Video EEG normal ???
avatar
ktexas1026 posted:
Hi all!
It has been so long since I have posted here… every time I tried to find where the board was that I had found a while back… I couldn't find it. I didn't remember that it was here at WebMD… first place I should've looked. LOL

Anywho… I had a quick question for those of you have been through a Video EEG (the week long in-hospital one). I am just finishing up my VEEG, after 7 days (they wanted longer but I was about to lose it & about to buy myself a ticket to the psych ward--haha). But the reason I was even sent to the epileptologist was b/c of an abnormal EEG (the 20 minute version). And my symptoms fit perfectly with temporal lobe seizures (absence seizures). I mean, to a "T", the doc said (and also what I've read in doing some reading/research on it). What I'm confused about is the fact that after 7 days, & a few symptoms, still nothing has shown up… even with the same test they did in the regular EEG that showed it was abnormal. It was the hyperventilation part of the EEG that showed possible seizure activity. The symptoms I have had while here, weren't major. They were things that are considered auras & possibly weren't followed by a seizure b/c I didn't have an gaps in time or anything.

And while I know that there are plenty of seizure patients who have normal EEGs, but just wondered if anyone had any first-hand experience with this type of thing & whether they usually stick with a diagnosis of seizures or is there something else that can cause an abnormal EEG? I haven't found much info on what else COULD cause an abnormal result… or mimic the symptoms of TLE on top of the abnormal EEG. I really wanted a clear-cut result so I can quit saying "if this is seizures". I'm just confused about it.

Also, on the medication subject… while here, they took me off the lamictal I was on, to see if I'd start having episodes. The one thing I did notice & I don't know if it's common either… as soon as they stopped the lamictal, I started having really strong twitches… arms, legs, torso, etc. It feels like when they check your reflexes & you have no control over it, it just happens & in lightning speed (before you can even tense up to stop it… although, I can feel it coming in the split second before… it's very bizarre). But it makes me laugh, just like when they do my knee or foot…b/c it's just bizarre to feel your body do something that you didn't TELL it to. LOL Anyway, I wasn't sure if anyone knew much about that. The twitches have calmed down quite a bit since they put me back on it this morning (and night too). It also causes me to twitch when they touch my arms while my eyes are closed… which I think they called the startle response. I've never felt that before.
So, just checking in for any insight you guys might have. Hope you all are doing well, & hope to stick around more this time… and I bookmarked the forum so I won't forget how to get BACK here. haha
Thanks,
~Kim
Reply
FirstPrevious12NextLast
 
avatar
hawiian_girl11 responded:
Aloha,

First of all TLE and Absence don't go tppgether.

TLE is a type of Partial sz effecting the temporal lobe on either side of the brain.

Absence szs are a form of Generalized szs and effect the ENTIRE brain at one time. Both sides.

Hyperventilating is generally used to provkoke Absence szs and cab be done right iin the doc's office no EEG needed.

Although they prefer the usage of the EEG so they can catch it so they can give you the right meds for it.

I was in 2 VEEGs one with one doc and then 3 yrs later eith the neuro I have now. The first one was inconclusive and the seoncond one I had 2 staring spells and then 3 major Complex Partial szs all of which had to be stopped with IV Ativan.

The very first neruo I had dxd the epilepsy as Anteior temporal Lobe Epilepsy.

I have had several szs in my docs offices and now have a VNS implant that was put in on sept 20 of 07.

I take 800 mgs of Lamictal, 200 mgs of Topamax, and 3 mgs of Klonopin.

I have had all abnormal EEGs with the exception of ome. he took one a yr ago that came back clean then did another ambulatory one and it once again came back abnorama. my szs are intractable. HARD to control...and stubborn.

Good luck finding what you need.

Nancy
 
avatar
dancer86442 replied to hawiian_girl11's response:
Good Morning,


Nancy Temporal Lobe Seizures Can include Staring. Do Your Homework!
March 26 Epilepsy Awareness Day Advocate
 
avatar
dancer86442 responded:
Good Morning Kim.


Good to see you found us, again. I am Happy to hear you Bookmarked our Group & will visit us more often. As you can tell, our group Needs a few Steady/Regular Members.


I, personally, have never had a VEEG. Only reg & portable. All regular EEG's came back 'norm'. Portable (done about 5 yrs ago??) showed a New Syndrome known as Continuous Wavy Line Syndrome. Gran Mals in my sleep w/ no Apparent activity. So, enough about me.


My Daughter has been in the EMU 3 times. 2nd time, her tests showed No Activity. So, it Can Happen. Did you know that Auras are considered Seizures, too? Go to the bottom of this page & visit the Epilepsy Center. I saw a med recommended for TLE, too.
There was no Info about TLE & Absence Seizures on this page. So, I did a Yahoo Search & confirmed that TLE does cause 'staring/absence' episodes. So, you & DR are rite.


When they took you Off lamictal, the twitches may have been due to withdrawal. But, from your reaction/description, I suggest you do some Homework about Reflex Epilepsy, too. Hugs


Love Candi
March 26 Epilepsy Awareness Day Advocate
 
avatar
ktexas1026 replied to hawiian_girl11's response:
Well, the fact that my memory has been severely affected by whatever type of seizure is going on, I'm sure I can't remember the exact wording used by my doctors to describe what's going on, & may even be confusing it with things I've read in doing research of the various types of seizures. And it's possible that I am confusing the different things my doc has wondered aloud, and that I have incorrectly assumed those things were related to each other. I DO remember though, that in my abnormal EEG (the one that's only 15-20mins long), is that the abnormal activity was seen in the temporal lobe, & as soon as I read your "anterior temporal lobe" part, I immediately remembered that being on my report as well. I have googled the temporal lobe & looked for anything that distinguished the different "areas" of the temporal lobe, but couldn't find any info other than them referring to the entire temporal lobe. Of course, I still haven't figured out what this means for ME, or what they think is going on during that "abnormal" activity (I mean, obviously I''m not having a grand mal or my family/friends would've told me by now--LOL).
 
avatar
ktexas1026 replied to hawiian_girl11's response:
Also, Nancy, I forgot to say"026 that I could very well be the one calling them absence seizures since I thought people with seizures either had the grand mal type (where those around you are aware that you're having a seizure), OR absence seizures"026 where no one around you knows you're having a seizure, & neither do you when you're in the middle of having one. I was thinking that any type of seizure you may have that is unknown to you or those around you, I was thinking those were considered absence seizures no matter where in the brain they begin. But clearly, I know very little about seizures as I have only started having them in the last few years. What little I know about what's going on with ME, is that my symptoms are virtually identical to TLE symptoms"026 and that no one around me is aware when something is wrong. And even I am not aware until later when I try to recall certain things
 
avatar
ktexas1026 replied to dancer86442's response:
I thought I posted a reply to your comment Candi, but it disappeared I think. Ugh! Anywho"026 I will definitely do some reading on reflex epilepsy, I want to know all I can so I don't just have to take what the doc says & HOPE I know what's talking about. LOL And I was wondering if going of the lamictal so quick could cause that twitching. It's almost gone now that they put me back on it.

I think my main issue is that no one seems to say with 100% certainty that it IS seizures, so that made me a little curious about the VEEG. I thought for sure something would show up if it is in fact seizures. And I didn't think you could have one test be "abnormal" & then another be "normal", but seems like from my reading that it can happen that way"026even in people who have KNOWN seizures.

As for the VEEG, if you haven't had one, I don't recommend it. LOL I think the main issue is that I wasn't prepared for what it really entails. I took plenty of things to do to keep me busy, etc"026 but I wasn't prepared for being confined to the bed all day, with all the rails up & PADDED, & having to have a "chaperone" in the room before you went to the bathroom. It was isolating to say the least & I'm a talker so I wasn't fully prepared for that. It was the longest week that I can remember ever having. They didn't get much activity while I was there, which made the whole thing pointless to me. And THEN they told me about the ambulatory EEG that you can do at home. I had a feeling it had a lot to do with the fact that I was out of my normal environment & things like that"026 which they agreed can happen too. Oh, & I forgot to throw in the PMS that I was having the entire week too"026 I'm sure that didn't help matters either. haha But yeah, I really want to know that it's seizures, for sure, before trying other meds"026 like pin the tail on the donkey. But if there are meds that are geared more towards absence seizures, I'm very curious about those. Also, I call them "absence" seizures b/c I've never had a full on seizure.

Annnnnyway"026 I will definitely be around to learn all I can from you guys. It's good to have some sort of support system with people who have already been dealing with similar issues. I have googled a lot of things that I've noticed with myself (symptoms,e tc), but it's nice to talk with other people who might have the same issues b/c there is way more info through experience than there is from research articles.
~Kim
 
avatar
dancer86442 replied to ktexas1026's response:
Good Morning Kim,


The Epilepsy Center had photos of the different Lobes. I Think it explains what each Lobe is for, but, doesn't explain what Types of seizures are caused by the different Lobes. Which is why I used my search Engine.


You replied to Nancy Twice. Maybe you meant one of those replies for me??


The problem w/ Absence seizures, is that they Can happen so Fast & be done w/ in Seconds, so that others' may not notice. Or they are unaware of what to take note of.


I have no plans to visit an EMU! I would have to travel to Phoenix, which is 10 hrs away. My Daughters' experiences & that of others' was similar to what you experienced. BOREDOM! Big Time! Yep, my daughter disliked being supervised to use the restroom, too.


Kim, if they even picked up a small amount of seizure activity, then your stay was Not pointless. As for PMS, you do realize that Hormone fluctuations can be a trigger for seizures, Rite?? We have Info in our Resources about Catamenial Seizures. But, I agree, the portable at Home test is preferable to being confined to a bed. My meds confine me Enough! I would Hate 24/7!


Memory Issues. Well, that can be an 'either/or' Issue. Meds can have just as much to do w/ it as seizure activity.


Do yourself a Favor! Either take a Journal w/ you & note what the DRS say OR better yet, take someone w/ you to your next appt. 4 ears are better than 2. Especially, when ya got memory Issues.


If I missed any Questions/comments, let me know. I gotta go for now. Hugs!


Love Candi
March 26 Epilepsy Awareness Day Advocate
 
avatar
clarinet2 replied to dancer86442's response:
Wonderful response Dancer! A
 
avatar
dancer86442 replied to clarinet2's response:
Well, Thank You, Dana. Only an A??? Shucks, I was aiming for an A .


How are you Doing??? Still Cold up there?? We have 80% temps & I am Loving it! Although, I Know I'm gonna Hate the Heat that will Soon be upon us here in AZ.


Hope you have a Great Day/Week/Month/Year. Hugs!


Love Candi
March 26 Epilepsy Awareness Day Advocate
 
avatar
dancer86442 replied to dancer86442's response:
Hmmm??? My Pluses didn't appear after the A. Weird! So, Aiming for A PLUSSES.
March 26 Epilepsy Awareness Day Advocate
 
avatar
ktexas1026 replied to dancer86442's response:
LOL. You definitely get an A . Thanks for the great information. I forget there is such a wealth of info here on WebMD. I did know that for women, seizures could be worse or more frequent around that time of the month, but had no idea there was an entire group of seizures for it. Very interesting"026well, not for those who have them just at that time of the month.

And yeah, I do try to bring my notebook with me to my appts, of course I don't always remember. LOL And my doc did say that about the meds causing some memory issues"026 which is so weird to me b/c THAT'S my biggest issue with these things. LOL
But I'm very glad I "found" you guys again, b/c I think the best information for anyone, is the info you learn from other people and their experiences. Oh man, did I say that already??? If so, I apologize for repeating it.
Hope you all are having a great weekend"026 I'm going to go lurk around the other posts.
~Kim
 
avatar
dancer86442 replied to ktexas1026's response:
Hi Kim,


Yes, WebMD has a wealth of Info. Our last 'Monitor' cleaned up Helpful Resources. Removed almost all the sites/Info me & others had shared & replaced it w/ Their Info. I still got a few on there left untouched, though.. I think the Best asset of Info we have is Pinned to the Top Discussion. 'Weblinks for Epilepsy.' I wouldn't recommend the Site/support group posted, though. It is run by a Former Member, who, granted, had a Lot of Info & was a great Help/supporter for YRS. But, he left due to, well, lets say An Attitude Issue. He was so mad at me, he even Banned me from his group.


Yes, the experiences of others' is educational, but, doesn't always apply to Everyone. As you can see by the New discussion Posted. So, we dig a little further for answers for them. The Net w/ it's Search Engine has been a Great Tool for me. But, I wouldn't know What to say if I didn't do my 'homework' as well as Listen.


Memory Issues: According to WebMD the best 'cure' is to take a walk around the block. It does more for the Brain, then playing games. Although Lumosity?? would disagree. They think their games works Wonders.


I am still learning from others', though. Last nite I was on a FB Group & a lady asked if Lack of sufficient vitamin D could cause seizures. I knew I had read that this was a Common Issue for Women w/ Epilepsy. That it could/would cause Depression. But, didn't believe it would cause seizures. So, I told her that. But, something made me go back to My Group on FB (few members, but, Lots of Info I have shared. ) & look for a related article. Sure enough, there it was in black & white. It Can cause seizures, too. So, I 'shared' the Info w/ the group/her & apologized for my mistake. On my Old comp, that crashed, I had hundreds of sites/info saved. Now, I save my Info in EP Land on Facebook. It won't get 'lost' there. BTW: I used to call this group Epland & a former member found me on FB & created the Group for me, naming it after this Group. I'm not like the Other groups. I don't care How many members or rather lack of members, I have. I rarely even tell anyone I meet. I don't want the Drama that other Groups have. Yesterday, 2 of the Groups had Issues & although I was there to Help calm things down, it reinforced my decision to keep my group/page Small & just post the Info I find.


So, now that you are back w/ us, will you Help me Support the 'newbies'? If you don't have Answers for them, at least say Hello, Make yourself at Home. Or whatever words you want to use to greet them. Your Welcome will give them more of a sense of Community. PPL like to Know 'They are not alone'.


So, that said, I will end this, until we 'chat' again. If this post gets too long or you want to introduce another Topic, just start a New Discussion. Lots of Love & Hugs! Yes, I am having a Good Weekend.


Love Candi
March 26 Epilepsy Awareness Day Advocate
 
avatar
ktexas1026 responded:
Hi Candi,
I have been trying to reply to your last message since yesterday! WebMD kept telling me to log in, & then as soon as I clicked on "reply", it asked me to log in AGAIN. Ugh. LOL

Anywho"026 yes, I would love to help welcome newbies. You're right, it does help just knowing that you're not alone & hearing the experiences of someone else. Even though I'm usually a Google-holic (LOL), there are usually things that are just better off hearing from someone directly, than reading a medical article.

And I know what you mean about each person/seizure being different. I have found that out just in researching for myself & what things I have trouble with. I found out real quick, that there are some symptoms that are the "hallmark" of seizures, but not ALL people with seizures/epilepsy have all those symptoms"026 and they sometimes have symptoms that aren't part of the "typical" seizure description. For me, I have been lucky to find info here & there on the "weird" symptoms that I didn't think were related to seizures"026 until I found an article or something with someone having the exact same symptom, & they have documented seizures & a clear diagnosis.
I am so glad to see there is such a group as this that can be an outlet for what people are going through, or to find info on the experiences of others.
~Kim
 
avatar
dancer86442 replied to ktexas1026's response:
Hi Kim,


Log-in suggestion. Wait until you are logged in & then save the site as 'Fav'. Oh, plus, if you want to, there is a box under the log-in that you can check. Stay Logged In on this computer. BUT, Sometimes, if you are gone for 'days/weeks' it will ask you to log-in again. But, asking Twice?? That's New to me.


Nothing wrong w/ Google or Yahoo Search. That way you always have a Link to back up what you say. If need be. You can always Add to Tips or Resources, too. Yes, you summed up what I have learned, too.


This Page/Group was a God-Send to me, 20 yrs ago. I vowed to 'Pay It Forward' & Stay on. I have spread my wings to include other groups. But, this is Still 'Our Home'. A Home for All who need us. PPL come & go, but, they are Always Welcome in this House. It makes me Happy that you wish to live here w/ me & the Family. Hugs!


Wear Your Purple Today! Global Epilepsy Awareness Day is Here!. Tell a Stranger a few facts & Proper Seizure First Aide.


Love Candi
March 26 Epilepsy Awareness Day Advocate