Greetings all

[FriscoShaker]

Hello all, where to start...

I am 31, had my first seizure(s) at 27, with no prior history or any medical issues. I had several grand mals, and spent a week in the hospital. I stay in very good shape, needless to say all of this was TOTALLY out of the blue.

I did not go on any medicine at that time, it was actually a two or three years, and 3 seizures later, that i tried Keppra. I didnt have any seizures on Keppra, but i could not deal with the ridiculous mood swings. I was switched to Lamictal, and in the year i've been on it I've had about ~10. I am now switching to Tegretol, but it will take another month or two before i'm completely moved. It is a little concerning because i was having about one seizure a year on no medicine, and now on lamicatal its more like 10. Wether this is progression of the disease or a very bad choice of AED's for me, I guess i'll know in a few months.

I live in North Dallas, and can't say i've ever talk/met another person with epilepsy, even if its just in a message board, so i'm looking forward to this.

I have nothing but grand mals (if you're gonna do it, do it up big?)

Hope to hear back!

 

[Nakamova]

Hi FriscoShaker, welcome to CWE!

I have only the grand mal variety, too. Fun!
I'm sorry to hear that you're still on the medication merry-go-round. If for some reason you end up back on Keppra, try taking a B6 supplement -- it can help with the mood swings Keppra causes.

If your seizures remain uncontrolled on the Tegretol, you might consider looking into neurofeedback. More info here http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/ My seizures are currently controlled by Lamictal, but I still hope to try neurofeedback when I have the extra cash (it's not covered by my insurance).

Best,
Nakamova

 

[LJ-Bain]

Welcome to CWE!
It sounds like you're on quite the medication roller coaster ride!
I only have simple partials but I can appreciate the Keppra mood swings.
I hope things are not progressing but that you'll just find the right drug combination!
I think you'll find you are absolutely not alone when it comes to finding support and open discussion about epilepsy here!

 

[jyearta]

Hi,

I think you will be glad you found this forum.

I have found answers to questions by the people here who have experienced the seiz. medic. side effects.

We all react different to diff. medic. --having said that I too could not tolerate Keppra. However that are people in the this forum that it works great for them.

It's a scarey thing to change medic. but if one is not working for you, you have to keep trying until you find the right one.

I have always had to have 2 diff. medic. to control my seizures.

 

[Kmellen]

I am on Tegretol XR and I have to say it is the only medication that has ever really worked for me. The original Tegretol and the Tegretol XR generic version carbamazapine I think it is don't work for me, but the brand name itself does. Good luck to you!

 

[Chaz1]

FriscoShaker,
Warm welcome…

Are you looking to other potential seizure triggers outside the meds you are being subscribed?

Son 26 has E, diagnosed 2009 after 1st T/Cs hit, had partials in adolescence and no meds until 2009. On meds, went 17 months seizure free then last 6 months big time T/C breakthroughs, meds upped (now 1300mg valporic). Still broke through, but just passed 2 wks T/C free.

We have pretty much hit nail on head for his seizure trigger, for him its emotional stress. May not relate to your seizures but do want to point out that circumstances seizures are worth dissecting.

We actively research options and he participates in various alternatives to meds albeit alongside the meds for now; some alternatives simply counteract the meds for the better as rightly mentioned below and so much more.

As you mention you know no one with Epilepsy, time to get fully researched and help get those who love you involved and informed about E.

CWE has a ton of recommendations to explore, check out the Library but so much more available if you explore…I know I did and still am.

 

[Kirt00]

Hello all, where to start...

I am 31, had my first seizure(s) at 27, with no prior history or any medical issues. I had several grand mals, and spent a week in the hospital. I stay in very good shape, needless to say all of this was TOTALLY out of the blue.

I did not go on any medicine at that time, it was actually a two or three years, and 3 seizures later, that i tried Keppra. I didnt have any seizures on Keppra, but i could not deal with the ridiculous mood swings. I was switched to Lamictal, and in the year i've been on it I've had about ~10. I am now switching to Tegretol, but it will take another month or two before i'm completely moved. It is a little concerning because i was having about one seizure a year on no medicine, and now on lamicatal its more like 10. Wether this is progression of the disease or a very bad choice of AED's for me, I guess i'll know in a few months.

I live in North Dallas, and can't say i've ever talk/met another person with epilepsy, even if its just in a message board, so i'm looking forward to this.

I have nothing but grand mals (if you're gonna do it, do it up big?)

Hope to hear back!

Hi there

I wanted to drop you a line as this is so like me and I have never come accross anybody else who is the same. I started to have seizures out of the blue at age 18 once yearly( now 34) I was eventually put on Lamictal which made the seizures increase a lot almost every 3 wks, kept upping the dose still the same.

So I eventually weaned off the Lamictal and self managed the condition for years however mine have recently increased a bit maybe because of mental stress.

I am now having a trial info Tegretol Xr to see if Lamictal was just the wrong medication for me or whether they can't bd controlled by medication at all.

I'd be interested to hear how you've progressed ??

Kirsty
X

 

[CathyAnn31]

Welcome to cwe neighbor, I'm in Richardson.

This is a very friendly group full of lots of knowledgible folks. You've come to the right place.

 

[Zolt]

Hey Frisco,

I for one did not do good on Lamotrigine, the generic form of Lamictal. My seizures started getting fewer, like every 2 months instead of once a month, but my seizures were way more intense, almost grand mal like, but i was conscious. I told my doc this and he upped the dosage. Then i started having shortness of breath, which i told the doc as well. He did nothing, so i had to request for him to change my meds. Now i'm on Gabapentin, I still have seizures, but now I have them in the mornings, which is a blessing for me, since i use to have them at all times of the day out of the blue.

Good luck with the new meds and be careful when switching Meds.

Zolt