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Old 07-17-2008, 11:10 AM   #1
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I Can't Have Generalized AND Temporal Seizures? help SO appreciated!

Alrighty, so I always felt odd as a child/adolescent..I felt dreamy a lot, I had more deja vu than others seemed to...in fact I spent a lot of precious time scared as hell I was going crazy, at points it almost wrecked my teenage years.

I had a tonic clonic at 14 then three more when I was 18-19. I had an MRI which was clear, and an EEG which showed general excess activity and photosensitivity.

SO: I was diagnosed as Primary Idiopathic General Epilepsy and put on Lamictal.

However, although the tonic clonics have been under control for a year, I still had deja vus, still felt dreamy sometimes, and this year started having forced flashback (accompanied sometimes with nausea) events, to entirely neutral memories.

Went to see my GP who suspected it was epilepsy related, referred me back to a neurologist.

WELL

I went to see him today, and he said he'd "call me back after doing some homework etc", but his main point was that it isn't likely these deja vu/flashback things are epilepsy, because those are temporal lobe stuff and my diagnosis/EEG is Primary Generalized.

He said sometimes you can have general and TLE together but very rarely.

I'm pretty frustrated, because he said "its probably just part of you/your brain"....huh? So although I'm having what seem to be TLE symptoms I can't have that because I have generalized?

(I know a clear MRI usually means no TLE but he also said "well you can have TLE with a clear MRI, so.)

I mean, don't get me wrong, I know this isn't life or death and he's had 7 yrs med school and yadda yadda, but isn't it too much of a coincidence that I've already got an epilepsy diagnosis and have this?

And that I've only heard such symptoms (excessive deja vus/flashbacks) described as relating to epilepsy?

Anyone have any opinions/contribution, all welcome

Last edited by EmmieEmmie; 07-17-2008 at 11:11 AM.

 
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Old 07-17-2008, 02:34 PM   #2
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Re: I Can't Have Generalized AND Temporal Seizures? help SO appreciated!

What do you know about this Dr, or what were your "impressions" on him?

I found that often first impressions (FOR ME) tend to be valid about doctors. If you have not formed an opinion go another round and see if you can form one. I can do it quickly by how they react to my questions. As well to how they react when I comment on their suggestions, or statements about my case. If they ignore me, or treat me as "just another patient" (stupid) I am likely to get another doctor.

If I am mostly stable, not having monthly seizures and I have a new doctor wanting to change my treatment all of a sudden and not explain WHY to me, I'm on the defense. They better act like we (the patients) are IN the room and understand, and if not, be ready to explain their actions with reason.

The bit you explained, it sounds like your case may be hard to understand fully, or he is unsure exactly and needs to look at your history more before making decisions. The doctor MAY be trying to play it safe (slow) rather than some that go full throttle and we end up on a road of trial and error medications.

--Travis

 
Old 07-18-2008, 04:25 AM   #3
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Re: I Can't Have Generalized AND Temporal Seizures? help SO appreciated!

Thankyou very much, Travis.

I liked him, but I couldn't help feeling he didn't give me a full and valid explanation, ie if these arn't seizures and they are "just me", why? He couldn't say. He's meant to be a consultant neurologist for goodness' sake so I foun that pretty unsatisfactory.

He's meant to call me back soon so we'll see what he has to say...

 
Old 07-19-2008, 02:16 PM   #4
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Re: I Can't Have Generalized AND Temporal Seizures? help SO appreciated!

Hi Emmie, when you say that you can't have generalized and partial(temporal lobe) epilepsy at the same time, I think that's wrong. Personally I have both, a seizure can start as a partial from the temporal lobe and then spread to the rest of the brain and become generalized. This is more commen than you think. This is probably what you have.

Penny

 
Old 07-19-2008, 07:11 PM   #5
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loriy HB User
Re: I Can't Have Generalized AND Temporal Seizures? help SO appreciated!

My son has Generalized ClonicTonic and Generalized Complex Partial Seizures. He was in the hospitl for a week to get this diagnosis so I feel pretty confident that his Dr.'s are right. The way they presented it to us made me feel that it is fairly common to have more than one type of seizure. If you are not comfortable with your Dr. or you don't understand him I would look for another one.

 
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