My new neuro, whom I like alot but whose diagnosis of epilepsy I still don't believe, asked me if I'd consider having a VEEG. I said I wasn't sure. Then I saw Ellie's post, pics & blog. Now I'm sure: Hell will freeze over first before I do that.

Oh my goodness, no! I don't want my 'journal' to sway anyone from getting any diagnostic testing. However, I'd like to put out how it really goes so you can be better prepared. It's kind of like when the doctor is about to poke you with a needle and says, "You may feel pressure." No - it's not pressure, it's a needle stick.

Many in the medical care field feel the need to sugar coat things when it's really not necessary. It's worse when the experience is not what we were prepared for and we're left in discomfort and rather upset about the whole ordeal.

Even small things, like I should have been told to wear light cotton. I always wear fleece jammies because I'm normally anemic and just don't hold heat well. I didn't think I'd end up sweating badly or be on that exercise bike for 30 minutes. The fleece and sweat combo. caused me to break out in hives which then they gave me benadryl on the sleep deprivation night. That was un-fun!

Anyway, Heather, if you are unsure of your diagnosis this really is one of the better tests to get. But as mentioned, it is kind of a hit or miss. It seems like our brains know when they are being watched so they don't misbehave. Hehe.

Please don't let my Truth Tales sway you from getting your testing done, I'd honestly feel horrible. Just get the test done but think of my story and make sure you bring cotton pajamas, lots of entertainment providing gadgets, first aid cream, leave-in or spray conditioner (and a hat!), etc.

*hugs*

I agree with Ellie. I've also had a VEEG done. You don't have to bring just your pajamas. You can also bring daytime clothes to change into. The pictures that Ellie showed are just what happened to her. If you are having all kinds of seizures, it's good to have a VEEG done because this will show your neuro/epi a better idea at where your seizures are located at. If you are a candidate for brain surgery, this type of EEG will show more than the regular EEG at where the seizures are located at. This is just another beginning step for brain surgery if you go that way.

Becky

Ellie -- no guilt -- you really didn't "sway" me against a VEEG. I was listing in that direction, and at a strong tilt, anyway.

A brief history, if I can keep it brief. My first event was in the spring of 2003. I was on a plane to Ireland, 3:30 am Irish time, and then I was in Shannon airport at 11:30 am, with no memory of anything in between. I somehow got off the plane, through immigration, baggage carousel, etc. with no knowledge of it. When I came to I was trying to buy a ticket to NY. The agent asked me my name and I said I didn't know (nor did I know I already had a return ticket or that I could have looked up my name on my passport or driver's license). Nor did I know that my whole face was covered in blood; I apparently fell at some point but I don't remember that either.

Was I freaked out? Oh, just a tad! Back in NY, I got sent to a neurologist whom I thought was eccentric, to say the least. He hears the airport story and says, "CPS" for sure. I have an inconclusive MRI & EEG and get put on 300 mg of Neurontin, which made me sleep all day. Quit drug, go to new doc, Orrin Devinsky at NYU (a celeb in epitology, it seems); he hears the story and says "CPS" for sure. Writes a script for Dapakote (which I never fill).

Then in researching this new ailment I discover BrainTalk. What a fabulous site that was for me. CPS? Seizure lasts 2 - 4 minutes. Nothing even remotely close to 8 hours. Don't have a clue who you are or what your name is after the episode? Nope, that doesn't happen. From everything I read on Braintalk, and all the links, you don't remember the E event but you do know that your name is Peggy Sue and that you're in Graceland, for example, when you come out of the seizure.

So I gave up on the epilepsy route. Everything was fine until this past year. In Nov I wake up to find I have peed all over everything in my sleep one night. That was a first for me, and ugh! In Feb I wake up with excruciating pain; I have somehow managed to break a rib in my sleep. I am not a sleep walker and nothing in the apartment was overturned or out of place.

To humor this new neuro, whom as I said I like, I went for and MRI a few weeks ago. It showed some sort of tangled up jumble of blood vessels in the left temporal lobe, and am going for an MRA tomorrow. We'll see where that leads. Have filled my neuro's script for Keppra, but haven't started it yet.

Sorry, I seem not to have kept this short. But I must ask you one question, Ellie. How in god's name to you manage to look so gorgeous when wearing a beehive on your head?

Heather

Oh my, it sounds like you have gone through a rough time. Did they happen to suggest seizures and the memory loss being due to hitting your head during the seizure? I've had a few episodes where I lost track of time (forgetting how I got home, things like that) but nothing to that extreme as you have mentioned.

As you said above, what they found on the MRI could be what's triggering seizures and the other problems. I would highly recommend getting the VEEG mainly so they can monitor you while you sleep since you appear to be having some form of nocturnal seizure (or an event that's similar). Even if it's just a 24 hour study, it should be enough to get a good solid read while you're sleeping.

Make sure to keep us updated, I'm very curious to see what the formal diagnosis is. And even if it's not Epilepsy, this forum isn't just for Epilepsy - so make sure you stick around.

PS: Thanks for the compliment, all of that stuff on my head didn't make me feel very pretty. Hehe.

Okay, and you didn't mention that you're also psychic . . . I had just pushed the "submit reply" button, checked to see that it went through and you were already there.

No, fall in airport was never in question as to memory loss. I fell on the front and split my lip wide open. At about 9pm that night I called the local emergency number because my face had become so swollen -- you couldn't tell where my nose ended and my mouth began! The doctor at the clinic said get here whenever you can. A friend drove me down to Ros Muc, about 40 minutes from where I live, and sure enough he had the clinic open for me. This was a Saturday, around midnight, in the remote west coast of Ireland! Anyway, he said I must have fallen outside because my lip was packed with gravel. He cleaned that out, gave me a tetnus shot and took my blood pressure: 205/185. I somehow think that had something to do with with blackout. Or as my indifferent doctor in NY said, "I'm surprised you didn't stroke out." The MRI showed that was not the case, and I have a new, truly wonderful doctor now. And am on BP meds.

Will keep you posted, for sure. Was supposed to have a sleep-deprived EEG this Friday, but cancelled it when I got wind of a surprise party my students are throwing that same day. What a surprise: teacher shows up staggering with exhaustion and hair covered with revolting gunk. Bad planning.

I'll do it next fall when I get back from the summer vacation.