Can my seizures get worse even if I take medicine?

[notime]

I was recently diagnosed with epilepsy as many of you know, and the doctor believes it is genetic. I asked that if he will consider taking me off within 4 to 5 years if I remain seizure free, he said he thinks that's a bad idea and I will probably have to take it for the rest of my life.

My question is, will these seizures get worse over time if I continue taking medication? Like, is there a risk that it will get worse? I've been taking medicine for close to a month and haven't had a seizure yet but they only happen every few months.

I asked after being told that I have to take medication for the rest of my life, if I would be a candidate for brain surgery or VNS and he pretty much said no. I am not sure if he is an epileptologist, but he has had a fellowship in epilepsy for like a year or two.

I won't be seeing my doctor until 3 or so months, and I don't really care to call.

Thank you.

 

[Fedup]

notime

There is no way of knowing if your seizures will get worse or not, the possibility is there. I have been taking medication my whole life like a lot of others here and mine got worse as I got older and then leveled off. Always keep asking the questions one day you could be lucky.

 

[CQ:)]

:agree: with Fedup,
In reality each & everyone of us with epilepsy is different, we all have different seizures, react differently to meds (eg side effects & what meds help with the seizures) & other treatments (eg surgery, VNS).

Some people can have good seizure control on just one med but others have to try a variety of meds to get their seizures under control.
In regards to if you will be able to come of your meds if you remain long term seizure free that is something you & your neurologist need to discuss.

I have had epilepsy on & of for most of my life, I started taking seizures when I was 9 months & took tonic clonics until I was 3 - 4 but was taken of meds when I was 7. I had no more seizures until 2002 when I was almost 25, when my seizures returned I was put straight back on meds. I mainly had simple/complex partials but we couldn't get them under control with meds so after trying 5 meds my neuro suggested I look into haveing brain surgery.

I had brain surgery in March 2011, so far I am still seizure free but I am still on meds. I will most likely be on meds for the rest of my life but just at a much lower dose then what I used to be on (before my surgery I was on 3 epilepsy meds, I am now on just 1 med).

 

[CQ:)]

I asked after being told that I have to take medication for the rest of my life, if I would be a candidate for brain surgery or VNS and he pretty much said no. I am not sure if he is an epileptologist, but he has had a fellowship in epilepsy for like a year or two.
.

I don't know much about the VNS but there are other members who have had the VNS so they should be able to help you.
In regards to brain surgery it is usually considered as a last resort, to be eligible for surgery you have to have tried at less 3 meds with no luck in controlling the seizures then you have to go through a series of tests.
The tests you have depend on the epiologist & your epilepsy.

When my neuro mentioned surgery I had to see a epiologist then I had to have a series of tests which including MRIs (regular MRi & functual MRI), VEEG, Spect scan, Pet scan, neuropsych evaluation.
After I had all the tests a team of specialists (neurologists, epiologists, neuropsychologits, technicians who did the tests, neurosurgeon etc) had a meeting to decide if I was a candidate for the surgery. If just one specialist said no I wouldn't have been able to have surgery but I was considered a very good candidate so was able to have the surgery.

One thing you must remember is brain surgery is in no way a cure for epilepsy but more like another treatment to help control seizures.

I won't be seeing my doctor until 3 or so months, and I don't really care to call. .

Don't be afraid to contact your doctor if you have any questions & if you are unhappy with your neurologist maybe it might be a good idea to look for a another neurologist.

 

[Cint]

I don't know much about the VNS but there are other members who have had the VNS so they should be able to help you.
In regards to brain surgery it is usually considered as a last resort, to be eligible for surgery you have to have tried at less 3 meds with no luck in controlling the seizures then you have to go through a series of tests.

One thing you must remember is brain surgery is in no way a cure for epilepsy but more like another treatment to help control seizures.

:agree: Brain surgery is definitely not a cure for epilepsy, but a way to reduce seizures. I didn't start having seizures until I was 23 years old and after suffering from mostly CP's for 10 years, it was then, I had brain surgery, a left temporal lobectomy. But I was only seizure free for 14 months. After that, the seizures returned not only as CP's, but as TC's as well. So we tried many more drugs....... 11 if I remember correctly, but the seizures kept coming. Then we went with the VNS and that is what seemed to work for me. I had my 2nd battery replacement this April and haven't had any seizures. And I still take 3000 mgs of Keppra along with 200 mgs. of Topomax.

So for some, seizures don't dissipate even after trying meds and brain surgery. They may improve somewhat, but not totally disappear, unfortunately.

 

[Shelley]

I was told that I outgrew my childhood absence seizures.
Nope, still got them, plus a couple other glitches as well.

 

[Belinda5000]

my mother was told I'd out grow my seizures boy were the they wrong.
I can have about 6 different types of sz's and I've never had a year sz free. since I was about 2.

 

[kirsten]

The possibility of a total remission off meds varies depending on the type of epilepsy you have and the age when you were diagnosed. I can't be trusted to remember the stats but I do know that those who're diagnosed in childhood have a better chance. BUT I still haven't come across any studies that show results after five years, so it seems as though there isn't a way to be certain.

Seems odd to me that he would flat out say you weren't a candidate for either VNS or a lobectomy. How does he know? Maybe he's putting you off it for now because you're just starting with meds and might get control? That seems more likely. It's possible that in a year or two, if you don't get control, he might say it's worth checking to see if you're a candidate.