Don't suppose anyone might suggest which med to try next

[lindsayschu2]

I thought I was doing well on my Lamictal Topamax combination after my last med hike, and after my run, whammo, an hour and a half of cluster simple partials, still rolling along as I type. I can't go any higher on Lamictal, and each hike of Topamax means insane insomnia for a month (still dealing with that from the last and I'm just not sure Topamax is helping anyway). I have an appt with an epileptologist on Wed., and I would like to at least have an idea what might be good to try so she doesn't automatically put me on something that will make me gain huge amounts of weight (yes that would be an issue) or turn me homicidal, and Keppra reviews sound universally horrible for that on Askapatient. Anyone have any thoughts?? Tegretol washed out for me too. I have temporal lobe epilepsy with simple partials, complex partials that can generalize but rarely do, and something I think are myoclonics. Any thoughts welcome. Maybe I won't be able to solve this with any med, I know that . . .

 

[qtowngirl]

first off go 'yayyyy!!!' that with weight gain such an issue, lamictal didn't do it. it's a classic side-effect, and the main reason i was like 'no i'd rather not' to my epi. in our first consult. she also said keppra where i'm like 'hell no, move on please!'
so, i decided to try the lamotrigine (lamictal) and tho i did gain weight it wasn't anything to shake a stick at. some will gain 50 or 60 pounds, mine was around 6 or 7, and have been on it almost three years.
topamax tried also, was a seizure genius until halloween night 10.5 months later. was seizure-free then i went way, way down. he tried doubling the dose (yeah, overnight, no ramping up - really, and you're a licensed neuro?!?!). that f'd me up, was so loopy, and szs remained.

turned out it wouldn't matter what i was on, they found a lesion and it had to be removed. so on that note, i can't exactly suggest a good one, but do have educated opinions against some. first off would be keppra, there's just too many risks. not to say it wouldn't work, but the risk is, imo way too high.
the next is vimpat. grrrrr. does help many with seizure-control and tho for some it has little side effects, for majority the effects are high, which doesn't make the sz control worth it. i hated it. did i say hate? HATED IT. would never recommend it, esp. as you have a number of other choices left.

my best suggestion is this... www.ncbi.nlm.nih.gov/books/NBK2597/
has been more informative and in-depth than anything i've ever found.

 

[kirsten]

The only medication that commonly causes weight gain is sodium valproate and the rest of that family (semisodium valproate, valproate etc). With the other AEDs, weight gain happens rarely. I've taken all AEDs that were first marketed before about five years ago and valproate was the only drug that increased my appetite.

The reason I like Keppra is that it didn't make me drowsy or have many side effects at all. I have taken it twice in my life and it did cause enough irritability to affect my quality of life but, again, you can never know how you will respond to a medication until you've tried it. I would give it a go if I'd not tried it before because it has such a low side effect profile and it's an especially efficient drug.

Add on AEDs: Neurontin, although I don't have a lot of faith in it because of its trials.
Phenytoin: first synthesised in 1919. That should tell you a lot. It's clearly a last ditch drug, given that the pharmacies I get it from generally don't keep more than a bottle or two of it and can tell me how many years it's been since they last sold any. But if you're running out of options, it's a possibility. I'm on it now and I've had two weeks seizure free, and so I know that I have very few side effects from it--I felt very clear and had a really great memory. It absolutely will not cause weight gain because it does the opposite.

Honestly, if I were you I'd try Epilim, then Keppra, then the new AEDs, then phenytoin. You can have a look through this site because it puts all the AEDs in one place and tells you everything from an evidence-based viewpoint. http://www.crazymeds.us/pmwiki/pmwiki.php/Meds.Neurontin

 

[lindsayschu2]

Thanks guys--qtown that reference was SUPER helpful. There are a lot I can't do--anything that exacerbates myclonics is right out for me, and I was surprised how many of them do that!! Kirsten Neurontin is one of the ones that can cause myclonics for some people and I am one (I had it bad on that drug) so that won't work. I'm glad to hear that Keppra wasn't a problem for you at least because it honestly seems like the best choice in dealing with refractory partials, myclonics, no weight gain, etc. The really bad things I read though are the horrible mood issues and while a lot of people say it made them sleepy, a lot list insomnia and it would be hard to deal with that again after Topamax. Let me take another look at Epilim.

 

[marika853]

I have been on generic Keppra since 2006 and have not had the rage issues at all. Everyone is different. I agree with Kirsten, give it a try. I only take 1000 mgs. daily but it controls me very well with no side effects.
Good Luck!
M

 

[masterjen]

I was on Tegretol, and Keppra was added to control myoclonics and admittedly it did substantially (about 80% improvement), and I didn't have to be at too high a dose to achieve that (1500 mg), so I think that is why I didn't have anger issues. At one point we did try to up that dose in order to obtain better control of the partials, but nights were horrible: I'd get to sleep fine but after a couple of hours I'd wake to my mind racing and it would take ages to get back to sleep. Then vimpat was added in, and really all that did was worsen side effects. After a complete overhaul of medications we tried Vimpat as monotherapy, but this did not work as well to control myoclonics for me, and a new (or previously controlled) seizure type emerged: tonic seizures, and I still can't get these under control

 

[lindsayschu2]

Marika--were you considered refractory, or had you tried a number of meds prior to trying Keppra and having success? MasterJen: How long were you on Keppra and dealing with insomnia--in other words, did you have insomnia indefinitely, or just for a short time before making a switch?

 

[Belinda5000]

Weight gain is differnt for everyone with these meds because I gained with Neurontin and it gave me suicidal thoughts also.

Tegretol doesn't work for you but is one of the few works for me.

Tegretol,Topamax.I can't take a lot I'm allergic or med resistant to them.

Gabatril worked for me until I became allergic to it.

 

[marika853]

Keppra is the one and only med that I have been on. I do have insomnia but I don't think it's related to the med. My husband of 38 yrs. passed away in 2008 and I am also dealing with a bipolar son. I'm going to my neuro in June for checkup. I have been pretty lucky with my condition. I only have auras and simple partials but none since 2008. Did try to reduce my dose a couple of months ago but got down to 500 and started having auras so went back to 1000. Like I said, it is working well for me.
M

 

[C0urt]

just get messed up, do everything.

try drugs.com for a list of interactions and side effects. and see which ones you can live with

 

[lindsayschu2]

Belinda Tegretol worked for me for almost 2o years. I was on 400 mgs and not even at therapeutic levels when all these seizures came back. Instead of upping the dose to where it once had been, we added Topamax, then Lamictal and dropped Tegretol, etc etc. There are days when I really wonder if I would have avoided all this BS and heartache if my bad neuro would have just increased the drug that worked for me for most of my life. Thanks C0urt I'll try that too.

 

[Annie pierce]

I have been on generic Keppra since 2006 and have not had the rage issues at all. Everyone is different. I agree with Kirsten, give it a try. I only take 1000 mgs. daily but it controls me very well with no side effects.
Good Luck!
M

Have you heard of anyone switching from Keppra 1000mg to tegretol XR? Keppra gave me the rage :/ onder:

 

[masterjen]

MasterJen: How long were you on Keppra and dealing with insomnia--in other words, did you have insomnia indefinitely, or just for a short time before making a switch?

Since the Keppra was controlling the myoclonics even at the lower dose (1500 mg), we just dropped the dose from 2000 mg back to the lower level and stayed there. I stuck out the insomnia at the higher dose for only 2 weeks; the racing mind was scary - it wasn't just normal thoughts I was having keeping me awake but very bizarre thoughts. Perhaps they would have subsided had I stuck it out, but for me and the fact I live alone, it was just too frightening. I can handle the more typical side effects of intermittent imbalance, eye sensitivity, mild headaches, etc., but not the racing mind part.
Because nocturnal partials were still an issue (I was maxed out on the tegretol in terms of side blood level and toxicity) Vimpat was added in.

 

[lindsayschu2]

Geez the crap we all deal with trying to find the right meds, combinations and dosages. I suppose there are far worse conditions we could have for sure. But still, I feel for us all

 

[Penny]

I have tried almost all anti-epileptics either for my bipolar or now for epilepsy (as a result of stroke). The one I always refused was Depakote (valproate) because of it being so well known for weight gain. Well, eventually you get desperate and just want the seizures to stop no matter what you have to do. I started Depakote a week ago today at 500mgs and will start taking it tomarrow 2xs daily 500mgs for a total of 1000 mgs. I absolutely love how peaceful I feel on it. I am working really hard at controlling eating between meals though. That's always been my sore spot. I am still on 100mgs 2xs daily lamictal but I will be cut totally off it next month. He had to lower it 300mgs daily to keep Depakote from making it toxic but he couldn't take me totally off it as I have been on it 7 years. I am also on 1200mgs daily trileptal and .25mgs 2xs daily klonopin which isn't much but has worked greatly. He is getting me off it within the next 2 months also but it helped take me out of postical psychosis so I will not go off until about a month before VNS surgery.
Hope you find one that helps!

 

[qtowngirl]

onder: that is odd (but good!) re: not causing weight gain. that is not what i learned three years ago when first researching it. i looked again after reading this now and yeah, if it does affect weight it's more known for weight loss. sigh of relief

all i can say re: the keppra is yes, some people aren't affected as others are as far as rage and mental thoughts, but this is not the majority. lindsay that's smart for you to try epilim first.

:hugs:

 

[lindsayschu2]

Isn't Epilim Valproate? That's the one with the worst weight gain right? Our choices are always so appealing: fat, bitchy, bald, depressed But seizure free is the goal. These are great ideas and they will help when I go to my appointment. Finally seeing an epileptologist after seeing a bad neurologist for years, so hopefully I will get a new perspective. Thanks a lot for your help!!!

 

[qtowngirl]

Finally seeing an epileptologist after seeing a bad neurologist for years, so hopefully I will get a new perspective.

for those of us lucky enough for it to be possible, this changes everything.
good to hear