Greetings and Question :)

[Frisco]

Greetings, all.

I'm Judy, 55, and have TLE (I think they have a new name for it). I had my first seizure 15 years ago and at that time the nuro. said that adults stay on meds the rest of their lives - he has had no success with taking adults off the seizure meds. (I'm on 300mg dilantin).

I have a new Dr now (we moved) and he's thinking I may be able to go off the meds if my MRI and EEG come back OK! This shocks me. I have had the MRI and EEG (the tech said they were normal but who knows) and I go back to see the doc in a few minutes - nothing like waiting till the last minute to join and post this!!

So, have any of you heard of adults going off meds? I'd be afraid to drive, for one thing. And I have had 'phantom smells' - very distinct and horrible - within the last 3 years. So I am a bit confused. Maybe he will decrease my dosage slowly and do EEGs?

Nice to meet you all!!

Judy

 

[CindyD]

welcome

Hi Judy -

Sorry I can't answer your questions, but I hope you got good news from your neuro. You'll find lots of friendly people here willing to help any way they can and they will definitely lend lots of support. Good luck.

Cindy

 

[Bernard]

Hi Judy, welcome to the forum. :hello:

Have a look here: http://www.coping-with-epilepsy.com...hen-seizures-have-been-controlled-years-1458/

 

[brain]

:hello: Judy

Welcome to CWE and Happy Holidays!
And what Bernard has posted, you are
encouraged to visit it; however I am also
a strong advocate of 2nd opinions as well,
so if you are feeling uncomfortable about
all of this - get a 2nd opinion first before
proceeding ... as a precautionary measure,
as not to "rock the boat". It is very wise
to make sure all the bases are covered
first and foremost as not to put your own
health in jeopardy <--- very important!

So once again, click on the link that Bernard
has posted ... and of course; "if ever" you
are not happy with your present Neurologist
or Epileptologist, you are not "bound" to see
him/her --> you can always move on to a
different one. Clicking on Epilepsy Foundation's
Banner below will direct you to the EFA's website
and clicking on "Find A Doctor" will assist you
if your Primary Care Doctor is unable to locate
a good one; or you can phone EFA and find
a Chapter or Affiliate if available in your area.

Feel free to make yourself a home here in CWE
and browse around! You are not alone!

 

[Kansas Educator]

I am 53 and was just diagnosed this year with temporal lobe epilepsy although have had them for at least 15 to 20 years -- I just didn't know what they were. My neurologist too told me I'd have to take meds the rest of my life. I'll be interested to hear what you find out. Please let us know and good luck!

Roxie

 

[Dispatch]

HI Judy & welcome!

I hope things turn out great at your appointment! I'm curious what your doc will do next. Please keep us posted!

 

[RobinN]

Hi Judy
My daughter was told she would have to be on meds for at least 5 years. We have found she is much better controlled with alternative therapies than she was with the four med we tried.

She is 17 at the moment, and not driving.