Epileptologist v. Neurologist?

[ddr1166]

Hi all - not sure if I'm spelling it right...can someone give me a quick lowdown on the pros/cons - do most of you have both or just one kind of doc? Thanks.

[rangerwvu]

Hi,
I went to an epilog a few months ago for the first time, referred by neurologist when I had a much more involved (time as well as tonic clonic) seizures than ever before after years of infrequent partials (auras) with a complex siezure showing up infrequently. Had not been to a neurologist for a couple of years....I had sort of successfully went into denial about the whole thing until reality literally came crashing back in LOL..anyway, going to him was the BEST thing that ever happened. But, I am not sure everyone has had that experience.

For me, it was great as he took A LOT of time the first visit listening, actually reading test results and notes from prior neurologist visits with me sitting there (spent over an hour there!)..answering my billion questions very well, then ordered the usual tests plus...he was great and persistent at trying to figure out what we all want to know initially, the 'why'?. My experience was that he also had a better understanding/took a lot of detailed time with the multiple test results on a couple of them as they showed the same thing as several years ago, but they missed it. Frustrating!! Now that this has been figured out (I am one of the lucky? ones, he and everyone else noted that the majority of people can never have a cause determined) his 'bed side' manner could stand some improvement and he seems real focused on throwing an additional med at the increase in activity vs really working with me in that I had done stupid things, not sleeping, not enough water, major stress all at the same time and really ignored triggers and got myself into this recent mess I believe as I never stopped taking med. He is now pretty quick with the visit. Basically, acting like a neurologist! But he still listens 'better' and has more articulate, educated answers to my questions than prior neuros did....I did not continue to see both, not sure that would benefit you enough to be worth it. Sorry for going on and on, just hoping that some details may provide info to you in this decision.

All the best to you as you navigate this process!

[epileric]

I've posted this before but I can't find where, but an epileptologist is a neurologist that specializes in epilepsy. Just for that reason IMO I think an epileptologist would be preferable & there would be no need to have a neurologist as well.

[Cint]

I go to an epileptologist because I have difficult to control seizures. I have tried numerous meds, had a left temporal lobectomy, have a VNS and still have seizures on occasion. Usually a patient is referred to an epileptologst when they're considered as a refractory epilepsy patient. IMO, an epileptologist makes a better epilepsy dr.

Here is a link:
http://www.aesnet.org/find-a-dr/find...r-epilepsy-com

[Endless]

Hey, ddr,

I went through several doctors, including neurologists, not agreeing with their "diagnosis." I didn't know what I had, but I did know they were all wrong, except my PCP who suspected seizures, but bowed the neurologists' opinions. I sought out second opinions. I finally landed in the office of one of the best neurologists in my major metropolitan area. After one appointment he referred me directly to an epileptologist, who happens to be one of the best epileptologist's in my major metropolitan area. I got in pretty quick because of who referred me.

The epileptologist had what was wrong NAILED in the first appointment.

End of story. At least it will be when we get my meds sorted out.

The bottom line is if you aren't happy with the service or the competence of your doctors, keep climbing up the food chain until you get to the help you need. Most epileptologist's have more specialized knowledge of seizures, and can more quickly and more accurately diagnose and treat what's going on with seizure-related problems. If your neurologist is doing fine, I'd stay there. If you are still having problems, I'd find that epileptologist.

[Nakamova]

My neurologist doesn't technically call herself an "epileptologist", but she works in the epilepsy department of a major teaching hospital, and specializes in women with epilepsy, so I would say in this case the distinction isn't relevant. In other places it may be more important.

[RobinN]

My daughter is seeing a neurologist just like your Nakamova. Though USC isn't a teaching hospital. I did not like UCLA for many reasons, and they had a great peer review. I think it boils down to what works for the individual. There are many that are open minded, and continue to learn.

I can't say Rebecca's neurologist is the best for us, we are constrained by insurance choices. She is out of network, so we keep her in our loop for emergencies.

[huskymom]

I don't have the option. We don't have any epileptologist's close to my area, and they would be considered "out of network" with my insurance company. I see a Neurologist and like him for the most part, but every once in awhile after you get the "look", I would like to be able to see an epileptologist.

[ddr1166]

Thank you all for your input and responses! I appreciate it very much. Cheers, D in Dallas

[Supra]

I went to my first epileptologist appointment today. She actually laughed (and scorned) my neurologists prescribed drugs.
I think I'm in love.

[ddr1166]

Hi Supra - can you be more specific? What were her thoughts and how did the neurologist not diagnose or help you correctly? Just curious. Thanks, D

[Supra]

No problem.
When I was in the hospital the neurologist was giving me Seroquel and Dilantin.
When I found out about this ( I was in a coma before hand) I demanded to see him. "Why are you giving me one drug that's known to cause seizures along with another one to prevent them?" I asked. He told me that Seroquel was to help me sleep.
"First of all, I was in a coma. I'd say I was sleeping fine. Second of all, have you ever heard of Lorazepam? Why don't you just hit me in the head with a hammer then give me two Tylenol."
Butthead. I subsequently refused any more Seroquel.
He was rather taken aback and promptly scurried out of the room.

My epileptologist agreed that it was a potentially dangerous combination and promised me that there is no need for any psychotropic drugs.

[Cint]

I cannot believe the neurologist prescribed Seroquel for sleep!! That is just downright unprofessional, IMO!

Seroquel and other psychotropic drugs can also bring out diabetes in some individuals, so beware!

[Endless]

Supra,

I'm so proud of you! It's hard to stand up for yourself, let alone when you are sick and in the hospital. Way to go!

[Supra]

I didn't meet my neurologist until the day I was released. By then I was well enough to realize what had been going on. I have been a member of CCHR since 2006. When I realized what they were giving me I had no choice but to give 'em hell.
At least my Epileptologist knows that I'm on top of the pharma BS.
And with that, ddr1166, I would suggest that you go with the specialist.