New here

[foul ball]

Hello everyone,

I have had epilepsy all my life (60 yrs). Been taking dilantin for nearly 25 years (500 mg per day). I still have seizures once in a while but the real bad ones are under control. knock on wood. I am currently bring weaned off the dilantin and put on trileptal. The dilantin has become a real problem.

I'm looking forward to spending time on this site. I'm sure there is much to learn.

Thank you very much

foul ball

[Nakamova]

Hi foul_ball, welcome to CWE!

I hope you feel free to explore all the forums here. You can search for information about Trileptal and other meds using the search tab at the top.

As for your member name -- are you a baseball fan?

Best,
Nakamova

[foul ball]

Hi Nakamova

Thanks. I will spend time on this site.

I'm a Yankee and Met fan. Like to see the New York teams do well.

Thanks
foul ball

[Nakamova]

Hmm, I'm in the Boston area, so you know who I'm rooting for...

[Birdbomb]

Welcome to CWE! BTW loathe sports of all kinds, LOL but you're welcome to root for your favs! And I'm sure you'll find others here who will support you! Vegas teams are crappy at best anyways.

[Bernard]

Hi foul ball, welcome to the forum.

I dread the day that my wife has to wean off the Dilantin (and the rollercoaster starts up again).

[Endless]

Foul Ball,

Welcome to CWE! I'm glad you found us.

Also welcome to the world of Trileptal-ites. There's a big group of us in here.

[foul ball]

Thanks everyone

I'm hoping trileptal works for me. Dilantin has been beating me up lately. My doc feels it's time for a change.

Taking both meds at the same time is rough. I feel like I'm in another world. I forget the names of people that I've worked with for years. It's terrible.

Dilantin worked so well for so many years. I'm hoping the new med does the same.

Thanks
foul ball
p.s. GO YANKEES

[RobinN]

Hey foul ball...
Welcome to CWE. I do hope that trileptal is a good match for you. It was my daughters fourth med, and after that, made me consider alternative therapies.

You will find a ton of support here.

[Meetz1064]

and how do you do, foul ball? I do love the user name. Quite cute. Don't know about the NY teams though. Hmmmm. I'll ponder that.

Welcome to CWE, where you've found a wonderful place to be. Tons of people who are friendly, great information, and a wonderful party happenin' here, thanks to Mr B.

So feel free to kick up your feet and relax and join in the fun. We're happy to have you here--and hopefully someone will bring around some coffee that ISN'T burnt.....I keep doing that.......URG.

Make a great day!

Meetz

[huskymom]

Hi Foul Ball!

Welcome! Always great to meet another new person, even if you are a baseball fan! (We all have our faults lol)

I hope your medication change over goes well. This site is full of everything you would ever want to know, and if you can't find it, just ask, and someone will jump in to help you.

[Endless]

Taking both meds at the same time is rough. I feel like I'm in another world. I forget the names of people that I've worked with for years. It's terrible.

I'm in the same situation, except on a full dose of trileptal and ramping up on Lamictal. It's rough. My vision is so blurry I'm having trouble reading. When I take my meds it's like taking a sleeping pill. I'm out for the count. And I'm depressed beyond belief, but that's the trileptal. Don't worry, it doesn't affect everyone like that.

Hang in there. Hopefully soon you and I will be on one medication.

[foul ball]

Thanks Endless,

I also have been dealing with depression. My doc doesn't think it's the dilantin. He wants me to go on another med for the depression but is waiting until I'm off the dilantin and on a full dose of trileptal. I feel it's the dilantin.
I also have foot and leg neuropathy. I have high hopes that the trileptol will work. I already feel better.

Thanks
foul ball

[Nakamova]

Dilantin has actually been prescribed to treat depression in some cases, but I do think it can affect people unpredictably -- For some, the process of going off Dilantin can cause depression. Long-term use of Dilantin has also been known to cause neuropathy, so maybe it's the culprit in your case.

[foul ball]

Several years ago, I went on a diet to try to lower my blood pressure and lost 22 lbs. (my neurologist is not in my insurance network so my PCP monitors my bloodwork. PCP also orders testing at the behest of my neurologist, which is a strained situation at best.) However, the weight loss, and maybe age, elevated my dilantin level to a toxic level. My PCP has been telling me that my dilantin blood level is normal which I convey to my neurologist. Meanwhile, I can't remember my childrens names, can't sleep, have sensations all over my body, depressed, have leg and foot neuropathy, and am a nervous trainwreck. PCP tells me I have an anxiety disorder and need more meds. An emergency call to my neurologist led to more bloodwork and discovery of the toxic level. My dilantin intake was subsequently reduced and all symptoms disappeared, except for the neuropathy. I could have lived with that, however, the seizures started rearing their ugly heads. After 25+ years on dilantin, which has served me well, I am switching meds. It has me worried.
I currently take 400 mg dilantin and 900 mg gabapentin per day and am switching over to trileptal.

The moral of the story: "cheap is expensive"

Needless to say, my neurologist now does all the testing.

foul ball

[RobinN]

OUCH
so hard to find what works the hard way. We have faced many such experiments too.
Sorry to hear that you are on multiple meds. It isn't recommended
We also have my daughters PCP monitor bloodwork, but since Rebecca isn't on meds I am not worried. Her neurologist is not in the network, but we only have to use her for emergencies at this point.

Was the dilantin reduced quickly? Perhaps your body needed it a lot slower taper than what was suggested. Really sorry you are experiencing such terrible side effects. I hope they even out soon.

[foul ball]

Hello RobinN,

I'm still on the dilantin and gabapentin. I am also taking trileptal. I'm up to 600 mg per day-on my way to 900 mg. Once the trileptal stabalizes I'll slowly start reducing the dilantin. I am going to stay on the gabapentin. Taking all the meds at once had me on another planet until my pharmacist suggested I stagger the meds which I did and now I feel better. I still get spacey but it's not as bad.

My biggest issue is at work. I'm in a technical position where I have to design and estimate. I find myself making more and more judgement mistakes which surface after the fact and bite me in the rear. I'm counting on the trileptal to set me straight.

Does anyone have suggestions or experience regarding the best time frame for weaning off dilantin? I have not yet discussed this with my neurologist.

Thanks
foul ball

[Simba7805]

hey

i have had epilepsy since i was 11 i have absences and juevinile myoclonic (even though i passed high school i cant spell at all ) i plan on being here alot because well where i live no one has epilepsy and its hard to talk to someone who just doesn't understand.

simba

[Ruth]

My vision is so blurry I'm having trouble reading. When I take my meds it's like taking a sleeping pill. I'm out for the count. And I'm depressed beyond belief, but that's the trileptal. Don't worry, it doesn't affect everyone like that.

Welcome foul ball!!

The forum was made by Bernard out of love for his wife Stacy. That love permeates throughout the whole forum.

I have had epilepsy for about the same amount of time as you, 61 years. I do not recommend going off of any med without your doctor's okay. I am on 5 meds and I have the same problems as Endless. I am not on trileptal, though. I am on Neurontin, Lamictal, mysoline, clonozapam and Keppra.

Glad you are here. I live in CA and I like the Giants and the A's baseball teams. I also love golf even though I do not know how to play it. I watch it on TV. My favorite is Phil Mickelson.