Awesome news!!!

[Crystal11]

Hello! Its been a while since writing last.
I had my neurology appointment today and was surprised at what i found out.
We talked about my seizures and frequency and migraines that have been increasing.
I now have an Epileptologist instead of neuros and she visited with me but I didn't know she was an Epi. She said she is changing me to the Epilepsy Clinic instead of general neurology. I was very very happy to hear this since I've had seizures since I was 6.
We are considering lowering some of my meds eventually since Zonegran was added to prevent my migraines. I never knew that it could help for that but we will see. Tonight was my first dose. Hoping for nothing bad from it.

I was evaluated for other things today and was prescribed PTphysical therapy for my muscles which are way way too tight. She always said that its a trigger for my migraines and I have also heard that tention headaches are caused from tight muscles in the cervical spine but by the bottom of the neck.
So- planes!!! YAY
Transferred to Epilepsy Clinic
Start physical therapy
Add Zonegran slowly to prevent migraines
Reduce other meds eventually and hopefully.

I am LUCKY to get an Epileptologist. There is only one Epileptologist in Austin but in the Hospital there is two. I get one of them and I am THANKFUL. I had no idea she was one since I had her before. She today told me she was an Epi and would like to transfer me to the Epilepsy Clinic there. So I am hoping for even better results!!

Anyway- I was wondering if any others have an Epi and also if others are on Zonegran for migraines and how it has helped out.
I get a little paranoid about starting new meds. I am not too happy about being on three seizure meds but anything to stop the migraines.
Drl B (Epi) asked me to start taking vitamine D and Calcium which I plan on doing soon.
So many things going on- but a very productive visit and more of a plan than ever before. I hope things get better fast!

Take care everyone and be safe
Crystal and her guide Umbro.

 

[Bernard]

Sounds great Crystal. I hope more specialized care yields better results.

 

[Endless]

Crystal,

What GREAT news! I see an epi. I'm thinking that the ideal is an epi who listens carefully, has an open mind, takes lots of time with you, etc. I would guess some epi's do, based on what I'm reading in the forum. Some epi's don't. I guess it's like any other type of doctor.

Pros: Specialized knowlege, whizzes when it comes to seizure medication.
Con: May not treat any related neurological problems (like migraines), so you may still need to see an epi plus a general neurologist.

My epi does have a higher level of specialized knowlege in seizures and medications, but I feel like I'm not listened to. I'd take a regular neurologist who listens and communicates over specialized knowlege any day. If you find an epi who also has good communication skills, you've hit the jackpot!

 

[Crystal11]

My epileptologist is the one reevaluated me for many thing and told me lots a out migraines and is the one who prescribed physical therapy for it now that I get a migraine 2-4 times a month.
Epilepsy and migraines are often much more commonly together than other conditions. It's common for people with epilepsy to also have migraines, but rare for people with migraines to develope seizures or epilepsy.

I've seen this doctor before thinking she was a regular Neuro and she spent the most time with me than any of the others. I've never liked have a new nuero each time I go. It's the same four but I only go every four month unless it's an emergency.
I hopedto get her when I went so I was happy to see her and even more happy to find out there was an epilepsy clinic there in that same office.
Epilepsy foundation sends many people there but I didn't know I would be able to go or have the need to. I've have a Neuro who had more E patients than any other conditions but she wasn't an epileptologist

I'm assuming thing will go faster and I will get more one on one treatment compared to evals each time with a new Neuro.

Take care everyone.

 

[Rhea]

I see an epileptologist. He is great and really tries hard to help me. He is also my grandson and daughter's doctor. So, we see him a lot. Sometimes- an awful lot!! He takes care of the neuropathy and other stuff to, so I guess he's the only one I need.

 

[79wot]

I have an epileptologist. My experience with my current doc is way better than it was with a general neurologist. My neurologists seemed satisfied with the fact that I was only having 1 to 2 seizures a year. When I switched to my epileptologist he told me that his goal was to keep me from having another seizure, ever. I was surprised and refreshed with how serious he took my condition. It took a year or so of special attention and trying different meds but I have now been seizure free for close to 2.5 years. That is my longest seizure free period since I started having seizures close to 15 years ago. I am sold on the specialized care.

I was on Dylantin when I first starting seeing my doctor. He told me that he wanted me off Dylantin ASAP and that he was surprised that my other doctors hadn't ever considered a newer medication. He recommended I move to Lamyctal but I chose Keppra. When Keppra didn't work he told me to take Lamyctal and it has worked wonders. I should have listened to him the first time around...

I will always recommend an epileptologist over a neurologist.

 

[Cynthia Martinez]

Epileptologist in Austin TX

Hi, I was interested in finding an Epileptologist in Austin TX for my son. Are you still seeing yours and have you had good success? We are just starting out with gathering information, my son was diagnosed a month ago, and his first Neurologist appt is not until January. I want to be as proactive as possible! Any info is greatly appreciated!!
Thank you sooo much, Cynthia Martinez

 

[79wot]

My experience is that my neurologists did not take my epilepsy as serious as my epileptologist has. In addition, an epileptologist is much more knowledgeable about current treatments and medications. I would recommend an epileptologist over a neurologist any day.