Losing Blocks of Time, My Grasp, My Tango steps and Dreams

[lindytime]

"Is it really post concussion syndrome? by nightandday, Jan 14, 2009 08:46AM"
The symptoms in the Post below from Jan. 14, 2009 sounds frighteningly familiar... the fatigue, nausea, migraines, difficulty multitasking, concentrating and remembering, but most debilitating is losing blocks of time everyday, I pass out, fall asleep if I sit down and experience stiffness, pressure and pain throughout my body.
After experiencing unrelenting fatigue with soft tissue damage from a back and neck injury in Israel in June 2008, I was almost recovered when I suffered a concussion and whiplash as a passenger in an auto accident in March, 2009.
Fatigue increased to where I could fall asleep anywhere, anytime and would just fall as if fainting but awake, also had balance problems and kept dropping things.  I was misdiagnosed with depression -- testing showed no  depression, but ADD and narcolepsy in April/May of 2009.  Many tests and doctors later, the diagnoses was changed to post concussive attention disorder (I did not have the profile for ADD anyway), vestibular disease (dizziness and giddyness), balance problems and narcolepsy with drop attacks and cataplexy, and severe obstructive sleep apnea with EDS, and hypersomnia.   I was told I should not seek work and it could be some time before I could work and, then, not at the same level of functioning, since I had lost "executive functioning".   After going through sleep labs and testing, I was required to sign papers that I would not drive except when well rested and only for very short distances.   Now I have lost the ability to grasp with my hands and have very sharp pain in my right hand and fingers and have been tested for carpal tunnel and pinched nerve, which I do not have.  Xrays and Tests also proved negative for depression, lupus, MS, arthritis, and other neuro or rheumatoid diseases.
I have seen and am seeing neurologists, psychiatrists, psychologists, neuropsychiatrists, rheumatologists, ENT balance specialist, orthopedists, Japanese healer, physical therapists, myofascial release and cranial sacral therapists, and an internist to little avail.
They say it is Post Concussion Syndrome - but it's been well over a year!  What could this be and who should I see?
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Is it really post concussion syndrome?
by nightandday, Jan 14, 2009 08:46AM
I was diagnosed with post concussion syndrome over a year ago.  The medicines I'm taking are not helping.  I take topamax, nortriptylineNortriptyline
Nortriptyline (bulk), and tordol.  I was wondering if there is another condition that had similar symptoms to post concussion syndrome.  I have all of the most commonCommon coldsymptoms such as fatigue, nausea, migrains, mood swings, difficulty concentrating and remembering, but I also loss blocks of time, I pass out, and often experience some numbnessNumbness and tinglingon one side of my body.  Could I have something other than Post Concussion Syndrome, and if so what?

[SamPCS]

I had a mild TBI 1 year and 7 months ago, followed by Persistent Post Concussion Syndrome which altered my life.  I have most of the symptoms you have especially dizziness, fatigueness, loss of smell and taste, ringing in the ears etc.,   I am mostly home bound and suffer all the time.  Cannot handle stores, malls, crowd and so many other stuff considered normal.  

I also wondered if it is a PCS or anything else.  Brain injury may aggravate other conditions we already have.  Again I personally know some people who recovered completely after a severe brain injury.  The outcome of Head/Brain injury is unpredictable and I am unlucky one who went down.

I have been to many specialists, meds, therapies etc., and didn't get much help and some meds made my condition worse.  I also take Amiriptyline which I got unnecessarily addicted to and now I can't get out of it.  You have been to  your shares of doctors I guess and there is no point running around which I did.  Most of them has no clue about Post Concussion Syndrome and in fact baffled when I report my symptoms and now scared to see me too.

I agree with ggreg about consultation in University setting and with brain/head injury there is no cure but only degrees of recovery.  Each brain injury is unique and try to get some one who can listen to you and may be a concussion specialist if you can.  I am even considering Stem Cell Therapy for which I have to travel outside U.S.A.

Keep me posted if you can.

[ggreg]

I'll tell you my nonexpert view on this.  The docs have given you all these so-called "diagnoses," which are really just descriptions of symptoms.  The fact of the matter is, you hit your head hard, your brain was injured by something like a bruise or bleed, and now you're not the same.  You should be referred to a neurosurgeon at a hospital in a university setting, get a new MRI of the brain, and let him decide what happened to you, and offer treatment of some kind, to include poss surgery, physical therapy, and medication.  And as with any brain injury, recovery is measured in degrees rather than cure.  But I don't like the sound of you getting worse, so that's why I say see a top doc.