Hi. I am new to this community. I have a couple of questions, but first, I'll give you a little background. I have TL seizures which are partially controlled by lamictal and clonazepam. A neurologist and a psychiatrist have both seen me when I was having a seizure and assure me that I'm not crazy. In the beginning, often I just don't feel right or I hear music or have noise for a short time in one ear. Then I may have any of a host of other sx including deja vu, jamais vu, sort of automatic movements of my left hand and occasionally my right, slurring of my words or difficulty speaking, blurred vision, and specific/intense emotions. When I was in the hospital this summer for a C-section, I had a pretty bad seizure after they gave me IV benadryl (I didn't know it lowered seizure threshold and the staff evidently hadn't taken note of the seizure d/o in my chart). My seizures often last a pretty long time (anywhere from a few minutes to an hour or a bit more) and tend to come in clusters. Lorazepam stops them once they have started.

I have a couple of questioins. First, I had a 24-hour eeg- the kind you "wear" home a couple of summers ago when these first started in earnest. I had several seizures while hooked up, but they didn't show up on the eeg as seizures. Why was it normal during these events? I'm not crazy, mostly! and I'm not imagining the sx- honest! Trust me, I have asked myself and my doctor that over and over.

Second, I was wondering what others might know about seizures that last so long. What I've read talks in terms of minutes, at most for the seizure itself.

I'm asking partly b/c this all makes me feel really uncomfortable pursuing treatment more aggressively or going to see an epilepsy doc. I see a general neurologist who treats me for these and for migraines, but the seizures are only partially controlled and I'm having more memory trouble and low-level sx in between seizures, so I'm wondering if it would help to do more. But I'm afraid of what will happen if I tell them the 24 hour eeg was normal.

I'd appreciate any thoughts anyone might have.

Welcome, Ruby!

I believe at one point or another (many points, probably) we all have heard of or been involved in a horror story involving a Neurologist or someone of a similar profession questioning the sanity of the patient when it comes to not only Epilepsy, but many Neurological conditions.

I have felt crazy and I know I'm not alone. Sometimes you are happy to get bad results just to confirm you're not crazy. It's an awful situation to be in.

Sadly, I'm in the hospital right now and the internet kicks me randomly. I'll get back to you more on this tomorrow since I will be back home tomorrow afternoon.

Talk to you soon!

You're not alone, so keep that in mind.

Hi Ruby,
Welcome to the forum! I've had TLE for 34 yrs. and just like you I hear words, see colors flashing back and forth in my eyes, and find it hard to speak. I also have jamiaus vu. All of this happens right before I have a complex partial sz. but I learned from my neurologist yrs. ago the moment any of these symptoms begin to tighten up all the muscles in my body and make my hands into tight fists, by doing this it stops the sz.
I've had 2 brain surgeries to help reduce my sz. and I had to have a veeg that didn't show all the brain damage because the brain damage was in to deep in the brain and that may be why nothing is showing up on your eeg also.
If your sz. last over 15 min. or longer you are having a status sz. which is what happened to me when I was on neurontin. I would be in a sz. for 30 min. to 3 hrs. after I went off the neurontin the status sz. stopped.
Check out these website for more info.
www.epilepsy.com
http://www.neuropat.dote.hu/neurology.htm
click on epilepsy to get info.
Here's wishing you well and May God Bless You!

Sue

Thanks, Porkette and Ellie. It helps to know of others who have had similar experiences and to learn about helpful websites. I am so relieved when I hear about people who have had trouble getting a firm diagnosis or having seizure activity recorded by an EEG and have later been successful in getting good diagnostic data on an EEG or something else and treatment that helps. I'm glad stopping the neurontin helped you, P, but it sounds like you must still have a lot of trouble!

Thanks to both of you! If there are others of you who have experience with having EEGs that didn't show anything at one point(even when you were having symptoms), but eventually got EEGs that showed what was happening, I'd really appreciate hearing your story.

: )

Hi Ruby,
I can't complain even though I've had 2 surgeries to help reduce my sz. from around 300 sz. a yr. to 68 sz. last yr. I look at it this way a sz. only last a few seconds for me and then it's over and I carry on with what I was doing. The people I feel sorry for are those that have MS, are paraylzed, blind, or are in wheelchairs for life. Then I have something to complain about. As for the sz. I've learned to live with them and take it one day at a time. Here's wishing you well and May God Bless You!

Sue