TBI Seizures: Diagnosed with Severe TBI with Seizures

TBI Seizures: Craig Part Seven 

Craig tells us about the TBI seizures he suffered in which the medical staff misdiagnosed and called them “shakes” such as in Parkinson’s Disease.

Have you ever gone back to look at your hospital records before your initial hospitalization and those re-admissions? 

Yeah, I have.

What’s the diagnosis? 

Which one?  Because I went to several.  The original diagnosis, severe traumatic brain injury.  Outcome, you know they said, I’m going to have a pretty good recovery because, all the things that I shouldn’t have done I did pretty quickly, you know.  I, probably not going to walk again.  That was a concern.  I walked pretty good.  Might have problems with talking and never lost any of that ability.  My ability was the psychosocial stuff that, especially with what I did.

You said did they do an MRI?  Is that where they got the diffuse axonal injury issue? 

Correct.

Do you know what your MRI said? 

I don’t remember.  I remember the pictures of the torn.  They could actually see the tears on the one side it was so severe.  As you know they don’t show up very well, unless it’s pretty severe. There’s a little minor bleeding and they were a little concerned about the blood, that they might have to go in there and do something about it, but it seemed to dissipate pretty quick.

You never slipped into a deep coma so they held back on interventions? 

Correct.

Were they giving you steroids to keep the swelling down? 

Correct and antibodies  for infection.

Craig Explains How His TBI Seizures Were Not typical

Now, you went home and had to go back.  Do you know why you had to go back? 

Because the shakes.  I couldn’t stop shaking.  Typically you think a seizure ( TBI seizures) is somebody on the ground, but mine were just like,  little shakes about ten minutes long and,   I just remember being drained.  And then I wasn’t sleeping.

Was it a Parkinsonian type of syndrome? 

Yeah, yeah kind of, but of course when I go in there I wouldn’t be shaking.

So your TBI seizures were episodic?  

Correct.

Did they put you on any seizure medicines? 

Yeah, and it took a few different medicines before one actually worked and one almost killed me.  The inside of my throat broke out and the lining in my stomach.

So, what was the medicine that helped? 

Kipra believe it or not.  Yeah, it’s   an old class seizure medication ( also effective for TBI seizures) and it was actually fairly good because it had a sedative effect so I take it at night and so it’d help me sleep.  Of course this is long after.  I’m actually taking a lot of sleeping pills at this point to get three hours of sleep.  And     it took me about two years to get my first good night’s sleep.

Did they do a sleep study on you at any point? 

No.  They wanted to but at that point I was so done with doctors.   The psyche ward was the last time I’ve reached out for a doctor.

When did you go into the psyche ward? That was when you had the suicidal issue? 

Right.  I went in there to just see what’s going on and that was the last time.  Yeah I would go in for the headaches.  The headaches hurt so bad the first couple of years.  And   I would just go in with the pain and   then the more pain I had, the shakes.  They called  them  shakes and the TBI seizures would get,  increasingly bad.

Next in Part Eight –  Only Vague Memories of Going Home After Severe Brain Injury