Taking drugs for the rest of my life?

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katzy

katzy

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Hey guys, it's been a while since I've logged in. I was diagnosed with epilepsy when I was 13 but found the best drug when I was 15(lamictal). My seizures were controlled for almost 4 years. Out of stupidity, I thought I was cured and stopped taking the med. After about 6 months I got a seizure again, so I had to run to my doctor again for an Rx. My doctor told me that since I was still having seizures off med when I was 19, I would most likely have to take it for the rest of my life. Is it possible for seizures to go away after a while even if you're an adult? or Would I be taking Lamictal for the rest of my life?
 
When I was diagnosed in 2006 my dr. told me that epilepsy is not curable and that I would have to take meds. for the rest of my life.
I think we're pretty much SOL!
M
 
I'm thinking that unless and until something new comes along in the way of treatment you will be on meds forever and ever, amen. I'm sure I will be. (Is brain surgery on option for you?)
 
arnie said:
I'm thinking that unless and until something new comes along in the way of treatment you will be on meds forever and ever, amen. I'm sure I will be. (Is brain surgery on option for you?)
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I wouldn't want to do surgery since mine is well controlled by medication. I was just curious see if anyone knew someone who got "cured"
 
Katzy,
I've taken drugs since I was 2 and Im 52.I've never been off AEDs and never had my sz's stop.Your sz's can stop at anytime if you've gotten right meds or surgery has worked.I've had surgery been on 23 different meds.
 
Belinda5000 said:
Katzy,
I've taken drugs since I was 2 and Im 52.I've never been off AEDs and never had my sz's stop.Your sz's can stop at anytime if you've gotten right meds or surgery has worked.I've had surgery been on 23 different meds.
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Wow I'm sorry to hear that and I thought my condition was bad ! I've been on Trileptal and Keppra.Lamictal was the 3rd one that my doctor tried and that worked for me. No more seizures, but I got a little curious.
 
I did the same thing as you. Mine came back with a vengeance. I was told mine could go away at around 23. They did not. I've come to terms with taking medicine the rest of my life. I won't bother stopping the medicine again. It works.
 
N Sperlo said:
I did the same thing as you. Mine came back with a vengeance. I was told mine could go away at around 23. They did not. I've come to terms with taking medicine the rest of my life. I won't bother stopping the medicine again. It works.
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I'm not going to stop again either!
 
Been on drugs for 24 years since I was 15. Has really sucked too with all the ups and downs i've had with them. Finally back on a drug that's doing the job.
 
I've had E for over 30 years. After trying three AEDs, to no avail, I had a left temporal lobectomy in 1990 and was seizure free for 14 months. Then the seizures came back with vengeance. We tried another 7 or 8 meds and had nothing but problems. Had my first VNS surgery in 1997 and that help cut back on my seizures tremendously, but I still take AEDs with it and will for the rest of my life. At least I was able to cut back to taking only two AEDs instead of three at one time.
 
I took myself off meds (bad) in my 20s since skipping meds for days at a time had had no effect for quite a while (I had a history of only having complex partials for one or two weeks at a time, then they would go away for months or even up to a year or so). I was then seizure free for 5 years. Then I had a bad series of complex partials while I was pregnant, and then a tonic clonic, and you guessed it, back on meds. I'll be on meds for life, and I'm having difficulties staying under control. I will say, taking meds every day seems a small price to pay for avoiding or minimizing seizures.
 
Since the onset of my seizures 15 years ago I've tried twice to go med-free (under doctor's supervision), but with no success. At this point, I assume that I will be on meds forever, though I'm always hopeful that new, non-med treatments will emerge...
 
@katzy

I read your profile, and you have the same seizures as I do (primary generalized epilepsy) which was confirmed on the first EEG. I've read and my doctor said these forms of seizures are easily treatable with keppra, lamictal, and depakote but since I am obese he didn't want me to take depakote since it's older.

I asked him about how long it may last, he said with the onset of epilepsy at an adult age I will probably remain on medication for the rest of my life. I got paranoid, and before I knew much about epilepsy I said know what I'd rather have surgery than do this... He said I didn't qualify for surgery on the brain since it's primary generalized, said something like you can remove any part of the brain, but it won't stop it. So, that probably wouldn't work...

I read that removing a small part of the hippocampus may reduce seizure the seizure activity of the brain. But, it wouldn't cure it. But, epilepsy is complex so I am probably wrong while my doctor is right. The other two surgical procedures would be VNS or RNS which are only considered when medicine alone does not work.

I was first put on keppra xr, and I asked why it didn't work he didn't know and couldn't say, just hinted it could be related to genes. I asked that I've read that the success rate goes down with each medication but he said it wasn't the same in my form of epilepsy. But I've been seizure free ever since being put on lamictal so I can relate with you on a lot of things there.

It is probably for life. The future may or may not find better techniques or something, but it may not happen within our life times.. I sometimes wish I was born in a world that had the cure for cancer, epilepsy, etc and nobody got sick and died like that. One can only dream.
 
notime said:
@katzy

I read your profile, and you have the same seizures as I do (primary generalized epilepsy) which was confirmed on the first EEG. I've read and my doctor said these forms of seizures are easily treatable with keppra, lamictal, and depakote but since I am obese he didn't want me to take depakote since it's older.

I asked him about how long it may last, he said with the onset of epilepsy at an adult age I will probably remain on medication for the rest of my life. I got paranoid, and before I knew much about epilepsy I said know what I'd rather have surgery than do this... He said I didn't qualify for surgery on the brain since it's primary generalized, said something like you can remove any part of the brain, but it won't stop it. So, that probably wouldn't work...

I read that removing a small part of the hippocampus may reduce seizure the seizure activity of the brain. But, it wouldn't cure it. But, epilepsy is complex so I am probably wrong while my doctor is right. The other two surgical procedures would be VNS or RNS which are only considered when medicine alone does not work.

I was first put on keppra xr, and I asked why it didn't work he didn't know and couldn't say, just hinted it could be related to genes. I asked that I've read that the success rate goes down with each medication but he said it wasn't the same in my form of epilepsy. But I've been seizure free ever since being put on lamictal so I can relate with you on a lot of things there.

It is probably for life. The future may or may not find better techniques or something, but it may not happen within our life times.. I sometimes wish I was born in a world that had the cure for cancer, epilepsy, etc and nobody got sick and died like that. One can only dream.
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Your story sounds exactly like mine. I tried trileptal and keppra before lamictal and did not work. primary generalized is easy to treat with medicine and surgery won't be practical since there is no set location in the brain where the seizures are originating from. Yep one can only dream.
 
lindsayschu2 said:
I took myself off meds (bad) in my 20s since skipping meds for days at a time had had no effect for quite a while (I had a history of only having complex partials for one or two weeks at a time, then they would go away for months or even up to a year or so). I was then seizure free for 5 years. Then I had a bad series of complex partials while I was pregnant, and then a tonic clonic, and you guessed it, back on meds. I'll be on meds for life, and I'm having difficulties staying under control. I will say, taking meds every day seems a small price to pay for avoiding or minimizing seizures.
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That's what I tried too. I tried skipping doses and everything looked fine, so I just stopped taking them completely. A really stupid idea!

Were you on your meds while you were pregnant?
 
After I had the tonic clonic yes, the decision was made to put me on meds. Back then the meds were definitely a risk to the developing baby (tegretol) but the risk of tonic clonics and the lack of breathing during them was a risk of brain damage to the baby too. It was a high risk pregnancy, not only because of this but my son was fine. He had two seizures as an infant but never again. He's super smart and awesome :-)
 
lindsayschu2 said:
After I had the tonic clonic yes, the decision was made to put me on meds. Back then the meds were definitely a risk to the developing baby (tegretol) but the risk of tonic clonics and the lack of breathing during them was a risk of brain damage to the baby too. It was a high risk pregnancy, not only because of this but my son was fine. He had two seizures as an infant but never again. He's super smart and awesome :-)
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Thank god your son is fine!
Even though I'm not planning on getting pregnant anytime soon I'm worried about birth defects.
 
I don't know much about it (I'm sure other members know a lot more) but I've seen some references in passing that some of the newer meds--I think Lamictal is one--are much safer in pregnancy. I was pregant a long time ago and only the older meds were available. They were much higher risk for birth defects so don't take my story as an example!
 
Epilepsy is not curable. It's not like a skin rash that you have and get a cream that you use for a week and it will be gone.

I was diagnosed with epilepsy 11 years ago. I was told I couldn't have brain surgery and I don't think I would have wanted to do it even if I could.

About 6 years ago my neuro suggested a VNS. He told me that depending on how well it controlled my seizures that I may not have to take meds. If I did have to still take meds I may not have to take as many and at such high dosages.

The VNS has helped a lot with my seizures. I am still taking meds but as he said I'm not taking as many and not at such high dosages. I'm sure I'll have to be taking meds for the rest of my life.

There are many women on here that have had children while taking meds. I can't give you any one on one advice about that but there are a lot that can.
 
Epilepsy is not curable--in other words doctors cannot take away your epilepsy. That being said, epilepsy can go into remission temporarily or permanently after AEDs have been discontinued. Remissions are rare, but not as rare as many of us think. If an average is drawn, about 20% of epilepsy patients achieve a full five year remission after AED discontinuation, but this percentage has been carefully categorised according to seizure type, age of onset, and so on. The other problem with discontinuing AEDs is that if seizures do start again after five years without AED treatment, you are more likely to have developed drug resistant epilepsy. Washington University has the most detailed studies and figures about remission sans AEDs that I have found, and you can look there to see how your specific case weighs up. With adolescent onset epilepsy, your odds are better than those whose epilepsy started in adulthood, but worse than those diagnosed in childhood.

http://neuro.wustl.edu/patientcare/...er/patientfamilyphysician/referencesource/iv/

(type control F and enter "RELAPSE OF TREATED EPILEPSY WITH AED WITHDRAWAL")
 
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