2wk EEG - Is it worth the risk?

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Yeah I guess 3 tonic clonics are reasonable in that situation! Lol about the door!

I think my Epileptologist is concerned about unsettling things because I generally only have simple and complex partials, so there is room for me to get worse and move to t/c's. I don't mean to sound heartless, but I guess if you're already having t/c's regularly, they wouldn't see it as so distruptive. If that makes sense...
 
Wow,
I really thought we had scared you off!! Here in the states 5-7 days is about normal. Getting the insurance company to pay for more than that becomes difficult at best. I know your looking for a diagnosis and I really can't blame you. As I stated eariler It took 4 EEG's to prove these were not in my head. The 8 months I spent trying to convince the doctors and psychiartrist took a lot out of me. To the point now when I have a simple partial sometime I doubt my self as to if that was real or in my head! We'er all thinking of you!
 
i get that yeah, makes total sense. however i'm a bit confused - you do have an epileptologist, without an epilepsy diagnosis? how'd you manage that?
 
pita300 said:
The 8 months I spent trying to convince the doctors and psychiartrist took a lot out of me. To the point now when I have a simple partial sometime I doubt my self as to if that was real or in my head!
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oooh gotta watch those psychiatrists. my life is what it is b/c he fucked up and misdiagnosed me when i first started having partials at 15. went 9 years not knowing i had epilepsy. whole life would have been different had i gotten the diagnosis and been on the right meds then and there. grrrr.
i don't carry hatred or revenge but i know for sure i ended up on a different path.
 
WELL!! Good question Qtowngirl!! I started getting seizures again in 2010, ended up in my GP's office who sent me to hospital. Met the hospital's neuro (Dr Dickhead). Saw him several times, told me I was "thinking too much". Discharged me despite being admitted by hospital staff.

Kept having issues, got a second opinion regarding his "vertigo and stress" diagnosis on the recommendation of my ever-supportive GP and saw an LOVELY neurologist who said "I'm not sure why there was any trouble diagnosing you" and diagnosed me with epilepsy. I had a lot going on, very stressed (stalker) and anxious so I listed to him lots of symptoms which made me non-textbook. As he was not an epilepsy specialist, he referred me to an Epileptologist to distinguish the symptoms. I also saw a psychologist to help rule out anxiety attacks/psychogenic seizures etc. Found no basis for those.

I am currently seeing the Epileptologist now and now that life has settled down, my list of symptoms has shrunk to a more textbook idea of epilepsy, making her job easier! She said "there has always been some doubt around your diagnosis but I don't want to label them as psychogenic because we can't be sure and I would hate to pigeonhole you and have people not take you seriously". I wanted to hug her.

She is the one who has warned me about doing the test, but took the time to discuss it and listen to my pros and cons. She has written again to the doctor who does the test, to check on my waiting time. We decided to keep me on the list so I can think about it and see how I am travelling in approximately 3 months time, (I get worse in Autumn which is approaching) when I'm likely to be offered a place (massive waiting list over here).

Pita300 - I remember your diagnosis journey...yuk. No, havent scared me off. I'm aware of both sides but as I'm sure you'll understand, having some answers does make it very tempting.
 
Dr. Dickhead. I think I know him!!!!! Is'nt his mothers name Ima??:roflmao:
 
Another consideration is if the seizures were then diagnosed as psychogenic, my Epileptologist said she could keep me on the Lamictal anyway. However, if that was the case I would actively work towards coming off the tablets, by working on some anti anxiety techniques, counselling, meditation etc.

I'm very interested to hear from anyone who has psychogenic seizures...
 
That's him Pita! He has crazy hair, a rude demeanour and stops you mid sentence??
 
i don't get it at all.
it's her job to find out what type of seizures you have and give you a proper diagnosis. if you're psychogenic then your life path will go differently from then on in compared to an E diagnosis. she may say she'll keep you on the lamictal now, but you're young and there's lots to keep up with E. annual testing to name just one. grrr, i just don't get it, would think as an epileptologist she'd be all over this, wanting to find out. just 'playing it safe' is not going to help you guys figure it out. hmmm.
 
Wobblez said:
Another consideration is if the seizures were then diagnosed as psychogenic, my Epileptologist said she could keep me on the Lamictal anyway. However, if that was the case I would actively work towards coming off the tablets, by working on some anti anxiety techniques, counselling, meditation etc.

I'm very interested to hear from anyone who has psychogenic seizures...
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Thats another thing thats driving me crazy. If your seizures were psychogenic Then the Lamictal would not be controling the seizures. I've always been told that anti seizure meds wont control PNES I don't get that. Unless the doctor is using the Lamictal for anxiety and not seizures. I take clonazepam for my anexiety which is also a seizure med.
 
lamictal is also a mood stabilizer and they like prescribing it for E with depression, but don't know as you pita how that will take care of the non-epileptic seizures.
 
I've learned alot about PNES over the last year The biggest was seizure meds would not control PNES. I know seizure meds are used for other conditions. I have a friend who takes 3 lorazepam every day for migraines. If I have a cluter of seizures 1 will knock me out and make me sleep for 3-4 hours. I guess its the difference is what my brain is doing at the time. You know the more I think about this the more I start wait a minute agree with umm hang on I have to swallow my pride ok I'm going to say it qtowngirl! There I said it.. But the more we discuss this the more I agree with her and think that the video eeg might be a good option for you.
 
See thats what I love about this site, we learn so much from each other and we don't engage in politics!! I'm also starting to think I'll do the test because 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!

*Naomi runs around with her positive EEG..."See!! See!! I'm not imagining it!!!"
 
Time to go to work, keep it coming!! If only you guys weren't in America, we could have Friday night chats and talk about E, and boys and weird stuff!
 
pita300 said:
I've learned alot about PNES over the last year The biggest was seizure meds would not control PNES. I know seizure meds are used for other conditions. I have a friend who takes 3 lorazepam every day for migraines. If I have a cluter of seizures 1 will knock me out and make me sleep for 3-4 hours. I guess its the difference is what my brain is doing at the time. You know the more I think about this the more I start wait a minute agree with umm hang on I have to swallow my pride ok I'm going to say it qtowngirl! There I said it.. But the more we discuss this the more I agree with her and think that the video eeg might be a good option for you.
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hugs bud, and thanks, that was umm wait for it, funny. genuine!
i just think it's best to know rather than not know. you never want to stay in the dark then find out 10 years later that something's REALLY wrong but it's too late, needed to be dealt with sooner.
hence me picking up my big girl panties and saying yes to surgery. i'd never forgive myself if that was the case.
 
Wobblez said:
Time to go to work, keep it coming!! If only you guys weren't in America, we could have Friday night chats and talk about E, and boys and weird stuff!
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mmmm.... boys.... we can talk about that anytime :bigsmile:
 
i dunno, hard decision as i'm so busy right now between getting ready for nak's orgy wherever that's going to be as well as flying my magic carpet to ottawa to pick up 2ndchances. let me think on it.

in my opinion you should all come here - we have free healthcare.
 
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