Do You De Ja Vu?

There are a lot of misconceptions about epilepsy, but the ignorance of doctors really gets my goat (no pun intended).

My son, Weslee, started complaining of multiple episodes PER DAY of de ja vu (also spelled deja vu) sometime around 2007 or 2008. 

"Whew! There went another one".

"And another one!"

It seemed like little visions of the future or past, so he started calling them visions, and shortened it to V. 

"I just had a V."

Asked every doctor we saw for several years what all the de ja vu episodes meant, and was told by EVERY ONE OF THEM that it was nothing. No big deal. Everyone has them.

Me: Everyone?

Them: Sure.

Me: But this often? Every day, and several times a day?

Them: Sure. Don't worry.

But I did.  It wasn't until after he had 2 grand mal (tonic clonic) seizures that I had a light bulb go off ... I'll research the different kinds of seizures, because he's started doing really weird things.

Ta Da!

Although I wasn't specifically looking for de ja vu in all of those epilepsy sites, I found it.  Turns out he was having SIMPLE PARTIAL SEIZURES this whole time.

Why wouldn't any of the doctors take me seriously? Why wouldn't they even say ... hey, it might, just might, be a seizure. Let's do some tests.

Nope. Because doctors are gods, right?

Okay, sorry for that last bit. I am still angry about it. If we had caught it in time, maybe it might not have escalated to full blown epilepsy.

He developed a total of four seizure types: (1) simple partials / de ja vu episodes, (2) complex partial / nobody home but the body still moves, (3) absense / no body home not even the body, and (4) tonic clonic / grand mal / fall down hit the head and back and convulse until he's done.

Weslee had two brain surgeries in May 2013...right temporal lobe, right hippocampus, right occipital lobe. He started losing so much weight that he is pretty much just a skeleton, and as of November 16 2013, revealed he's been having de ja vu episodes again.

My missions:
  1. I want to to get people to stop assuming doctors know what the hell they are talking about! If you're having multiple episodes of de ja vu and it's more often than before or than other people, then get to a neurologist. Not just any neurologist because they deal with the entire neuro system. A special called an "epileptologist". Keep track of how often you have these so you can give them good information about frequency.
  2. I want to know more about how often "normal" people have de ja vu episodes.  Answer in the comments section:  "Question: how many times a day / week / month / year so you have an episode of de ja vu?" Please share ... need LOTS of answers! The more answers the better. 

What is Temporal Lobe Epilepsy?
Temporal Lobe Epilepsy (TLE) means that the seizures arise in the temporal lobe of the brain. Experiences during temporal lobe seizures vary in intensity and quality. Sometimes the seizures are so mild that the person barely notices. In other cases, the person may be consumed with feelings of fear, pleasure, or unreality. A patient may also report an odd smell, an abdominal sensation that rises up through the chest into the throat, an old memory or familiar feeling, or a feeling that is impossible to describe.
Types of Seizures in TLE
The most common seizure type in TLE is a complex partial seizure. During complex partial seizures people with TLE tend to perform repetitive, automatic movements (called automatisms), such as lip smacking and rubbing their hands together. Three-quarters of people with TLE also have simple partial seizures, and about half have tonic-clonic seizures at some time. Note: some people with TLE experience only simple partial seizures.
Temporal lobe seizures usually begin in the deeper portions of the temporal lobe. This area is part of the limbic system, which controls emotions and memory. This is why the seizures can include a feeling of déjà vu, fear, or anxiety, and why some people with TLE may have problems with memory and depression.
How is TLE Treated?
In most cases, the seizures associated with TLE can be fully controlled with medications used for partial seizures. If drugs are ineffective, brain surgery is often an option for patients with TLE. Temporal lobectomy is the most common and successful form of epilepsy surgery. Vagus Nerve Stimulation can also be beneficial in cases where temporal lobectomy is not recommended or has failed. At the NYU CEC we offer surgical treatments for TLE tailored to each patient.
PLEASE help spread the word that more than a few episodes of de ja vu a month can possibly be simple partial seizures.


Thank you for reading this!

1 comment:

Suz said...

Thank you for sharing. as an elementary teacher I have recommended that parents check for petit mal with their pediatricians, but it is obviously the tip of a large iceberg.