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epilepsy

hi. was recently diagnosed with epilepsy.  i am a 36 year old, female.  doctor (neurologist), who i like a great deal, prescribed lamictal.  said it was the best, and newest, drug for my seizure type.  unfortunately, i was taken off of lamictal due to the appearance of a rash.  i'd like to do some research on other drugs people might suggest as being as helpful as lamictal.  i'm not familiar with the drugs so don't want to do the search blindly.  ultimately, it's doctor's call.  i just like to do my own homework and be well informed.  i also like to hear about other people's experiences with the drugs.  thanks, and, in advance.
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Hello there,

I’ve been on seizure meds for almost 18 years (currently I’m on the extended release of lamictal, called lamictal XR,) and thus have a pretty broad experience regarding meds.  I’m 33 years old, and started having seizures when I was 15.  My epilepsy was intractable for almost 13 years, so I had brain surgery up at Mayo Clinic 5.5 years ago, when I was 27.  Although it was a difficult call—brain surgery is never an easy decision, of course--it greatly helped me bring my epilepsy under better control, although I’ll probably be on meds indefinitely.  (a brain tumor, an astrocytoma was the initial cause of my refractory epilepsy) Thus, if I can answer any questions regarding your new diagnosis, please let me know, and I’ll see what I can do to help.

For starters, what type of seizures do you have?  And what type of medication has your neurologist suggested to replace lamictal?  Lamictal tends to have relatively few side effects, one of them being rashes, though, which are serious.  Usually they give lamictal to focal/partial seizures (seizures which start in one area of the brain and then spread to involve either part of the brain, affecting one’s consciousness, or spread to involve the entire brain, called secondary generalized seizures.  Primary  generalized seizures are seizures which start all over the brain at once.)  Doctors tend to use other medications for primary generalized seizures, so my guess is that you have partial seizures, although of course I don’t know for sure.  The list of meds I’ll give you later on in my mail is for partial seizures.  Just so you know, though, lamictal is not really a new drug.  It’s about 20 years old at least.  I don’t mean to sound stuck up, but I totally recommend seeing an epileptologist, or a neurologist who specializes  in epilepsy.  Believe me, from my experience, many neurologists do not know a hell of a lot about epilepsy, and often do not give patients the best fit in terms of medications.  Finding the best med can take many months, trial and error.  Some people are lucky and find that the first med helps, but the ideal drug level for each individual is a hit or miss issue.  It takes many-- 3-4 months--to build up an adequate level of the medication in your blood, afterwards it’s a “wait and see” period.  If you still have seizures at that point, they may either increase your dose or add on another medication.  Everyone is different, of course.  So it’s a lot of trial and error, which can be a pain in the a**.  

All that aside, common options for partial seizures are, to give you some names, tegretol (generic called carbamazepine,) carbatrol (or tegretol XR,) Keppra or Keppra XR (generic called levetiracetam,) lyrica, (generic called pregabalin) Topamax, (generic called topiramate) trileptal, (generic called oxcarbazepine)  zarontin, (generic called ethosuximide) and zonegran (generic called zonisamide.)  I know I’ve given you a long list, sorry about that.  But of these medications, usually the medications tried the first time around are either lamictal, tegretol, trileptal, keppra, or zonegran.  Of these first try medications, keppra, lamictal, trileptal, and tergretol  usually have the fewest side effects on a moderate dose, and are often the first drugs of choice amongst docs for focal epilepsy.  If I were you, though—and I base this on personal experience—I would try either Keppra or Keppra XR, Tegretol, or Trileptal.  These medications, on a moderate dose, are not too bad in terms of side effects.  But again, everyone is different, and it is all just trial and error, really.  Usually, with these medications, an “appropriate level,” or a level that works for you, is just based on side effects, level of the med in the blood, and of course seizure control.  Some people are able to get control using only a low dose, for others it takes a higher dose or more than one med.  If you look on the Epilepsy Foundation website, or the American Epilepsy Society (AES,) I’m sure you can find more information about the medications.  The list of side effects can sound extreme, but don’t let that intimidate you too much.  Everyone is different, and many extreme side effects are associated with higher doses.    

Again, I HIGHLY, HIGHLY recommend seeing an epileptologist.   Please take my word, they know a LOT more about epilepsy than general neurologists.  I’ve seen enough to know.  I don’t want to sound stuck up, and there are exceptions, but most neurologists I’ve seen are pretty pathetic when it comes to knowledge on epilepsy.  (I was at an epilepsy foundation meeting in Chicago a few years ago, and the foundation had a quiz with a list of questions about epilepsy, and a number of docs, many of whom were general neurologists, got a surprising number of quiz questions wrong.)  From your info, I gather you live in Chicago.  I live in a suburb an hour NW of Chicago.  If I were you, I would schedule an appointment with either Dr. Michael Smith—an epileptologist at Rush, also my doc—or Dr. Donna Bergen, also an epileptologist at Rush.  They’re both good docs.  University of Chicago has some decent docs, some of whom I know, but I think docs at Rush are better.

Also, have you had an MRI yet?  Do they know why you have started having seizures?  In general, about 70% of cases are considered idiopathic, i.e. the cause is unknown.  30% of cases are related to scarring in the brain from an accident or an infection like meningitis, genetic causes, brain tumors, or other causes, for example.  Many brain scans are of course normal.  Well, I know I’ve thrown a lot of info your way, sorry about that.  But if there is anything else I can do, totally let me know.  You can send me a note, if you’d like.  Whatever works.  But good luck!  I know it’s hard and a pain in the a**, but it just involves a lot of patience.  So much of this is trial and error….it took me some years of personal experience to learn a lot about epilepsy, and some luck.  I tried many options and meds for control of my epilepsy, but only surgery helped me with my refractory epilepsy.  But of course that is a possible option way down the line, and only for people whose epilepsy is intractable.  70% of cases are controlled pretty well with meds, if it makes you feel better.  Some can have some rotten side effects on higher doses, so I hope you don’t have to go that far.  Well, best to you—
Cheers,
Spitfire2


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