades are not touching the seat back while traversing bumps in the road. I cannot tolerate an ongoing bumpy road.

Bumpy roads will set me back to the 'dark ages.' Don't want to be there again.

The negative or normal MRI is to be expected.

As the old saying goes, "Doctor, it hurts when I do this." The doctor replies, "Stop doing that."

Eddy, your real life experience with cause and effect is far more valuable than the offhand comments of an M.D. Use your good sense to make changes to your behavior. The doc will never be adequate to this task.

Yeah, it's suspect to me too. But I'm a college student in a party college town (guess how I messed my head up?) and drinking is common and she probably pities my sober shrinking-social-circle butt.

I think she means I can have like a bottle of beer or something to that effect. "You'll have to treat one drink like it's ten." She said.

That's kinda disappointing about the MRI then. Well, I mean that it's pretty nice there aren't any holes but I guess it also doesn't mean that things aren't as bad as I think they are and it will be over hunky dory. I probably should of suspected that from my fragility.

Hey Eddy,

Standard MRIs are not sensative enough to see torn and damaged axons. As a consequence, even people with profound cognitive deficits can have "clean" MRIs. If you want the technical song and dance about trying to image a TBI, let me know. However, the best way to assess the true impact of a brain injury is a neuro-psych exam. If you haven't had one, I strongly suggest it.

Cheers

Can I just ask a doctor for a neuro-psyche exam? Also yes, I'd like to hear about trying to get an image of a TBI.

Is it likely the doctor's wrong and I have a TBI instead of PCS?

Isn't PCS the result of a TBI? A concussion is a form of traumatic brain injury. Perhaps if we called them what they are, doctors and coaches would take them more seriously.

Yes, you can ask your doctor to arrange a neuro-psych exam. Make sure the neuro-psychologist in question has ample experience with conducting and evaluating the test.

Diffusion tensor imaging, Quantitative Magnetic Resonance and Magnetization Transfer Ratio are all options for TBI patients. However, all of these are very expensive, and while they MAY show some of the damage, they can't explain how that is playing out is your daily life.

The neuro-psych test remains the best way to know how your injury is effecting your actual brain function.

Cheers

[QUOTE=Hockey;611520]Isn't PCS the result of a TBI? A concussion is a form of traumatic brain injury. Perhaps if we called them what they are, doctors and coaches would take them more seriously.
/QUOTE]

I totally agree! The reaction from people is very different when you tell them your kid has a concussion vs. MTBI (even mild in front of TBI seems ironic). The expectations for recovery and the degree of the injury are different.

After my daughter's injury, I spend hours researching concussions and never really found good resources for what we were experiencing. When I made the shift to starting looking at it as a TBI - I was able to find so many more resources that better explained what I was seeing.

I've been recovering. Made some progress I guess.

Since the spinout I use to wake up everyday with these weird migraines. I didn't wake up from them - they would kick when a couple of minutes after I wake up from sleeping. Like I could feel my brain start up. For the past three days I haven't had one.

I've been having a couple of lucid dreams. At first I didn't have dreams, then when the dreams started to return they were sort of dreams where they were vivid and felt real. Or sometimes they can even screw with your head and sort of trick you when you wake up. But I've had two dreams in the past two weeks where I became aware that I was in a dream! I haven't had a lucid dream in a long, long time and seeing them return is kinda nice.

Borrowed an old Nintendo DS and a copy of Brain Age 2 about two weeks ago. I've been making progress. I started with a mind of a 65 year old, for a 22 year old that seemed sort of bad. I couldn't do much of the sections effectively (memory, math, word scambling, etc.) and for the first week I was going from 65 to 45. Slow progress, but breaking records each time. Now I'm down to 28-29. Not optimal, I'm bad at some such as the word scramble. But I think it been helping me out. I wish they had more memory games, I felt kinda proud when in the number memory game I memorized 19 numbers out of 25 but the game only lets you do that at random every other day.

Noticed changes in reading, I've been reading old sentences again and noticing puns or more word plays. I've had a problem for the longest time whenever I would read this weekly comic I wouldn't be able to remember it at ALL. Not the title, not the joke, not even the illustration. Now I've been able to recall most of it.

Not magically healed yet, my vision is still crappy and such. But it seems like I'm having my "good days" right now and they're better than before.

My girlfriend did accidentally headbutt me last night, but I didn't see any lights and I pulled back good enough, we did sort of just "bounce" off of each other. I think it did upset the nerves in my head.