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dback re: head injury induced narcolepsy

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Old 04-14-2004, 05:14 PM   #1
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Angel77 HB User
Wink dback re: head injury induced narcolepsy

Hi! They found out an injury after I got sick of no answers and started doing all my own research. I gathered up all my scans, records, ordered the emergency records and started searching. My first indication was that I showed no signs of narcolepsy before the head injury. So I started there.

Most narcoleptics test positive for a certain HLA blood titer...I didn't have it, nor did I have any known relatives with narcolepsy. I was sent by a doctor who didn't believe my test results for narcolepsy in for seizure testing, which included an MRI. On the MRI it showed I had a large mass of blood vessels in the white matter on the frontal lobe...which is where I took the initial injury.

It isn't 100%, nothing is with a brain injury, unless it's documented from the start. But they were too busy with my face...I took off a good portion of my cheek, almost to the bone, a lot of my top lip, 2-3" laceration above my eyebrow, gravel holes everywhere and another lac in the back of my head. From research I found that force sufficient enough to cause a lac on the forhead is also enough force to sustain a brain injury.

It was never addressed. I was out of school for two weeks and informed the nurse who removed the stitches from the front of my head that I had passed out after trying to go to school to get my homework...she said, "Don't worry, that's common after a head injury." Yet another sign that things weren't right. My family ignored it and it continued to worsen. I got pregnant shortly after (17) and at 19 dx's w/ it was all attributed to that.

I had constant migraines from taking a fracture chip out of my C5 or 6 and shifted my pelvis. They missed that too. Some of the consequences of it have been fatigue, memory problems, emotional problems, over-sensitivity to sound and touch, my pelvis has continued to shift and has made my right leg 1/2" longer and caused the ligaments to stretch and causes a lot of pain.

It was just all missed because no doctor would sit in a room long enough to listen, nor would they ask questions about it. IMO, they had enough evidence to suspect it, but ignored it. I am now 10yrs post-injury and have been told that the damage is now permanent. Had it been caught in the first couple years, I had a better chance. Now I can't remember things like: not starting fires in the oven, turning it off, taking my meds, where I left my meds, if I ate for the day, can't find my words and look like an idiot, can't concentrate as well as I used to, troubles reading and comprehending and so many more that I can't even think about right now.

I know this is probably more than you wanted to know, but felt it worth mentioning, just in case someone else is suffering with the same problems. I don't want to see anyone else go for 10yrs before finding out. If you have more questions, holler....never know what people want to know and what turns into too much information...but hey, I've got enough problems to blame it on!!! LOL Brain damage, narcolepsy, being blonde or having the hypothyroid stupids!! Blonde was the first indication my brain was not all there! LOL

If you don't experience anything bad, you'll never appreciate the good when it comes around!!!

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Old 04-17-2004, 11:23 AM   #2
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stackzone HB User
Re: dback re: head injury induced narcolepsy

Thanx, I dont have narc, but i have sufffered from unexplained stuff and I did have a few head injuries in my past. I was told there was no real way to tell if it is connected or not. Hope you get better...

Old 04-17-2004, 01:38 PM   #3
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Angel77 HB User
Re: dback re: head injury induced narcolepsy

Look up post-concussive syndrome and closed head injuries, it will lead you to a wealth of information. One of the biggest things is that people who have a higher than average IQ seem to fair worse. Not in the sense as to amount of damage done, but in the sense that you are extremely aware you are different than before.

There is no real way to prove what caused an injury, but a neuropsychological evaluation can tell w/ 90-95% certainty if you suffer from any type of brain injury.

My main problems are memory, reading, comprehension, emotional lability, and the weirdest ones are called sensory integration dysfunction. My husband can't poke me because it feels like he's hit me in a bruise, sounds that are sudden and/or loud will almost shut me down, I can't differentiate from which direction sound is coming from, I startle easily, I am overly sensitive to hot/cold extremes....toast in the toaster causes me extreme pain....similar to someone normal grabbing a baked potato fresh out of the oven with bare hands.

I also have vertigo, ringing in the ears, balance problems....etc. Damn near classic everything in the head trauma category. It's not severe enough to stop me from living, just complicate the heck out of things.

What type of symptoms do you have that you feel may be related to an injury, what type of injury and did it seem to get worse w/ subsequent injuries...common with head trauma. Once you've bumped your noggin and done some damage, you are more prone to damage with other bumps.

If ya don't mind, post your symptoms or questions and I'll answer what I can.

If you don't experience anything bad, you'll never appreciate the good when it comes around!!!

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