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Aubrey2300

Aubrey2300

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So glad to have found this site! My daughter was diagnosed with TLE 7 years ago. She mostly experiences simple partial seizures, they come in clusters where sometimes she is having repeated seizures for 2 or 3 days, then for 6 months none at all. It is so confusing and scary. She started seizing on Sunday, it's now Wed and they haven't stopped. Dr. is out on maternity leave, her office and other doctors seem to not get that it's not like a seizure cuz she's awake, conscious. It's so frustrating. Should I bring her to ER, ride it out, help..
 
Seems to be ER time. I have simple partials which come in clusters, but never with 6 months in between. Usually a couple weeks at the most, and then I may have anywhere from 1-10 a day for a while. In my case, however, this has been a long-established pattern (over 30 years) so I know what is normal for me and what isn't. In your daughter's case it seems like a fairly major change has happened, which should be evaluated immediately. Keep us posted. I know it's scary for family members (ask my wife!), but all will be well.
 
Thank you for your response. She is fourteen, but in the last few years seems like she is establishing a pattern as well. Just realizing there might be a pattern. The most frustrating thing is that she doesnt show a seizure like everyone thinks a seizure should show. She feels weird, stomach ache, dizzy, seems spacey to me and delayed in her communication. She is emotional as well. All this during an episode, that's how the doc describes her feelings. I know my daughter, to me it's a seizure.. They started out as complex partial when she was 7, she had 3 of those, now always presents in a fairy like, weird state of mind, and it lasts for hours, goes away then comes back a few hours later. This goes on for a few days, then she bounces back. The doctor doesn't seem to get it?
 
Aubrey2300 said:
The doctor doesn't seem to get it?
Click to expand...

Is this dr. a pediatric neurologist? If not, I strongly suggest you find an epilepsy specialist (an epileptologist). They can help you much better than a regular neurologist.
 
Hi Aubrey2300, welcome to CWE!

I agree with the others, head to the ER in the hopes of getting referred to a neurologist/epileptologist who has experience recognizing and treating all kinds of epilepsy. This new batch of seizures may mean that her medication needs to be adjusted.

Keep pushing to be seen by an expert -- it can make all the difference in the kind of care your daughter receives.

Best,
Nakamova
 
Seizures come in all different shapes and sizes. Mine last for maybe 15 to 30 seconds, sometimes even a minute. I can still talk, walk, drive, remain aware during them, but I get weird feelings in my stomach and body and head. Sort of like an adrenaline rush, in a way. Not really pleasant. I will get pale and break into a cold sweat, and they make me really tired. I also smack my lips, but I am never aware of doing that for some reason. My wife and family always know when I'm having one, and strangers and customers in my shop may realize something weird is going on but if they do they don't say anything. if you don't already do it, I would strongly suggest that you keep a seizure diary. For years I would write down the time of day and things that were going on in my life that might have led to the seizures. I never found a correlation with anything, and now I just write the time on a calendar. I've adjusted meds a few times over the years, and the combination of Lamictal and Trileptal that I'm on seems to be reducing them, and with minimal side-effects. I had about 350 or so last year, and this year so far I've only had about 35, so I'm ahead of the game!

Good luck!
 
Your description of the feelings you experience are so much like yours. Very helpful. :)
 
When will she get relief?

Doctor wants her in tomorrow morning. She is very emotional, continues to say she feels weird all over, she is pale, clammy, her headache will not go away, she is unsteady on her feet, STILL. Doctor said it might be migraine, but since she is not hooked to wires how am i to know if she's just continuously seizing. We both are so worried.
 
Have you and daughter been keeping a diary? This will help both you and Her Dr.

I don't know if you are thinking that because she is concius (spelling) that she is not having a seizures. There are many many types of seizures.

I myself have partials / complex partials
My start with déjà vu, then I stop whatever I'm doing (talking) and stare ahead, I know who is around me, what they are doing and saying, but I can not respond. After I have a fear takes over.
 
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