New Guy here who just moved to a new town (grand mal seizures)

[nickw252]

Hi all - I am a 26 year old male who didn't start having seizures until two years ago when I was 24. At that point it was just one grand mal seizure and I was finishing law school and didn't want to go on medications.

I was then fine for almost a year when I had another grand mal seizure. This time I agreed to go on medications and the doctor put me on a low dosage of dilantin (200mg) and all was fine. That doctor also recommended that I see a neurologist. I got an appointment with a specialist and he didn't like dilantin because it's an old medicine so he put me on Keppra. After starting Keppra I started having seizures very frequently (once a week or more), to which the Doctor just kept increasing my dosage.

This went on and continued to get worse for about 2 months when I ended up back in the hospital after a fit of psychosis. The scariest part about that is that I can remember everything that happened that night but I couldn't control myself.

From then on I got a new neurologist who put me back on dilantin. This neurologist watched my blood levels closely and actually spent time with me and talked & listened to me (what a novel concept). I have not had any problems since then (about 9 months) except for my liver enzyme tests are sometimes high. (I like to have a few drinks)

I now moved to a new town (Phoenix, AZ) and am stuck with the daunting task of finding a new doctor who will listen to me and one that I am comfortable with. I am considering continuing to go to my previous neurologist that I liked but he is about 5 hours away (Las Vegas, NV).

Any thoughts on how to find a new doctor? Should I keep the one I have and feel comfortable with?

[Nakamova]

Hi nickw252, welcome to CWE!

Finding the right neurologist can be like finding the right anti-epileptic drug. I too was put on Dilantin after my first seizures, and wouldn't have minded staying on it, but my neurologist also didn't like the fact that it was an old medicine and switched me off of it to her fave, Lamictal. The Lamictal has more side effects than Dilantin did, but they are basically tolerable, so I'm not going to switch back...Still it would have saved me a lot of hassle (and money) if I were still on Dilantin.

I'm glad you found a good doc and are off the Keppra. Can you ask your neurologist for a referral to one closer to you? Also, here's a recommendation from the epilepsy.com website: Dr. David Labiner, University of Arizona, AZ

Best,
Nakamova

[nickw252]

Fortunately I do not notice any side effects on dilantin - the doctors just say it is a very harsh medication that you don't want to be on for the rest of your life.

Thanks for those thoughts on finding a new doctor, I ask my Doc in LV for a referral in Phoenix.

[epileric]

Welcome Nick.

I was on dilantin a while ago too (as well as numerous other anti-epileptic drugs at the same time) & the one thing I remember being told was to always brush my teeth because one of the possible side-effects was swollen gums & hopefully healthy gums decreases that possibility.

I was lucky enough not to get that side-effect too badly though.

[nickw252]

Welcome Nick.

I was on dilantin a while ago too (as well as numerous other anti-epileptic drugs at the same time) & the one thing I remember being told was to always brush my teeth because one of the possible side-effects was swollen gums & hopefully healthy gums decreases that possibility.

I was lucky enough not to get that side-effect too badly though.

Fortunately I haven't had any problems with my pearly whites yet

[huskymom]

just wanted to welcome you to the site!!!

[alivenwell]

Hi! Welcome! We have both a doctor and a lawyer in here now! Great!

I've been taken off Dilantin in my 30s due to its other side effects on unborn children. I'm on the Lamictal and it has taken at least 6 months to get to the right level, but I've had no seizures for a really really long time. The trick is to precount it ahead of time, set alarms on a watch or cell phone to take the meds faithfully every day. Lamictal has had little or no effect on any drowsiness for me, unlike other meds in the past.

Go for it. I highly recommend the brand name only meds even if they are more costly. Blood levels will be more stable. Switching from brand to generic drugs and back again; or across various generic companies can cause breakthrough seizures.

[nickw252]

My doctor also recommended brand Dilantin and that's what I'm on even though it's a little more expensive.

[Endless]

Hi, Nick,

Welcome!

Finding a good neurologist is really hard. A lot of it is chemistry, too, as far as communication goes. Check out the one Nakamova mentioned. Also, here's a list of regional epilepsy centers. It looks like there are two in Phoenix. Most of the doctors at those centers are pretty good:
http://www.naeclocator.org/locator/resultsall.asp

Will you let us know how you are doing and if you find a doc you like?

[nickw252]

Hi, Nick,

Welcome!

Finding a good neurologist is really hard. A lot of it is chemistry, too, as far as communication goes. Check out the one Nakamova mentioned. Also, here's a list of regional epilepsy centers.

Will you let us know how you are doing and if you find a doc you like?

I'll keep everyone informed.

I'm starting a new job on Monday so I'll probably have to wait a while before I get insurance all figured out and am able to get a doc. The more I think about it though I am seriously considering keeping my doctor in Las Vegas if he accepts my new insurance. The biggest problem with that is having to take a day off work and getting hotel rooms and everything.

When I started my last job they had a 3 month waiting period before the insurance benefits started so I got short-term coverage which little did I know, didn't cover pre-existing conditions. I ended up in the hospital while on that short term coverage and ended up with a bill of about $12,000.