A few dumb questions for a lot of smart people :-)

[stephk]

What is the difference between a Neurologist that specialezes in epilepsy different from an epitologist? I would think that they are the same.

What do you do when your Neuro will not listen to you? I have done the siezure diaries and brought them to appts, and my doc hasn't bothered to look at them, in turn.. I stopped keeping track.

What type of work can you safely do if your siezures are not controlled? This is an interesting one, because i can't work.. (was fired from a job BECAUSE i was considered unreliable... and can't tolerate heat.. one of my triggers.. learned that the hard way.) I also can't drive and would choose not to because mine are not controlled (guess that leaves out tractor trailer driver for me). I thought that i had this figured out.. I wanted to be an advocate to women who have been raped... started school for it and everything (outstanding grades) but because my siezures were not controlled, not able to continue the program.. and as an after thought, how would it come across if after someone just poured thier heart out to me about something so personal and i just had that blank stare and not know what they just said....

I know that it is possible to have a false neg EEG, but my doc said that it was not possible to have a false pos EEG... could this be true?


And lastly, and this is the hardest to ask, maybe best suited for the parents who have children with siezures...

When do you have your child tested if you suspect siezure activity? maybe a lil background would help. When my child was little she had an EEG done.. my neuro then (my first) actually noticed that my daughter would be playing and stop and get that.... stare.... Now that she is older, this is what i notice.. only happens when she is doing school work... but she will stop writing mid sentence (literally), and forget what she was doing. She has always been a day dreamer, but i don't know what that fine line is.

Thanks for all your input... hey noone accused me of being a genious, but i wanted to get your input

 

[epileric]

What is the difference between a Neurologist that specialezes in epilepsy different from an epitologist? I would think that they are the same.

Good guess! They are the same.

What do you do when your Neuro will not listen to you? I have done the siezure diaries and brought them to appts, and my doc hasn't bothered to look at them, in turn.. I stopped keeping track.

I would assume that the neuro feels they are irrelevant to his method of diagnosis/treatment. Personally I would say keep the seizure diary updated for your own use. It can be pretty enlightening to see what patterns you might get seizures in on paper

What type of work can you safely do if your siezures are not controlled? This is an interesting one, because i can't work.. (was fired from a job BECAUSE i was considered unreliable... and can't tolerate heat.. one of my triggers.. learned that the hard way.) I also can't drive and would choose not to because mine are not controlled (guess that leaves out tractor trailer driver for me). I thought that i had this figured out.. I wanted to be an advocate to women who have been raped... started school for it and everything (outstanding grades) but because my siezures were not controlled, not able to continue the program.. and as an after thought, how would it come across if after someone just poured thier heart out to me about something so personal and i just had that blank stare and not know what they just said....

Everyones seizures are different so you should know your boundaries better than anyone else. You do sound pretty aware of yours.

I know that it is possible to have a false neg EEG, but my doc said that it was not possible to have a false pos EEG... could this be true?

To my knowledge it is.

And lastly, and this is the hardest to ask, maybe best suited for the parents who have children with siezures...

When do you have your child tested if you suspect siezure activity? maybe a lil background would help. When my child was little she had an EEG done.. my neuro then (my first) actually noticed that my daughter would be playing and stop and get that.... stare.... Now that she is older, this is what i notice.. only happens when she is doing school work... but she will stop writing mid sentence (literally), and forget what she was doing. She has always been a day dreamer, but i don't know what that fine line is.

Thanks for all your input... hey noone accused me of being a genious, but i wanted to get your input

I'm not a parent but I often do the same as your daughter in that I'll forget what I'm about to say or write in mid-sentence as well as other things. I don't see that as connected to my seizures though & I have seen other people that don't have seizures do the same thing. The thing to figure out is did they just lose their train of thought for a second or are they totally on another planet. If you ask them what they're thinking about & they respond immediately it's probably not a seizure whereas if they don't hear you it is more likely to be one. Remember that this is my non-medical opinion.

 

[Nakamova]

Hi Stephk --

If your neurologist won't listen to you, consider finding another one.

Perhaps you can still work for an advocacy group, but maybe in a supporting and/or part-time role. Many non-profit organizations can use assistance in the office, on the phones, organizing events and mailings, etc. Sometimes it can be good to start out as a volunteer -- you make connections and may eventually find your way to a paying job.

It IS possible to have both false positives and false negatives on EEGs.

It's easy to mistake daydreaming for absence seizures and vice versa. Talk to your daughter when she is zoning out to see how she reacts. See if she has noticed anything about her behavior, stuff that is confusing or that she doesn't remember doing. If her reactions are worrisome, then get have her tested by a professional.

 

[Cint]

What is the difference between a Neurologist that specialezes in epilepsy different from an epitologist? I would think that they are the same.

What do you do when your Neuro will not listen to you? I have done the siezure diaries and brought them to appts, and my doc hasn't bothered to look at them, in turn.. I stopped keeping track.

Hi Stephk,

An epileptologist has 2 years of specialized training specifically for epilepsy.
Check out this site:
http://www.epilepsyadvocate.com/living-with-epilepsy/specialized-treatment.aspx

And I'd say it is time to find a dr. who is willing to listen.

 

[stephk]

Thanks Cint
I used that finder for epitologists and to my surprise the neuro that i am being referred to for second opinion by my neuro is on the list... sooo fingers crossed

 

[RobinN]

What is the difference between a Neurologist that specialezes in epilepsy different from an epitologist? I would think that they are the same.

Some without the label are better qualified to treat us. The white coat does not mean they listen well, or keep up to date with the latest research and alternative therapies.

What do you do when your Neuro will not listen to you? I have done the siezure diaries and brought them to appts, and my doc hasn't bothered to look at them, in turn.. I stopped keeping track.

If I am not listened to, I find a new doctor. That said, I don't expect my doctors to read the calendar journal, unless it is proving my point. Mine shows how often each month my daughter had a seizure, when she was on meds, and her TOM. I wouldn't expect them to read a diary... not sure if yours is written in diary / journal format.

What type of work can you safely do if your siezures are not controlled? This is an interesting one, because i can't work.. (was fired from a job BECAUSE i was considered unreliable... and can't tolerate heat.. one of my triggers.. learned that the hard way.) I also can't drive and would choose not to because mine are not controlled (guess that leaves out tractor trailer driver for me). I thought that i had this figured out.. I wanted to be an advocate to women who have been raped... started school for it and everything (outstanding grades) but because my siezures were not controlled, not able to continue the program.. and as an after thought, how would it come across if after someone just poured thier heart out to me about something so personal and i just had that blank stare and not know what they just said....

Rebecca takes the local Metro and Bus. She goes to school and works at Banana Republic in downtown Pasadena. She is not letting the fact that she has had seizures hold her back.

I know that it is possible to have a false neg EEG, but my doc said that it was not possible to have a false pos EEG... could this be true?

There is the possibility that the EEG was not read correctly.
I was told that it takes a special technician to read the EEG

And lastly, and this is the hardest to ask, maybe best suited for the parents who have children with siezures...

When do you have your child tested if you suspect seizure activity? maybe a lil background would help. When my child was little she had an EEG done.. my neuro then (my first) actually noticed that my daughter would be playing and stop and get that.... stare.... Now that she is older, this is what i notice.. only happens when she is doing school work... but she will stop writing mid sentence (literally), and forget what she was doing. She has always been a day dreamer, but i don't know what that fine line is.

Thanks for all your input... hey noone accused me of being a genious, but i wanted to get your input

From the info that you share., I would discuss the situations that you witness with her doctor
Also I would suggest you consider how nutrition plays a role in some seizure disorders. Many have been helped by making the effort.

 

[crannsmum]

Is your daughter left handed, artistic / creative?? She sounds very similar to myself as a child ( I dont have Epilepsy ). It's a shame that you cant gain a degree in " stareing into space" I'd have passed with flying colours! I can remember my mother asking me what was going through my mind at the time so I guess, like you she was concerned because my father was epileptic, as is now my son. looking back I just found it so hard to put down on paper what I knew.. it was just such a drag and so much easier to put yourself some place else even if it was " nowhere" even for subjects that I excelled at. I was branded as an" under achiever" which teachers find far more frustrating than a child with a low IQ but who tries hard. I struggled with spelling (and still do ) maths was equally difficult. it just wouldn't stay in my head. glad to say I havent needed logarythum thingys since i left school! yet I passed biology with ease without any dam effort on my part... because I liked it. Sadly no amount of coaxing, bribery, or blackmail would get me to give up my membership for the " some place else" club. I believe that my father was the same as a child so perhaps there is a connection to Epilepsy but possibly not one that's going to show up on an EEG