Epileptologists? - Epilepsy Message Board

Krista2882 · 02-13-2004, 07:35 PM

I've been seeing a neurologist for the past 3 years for my Epilepsy, but I don't really feel like he's doing all he can to make the seizures stop. I'm on 1000 mg of Tegretol a day, and 1200 mg of Keppra a day. I still get auras (i guess you'd call them auras) twice a month or so, and I have them for a couple of days.
I'd like the small seizures and auras to stop all together, but it seems like my neuro is ok with letting it stay as it is.
And I heard that I should look into an Epileptologist instead, because they have more indepth knowlege of epilepsy, and might be able to help me better.
So do you guys think that's a better way to go, and if so, does anyone know how I'd go about finding Epileptologists in Connecticut?
Thanks a lot!

~Krista

Lisa T · 02-13-2004, 08:24 PM

What major hospitals are in Connecticut?? I'm not familiar with your area.... have you talked to your neuro about referring you? One thing I have learned.. if you are not happy with your treatment, then its time for that treatment to change... its your life, NOT the doctors! Good luck in your search!

Lisa

Krista2882 · 02-14-2004, 03:15 PM

Quote:

Originally Posted by Lisa T

What major hospitals are in Connecticut?? I'm not familiar with your area.... have you talked to your neuro about referring you? One thing I have learned.. if you are not happy with your treatment, then its time for that treatment to change... its your life, NOT the doctors! Good luck in your search!

Lisa

thanks for the info!

tkdmom96 · 02-14-2004, 03:28 PM

Hi Krista,

I would recommend seeing an Epileptologist. Please read my posts under "Epileptologist!
Please help find" (right down below from your post)...you can read what I posted regarding our daughter who is almost 16. We switched to an Epileptologist in May of 2003, after seeing the same Neurologist for 13 1/2 years. It was one of the best things we did! You can read all of the different tests she has been through and where we are at. You can do a search on the internet under "epileptologist" and different names and clinics will come up. Johns Hopkins has an excellent program as well as the Cleveland Clinic, but I am sure there are some closer to you. You can also look on the internet under "Comprehensive Epilepsy Centers" or switch out "centers" for "programs" as well. You may not need a referral from your Neurologist, but maybe from your regular MD. Tell your primary care doc that you need to see an Epilepsy Specialist (Epileptologist). We just switched on our own. They are up on news meds, combos of meds, surgical options, testings that can pinpoint etc. Good Luck in your search. Start now, some docs (epileptologists) can be a long wait for the first appointment. (6 months- 1 year out) Again, check the seach engines with key words.

Vicki
mom of Katie, the most courageous young lady I know

Krista2882 · 02-15-2004, 02:42 PM

thanks a lot for the info!