2wk EEG - Is it worth the risk?

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Wobblez said:
A) If I don't, I'll always wonder, B) I want to start a family in a few years time and I'll have to come off Lamictal anyway, rather do it as an informed decision and C) it would mean a lot to know what's wrong and also what isn't wrong with me (something more serious) and finally reduce the stigma!
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Wobblez, those are all great reasons to get the EEG. Weigh the pros and cons and you'll find your answer. Ultimately, not matter what happens, you will know that you made the best decision you could at the time.

Epilepsy is so case specific. I had a quick diagnosis and my meds have mostly kept things in control. Sure they are slowly increasing with time as they become less effective, but I have chosen to go this route. If a doc want me to have an EEG while also saying it could make things worse;They better have a damn good reason for me to poke the bear. (I love that saying). Brain surgery would be one reason, but until I decide to travel that road I'd prefer to let things lay as they are. I know the bear is there, I don't need to see him.

IMO the fact that you will eventually go of lamictal to have kids is a good reason to get it. Your going to stop taking your meds at some point. Might as well do it in a safe place.
 
Are you guys drinking here without me?? While I bring home the bacon? (Actually I went out for dinner after work but that's not the point)
 
Just to comment on Wobblez' epileptologist not necessarily pushing for the ambulatory EEG: As many CWE members know, the EEG (even a long-term one) doesn't always record every seizure, especially if they are partials that are infrequent, transient, and/or originate in parts of the brain that aren't well-covered by the electrodes. In these instances, a less-experienced neuro will automatically (and often wrongly) default to PNES as the diagnosis. An experienced one will look closely at the symptoms and be able make an epilepsy diagnosis on that evidence alone.

So you can put on awful lot of hopes and dreams into getting a positive EEG -- for obvious reasons -- but you have to be careful about not setting yourself up for disappointment and confusion of it doesn't provide the result you are looking for. The saving grace in Wobblez' case is having a neuro who feels fairly comfortable diagnosing and treating for epilepsy even without having a confirming EEG.
 
Nakamova said:
In these instances, a less-experienced neuro will automatically (and often wrongly) default to PNES as the diagnosis. An experienced one will look closely at the symptoms and be able make an epilepsy diagnosis on that evidence alone. The saving grace in Wobblez' case is having a neuro who feels fairly comfortable diagnosing and treating for epilepsy even without having a confirming EEG.
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this is what i'm getting at tho nak - if her epileptologist (this ain't no neurologist) is that comfortable without further testing then WHY hasn't she made the diagnosis? put it on paper, discuss the route that epilepsy brings, and send W on her way? sounds to me like she's being iffy, which is the opposite reason we see specialists. we want answers, not 'well...............'
 
My epileptolgist did not make the diagnosis based on the amb eeg I had back in November but on the video that he saw because once again even though I had an abnormal eeg when I had a seizure it wasn't showing on the EEG. Thats when he told me that the video showed that my seizures were consistant with focal seizure which is often misdiagnosed as PNES.
 
*sigh* i feel so sorry for all you guys that go through this. a clear cut diagnosis, tho i didn't know it at the time, is so nice.
 
The day the doctor called me and told me the results of the amb eeg it was like the weight of the world fell off my shoulders. That why the last year has been so difficult for me. March 8th last year was when the doctor took my car from me. I had no idea what kind of fight I was going to have. Remember I already have an epilepsy diagnosis I mean they took out 40 percent of my right temporal lobe. That's why it was so difficult for me to accept what he was telling me at that point. I went into his office for the first time thinking he's just going to adjust my meds or maybe put me on another it would take care of this and I would go back to living a normal life again. after the 2nd eeg I started seeing the psychiatrist after the video eeg when the seizure were not showing on the eeg then came the PNES talk came in and I started seeing the doctor less and psych more. Finally after all the advise from Nak telling me that not all seizure show on the eeg and to not give up The doctor finally agreed it was true seizure and not something in my head. Now besides the Tegretol Im now on 4000mg of Keppra and working back up to 300mg of Lamictal. He's discussing a trip to either the Mayo clinic or Cleveland Clinic for testing and possibly surgery again. It was more than my ex wife could take so she spit. Now no job so no insurance which puts a stop on all of that. Qtown That's why I was so passionate about the conversation you and I were having a couple of pages ago The fight is daunting at best. Being shoved back and forth between the doctor and psych weighs on you Psych says it is a seizure the doctor says it can't be because there is no evidence of seizure. It sucks the life right out of you. If I didn't get that call in November from the Doctor no telling where I'd be now.
 
so... you already have an E diagnosis. and a temporal lobectomy (holy shit pita 40% that's a lot, hugs).

then years later a psychiatrist, which the doc finally agrees with, says it's a true seizure.

i don't get the issue.
 
you have to remember that in the psych world PNES is a real seizure. to a neurologist epileptolgist if there is no evidence of it then its not real its pseudo. I had to fight to get to the point i'm at now. Its a tough fight and I would'nt wish that on anybody. Thats why I hate for Wobblez to have to go hrough that if she does'nt have to. That why she will need lots of support from us if she has to go down the road that I went down because it takes alot out of you.
 
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