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New to Grand Mal Seizures

Tue, 12/01/2015 - 17:12

Hi everyone!  Long time reader, first time signing up.  After 13+ years living with my diagnosis, figured it was finally time to jump in to the forums here.  :)

I was diagnosed in 2002 with absence seizures.  I have had them for as long as I can remember - going back to childhood.  But after having one while driving and being out for 5 seconds or so, I knew it was time to get checked out.

My diagnosis was very swift.  Scans and an EEG immediately confirmed it.

A few years ago, myoclonic seizures were added to the mix.  

A little over a week ago, I had my first documented grand mal.  I say documented because it's the first time someone saw me have one ... but I suspect I've had a few night ones over the years.

Prior to my grand mal, I was making weird gasping sounds when I'd talk.  I'm guessing those were auras.  I'd talk, get caught on a word, gasp for air and resume talking.  This started in a doctor's office of all places ... I was being looked at for tonsillitis.  She saw it happen several times - but wasn't concerned.  So off I went to run errands (I wasn't driving).

The gasping sounds got progressively worse over the next 30 minutes.  More frequent.  The person with me was very alarmed ... kept saying "I don't think this is normal ... something is wrong."

And then I don't remember anything until I was in an ambulance.  Dazed, confused, exhausted.  I couldn't feel my tongue (I bit it so hard, it was painfully numb).  It took me a while to be able to answer simple questions (what's your name, where are you, who is the president, etc.).

My CT scan came out normal and after a few hours of observation I was sent home.

A little over a week later and I still feel like I'm dealing with the side effects.  My tongue is still numb (it's like 24/7 novocaine), my elbow is terribly sore (apparently when I went rigid - I slammed it into the side of the car with a great deal of force), and I feel just out of it.  Like I'm not in my body.  It's the most bizarre thing.  With absence and myoclonics - I always bounced back really quick.  

So one question I have for everyone ... how did you figure out what your auras were?  I've never really had to worry about them with the absence ... although I did figure out what mine was.  But the grand mal is completely different.  Can you have several auras?  Do they always come with a lot of warning?  Had I known that was what I was having - I had ample time to get to a safe environment.

Not sure what's going to happen medicine wise.  I'm on 1000mg of Keppra for the other seizures, but it wasn't working.  Not slated to see my neurologist until February.  He oddly didn't seem very concerned about the grand mal.  ?

Look forward to hearing from everyone and getting to know you, learn about your experiences, etc.  

Comments

Auras are warnings of

Submitted by just_joe on Wed, 2015-12-02 - 11:03
Auras are warnings of stronger seizures that MIGHT happen. Some people have them and others had them but no longer have them. I had a few when I was younger but haven't had any for about 45-50 years. Auras are basically seizures in themselves. Keep track of the number of seizures you have and document them so that information can be given to your neurologist. Keppra is a good medication and if your dosage hasn't changes in awhile then it may be raised. Is you take meds 2 times a day those times need to be 12  hours apart to keep th theraputic levels where the neurologist wants them. I hope this helps and you get your seizures under control Joe

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