How many years/AED's did it take you to be relatively under control?

[Blondie47]

Hello!
Just wondering what your experience has been with seizure control. How long does it take to find the right AED and gain dependable control?

I ask because we are at the end of our third AED. Hit the wall with side effects at our last increase (Trileptal 900mg 2x daily for simple partial's, occipital and frontal) Waiting to hear from doc what is next--I think it is Lamictal.

It has been one year since diagnosis, and I still can't believe we are not <there> yet.

We have gone through Keppra & Depakote --both failed because of poor control and lousy side effects. Trileptal has been the best so far, but not perfect. My DD is being seen by an epitologist at a level four epilepsy center (our second doc). The care is wonderful.

Thanks for your input!

 

[epileric]

I've been on meds all my life. I think I've tried them all except for Vimpat & my seizures still aren't under control. Every time I try a new drug it lessens my seizures for a few day to a week then it's back to daily seizures but sometimes with side-effects too.

This last visit to my neurologist he put me on neurontin but did tell me that the more meds you try without success, the less the chance of the next one working. Actually about 1/3 of seizures are never controlled (I think I read that here), that's a pretty high percentage.

Meanwhile you've only ever tried 3 so there's lots left that you can try out. I would start looking at alternative treatments as well.

 

[Loudmouth]

was diagnosed almost 6 years ago, and have variously been on Lamotrigine, Tegretol, Epilim, Topamax, And one other whose name eludes me. I am now on 1200mg Gabapentin (Neurontin in US) per day, and my Neuro seems intent on adding Keppra to the mix when I see him in person at the end of the month. Still not controlled, although my seizures dropped by about 50% when I stopped eating/drinking anything with Aspartame in, and they dropped again earlier this year when the family started eating a gluten-free diet due to my 7 yr old being diagnosed coeliac. But still not seizure free. I'm having about 1-2 seizures a week (2 yrs ago I was having around 5 a day!). Good Luck, and I hope you get there, but there will always be 30% of people with epilepsy whose seizures will not be fully controlled by medication. However, on the flip side of that statistic, it must mean that 70% of people with epilepsy ARE fully controlled by meds. Here's hoping your in the better side of that!

 

[Belinda5000]

I've been on meds for 45 years and I've tried 21 different meds.
I'm allergic , med resistant to a lot of them.
I'm refractory and never know when I'll seize.
I still seize end up in the E/R and I take my med religiously.
Belinda

 

[Crazy Monkey]

I have been on meds for 20+ years, I have chopped and changed and never gained full control, I am currently on Lamictal, I have no side effects and gained only about 30% control, its the best so far so I am hanging onto it.

 

[Cint]

Let's see, I've taken:
1)Dilantin
2)Tegretol
3)Phenobarbitol
4)Lamictal
5)Neurontin
6)Felbatol
7)Sabril (as a drug study)
8)Trileptal
9)Topamax*
10)Keppra*

*currently taking

I had a left temporal lobectomy which was not successful and have had two VNS surgeries. Before the lobectomy, I was having 4-5 CP seizures a day, and after the lobectomy I started having TC seizures along with the CP seizures. Since the VNS, I usually can stop the seizure, but I have it set at "rapid cycling". Nothing else works for me. I also have diabetes, so I do carefully watch my diet and have to do insulin every day.

 

[Meetz1064]

Hmmm,

let's see. The first 18+ years of my life, I was under VERY good control with just Dilantin and Phenobarbital. But, since I came down here to go to college, I have had a few rough spots. Let's see if I can remember them all:

Dilantin
Phenobarbitol
Felbatol
Neurontin
Depakene
Depakote
Clonazepam
Lamictal
Carbatrol
Keppra
Topamax

Oh, bejeezers.........I can't remember the rest of them. There's at least 6 more.....Right now, I'm under control again, although a few months ago, that was debatable. For the most part, I've been under control, except when there's been huge hormone fluctuations, and then trying to get them back under control. And it's ALWAYS taken months, if not at least a year or more....

 

[brain]

Edited - due to several emails, request
for me to post my meds have been posted.
Just scroll a little bit to see it as I placed
it in the quote box to save space.

 

[flinnigan]

I had been having seizures since I was 9 but didn't get diagnosed until age 44. I started with Keppra then Depakote then on to Trileptal. No relief from any in fact they got worse while on the Depakote. I was fortunate to be a candidate for surgery and had a lesionectomy and hipocampus removal this past June. I'm still on Trileptal and will start weening off it in June of 2010 so far no seizures. If I do seize then all bets are off I'll probably never get full control, I'm not sure if one really does. We're always going to be at risk. The side effects suck even after six months (Michigan law) I'll still be afraid to drive because of being so drowsy. Sometimes one has to carve out a new normal for oneself. Good luck and a lot of it is just luck.

 

[tabbycat]

i was diagnosed 1997; put on tegretol. nearly 100% seizure control and no side effects. no seizure since 1999; therefore the dr said i should stop the medication '06-'07. the seizure (slightly different) came back during that period but i didn't realise it was epilepsy. saw a dr i june and i was put on lamictal. no side effects but not quite under control but it's not bothering me.

so: two medicines, no side effects and nearly no seizures.

 

[darcness]

My wife got control while on Depakote, but the side effects were too much. She's now switching over to Keppra and so far, so good. So 2 meds, 95% control. The only thing she's had since getting on medication is myoclonic jerks at night (while on Depakote) and one "episode" that I think was a very mild partial.

 

[Dutch mom]

My boy started to have seizures at age 1,5 (known case is braindamage, he's a special needs child.) At age 3 he was diagnosed with Lennox Gastaut syndrome (which tends to react very poorly on meds.)

He has tried many meds in several combinations of 2 AED + 1 benzo
(has used Dutch brand names so I'll mention the generic name in English.)

- Depakine
- Orfiril
(both natriumvalporate)

- Topamax
(toparimate)

- Ethymal
- Zarontin
(both ethosuximide)

- Rivotril
(clonazepam)
- Frisium
(clobazam)
(both benzodiazepines)

- Keppra
(levetiracetam)

- Lamictal
(lamotrigine)

- Luminal
(phenobarbital)

- Taloxa = Felbatol
(felbamate)

At age 5 he started on the classical ketogenic diet and this treatment appeared to be very effective in week one. He's med free since his second year on the diet. He's on this diet for over 5 years now. Not seizure free but with a significant seizure reduction and improved EEG. We still have our ups and downs with seizure control. Anyway, we're happy he doesn't suffer from the many many side effects of ineffective meds anymore.

-

 

[danjor]

I started taking Topamax and then they added Keppra. They are still not under control. Its been about 8 months

 

[brain]

I had received an email requesting
me to post my list of medications .... so here it
goes:

Brain's Historical Anti-Epileptic Medications
(also known as Anti-Convulsants in earlier years)

Brand Name First / Generic Name Following

Allergies:
Phenobarbital
Tegretol / Carbamazepine
Lamictal / Lamotrigine (just added)
Trileptal / Oxcarbazepine
Keppra / Levetiracetam
Felbatol / Felbamate
Dilantin / Phenytoin (Old Faithful)

Discontinued Medications:
Mysoline / Primidone (due to being in Barbiturate Family - Phenobarbital allergy)
Preganone / Ethotoin - increased seizures; discontinued immediately

Meds that were used "On and Off" like a child playing with a light switch,
but never was on long enough to know if such medication was functional or not,
as of note --> none of these medications below were ever in titration: were
slammed on and slammed off - instantly:
Depakene / Valporic Acid <-- Questionable (unable to recollect much on this except that I gained
nearly 30 lbs in 2 weeks? Experienced strange thoughts)
Depakote / Divalporex Sodium (spelling?) -- left me in a "zombie like state" - slept all the time
Gabitril / Tigabine - only on it for 3 days and taken off?

ATIVAN / Lorazepam
Neurologists (via the HMO's) nearly killed this one due to overuse and misuse.
Was used as a conjunction / add-on
Also used as emergency AED
END RESULT:
Not a problematic issue if taken orally
But can be problematic if administered via IV in ER which before a Triage Nurse
learned something later on - after the med wore off it would do two things:
1) create more seizures
2) bringing all back down in control
Mainly it resulted more of #1 than #2.
The Triage Nurse learned that once med began to wear off, to do just the
opposite (a "No-No" in postictal stage) - is to give me food and drink - to
help "get me out of it". Administering a low dosage of Klonopin to level out
the Ativan worked as the titration balanced out.

Meds with the GREATEST SUCCESS and GREATEST Epilepsy Seizure Control:
Dilantin / Phenytoin - (the "Old Faithful")
Klonopin / Clonazepam - (Partner with "Old Faithful")
Zonegran / Zonisamide - (been on it since 2006)
Keto Diet (not a drug) - short term only - to give "body" a med-break between med cocktail
changes; did absolutely nothing for nocturnal seizures
Versed / Midozolam (spelling?) - Hospital ER use only - in acute SE, worked far better than
Lorazepam (Ativan).

Most USELESS Med:
Diamox / Acetazolamide

Meds suggested and discussed over the decades to present but never tried:
Lyrica / Pregabalin
Topamax / Topiramate
Zarontin / Ethosuximide <-- been discussed multitudes of times
Neurotin / Gabapentin <--- been discussed quite a few times

Presently on:
Zonegran 200 mg B.I.D.
Clonazepam 1 mg Q.I.D.
Folic Acid 2 mgs @ AM