What does this sound like to you?

[lindsayschu2]

Cint, what I am saying is that it is rare to have BOTH idiopathic generalize epilepsy AND partial seizures at the same time (focal onset epilepsy). Your link shows only the data on idiopathic--your link lists the types of seizures that are included in IGE--absences, myoclonics and TCs. You can see your list doesn't include partial seizures like complex and simple partials because those are focal seizures and people with IGE don't have those, except in the very rare case that they have focal epilepsy as well, demonstrating the point I was making. I'm not saying that IGE is rare, or that partial seizures combined with generalized TCs are rare--only that having both together is rare. Generalized SEIZURES are different than generalized EPILEPSY. This was carefully explained to me by my epileptologist, after struggling for over a year to understand why I clearly had partial seizures as well as myoclonic seizures--nothing about the description of myoclonic epilepsies ever included partial seizures as a possible seizure type (as your link and all others show) yet I was clearly having both. It took a highly reputable epileptologist to finally figure this out for me. I posted many questions of my own on here trying to understand why I was having myoclonic seizures when I have temporal lobe epilepsy until I was finally rediagnosed. Skyfire could well have both types of epilepsy, he clearly has IGE, but it isn't at all common. I'm not here to engage in debate only to share what I learned through my own diagnosis and struggles in case it is helpful to Skyfire. Either it's helpful or it's not--but either way I trust my epileptologist completely.

 

[skyfire322]

Curious.....

Earlier today, I was having repetitive motions and lip smacking but was responsive. Pupils were huge though.

Could that be a partial as well even though I was responsive? Or just an aura?

 

[Cint]

Curious.....

Earlier today, I was having repetitive motions and lip smacking but was responsive. Pupils were huge though.

Could that be a partial as well even though I was responsive? Or just an aura?

Sounds like a simple partial.

 

[Cint]

Generalized SEIZURES are different than generalized EPILEPSY. This was carefully explained to me by my epileptologist, after struggling for over a year to understand why I clearly had partial seizures as well as myoclonic seizures--nothing about the description of myoclonic epilepsies ever included partial seizures as a possible seizure type (as your link and all others show) yet I was clearly having both. It took a highly reputable epileptologist to finally figure this out for me. I posted many questions of my own on here trying to understand why I was having myoclonic seizures when I have temporal lobe epilepsy until I was finally rediagnosed. Skyfire could well have both types of epilepsy, he clearly has IGE, but it isn't at all common. I'm not here to engage in debate only to share what I learned through my own diagnosis and struggles in case it is helpful to Skyfire. Either it's helpful or it's not--but either way I trust my epileptologist completely.

I don't which epileptologist you see at UCHSC, but I also go there and have been seeing an epileptologist since the 90's. Before I moved back to Denver, the epileptologist I saw, used to be on the National Board of Epilepsy, so she was/is very knowledgeable. I'm not here for a debate, either. Even tho I was diagnosed with TLE, with secondary generalized tonic-clonic seizures, I, too have had all kinds of seizures, from SP, CP, TC and even some myoclonic ones where my arms/legs have started jumping without control.

http://www.epilepsy.com/information...res/classifying-seizures/generalized-seizures


I don't trust my epileptologist here as much as the one I had before I moved back to Denver. My first one knew more.

 

[lindsayschu2]

Yes sounds more like a simple partial to me too. Cint I see Cornelia Drees. My seizures went from all complex and simple partials (and one TC) for 40 years to predominantly myoclonic seizures, sometimes all night, sometimes status. Partials are almost fully controlled, and with her help, myos much better as well. My mother and son have both had seizures (the genetic link indicating IGE) and the meds that make genetic generalized epilepsy worse make my myos much worse (gapapentin, lamotigrine). That's why she drew the conclusion that it's additive IGE and not twitches that are part of partial seizures. I'll say I've never fully had faith in neuro until Dr. Drees--she has given me my life back. Happy holidays!

 

[skyfire322]

About 20 minutes after posting that, I had a grand mal. I'm currently writing this from the ER. They did the MRI, everything came back normal Funny thing is that the ER doctor here never mentioned my current neuro. Just the epileptologist I starred seeing. He said "We all need a second opinion, especially with this town." That made me chuckle, hehe.

Anyhow, I'm being released in a little bit. Thanks again for all your info!

 

[Cint]

Oh no, sorry about that grand mal (TC) seizure. I'm glad you are seeing an epileptologist instead of a neurologist.

 

[skyfire322]

Even tho I was diagnosed with TLE, with secondary generalized tonic-clonic seizures, I, too have had all kinds of seizures, from SP, CP, TC and even some myoclonic ones where my arms/legs have started jumping without control.

I was thinking about this yesterday.... I was diagnosed with generalized idiopathic and was curious if it could change to something such as focal, especially since all I have been having are simple and complex partials for the past few days.

 

[lindsayschu2]

What I was saying is, you can have both at the same time. Read the link I posted on page one (then click on the 'full text' link for more details)--they describe that the occurence is rare, but some people like me have partial seizures first and IGE later, and some the other way (they report it was about equal). They say that in their study of 3000 patients they found only .2% had both but they think it's under-reported because once a diagnosis is made for one type, they tend to not even consider a patient might have two types of epilepsy. I definitely had complex partials, simple partials and one TC--every neuro in 35 years was in agreement there. Myoclonics developed in my late 40's and sort of took over the scene and became the dominant seizure type. Please let us know what happens at your appointment, and I hope things get better!!