What now?

[Autumn Breeze]

EEg was normal

 

[jyearta]

I've had MANY EEG and MRI come back normal.
It was at Emory that their machines finally showed where my seizures originate from.

 

[Fedup]

Keep fighting and looking for the answers. Sounds a bit stupid but its true and its answers we all need.

 

[pita300]

Nak is going to tell you like she kept telling me that most seizure activity does'nt show on the EEG. I am the prime example of that. I had 4 this year alone and the 4th one finally showed seizure. You got to keep fighting.

 

[Autumn Breeze]

Right now seeking anything else isn't really an option. I can't burn through what money we have left until we are employed.

As much as I would love to spend a week at Emory, I can't.

 

[Nakamova]

Yup, keep fighting and asking questions. Did your neurologist outline any options? Some docs will diagnosis epilepsy based on symptoms alone, even without a confirming EEG. And if medication helps to control the symptoms, that can provide additional confirmation for the epilepsy diagnosis.

 

[CBernieBlack]

Hang in there. Every EEG I have ever done has come back clear even though I could swear I had an event and was looking forward to it finally being caught. I was in your spot yesterday and actually found this site and created an account to get the same answers! =)
So in the last 24 hours I've come up with a plan to look at food allergies causing seizures, environmental issues, and possibly trying to win the lotto. =)
If you would like some support for getting around that, I could be a tester and report back anything I find. Tallyho!

 

[Autumn Breeze]

Yup, keep fighting and asking questions. Did your neurologist outline any options? Some docs will diagnosis epilepsy based on symptoms alone, even without a confirming EEG. And if medication helps to control the symptoms, that can provide additional confirmation for the epilepsy diagnosis.

I don't have a neurologist :/

My GP suggested that I just go off of the meds, and see what happens.

 

[Autumn Breeze]

So, I went into this KNOWING that the EEG doesn't pick up much more than 10% of brain activity.

But then my doctor threw in this gem "YOu were sleep deprived, if it's epilepsy it *always* shows up when you're sleep deprived" and I just wanted to scream at him that it was bullshit, that the was taking the neurologists words with no 'wiggle room' (I don't know exactly what the neuro said) and that they weren't "episodes or whatever" they were seizures.

But he's just a GP, he doesn't have all the answers and it's not his fault.

But, I hadn't slept for more than 15 minutes at a time. I dosed off an on like that from about 3:30 until 5:30 (Wednesday) when I got up and showered. I'd been up since 6:30 the previous morning (Tuesday). And, absolutely NOTHING happened during the sleep study.

I got in the bed, got hooked up. It took me almost 25 minutes to fall asleep. She woke me up, I hyperventilated and she flashed lights at me. I didn't even fucking twitch.

My GP wants me to go off meds but says "Hey, if you feel better on them, there is nothing wrong with taking them their mood stabilizers too" Yeah. I know. But I have a problem with medicating unnecessarily. So... I don't know what to do. I really, truly have no idea.

Do I risk it and go off the meds? My last seizure was on them anyway. I know my husband won't let me drive and it's only been 7 weeks since my last seizure, and it was my 3rd "episode" this year. So, I'm not allowed to drive for a good long while, and it's killing my husband to pick up all this slack.

I want to get the data from both EEGs and have someone else read it, but I have no job, and no insurance. What little money we had left when my husband lost his job is rapidly going away and one of us needs to start working like, last month. I have no recent work history (last real job was more than 10 yrs ago now), and my credit is crap due to life....and employers are currently terrified of that. So I'm fucked. My husband has a ridiculously bad back and insomnia to go along with it, so we were hoping he could stop working but it's not looking favorable. And the job market BLOWS! We would be lucky, very lucky, to each end up with a min. wage job at this point. I've started applying to the factories in town.

I am so pissed off. I was so stressed out and sleep deprived last Wednesday for absolutely NOTHING. And SO MANY PEOPLE are all "Oh that's great!! I'm glad it was normal" omfg, are you listening?! IT's NOT Great, it's just not fucking great. I don't know what it is, but 'great' isn't the word I'd choose. It's horrible.

 

[jackier]

Chargingbird, I feel for you right now.
Hang in there, things will look up for you-hopefully soon.
I know what you mean about working; I've worked for almost the last 30 years & since this last Aug I've been on short term disability with my employer because of bad seizures.
I feel pretty useless right now, a recluse, but I keep telling myself it could be worse.
Have you tried a temp service-do they have one in your area? My employer used one & a lot of people were hired temporarily but eventually they made them permanent.
Good luck! (((Hugs)))

 

[Autumn Breeze]

There is one down the road. I've contacted them once. I guess I need to bite the bullet and go.in.there. But I'm being snotty because they ignored me. I just have to get over it and contact them again. Thanks for the reminder/push

 

[PSUgirl2009]

"You were sleep deprived, if it's epilepsy it *always* shows up when you're sleep deprived"

Not even close to a true statement. According to the Neurodiagnostic Labs website, "A normal EEG does not mean you are not having seizures or epileptic episodes. Unfortunately, approximately 1/2 of all EEGs performed on patients experiencing seizures are interpreted as normal. This is because an EEG records electrical brain activity and if you do not have a seizure it may or may not record the activity as normal. "

I'm sorry you are having trouble with your doctor. I would maybe push for an MRI since the EEG is not always telling of a person's epilepsy. My last EEG came back normal and then, we did an MRI that showed a huge congenital brain anomaly that causes seizures. You never know what you will find.

 

[MaryK]

Charging Bird.. I just read the "about me" on your blog. That is YOU. Like everyone said keep pushing towards a diagnosis. I like the idea about going back to the temp agency.
Many people end-up with fulltime employment after a temp job. My best to you and your family. BTW... Love the scarf you made for your daughter. Looks like an original pattern. I wish I had your talent.

 

[BIGMAN131307]

But then my doctor threw in this gem "You were sleep deprived, if it's epilepsy it *always* shows up when you're sleep deprived" and I just wanted to scream at him that it was bullshit,

Far from the truth. It all depends on what kind of seizure activity you have, where it originates, etc. All the sleep deprived does is gives the EEG a relaxed reading of your brain
waves. Hopefully you are asleep to do this in. But all the "sleep deprived" EEG's I had didn't show much if any activity. No matter how long you are deprived sleep, most people find it hard to sleep for this test. 1. You have all those electrodes glued to you head.
2. They need you awake to look at the flashing lights. After that who can sleep with all the random chatting and noise from the testers, etc.

The only EEG test that produced any real results for me was the Video EEG Monitoring test session. This test was quite easy, and much more reliable. I'll explain it in steps.

1. Check-in for testing session
2. get a room & gowned
3. Iv setup, electrodes attached
4. baseline reading, and testing begins
5. your AED meds are gradually reduced / removed
*6. Wait until you have a seizure(s)
7. Once they happen and a good reading is made, you AED meds are returned.
8. After your back on your meds stable, your released.
9. Review the results with your neurologist, plan your course of action.

*Could be minutes, hours, or days. In my case I went in on a Monday, and went home on
that Saturday.


I hope that explains it well for you.

 

[Jerrad]

You're not alone on this. (as you can see^) the tests have never shown seizure activity for me either.

With E, it's rare for the docs to be able to explain why the seizures happen, just keep a journal with sleeping, and eating habits, and the level of stress you have when you have a seizure.

With me, most of the answers come from my own investigations. I found it to be way cheaper than taking expensive test for them to just tell you, "Yep you have Epilepsy"

 

[Hand of Blood]

mine came bck normal too, and i kept having sezures so they just put e down as having ep anyway and put me on meds

 

[Autumn Breeze]

"You were sleep deprived, if it's epilepsy it *always* shows up when you're sleep deprived"

Not even close to a true statement. According to the Neurodiagnostic Labs website, "A normal EEG does not mean you are not having seizures or epileptic episodes. Unfortunately, approximately 1/2 of all EEGs performed on patients experiencing seizures are interpreted as normal. This is because an EEG records electrical brain activity and if you do not have a seizure it may or may not record the activity as normal. "

I'm sorry you are having trouble with your doctor. I would maybe push for an MRI since the EEG is not always telling of a person's epilepsy. My last EEG came back normal and then, we did an MRI that showed a huge congenital brain anomaly that causes seizures. You never know what you will find.

Thanks I did have an MRI in January '11 and it was also 'normal'. No contrast, just a regular MRI.

Charging Bird.. I just read the "about me" on your blog. That is YOU. Like everyone said keep pushing towards a diagnosis. I like the idea about going back to the temp agency.
Many people end-up with fulltime employment after a temp job. My best to you and your family. BTW... Love the scarf you made for your daughter. Looks like an original pattern. I wish I had your talent.

Aw, thanks I wish I could say it was an original pattern, unfortunately my creativity needs directions . I was able to follow someone else's pattern that they'd made just by looking at a scarf from a movie. Incredible!

And I will get my information into that temp agency

Far from the truth. It all depends on what kind of seizure activity you have, where it originates, etc. All the sleep deprived does is gives the EEG a relaxed reading of your brain
waves. Hopefully you are asleep to do this in. But all the "sleep deprived" EEG's I had didn't show much if any activity. No matter how long you are deprived sleep, most people find it hard to sleep for this test. 1. You have all those electrodes glued to you head.
2. They need you awake to look at the flashing lights. After that who can sleep with all the random chatting and noise from the testers, etc.

The only EEG test that produced any real results for me was the Video EEG Monitoring test session. This test was quite easy, and much more reliable. I'll explain it in steps.

1. Check-in for testing session
2. get a room & gowned
3. Iv setup, electrodes attached
4. baseline reading, and testing begins
5. your AED meds are gradually reduced / removed
*6. Wait until you have a seizure(s)
7. Once they happen and a good reading is made, you AED meds are returned.
8. After your back on your meds stable, your released.
9. Review the results with your neurologist, plan your course of action.

*Could be minutes, hours, or days. In my case I went in on a Monday, and went home on
that Saturday.


I hope that explains it well for you.

Thanks!! My goal had been to get a video EEG, but one of the reasons we didn't (after the cost factor) was that my seizures are SO far apart. They've come in January (unmed), July (unmed) and October (medicated). So, we were worried I could be there for a long time. I was off my meds for almost 7 full days by the time I had this eeg.

I still want a VEEG, I just need the insurance/money to make that happen.

You're not alone on this. (as you can see^) the tests have never shown seizure activity for me either.

With E, it's rare for the docs to be able to explain why the seizures happen, just keep a journal with sleeping, and eating habits, and the level of stress you have when you have a seizure.

With me, most of the answers come from my own investigations. I found it to be way cheaper than taking expensive test for them to just tell you, "Yep you have Epilepsy"

Thanks for the reminder to keep my journal. I'd started one in October and was writing everything down. I was very stressed after my last seizure, and kept up with it for a few weeks, but stopped right around Thanksgiving when shit got busy again. Maybe i need to pick up my Oh Life! online journal again instead of paper and pen.



Thank you, thank you all! It means so much to be able to say these things and not get patronized. Saying "that's great" and "everything's fine" Y'all rock!![/COLOR]

 

[aggy84]

I had an EEG and MRI scan this year. I was diagnosed officially in June. I had an emergency MRI at one point because they weren't sure if there was something blocking... who knows it was all very vaguely explained! I had an EEG but no one explained a thing to me...I bought it up with the epilepsy nurse who initially said they could put me on a 24hr or 48 hr EEG, she then saw my previous EEG and said there was no need claiming it clearly showed abnormality and it was epilepsy. Hhow they can be certain that means its epilepsy.. anyone else know?!

It is royally frustrating because you get passed from pillar to post with nobody giving any help or guidance whilst you're going through it all. I'd push for a 24hr or 48 hr one. My friend who initially suggested what I was experiencing was epilepsy told me all her tests came back normal, but she pushed until she got a 48 hours reading - it was then they diagnosed her.

Keep strong hun, you can do it.

xxx

 

[Nakamova]

How they can be certain that means its epilepsy.. anyone else know?!

In some kinds of epilepsy, there's a characteristic spike-and-wave brainwave pattern that shows up interictally (when you're between seizures). If that pattern shows up on your EEG, then it's pretty definitive for an epilepsy diagnosis. That was the case for me.

 

[jemsister]

Charging Bird.. I just read the "about me" on your blog. That is YOU. Like everyone said keep pushing towards a diagnosis. I like the idea about going back to the temp agency.

Yep, my sis used to go through the temp agency to find a permanent job. Faster to get hired, and if you're a good worker, they want to keep you.

I have had more normal EEGs than abnormal ones (1 abnormal EEG, to be precise). Your doctor is full of it. If you see him again, take some information with you.

I really hope you are able to find a job soon! =(