Hi I'm New Here, Frontal Lobe Epilepsy

[Lvjstn]

Hi to all, my name is Karen, I'm 41 with wonderful 22 year old daughter and a very supportive husband. I'm new to all of you but I have to admit you are all like family to me already. I've been a CWE follower for about 6 months and finally decided to join. I've had left frontal lobe E due to head injury for 10 years and it had been pretty well controlled but it has been out of control the last 6 months.

When I found this site it really helped me feel like I was not alone in dealing with this. E can present some really unusual symptoms & challenges and unless you have it, it is hard to explain to others, even doctors sometimes, but when I came here, I felt right at home. I have a very positive attitude and a great sense of humor. I'm a newlywed, 9 months, told my husband I was testing those for better or for worse vows out right away!!

 

[skillefer]

LOL...welcome Lv! If you have any questions, feel free to ask. If you just need a place to vent, there's the padded room, and feel free to chime in at any time.
Congratulations on being a newlywed. I remember that first year....it was fantastic. And I'm sure your hubby will pull through this like a trooper.

 

[Lvjstn]

I would like to know if there are others on here with frontal lobe E

 

[Lvjstn]

More important, thanks for the welcome. geez.. it's past my bedtime.

 

[ashmstng]

Welcome Karen~
I hope you enjoy the CWE Board as much as we do. You will meet alot of wonderful people that has helped me when I needed it. So if you have any questions just ask and I am sure someone will answer you. Also, Congratulations on being a Newlywed!

 

[Lvjstn]

Thanks! I've been an observer for months and it has been very informative and humorous at times! :roflmao:

 

[Bernard]

Hi Karen, welcome to the forum. :hello:

I'm glad you decided to "take the plunge" and participate. The rewards of adding your voice compound with every member.

Make yourself at home here.

 

[josieb]

Hi Karen: I don't have Frontal Lobe E, but did want to welcome you. Congrats on both your recent marriage and for joining the group. Like yourself, I was a reader for a while before finally becoming a member. I'm so glad that I did - it is a great group of people.
Sincerely, Josie

 

[brain]

:hello: LV!

Welcome to CWE and glad to have you here!
I have F L E and it basically it just means
that the seizures comes from the front section
of your brain. Fronto-Lobe Epilepsy is what it
means actually. Those are more harder to detect
on EEG's, but they DO get captured.

A seizure is a seizure is a seizure, no matter how
you paint the canvas and it's a major PITA!
(Pain in the a$$!) Regardless of what type of
seizure it is, some can be controlled with meds,
some by surgery, some by alternative methods
in which Neurofeedback is really being considered
as an alternative resource. Then some goes away,
some are reduced by diet, some vanishes and never
to appear again - or years later comes back to haunt
them. Some are genetic, some are not, some are
unknown reasons, some are result of injuries, some
are result of man-made events, some are result of
viral invasions, and things just goes on and on from
there ...

Unfortunately there's a 50/50 in the area of Head
Trauma / Injuries - there's a greater chance of recovery;
for people with head trauma / injuries even though they
had sustained Epilepsy, but in the self same threshold,
there are those who are in an unfortunate position;
are STUCK with Epilepsy (and other head injuries that
may also include things such as paralysis).

With that having been said - I have both, was born
with it (neurological) and sustaining head trauma
from MVA's for added insult as if I needed more!

You can click on the Epilepsy Foundation logo below
to learn more ... then there's an organization as well
for those with head trauma ...

We Are TBI

(You can contact Angela R. there, who is a Main Moderator,
and let her know Sharon / HeadStorms - had referred you
to her ~ She knows who I am)

And there you will find additional resources and info
there as well. Hope this helps too.

 

[RobinN]

Hi Karen - glad you decided to join us.
Thought you might be interested in looking at this info.

http://www.eeginfo.com/research/headinjury_main.html

 

[Lvjstn]

Veeg

Thanks for all the warm welcomes! I hope everyone had a nice Thanksgiving.
Sorry in advance for this post being so long, I just need your help/advice/anything!!

Had an abnormal EEG Left frontal lobe, when I was first diagnosed in 1999. MRI's normal. Had a closed head injury months earlier and my doctor at that time said that was probably the cause. He prescribed meds and sent me on my way. I had a few break throughs usually due to flu etc. Ended up switching doctors after about a year due to distance.

Loved new doctor. But within the last two years my seizures started changing, facial numbness, right eye drooping, thumbs curling back, severe headaches, more grandmals. He did another EEG and MRI, both normal and upped Lamictal. Upped it so much that I was seeing double, couldn't walk hardly, running into walls, I called his office several times (scared of course) and no one ever called me back. A few months later I had a grand mal at work and a trip to the ER, called his office explained what was going on and was told I would have to wait 3 months for an appt. Had another one the following week, called again, only to be told, sorry he's booked, we can't get you in any sooner than 3 months. Ok, time to find a new doctor.

New doctor saw me right away, August 2008, seems very concerned, ordered EEG, MRI, all normal. Full blood work up, all good. Had EKG at ER. Took me off Lamictal, put me on Keppra and Topamax (for migraines). Keppra is not for me, caused anger and moodiness. On to Carbatrol, when I got up to 900mg and was still having seizures she just switched me to Depakote ER 2000mg (only at 500mg right now, just started it Friday) I have had serious memory problems in the last 6 months so she sent me for cognitive testing a few weeks ago, I get those results next week. I don't have a good feeling about the results. My question is, could it be the meds or is it from seizures? Neuro. says prob. meds. causing memory issues, Neuro-psychologist who did cog. tests says meds wouldn't cause that?

The seizures I am having now are; All of a sudden I will get a headache, confused, hard time understanding others, right eye droops, nausea, often I will try to speak but can't, it doesn't last long though. Or my mind will know what it wants to say but when I open my mouth it comes out all wrong. I get a creeping numbness feeling on the right side of my face and in my right arm. Headache, followed by an overall odd feeling and then nausea and then I get light headed and a loud buzzing sound and I black out. In my sleep I am breaking teeth, husbands says I am stiffening up, smacking my lips, scratching same area none my neck and once I woke up with my legs up like I was walking or riding. I fell out of the bed last week, I have never done that. The blankets are all twisted and half off the bed most mornings and I am sore. Husband works 24hr shifts so he's not there every night. Heck even my dog of 13 years has quit sleeping in the bed with me! lol

Well here's the kicker, Dr said now she's not sure they are seizures and if they aren't she's not sure what they are! I am so frustrated. I have the abnormal EEG and from all the reading I have done they seem like seizures.

She has ordered a VEEG sleep monitoring at Medical College of Va, waiting for them to call to set up the appt.

Any suggestions??

Again, sorry so long...
Karen

 

[Bernard]

... I have had serious memory problems in the last 6 months so she sent me for cognitive testing a few weeks ago, I get those results next week. I don't have a good feeling about the results. My question is, could it be the meds or is it from seizures? Neuro. says prob. meds. causing memory issues, Neuro-psychologist who did cog. tests says meds wouldn't cause that?

Memory problems could be a result from seizures or meds or both. Your Neuro-psychologist is wrong.

The seizures I am having now are; All of a sudden I will get a headache, confused, hard time understanding others, right eye droops, nausea, often I will try to speak but can't, it doesn't last long though. Or my mind will know what it wants to say but when I open my mouth it comes out all wrong.

These sound like complex partial seizures to me.

I get a creeping numbness feeling on the right side of my face and in my right arm.

These could be mini-strokes (aka TIAs).

In my sleep I am breaking teeth, husbands says I am stiffening up, smacking my lips, scratching same area none my neck...

Sounds like more complex partial seizures.

... I fell out of the bed last week, I have never done that. The blankets are all twisted and half off the bed most mornings and I am sore.

Possible indirect evidence of nocturnal tonic clonic seizures.

... She has ordered a VEEG sleep monitoring at Medical College of Va, waiting for them to call to set up the appt.

That sounds like a prudent step forward.

 

[ziggidypoo]

WELCOME LV !!!:clap::e::clap:

 

[RobinN]

Call it what you want.. something is going on and you need to find out what is causing it. Knowlege is going to be your best line of attack though. You need to gather all the information that you can on the particular types of events that are happening, and then share that with your doctor. Have some opinions and tell her why you believe some of this is happening. Have dialog, ask questions. The worst feeling is being a guinea pig with different medications and tests.

My daughter had a VEEG and it showed nothing, since she did not have a seizure while she was hooked up. We also had a doctor that tried to suggest that they were not seizures. After more research on the subject I moved on to another doctor. Her current doctor specilizes in the type of seizures my daughter is having.

Is your doctor a specialist in head injuries?

From my understanding your medication can be a major part of your memory issues... and from our own experience can be a major reason you are having some of these new events. Once off certain meds, the unusual episodes stopped (took about a month for it to get out of her system).

 

[Lvjstn]

You guys are great!

Wow, thanks for the fast responses!

I know something is going on that is not right! I can't quite figure her out sometimes. She keeps saying, we're going to knock this out with medicine and when the medicine doesn't work she starts to doubt it's seizures? I'm just really frustrated right now. My quality of life the last 6 months has been zero.

I really hope I have some activity during the VEEG, my luck I'll sleep like a baby. Go figure, the one time you want something to happen so they can record it......

I didn't think to ask her but do they take you off your meds for the VEEG? I wouldn't think so since it's just an overnight test. I'll ask when they call to set up the appt.

I hate to switch drs again but I think I might need a specialist.

Thanks for your input!

 

[Lvjstn]

Thanks

Thanks for the welcome Ziggidypoo!

 

[CindyD]

Welcome Karen - I can relate!

Hi Karen,

Welcome. I'm new here too and it looks like you've already found that there are some very friendly and supportive folks on this forum. I can relate to your frustrations with your doctor right now. My neurologist just told me something similar on Wednesday when I showed him my journal and told him some of the things that I was now starting to be conscious of during an episode because the Zonogran was beginning to do its job and my head was clearer. Before, I had no memories, or very vague dreamlike memories of what may or may not have happened because it was usually when my husband was traveling or while I was home alone so there wasn't much to tell him. Now, he says I'm too young (48 ) to be having all these different kinds of symptoms (alot like you described in your post, but I've been lucky enough not to break any teeth yet :bigsmile and he's sending me to Dr. Abou-Khalil at Vanderbilt UMC in Nashville after I have an EEG here on Dec 2. I also had a "non-specific" spot on my brain MRI. I still don't have an "official" diagnosis" so you're one step ahead of me there.

Hopefully, you are on the right track now and can get the answers you need to get yourself seizure free! Keep in touch and stay positive.

Take care,
Cindy

 

[alivenwell]

Hi! Welcome to the forum and Happy Black Friday!

I agree...that epilepsy will test the limits of your new marriage.

And, I see you are also near me with Nanook of the North with VERY COLD weather right now.

If you're sleeping alone when your husband is at work, you might want to sleep on the floor (you can't fall from the floor). Just substitute several layers of clothing for that blanket so you don't cover your face with it. They have some incredibly great outdoor thermal clothing out there. It's expensive, but well worth the money. I find a lot of it online.

And, your broken teeth will have to be mended after your epilepsy becomes better controlled. They have a dental procedure called bonding. It can reshape, rebuild and resurface teeth. It's incredible how well it holds up. The risk of broken teeth is a potential infection that can aggravate the seizures. It's something to consider.

 

[Lvjstn]

Hi Cindy

Hi Cindy,
Good luck on your EEG, let us know how it goes. I'll just be glad to have a clear cut diagnosis, if that's possible. Keep me posted on your progress as well.
Take care,
Karen

 

[Lvjstn]

Hi Alivenwell,
Love the name!

My new hubby has actually been great, he's worried more than anything. He's a firefighter/EMT so he's familiar with how to deal with seizures, but it's not the same when it's someone you love going through it.

Weather here is nice today. 60 degrees, but going to change tomorrow!

We have a huge bed so I just sleep in the middle now even when he's home since I fell out. He has jokingly threatened to nail down the comforter though! He might need those thermals you were talking about.

Yes, I now need to have 2 crowns on my teeth but am holding off until I get the seizures under control. It's hard to believe I can do that without even waking up or noticing it, seizures are powerful!

Have a great weekend,
Karen