Hi I'm Cat.

I started having seizures in Nov 05 at age 35. Didin't it know it then but was eventually diagnosed since then I have been through local general neuro guy and was then sent after my license had been taken away (grr another story though) to epileptologist in Richmond. HATED him he was rude to my Mom!! who had come 16 1/2 hours to be with me since DH was deployed at the time. Not to mention he never closed his mouth long enough for me to get a word in edgewise and his answer was here lets put you on more meds. The straw that broke the camels back was the nightmares followed by a hallucination which the new spec said was caused by the med combo and an antibiotic. lovely, not....

anyway new spec is in Charlotesville, VA absolutley love him, great team of folks inc students. ACTUALLY listen!! Went for my 2nd appointment with him last week and he wants to do VEEG since EEG and MRI are neg but I am still having breakthrough seizures and I seem to have some sort of mixed type absence and complex partial. oh and of course every now and then I start vomitting for no particular reason or get major headaches jury is out on what is going on there. Perhaps abdominal seizure vs. migraine variant.. yeah...

At first I was thinking no way last guy wanted to do this (endocrinologist) said lets put you in go cold turkey no meds and no food or drink for 72 hours mind you this was less than a week before DH was deploying so the answer had been NO with afew choice words added silently in my head and no so silently later while fuming to my DH.

So now I have run the gambit of yes finally some answers, a concrete died in the wool this is what you have and here is what we can do about it to no way don't have time or patience for this to now what happens if I don't have a seizure. What if I am crazy and this is all in my head or not crazy but they think I am becuase I the guinea pig didn't do the right tricks while being studied in the lab. What if I have a type that requires meds that make my teeth fall out or hair grow all over my face. What if they take my license away again...

So as you can see I have manged to talk/think myself in circles many many circles.....

Hi LCat,
Just like you I have both absence and complex partial sz. Before I had brain surgery done I had a veeg where the electrodes were directly on my brain and I also had an MRI, CT scan, wada test, and angiogram. The tests showed that I had a scar on the right temporal lobe of my brain that was causing my absence sz. but it wasn't until surgery was done that they found more brain damage on the left side of the brain that not a single test showed because it was to deep in my brain and this could possibly be the problem that you have.
When I have a cp sz. I start out by seeing colors flashing back and forth in my eyes and I get a nervous feeling in my stomach then I sometimes hear one word repeated over and over again and I get muscle spasms around my mouth. After that I blank out and I sometimes will wander around the house or work. One thing I've noticed is when I'm having a cp sz. if I'm holding a cup of coffee or tea in my hand I always drop it and spill it all over the place.
My epi told my that cp sz. are the hardest type of sz. to control. I've found that the moment I start to get the nervousness in my stomach and see the colors in my eyes, then I tighten up all the muscles in my body and make my hands into tight fists by doing this it stops the cp sz.
I see you live in my favorite state. I love Virgina Beach. Here's wishing you well and May God Bless You!

Sue

Hi Cat ~ I had my last VEEG just last month and things went just fine. I think it will go fine for you too.

I've never heard the going w/o food and medication for 72 hours business but that doesn't mean anything. When I have my VEEG, the epi reduces my medication as quickly as he/she thinks is safe.

They learned that the color stuff that so affects Sue doesn't bother me a bit, but hard work on a stationary bike throws me into cp seizures - lol. Coffee and diet drink don't bother me but that stationary bike .........

ANYWAY - the VEEG is long and boring but you'll be OK. It teaches the epi and other doctors so very, very much that it's almost a miracle. It's a GOOD thing.

p.s. -- I had some major surgery a week ago and I'm fuzzy. If I make no sense, I apologize.

LCat,

First off, I'm sorry for anyone who has to go through this and want you to know that you're in the right place when it comes to getting help from people who understand.

I'm sure most of us would be kidding ourselves if we haven't thought we were crazy before. I had a very bad seizure once that I was awake for most of it, and it was the worst experience of my life. Bad enough that I freaked out and called my Grandmother to tell her how awful God was if he existed (had a small meltdown). After time passed, I thought maybe it was a dream or it didn't happen, etc. I do this a lot, even on witnessed seizures.

When it comes to medications there typically aren't specific medications set up to match specific seizure types. It normally depends on the frequency, severity and things of the like. You do have a say in things, too. Never forget that. If your doctor were to suggest, for example: Depakote. It is known to cause hair loss and/or weight gain. You could ask if you had any other medication options. Then compare the pros and cons of each type and make a decision with your doctor. You also need to keep in mind that while some may cause appearance disturbances, others aren't very kind to your inner organs. You should be certain to get all information regarding side effects of each medication including LONG TERM side effects.

If you do get prescribed something that is more commonly known to cause tooth problems, ask your dentist or your doctor how you could help protect your teeth better. We also have a forum here for dental related issues with some members working in the dental field so they should be able to assist you, as well.

Regarding the drivers license, it's something none of us want to let go. But it is a situation we have to trust our health care providers to make the best decision for our safety and the safety of those around us. I'm aware I can have a seizure at any time, but since I have auras I can use my best judgment and I will never leave home unless I'm well rested, well fed, and have not had so much as a small headache for at least a week. I don't think any of us could live with ourselves if we were to hurt someone else while driving because we wanted to keep a hold of our independence. It's very, very hard to let go of your driving privileges (or maybe it was just for me, haha). But I had a few people point out that I could hurt myself, someone else, or in the worst case scenario - kill someone. So I had to just suck up my pride a little and try my best to follow my doctors orders until my seizures were better controlled.

Once I did that, I was able to get some driving priv's which is better than nothing.

Keep your head up! You're not crazy. This is completely natural to feel this way. Anyway, I'm babbling but just wanted you to know you're not alone here.

he wanted to see if low blood sugar was causing seizures. I don't think color affects me either but then I guess I will find out. You are right just hope they get all the info they need and that should make it worth it. Cat