What does this sound like to you?

[skyfire322]

About an hour ago, I felt some auras coming on so I laid down. My girlfriend says that I had the jerks, was rubbing my arms, and smacking my lips. I then was staring off, non responsive, but not convulsing. According to her it lasted between 10-15 minutes.

Could this have been just a "glorified" absence seizure?

 

[Angelita14]

Could it have been a complex partial seizure? Id see your GP before Christmas. Did your Girlfriend manage to video it all?

 

[SlimBlue]

Have you been diagnosed with medial temporal lobe epilepsy? It sounds just like the few complex partials I've had with mine, when I didn't generalise into a tonic clonic.

The auras, lip smacking, repetitive movements and unresponsiveness sound like a focal seizure with complex impaired conciousness. Apparently it's rare for them to be that long, but it does happen, and status epilepticus can occur. Mine were quite long if I recall, about 10 minutes.

Do you get 'butterflies' -a tingly sensation- or a rising feeling in your stomach, maybe with some nausea with your auras and deja-vu feeling?

 

[valeriedl]

I have done those things during complex partial seizures. I may have done just one or all of them at the same time during a seizure. My husband has seen me do it. My seizures will last anywhere from a few minutes to over 10 minutes also.

 

[skyfire322]

Have you been diagnosed with medial temporal lobe epilepsy? It sounds just like the few complex partials I've had with mine, when I didn't generalise into a tonic clonic.

The auras, lip smacking, repetitive movements and unresponsiveness sound like a focal seizure with complex impaired conciousness. Apparently it's rare for them to be that long, but it does happen, and status epilepticus can occur. Mine were quite long if I recall, about 10 minutes.

Do you get 'butterflies' -a tingly sensation- or a rising feeling in your stomach, maybe with some nausea with your auras and deja-vu feeling?

I have not been diagnosed with that, just idiopathic generalized.

As for the auras, all of what you listed is what I had felt. It felt like I stood up really fast (blood of rush to the head), but with tingles, and nausea.

Could it have been a complex partial seizure? Id see your GP before Christmas. Did your Girlfriend manage to video it all?

Luckily, my neurologist appointment here is on Christmas Eve so I will explain the events to him and see what he says. She didn't tape it, because she was too worried that I may have gone into a full grand mal.

 

[SlimBlue]

I have not been diagnosed with that, just idiopathic generalized.

How do they explain your heavy auras, focal motor activities and automatisms as not being a focal based epilepsy?

Hopefully your MRI will shed some light on it- especially as you've just had this complex to go with the other types in the past..

 

[lindsayschu2]

It does sound more like a partial seizure. I have both idiopathic generalized as well as focal onset epilepsies--it's pretty rare to have both (something like 5% of people with epilepsy have both syndromes) but obviously can happen. I definitely have seizures that I have a hard time figuring out which kind they are, they seem to be hard to classify. Glad you are being seen!!

 

[Rachellabella1995]

I'd agree with Lindsay, it definitely sounds more like a partial seizure.

I have both idiopathic generalized as well as focal onset epilepsies--it's pretty rare to have both (something like 5% of people with epilepsy have both syndromes

I didn't realise that it was rare or anything. Interesting stuff, I have both generalised and focal seizures.

 

[skyfire322]

How do they explain your heavy auras, focal motor activities and automatisms as not being a focal based epilepsy?

Hopefully your MRI will shed some light on it- especially as you've just had this complex to go with the other types in the past..

I think it's only because as of late I've started having partials. Plus my neuro here in VA is quite stubborn and really doesn't want to do much more for me. I'll most certainly explain it to him, but I think it'll fall upon deaf ears honestly :\


On a side note, should I advise my girlfriend to videotape the next one?

 

[skyfire322]

Also, status epilepticus was mentioned. This was the very first time a seizure of mine has lasted this long. If this occurs again, is it 911 worthy if non-convulsive?

Sorry for all of the posts. This just hasn't happened before.

 

[Kgartner]

On a side note, should I advise my girlfriend to videotape the next one?

I highly recommend it. It was a videotape of one of Annika's seizures that really got the attention of the attending during her video EEG. His whole attitude shifted once he saw what her seizures looked like.

 

[Cint]

It does sound more like a partial seizure. I have both idiopathic generalized as well as focal onset epilepsies--it's pretty rare to have both (something like 5% of people with epilepsy have both syndromes) but obviously can happen.

I am one of those in that small % that has partial seizures and TCs, too. I didn't think it was that rare, either. From what I've read, there is a 30% chance of folks with partials to have secondary generalized seizures, or TCs, too.

http://www.epilepsy.com/learn/types-seizures/secondarily-generalized-seizures
These seizures occur in more than 30% of people with partial epilepsy.

With my seizures, that smacking of the lips, etc, is an aura or a SP seizure, so I'm glad you are getting in to see your neuro this week. If any type of seizure lasts more than 5 minutes, that could be dangerous. It is called status. Been there.

 

[Cint]

Also, status epilepticus was mentioned. This was the very first time a seizure of mine has lasted this long. If this occurs again, is it 911 worthy if non-convulsive?

Sorry for all of the posts. This just hasn't happened before.

Definitely!!!! Any seizure that lasts 5 minutes is worthy of a 911 call. It could be life. As i said before, I've gone status several times. 911 was called.

 

[skyfire322]

Thank you all so very much for your responses again.

Whenever I have VEEG's, they can't catch anything. It's almost like trying to pee in public, hehe. I'll definitely let my girlfriend know to tape it and call 911. She's emotionally fragile when it comes to me having seizures, so it'll be hard trying to talk her into taping it, but I'll do my best!

 

[Kgartner]

Best of luck to you. I am very glad that you have found a new doctor that you trust a lot more than your current one. It sounds like the timing of that was very good!

I have meant to video Annika's seizures multiple times, but only had the presence of mind to do it one time - and even then, I missed the beginning. But if your girlfriend can do it it will be so helpful to your doctors!

 

[lindsayschu2]

Cint, just to clarify--it is not rare to have partials and tonic clonics--it IS rare to have generalized idiopathic epilepsy (so, absences, myoclonics and TCs) as well as focal epilepsy (partials and TCs). Those are separate syndromes according to my neuro at Anschutz, and it is fairly rare to have both of those syndromes at the same time.

 

[lindsayschu2]

Here's an article on the incidence of both syndromes together--of 3000 epilepsy patients reviewed .2% had both--so it's pretty uncommon for someone with idiopathic generalized epilepsy or juvenile myclonic to have partials but clearly does happen. It's like hitting the epilepsy lotto but not in a good way (lucky me )

(Not sure if I know how to make a link work, trying again)

http://www.seizure-journal.com/article/S1059-1311(05)00208-6/abstract?cc=y

 

[Cint]

Cint, just to clarify--it is not rare to have partials and tonic clonics--it IS rare to have generalized idiopathic epilepsy (so, absences, myoclonics and TCs) as well as focal epilepsy (partials and TCs). Those are separate syndromes according to my neuro at Anschutz, and it is fairly rare to have both of those syndromes at the same time.

According to the Epilepsy Foundation, Idiopathic Generalized Epilepsies constitute 1/3 of all seizure disorders. "They are genetically determined and affect otherwise normal people of both sexes and all races. IGEs manifest with typical absences, myoclonic jerks, and generalized tonic-clonic seizures, alone or in varying combinations and severity."

http://www.epilepsy.com/information...sy-seizures/idiopathic-generalized-epilepsies

 

[SlimBlue]

focal epilepsy (partials and TCs).

There's nothing that says you have to have a tonic clonic just because you start with a focal based aura.

As I posted earlier I've had lip smacking complex partials with the repetitive focal motor activity/automatisms instead of tonic clonics quite a few times. Because such a long seizure was reported (10 - 15 minutes) this is usually noted as a symptom of a seizure in the temporal lobe- just like mine were also.

I mentioned a focal based simple partial first, because all the symptoms skyfire posted in this thread, and others sound a lot like mine, as well as the complex afterwards, and given the neurologist's previous reluctance to request an MRI!!! It's very possible those heavy auras before these new complex partial are focal based- as the diagnosis of idopathic seemed to be an earlier lazy diagnosis, and I'm glad new tests are in the near future

 

[SlimBlue]

I think it's only because as of late I've started having partials. Plus my neuro here in VA is quite stubborn and really doesn't want to do much more for me. I'll most certainly explain it to him, but I think it'll fall upon deaf ears honestly :\

On a side note, should I advise my girlfriend to videotape the next one?

Ahh I see. I remember your shocking tale previously about no MRI, and assumed you'd moved to a new neurologist- instead of developing new symptoms which finally helped swing their judgement. I'll edit my above post so it makes sense then

If you could get a video of it, it would certainly help the diagnosis.