Advice please... changing patterns of Partial Simple Seizures

[Chris515]

Hey Everyone,

I'm having some difficulties lately and I was hoping I could get some advice, everyone on here has been so great helping me out.

It seems my seizure patterns have changed in the last few months (especially PS's in the last few days). So here's the brief history.

From 1992-2004 I mostly had PS's, about 1 or 2 a week. I had about 4 Tonic Clonic's in that time, all from extreme stress. From 2004-2007 I went into remission for some unknown reason, and didn't have any activity whatsoever.

Starting in September 2007 I started having PS's again out of nowhere. Since then I've had periods of between 1 and 6 per month. For a two month period (up until present) I stopped having PS's and only had TC's, mostly caused by stress but not enough that I'd expect to have one.

Starting on friday I had a strange PS which woke me up in the morning. It was almost like half a seizure, the after affects weren't as bad as usual. But I preceded to go through the whole day with auras, and had another PS at night, which wasn't that severe. So yesterday and today I'm feeling the same, kind of weak, shaky, and I'm feeling slightly detached.

It's hard to explain, but it's almost like I'm not feeling like myself and I'm just going through the daily motions. I feel mentally weak, like I could have a PS at any time. This is not normal for me.

I also had a PS at a hockey game last night, they were using strobe lights (even after the intro, what's up with that) so I had to leave. I've never had a possible photosensitive seizure before.

My epilepsy is caused by brain damage from birth. When I talked to my neurologist he said that epilepsy caused by physical damage is harder to predict and shifts in pattern can happen like this.

Also I'm on lamictal, 225mg twice a day. I recently had blood work done, and my levels are fine. I also had a MRI done, and nobody has called me with bad news.

Has anyone else experienced things like this? What should I do? What should I expect?

Is it a normal shift in pattern that may go away, or do I need to switch medication? Can it stop working just like that? I've been on it since 2003, when I switched from tegretol.

Thank you all for reading through this, I really rambled on. I appreciate all your help.

Chris

 

[Meetz1064]

Yeahhhhhh

unfortunately, E morphs, and for no reason. I have now morphed into have FOUR types of E.

I, too, was born with E, and, I found out recently, that mine is genetic. I was diagnosed at 13 months, but my mother had noticed something not being quite right at first for a while......and finally talked the doctor into checking me out.

Originally, I recently found out, my seizures were in the daytime. NOW, they are STRICTLY nocturnal. They morphed, into nocturnal seizures about the time I had my first child.

If at ANY time you don't feel comfortable with the answers that your doctor is giving you, then ask for a 2d or even a 3d opinion. I have changed my diet, too, and it has helped with seizure control as well, so that may be something that you may want to consider, although it is a pain in the arse for some.....

Good luck. Hope I helped at least a little.

Meetz
:rock:

 

[skillefer]

Hi Chris! Actually, meds CAN just quit working like that. Mine did. And yes, your seizure patterns can shift. What I would do is just keep track of it. It sounds like the meds might need to be added on to, or changed. Listen to what your doc has to say. Usually when the seizure pattern changes, it's not for the milder....unfortunately....so make sure that your being especially careful.

 

[Annette]

Hey Everyone,

I'm having some difficulties lately and I was hoping I could get some advice, everyone on here has been so great helping me out.

It seems my seizure patterns have changed in the last few months (especially PS's in the last few days). So here's the brief history.

From 1992-2004 I mostly had PS's, about 1 or 2 a week. I had about 4 Tonic Clonic's in that time, all from extreme stress. From 2004-2007 I went into remission for some unknown reason, and didn't have any activity whatsoever.

Starting in September 2007 I started having PS's again out of nowhere. Since then I've had periods of between 1 and 6 per month. For a two month period (up until present) I stopped having PS's and only had TC's, mostly caused by stress but not enough that I'd expect to have one.

Starting on friday I had a strange PS which woke me up in the morning. It was almost like half a seizure, the after affects weren't as bad as usual. But I preceded to go through the whole day with auras, and had another PS at night, which wasn't that severe. So yesterday and today I'm feeling the same, kind of weak, shaky, and I'm feeling slightly detached.

It's hard to explain, but it's almost like I'm not feeling like myself and I'm just going through the daily motions. I feel mentally weak, like I could have a PS at any time. This is not normal for me.

I also had a PS at a hockey game last night, they were using strobe lights (even after the intro, what's up with that) so I had to leave. I've never had a possible photosensitive seizure before.

My epilepsy is caused by brain damage from birth. When I talked to my neurologist he said that epilepsy caused by physical damage is harder to predict and shifts in pattern can happen like this.

Also I'm on lamictal, 225mg twice a day. I recently had blood work done, and my levels are fine. I also had a MRI done, and nobody has called me with bad news.

Has anyone else experienced things like this? What should I do? What should I expect?

Is it a normal shift in pattern that may go away, or do I need to switch medication? Can it stop working just like that? I've been on it since 2003, when I switched from tegretol.

Thank you all for reading through this, I really rambled on. I appreciate all your help.

Chris

Hello Chris:
I have the same auras that you described. Feels strange and scary. Having auras etc means my seizures were not controlled. So my neurologist added Keppra on top of Lamictal - that's 2 medications I'm taking right now. And I'm still discussing other options with my neurologist. I suggest you discuss it with him/her too.
Best,
Annette

 

[Chris515]

Thanks for the advice everyone, and thanks for reading my long story.

It sure is frustrating how patterns can change, isn't it... and how meds can start working less effectively.

It makes it so much easier knowing that other people have gone through the same thing, so thanks for helping me out.

I talked to my neurologist today, I told him the whole story. He upped my meds to 275mg twice a day, and said that if things don't get better soon then he'll add another med for me.

I've had two PS's today, kind of annoying... especially during a meeting at work. ugh.

 

[RobinN]

IMO meds are only a bandaid and eventually you will need to change the bandaid.
You might consider looking into neurofeedback. It has shown some promising results even with brain damage. Trains the brain to use alternative sources.

Along with nutrition that controls the inflammation in the brain, might help you to turn your situation around.

 

[k2s4ever]

As a new person to E, I feel you. I have SPS with sole issue as olfactory auras only, (causes burning smell and distorts my taste). The olfactory symptoms started in early 2007, so whether that is when the SPS started or if I've had them longer than that, who knows. The pattern was very intermittent at first, burn smell would come on, then dissipate in a few hours. Then it started happening more frequently, and the burn smell was sustained all day, only being gone when I wake up the next morning, but has become a daily occurrence. This has been the pattern now-once the burn smell turns on (which I assume is the seizure onset), the smell stays all day, and now it's almost a daily basis. I just started on Keppra two months ago and I am seeing occasional days with no aura event. Just had almost four days in a row in the "clear" , but it's back today. It's so hard to tell if the medication is helping the SPS not occur those times, or if it's just the way it is regardless. and while my events usually occur in the morning, sometimes it happens in the afternoon, and occasionally the evening. the fact that the smell sustains lends further inquiry into whether it's an ongoing event, repeated "firings"?? Who knows! I'm thankful that I can function well despite this, but I get fairly fatigued by the end of the day. Whether that's just daily life or fatigue from a constantly firing brain neurons, again, who knows! I'm lucky that I don't have any other symptoms, and maintain awareness. Some people (in general, not other E folks!) might figure that a burn smell is trivial, but it does get wearing in its own right. And I also just hope I don't end up morphing to complex partials ever!! This is our brains, so we all have a right to be concerned about patterns and unpredictability!!