Not newly diagnosed but slowly digging my way out of denial.

[sunnybunny]

Not sure where to start so I am just copying and pasting my "about me"

Complex Partial seizures. First my vision gets super clear and intense. Then things start to look a bit distorted like the bookshelf is the correct size but the books themselves are too big. I get a tingly feeling in my head and kind of a rush. Almost feels like when someone jumps out and yells boo! I am aware that people are talking to me but they sound almost far away or like I just can't process what they are trying to say to me and I can't answer them. Then it just fades out and everything goes back to normal. I usually have to pee really bad right after and then I get a headache that sometimes lasts 3 days. I also have a strange eye movement. My eyes feel like they slam to the right really fast and then go back to normal. I'm not sure if that is part of the seizures or not but it drives me crazy! I tried Topamax but I lost my vision for 4 days. I tried Lamictal but felt like a walking zombie and it didn't work. I am on Keppra right now and doing really well as long as I don't miss any doses. I am struggling a bit with some depression which is new for me.

 

[Endless]

Hi, Sunnybunny!

Welcome to the forum. I'm glad you found us.

I understand denial. I was in and out of it for months and it took lots of forms, including digging for impossible cures and causes. After being tested for everything under the sun I've kind of resigned myself to the meds now, which I think is an important step for most of us.

Did your doctor say where your seizures are happening? They sound like Temporal Lobe Seizures. That's where mine come from, too. Though, it sounds like you may be having simple partial seizures, not complex partial. Complex partials involve an alteration of consciousness or memory, partials don't.

I also get the garbled language, size distortions, super sharp vision. Trawl around in here and read the posts. You may recognize other kinds of seizures that you didn't know were seizures. I did.

I'm glad you are getting along on the Keppra. Finding the right medication is a huge task, and I'm hoping the Keppra will be the last AED that you ever have to take.

Hang in there.

 

[sunnybunny]

Thanks for that! I had an EEG. They only said "nonspecific abnormality" and they said presumed complex partial probably in posterotemporal lobe. And excess Beta throughout which they said was strange since I wasn't on any meds at the time. I don't really know what any of that means but I'm trying to sort it all out. I was reading the online stuff and I also thought it sounded more like simple because while my memory of the events are usually fuzzy, I do remember them most of the time. I have rarely had a few episodes at night where I woke up feeling like I ran a marathon. One time I was missing a chunk out of the right side of my tongue. I'm not sure if that was a seizure or not. Mostly the eyes slamming to the right side of my head is what bugs me on a daily basis. Ever heard of that? I counted one time before I started meds and it happened up to 60 times in one day. It is down to a half dozen or so now that I am on Keppra. Any thoughts? Thanks in advance!

 

[Nakamova]

Hi Sunnybunny, welcome!

The eye symptoms you're having may be a sign that your seizures originate near the occipital lobe (which is the command center of the visual system).

Here are some of the symptoms associated with occipital lobe seizures:
Visual hallucinations/illusions
Blindness or decreased vision
Image repetition (a visual image is replayed over and over)
Sensation of eye movements
Eye pain
Involuntary eye movement to one or other side
Nystagmus (rapid involuntary rhythmic eye movement, with the eyes moving quickly in one direction (quick phase), and then slowly in the other (slow phase),
Eyelid fluttering

Occipital lobe seizures are often treated with Tegretol, but it sounds like the Keppra is working for you, which is great!

Are your seizures triggered by anything in particular? Are you photosensitive?

Best,
Nakamova

 

[Mlrisser]

Hi Sunnybunny,

I'm new here too! I just found this wonderful group of people and even thought I knew better I always felt like the only parent in the world going through this. My daughter just started on Keppra 500mg 1x daily to be increased to 2000mg daily. Even as a parent of a child with ep I was in denial and I still 9.5 years later struggle with depression and anxiety about it. It does get better but I am not sure if it ever goes away. Best of luck to you!

 

[sunnybunny]

Nakamova,
Would computer screens and things of that sort fall under photosensitive? I do okay with the computer moniter but I do find that the ipod screen tends to set me off. The eye symptoms are definitely ringing a bell with me! Thanks so much for posting that.

 

[sunnybunny]

Mlrisser,
Thanks for the encouragement. I'm a mama too and I would much rather it be me than any of my kids. I can't imagine the stress of watching your child go through it. I actually was diagnosed in 2006 and am just now coming to terms with it. I have been telling myself that it is just migraines. The Neurologist finally got firm with me (after a 21 day "migraine") and said that the seizures are triggering the headaches and the headaches are triggering the seizures. I guess I'm a bit thick! I hope that your daughter finds some relief with the Keppra. I have had very few side effects. Just some tiredness, a bit of depression, and I did lose about 25 pounds from lack of appetite! I started eating breakfast and dinner before I took the pill and that helped a lot. My weight has evened out. Again, I hope she does well!

 

[Nakamova]

Hi sunnybunny --

Computer screens can definitely trigger seizures, along with fluorescent lights (Wamart seems to be a typical seizure location), strobe lights, flashing sunlight etc. Different vibration/wavelength rates affect people differently -- I wonder what it is about the iPod screen for you, and whether that's something you can modify. Some people wear tinted glasses in order to minimize their photosensitivity -- maybe that would work for you.