EEGs, autism spectrum.

Diseases & Conditions Epilepsy
1
I hate EEGs!!!  And it looks like I may be needing another one.  It depends on if my state medicaid will pay.  It's not like Medicaid in what it pays for.  My neuro wants to send me to someone who is a specialists among neuros.  She said he will probably want another EEG.   Why do people say they don't hurt?  I've seized the entire time the strobe lights were on and slept for 20 hours afterward, I've had the worst headache I can imagine afterward, I've near wet my pants during one from seizing because of the lights (I'm aware I'm seizing and need desperately to use the bathroom but that's all).
 
How much do brains change anyway?  Is there any real reason to think this EEG will be different than the previous ones?  I mean epilepsy is treatable (most cases), not curable.  So won't the brain be the same?
 
And I have an appointment with my primary care doctor next week and want to ask him about some medicines I've read about on the internet.  My neuro says I've taken them all.  So has my previous neuros.  So what am I reading about?  Has anyone ever taken lists of questions to their doctor?  How do they react when you show them a list?.
 
And does anyone here have any form of autism along with epilepsy?  Or know anyone who does?  If so, let me know-it's another topic entirely.
 
Uhura (as I pray I can tolerate another EEG if necessary)
 
2

My last EEG was several years ago.  As far as medicines-I need to ask about Lyrica, the one someone here posted about.  I've been on Tegretal, Trileptal, Keppra, Neurontin, Depakote, Dilantin, Phenobarbital (nightmare!), Topomax (I think), Zarontin, and Zonogran.  My neurologists say I've taken them all and there are no more to try.

As it is, I consider myself lucky and blessed.  My seizures are frequent but they are myoclonic.  I think it's myoclonic.  Doctors won't say if I'm right, so I'm only using the description of myoclonic seizures that I've read.  And more of my problems come from being on the autism spectrum than epilepsy.  The hardest part of epilepsy for me is that I've had more than one doctor tell me I've taken all the medicines there are.  And for personal reasons the VNS isn't right for me.  (Does the VNS even work on non-epileptic seizures?).

So, if the State Mediciaid will pay for me to see him and for an EEG, I will do it.

Jennifer-are you ok? (I mean really ok?).

How is everyone else?

Uhura

 

3

Hi Uhura-

Gee, you've been on one more drug than I have!...  I've heard about Lyrica and if I have any return of my seizures (I've been 5 months seizure-free), I'm definitely going to ask my doctor about it. 

I've had a bunch of EEG's over the last 25 years and they're always the same... flashing lights, hyperventilate, fall asleep.  And then I have to get the goo out of my hair afterwards.  I hope if you have to get another EEG it shows something useful.  The only times mine  did were when I was really sleep deprived.  So, if you have one done- don't sleep for at least 24 hours so you can maximize your chances of having a seizure while you're hooked up for the EEG. 

Jen- I discussed getting the VNS with my doctor way before I had my brain surgery. For anyone that doesn't know, I had a left temporal lobectomy this past June.  The VNS is apparently only really effective for partial seizures, so I'm not sure about other types.  My doctor told me the VNS wouldn't really help me to get rid of my seizures, just decrease them somewhat.  And that's what my meds were doing anyway, so I passed on it and went right for the surgery.  And I'm glad I did!  5 months so far seizure-free.

Glenda :-)

complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d

4

Glenda,

I wish I could fall asleep during an EEG!  I lay their seizing and being aware I am seizing.

Jennifer, I don't think Utah will do that.  It depends on what you have as far as financial assistance here.  Maybe I'll find out if they will pay next week.

Have a good day everyone!

Uhura