JME; Running out of options

[rhiz]

Hi there,
It's been a while since I posted on here, I'll post a brief history

I'll start by saying I'm 22 now, and I was diagnosed with JME when I was 13 after having several myoclonic jerks.
I was put on Lamictal which was increased to the maximum, had no control of jerks. After this at about 15/16 I was switched to Keppra, again maximum dose in the end, with no control of my myoclonic jerks AND the new introduction of tonic-clonic seizures (reading up on it this is common apparently).
When I was 18 I couldn't take the side effects for no seizure control, so demanded I be changed from Keppra, and was put on Topirimate. However by 21 I was still having seizures on this also (dose of 200MG twice daily) and suffering severe cognitive decrease (which meant trying to think and write at the same time brought on myoclonic seizures too as thinking was so hard!!)
I'm in University now and have been changed to Epilim. Been on 300MG twice a day since December 14, and have noticed my myoclonic seizures becoming more aggressive feeling and spaced out. Also the side effects are already impacting fairly hard. My specialist insists Epilim is a mood stabilizer however I remember feeling exactly like I do now on Keppra, and it's very awful. He wants me to go on an antidepressent to counter it, but I don't want to be on it at all let alone taking more medication because of it

My specialist says I've now had the main 4 JME treatments and anything else is a stab in the dark. But I was wondering if anyone has tried anything else and had success or in particular, Zonegran, which is what I wanted to take instead of Epilim.

That's a very long post, but I thank anyone in advance that reads and replies!

 

[masterjen]

Has your doctor ever suggested combination drug therapy of the more favorable drugs you have already tried, or considered adding/trying clonazepam? Has the option of dietary treatment, such as the MAD (modified atkins diet) been suggested as a possibility?

 

[rhiz]

Has your doctor ever suggested combination drug therapy of the more favorable drugs you have already tried, or considered adding/trying clonazepam? Has the option of dietary treatment, such as the MAD (modified atkins diet) been suggested as a possibility?

Thanks for your reply!
he hasn't but I'm hoping if he won't use zonegran as a monotherapy then adding lamictal. I didn't get any side effects from that really
Not had any of these other options proposed to me but I will look into them thank you

 

[Zolt]

Hey Rhiz,

Personally I'm not a fan of combination drug therapy unless if you are having seizure day in and day out and nothing is controlling it. If that is the case do whatever it takes to get it under control. If you have seizures every now and then, i would recommend going through all the drugs for epilepsy one at a time, that way you know what is effecting you and how. There are some 30+ drugs out there for seizures. Some drugs will not show negative effects till well into them. One of my drugs i was on did show it's ugly side effect till 6 months into taking it.

For me, the drug i'm now on is Gabapentin, and it has giving me a way to control my seizures so they happen in the mornings. How, well since the drug only works for 6 hrs, by the time i wake i have no drugs helping me. So in the mornings, i do not take my Gabapentin pill for 1 hr after i wake, which causes my seizures to happen in that 1 hour time frame. It's a way to schedule my seizures for the mornings, in the safety of my home. Now that is a God sent for me.

iano: op:

 

[donding]

I'm on Lamictal and I don't notice any side effects from it...at least not that I can tell, but like you it doesn't control them just makes them less severe. I at one time was on Keppra and Zonegran. I don't know if it was the combination of the two or not but if I had a gun I could have killed someone then drive off a cliff to kill myself. I'm not that kind of person so I went off the drugs immediately.

 

[AlohaBird]

Personally I'm not a fan of combination drug therapy.

For me, the drug i'm now on is Gabapentin, and it has giving me a way to control my seizures so they happen in the mornings. How, well since the drug only works for 6 hrs, by the time i wake i have no drugs helping me.

I agree. I'm trying to get off both my phenobarbitol and depakote but now finding out about the interaction between the two of them, the depakote potentiates the pheno and raises serum levels of it so if you cut back both meds a tad it is like dropping the pheno abruptly.

That Gabapentin sounds awesome. I have nocturnal seizures and that would get me through the night but not mess with my days. Must ask neuro about this.

 

[lindsayschu2]

A note about gabapentin: It is known to make myoclonic seizures worse in some people with JME and generalized idiopathic epilepsy, just like lamictal and tegretol. I am one of those--I was put on increasingly higher doses of gabapentin and that is when my myoclonic seizures started and got worse and worse. My current neuro thinks the gabapentin kindled this latent type of seizure and, so, note that while it may work for some, it definitely does not work for all. It's often avoided in JME.

 

[masterjen]

For me lamictal seemed to trigger my myoclonics to start. Either that or very coincidently my myoclonic seizures happened to start at the same time I reached near therapeutic dose of lamictal. Tegretol also did not help them, but the tegretol was reducing the partial seizures I was having at the time. Keppra was added in, and at only 1500 mg (500 am and 1000 pm) the myoclonics were 80-90% controlled even though I was continuing to take the tegretol. (This was some time ago, as since then diagnostic testing has led to using different medication).

 

[lindsayschu2]

Really Jen--that's interesting (and unfortunate). I had only ever had a few episodes before gabapentin--after that, lamictal, once I hit 600 mg made me shake, rattle and roll non-stop and I could not go back to tegretol either, though both helped partial seizures for me too. Some people on JME do OK on these drugs though . . I know I don't!! Doesn't sound like you do either.

 

[masterjen]

Really Jen--that's interesting (and unfortunate). I had only ever had a few episodes before gabapentin--after that, lamictal, once I hit 600 mg made me shake, rattle and roll non-stop and I could not go back to tegretol either, though both helped partial seizures for me too. Some people on JME do OK on these drugs though . . I know I don't!! Doesn't sound like you do either.

It is interesting, I agree. I wonder if those who have myoclonics but who do not actually have JME (you don't either, do you lindsay?) do poorly on tegretol and lamictal as a general rule, but those with JME can be expected to see improvement - something to do with the nature of the pathology of JME myoclonics and non-JME myoclonics???

 

[valeriedl]

I began having seizures and was diagnosed with epilepsy when I was 27. I don't think that I've had myoclonic jerks in the past. Recently I had a seizure, pretty sure a simple partial, but I was shaking during it. So I don't know if those were considered myoclonic jerks or not.

I am on a few different meds. It took a few years to figure out which meds and dosages worked best. With some the side effects were too bad and others did nothing for the seizures.

I got a VNS (vagus nerve stimulator) in 2007. It helped a ton with my seizures. I'm still taking meds and having seizures but nothing like before I got it.

 

[lindsayschu2]

Jen, no I don't have JME--But my neuro thinks I have Idiopathic Generalized Epilepsy (close cousin to JME) in addition to Temporal Lobe Epilepsy though, because of the myoclonic seizures since they are very definitely seizure like (beyond just jerks and definitely not simple partials) and I have some family history of absence and tonic seizures. EEG confirmed the TLE. So either she is right and I'm one of a very small minority that has two types of epilepsy, or she is wrong, and gapabentin or my head injury actually caused these new seizure types. I think about this a lot and wonder if some of these drugs can actually kindle myoclonic seizures where no syndrome existed before. I've read a lot about it though and have only read that they can cause myos, but they stop once the drug is stopped--unless the person has JME or IGE, and those drugs can make the condition worse. I wonder if either you could also have both types of epilepsy, or, have you had a head or spinal cord injury? You also seem to experience the two families of seizures, so I've been curious. Sorry to hijack!

 

[masterjen]

I am now off tegretol, lamictal and keppra, and now am on valprioc acid as well as neurotransmitter replacement medications. I continue to have myoclonics but instead of them being any old time like when I was on lamictal and tegretol they now primarily only when I am weakened in some way: during illness (such as a bad cold as I have had for the past 2 weeks), due to overused muscles (even if they are not the ones used during the work-out myoclonics will affect them), or after a bad night with nocturnal (tonic) seizures.
The term generalized epilepsy has never been used by my neurologist, although nocturnal tonic seizures have been diagnosed, and when I look up tonic seizures I note that they fall into the generalized category.
I've never had a head or spinal cord injury, fortunately.

 

[lindsayschu2]

Who knows . . my epileptologist explained to me idiopathic generalized epilepsy is different than generalized seizures--one's a syndrome, like TLE or JME, the other a type of seizure. IGE generates seizures from throughout the brain instead of from a single lobe, I think, even though not all of the seizures you get are tonics, and it's often passed down through families. I mostly get myos during female hormone times now, or when my electrolytes go off the grid again. I'm sorry you still have them at all, as well as Rhiz. No matter how we came by having them, they are no fun!

 

[snowball]

Hello, I am new here. I have had JME for 35 years now. I am up to my 8th tablet change. I too have myoclonic jerks that just wont respond to drug treatment.

Dont panic about what will be. I was one of the first on epilim when it came out. It was nasty stuff and I was still having tonic clonic seizures on it up until 1996. Then clonazepam was added and tonic clonics have never come back.

but now I am stuck on benzos for life. I dont like that, but no option back then. I remember when lamictal was experimental plus the others like vigabatrin, keppra, topamax. See something new will come along as you get older...like me.

I am currently chnging to zonegran. Its not going as bad as some of the others but its not good either. I have awful anxiety at the moment I do have anxiety (GAD) but currently just on my usual epilepsy drugs. So, I am not sure if the zonegran is making me nxious or if I am anxious cause I am changing tablets and feel different. So, plodding along.

 

[seagull]

I was one epilim years back it made me jittery I was only 30 at the time and I lost all libedo doc told me that more common with men.i came off it just made my hands tremor to much.realised when cutting me mums hair she stopped me my hands shaking to much to be using sicissors

 

[cat lover]

have you ever concidered the medication dilantin & tegretol? they have worked great for me for 56 years . check with your dr. ive never exp. your type of seizures

 

[seagull]

I having problems posting on other thread..so put it here. all where you getting holbens paste and do you take it or rub it on.i got one reply from states but got horror of putting bank details down and I thought get in uk but it not the same stuff

 

[kitty]

Most epileptic drugs themselves cause us that I am on zonegran people need keep close eye on there manganese magnesium potassium iron b12 all these can trigger seizure and anxiety as well I am in zonegran an cause it turns u off eating as well u get even less vitamins so supplements an b12 shots are vital