New here, but not to epilepsy

[Ravensong]

Hi all. I was diagnosed with epilepsy a hundred years ago (or so it seems) and have been on a forum or two, but I really, really like this one. Everybody is so friendly and helpful, and I am learning so much, even after dealing with this for so long. Thanks for that!

I had my first grand mal at work in 1981 (I was a new RN on a psychiatric unit - as you can imagine, that went over well), but was not referred to a neurologist until I demanded it - I think the grand mal occured because I was on a very high dose of an anti-depressant. I found out later that the level was toxic in my system. Anyway, I was eventually diagnosed with temporal lobe epilepsy, and it was determined that I'd actually been having partial and complex partial seizures all my life; no one recognized them as such, though.

Since then, I've been on several meds, but now I'm on Topiramate, and have pretty good seizure control. I have "episodes" that I think are probably partial seizures, but I've found that most of the docs I've seen don't want to commit to calling them that (for some bizarre reason, even though they do seem to be affected by meds) and, since my regular EEGs come back normal now, the docs are satisfied that I'm doing just fine.

I'm not entirely satisfied in that vein. But here's the thing. My current neuro is a big-wig with the Epilepsy Foundation of America, and he's a specialist in epilepsy, as well as a professor at a big medical college, so he ought to know what he's talking about, right? I mean, what the heck do I know?

Anyway, I'm so glad to be here!:rock:

 

[Chaz1]

Ravensong,

CWE is such a warm and comfy place to hang out be and share and learn…and feel at home….how lucky are we (thank u Bernard)

"Pretty good seizure control" hallelujah to that one... but sounds like something is still not right sorry to hear this..

Darn, that’s a tough one..in doubt (you know your body better than anyone) but according to the World of E u should be under the best of control that there is….but maybe u r not…. How often do u see your specialist?

We finally got appointment to see an epitologist (the real E experts, no?) a good few months back and we aint never going back to that one, in fact we went running back to the neurologist he said goodbye to, disappointment an understatement, so can relate a little bit..

 

[Nakamova]

I'm not entirely satisfied in that vein. But here's the thing. My current neurologist is a big-wig with the Epilepsy Foundation of America, and he's a specialist in epilepsy, as well as a professor at a big medical college, so he ought to know what he's talking about, right? I mean, what the heck do I know?

Hey, you're the customer here. The doc works for you, not the other way around. If you're not comfortable with the status quo, push for a better response or explanation. And if you still don't feel like you're being listened to, there's nothing wrong with getting another opinion. Big shot neurologists aren't always the good healers, any more than big shot professors are good teachers...

 

[stacey]

Hi Ravensong

welcome to cwe! I am new here to and i have found it to be nice to talk to people who knows everything epilepsy.

I am having a problem at the moment with my neuro for my 5 year old and the advice given to me is even if the doctors have all these letters next to their name its always a better option to get a second opinion then always assume they are right, if you feel something isnt right then follow that feeling until you feel comfortable with the outcome.

the best wishes for sorting this out!

Stacey

 

[Fedup]

Ravensong

Glad you stopped by. Your neurologist may be a big-wig with the Epilepsy Foundation of America in his eyes, but that does not mean he knows everything. I think the more letters after the name, get another opinion, just realized Stacey said that as well. I wish you luck with this problem.

 

[jyearta]

In 2004 I saw a epileptologist at a teaching hosp. who would NOT listen to me or my husband. Just like you, I thought she the DR. (knows all) who was I to tell her different. After 3 months, I went to another neur.