Still having a difficult time understanding this

[notime]

Hi,

I have been researching and trying to study epilepsy, but I cannot find many answers to this question I have. As you know, recently I had another seizure and my doctor increased my dose of 500mg of levetiracetam er from 2 pills twice daily to three pills twice daily.

I've read that usually the first medication has a 70% chance of working, and if it doesn't work by the 3rd medication then that means your epilepsy is the form that will probably not be easily treated by medicine.

If you have no problem answering this question, this is for people who got their seizures under control. Did your first medication work or did you have to change it or increase the dose and did it stop it or reduce it by a lot? I am sorry, I just want to know if I still have a high chance of treating primary generalized epilepsy if my neurologist assumed that my dose needed to be increased.

Please help me understand this, I am just afraid that I may be in that 25% or so that may have a difficult time being treated. I only have seizures once a month or so usually, but it was few months before.

Thank you.

 

[Janus]

Hi, my first medication did not work at all and I see many, like me, that have to change a dose or a medication all together repeatedly to find the right med/right dose because every issue is so variable. My guess would be that you have much, much more trials to find if it is 'not treatable by meds.'

 

[jas]

Keppra was the first medicine I was placed on and didn't work for me. I tried different dosages before my doctors weaned me off of it. Then came Lamictal, which I hated because it broke me out really bad. I'm 19 and I probably look 16...I don't want to look like I'm still going through puberty. Now I'm on Trileptal and it too is breaking me out but seems to be working.

I share all this to say that it's a part of having epilepsy unfortunately. It's very trial and error with these different medicines. Don't fret, you have time to figure these things out.

 

[valeriedl]

I share all this to say that it's a part of having epilepsy unfortunately. It's very trial and error with these different medicines. Don't fret, you have time to figure these things out.

This is very true. Unfortunately you can't expect the first med that the dr puts you on is going to work.

I was diagnosed with epilepsy 10 years ago. I've been on so many different meds and dosages through the years that I've lost track. Some I had to come off of because I couldn't deal with the side effects and others I had to stop taking because no matter what dosage I took they didn't do work.

Three years ago I had a VNS (vagus nerve stimulator) put in. I'm also taking meds too and my neuro had to work around and figure out what ones would work for me. Since then I've gone from having about 5 seizures a week to about 5 a month. I wish it was less than that but it's a lot better than it was.

 

[kirsten]

"I've read that usually the first medication has a 70% chance of working, and if it doesn't work by the 3rd medication then that means your epilepsy is the form that will probably not be easily treated by medicine"

I think this question is oversimplified and thus impossible to really answer: If your first three medications were drugs that had low success rates for your type of epilepsy, the fact that they didn't work would be meaningless. Also, finding your personal therapeutic dosages of those three medications would take a little time and effort. If you were taking a commonly accepted dose but your blood levels weren't indicating that, they'd not be effective either. Essentially, how good your neurologist is will have a big role to play in how successful your first few attempts are.

I would also question where that percentage came from. 70 per cent? It sounds too good to be true. I would think there are a number of percentages floating around medical sites depending on how the trials were carried out and I think it'd be a good guess to say that some probably say a rather low percentage of epilepsy patients get relief from their first medication.

On top of that, side effects play a major role in determining whether or not you can use any of those first three medications. That will probably be the main factor that will guide your treatment, and not the efficacy of the medication itself.

Finally, the statement that your epilepsy will not be 'easily treated by medication' lacks a real definition. What is considered easy and what is considered difficult and what is considered intractable?

I know it sounds as though I am being overly skeptical and difficult. What I'm really trying to do is unload that very loaded statement because it makes it very difficult not to catastrophise. It sets you up for failure. I'm also trying to put across that every case is just too unique to turn into numbers like that. Sure, if you were looking at a sample group of 10 000, you might see patterns emerge but your path is highly unlikely to fall into that pattern. Better to treat your scenario as yours alone. Unfortunately, the best way of dealing with it is by staying in the day and trying not to predict the future.

 

[kirsten]

I didn't consider another important factor that will influence how efficient anti-convulsants will be. You might take the right medication for you and it may be ineffective because your lifestyle is conducive to seizures. Perhaps your stress levels are too high or maybe your computer is causing seizures. I could go on. Any statement that claims to know how successful the first epilepsy medications will be is only realistic if it takes account of the lifestyles of the sample groups.

 

[cadsgj]

Interesting, very interesting. My first medication was dilantin and for some reason they had to give me alot of it to somehow reach a certain level in the body. I am not 100% sure but if I remember correctly (18+ years ago) I was taking 800mg per day and was having "NO" seizures. I guess they check the blood to see just how much one needs per day and back then I had read the max per day was 600mg. Well I was not happy that it took 800mg per day to get the level in my blood where they thought it should be, even though I was having at the time no seizures. Anyhow, I wanted off dilantin and that is where my nightmare started which lead me to surgery 3 times. And to date, they have yet to get me free of seizures since I left dilantin onder:

 

[Intothatendlessblue]

My first medication was Keppra at 500mg 2x Daily. It worked for about a week. It was then increased to 750mg 2x Daily... that worked just long enough for me to feel comfortable enough to leave the country for a year studying abroad (about a month and a half). After that my doctor upped the dosage to 1000mg 2x Daily... which didn't work at all. I was in Turkey and this point and a doctor there recommended combining the Keppra at 750 and Tegretol at 400mg 2x Daily. I've been Seizure free since I started on the combination of the two medications. I know that it's not fully an answer to your question, but my thought was this... you maybe in the group that Keppra works fine for or you could be in the group that it doesn't. Maybe you'll need another medication or a combo... but try to take a deep breath and not get stressed out about it. I've made it a point to take a step back from doing research all the time. I want to know everything I can about my brain, my condition, my medication, my future... everything, but I realized that getting upset or stressed did nothing but make the situation worse. Deep breath. You are strong enough to get through anything.

 

[Janus]

I have been told by a pharmacist that sometimes smaller doses are more effective than bombarding with high amounts and often its a combination. I am now on 750 mg keppra twice a day. After trying 400 mg, 3 times a day and seizing in scary public places without warning. So the experimenting still goes on for me. I want my energy back and to feel better. I can only attribute this lack to the meds.

 

[notime]

I have been told by a pharmacist that sometimes smaller doses are more effective than bombarding with high amounts and often its a combination. I am now on 750 mg keppra twice a day. After trying 400 mg, 3 times a day and seizing in scary public places without warning. So the experimenting still goes on for me. I want my energy back and to feel better. I can only attribute this lack to the meds.

Yeah, I understand what you mean about lack of energy; however, before being diagnosed with epilepsy I still had energy problems. I guess it could be related to not taking my medication for hypothyroidism, but I am forcing myself to take it now.

I feel extremely tired, and when I started taking keppra xr I noticed that I was like 15 to 20% more tired, worse brain fog, etc. I guess it's easy for my neurologist to up my dose since I am obese, 275lbs. My parents doesn't have the money to get any exercise equipment I guess money is more important than health.

I wish I could do something about this, I just don't feel right. I am always tired, brain fog, my eyes are always dark under my eye even when I sleep normal7-9hrs. Have been for years, could be hypothyroidism I suppose.

I just tried taking diet sodas out of my diet and will see if drinking water, greentea, orange juice will help me any and perhaps will try a diet of some kind. I am forcing myself to study for the GED, starting off slowly but it's frustrating, boring, I get tired from it and depressed. But, I guess it will get better I hope. I think education is the only way I can improve the quality of my life since money is everything.

 

[Chaz1]

what we seen, there can be honeymoon period, it working fine, but give it a year or so, and more often than not increase needed......but there HAS to be limit to increases and add ins..or it can/will take down rest of body/mind...

 

[jyearta]

It took several tries and it has always taken two meds. to control my seizures for the most.

Hang in there, it takes a while to find what works for you.

 

[Juju26]

Small World

I'm six months into having seizures and just had a seizure several days ago....

I too am still having a difficult time understanding this, I don't know how much longer I can put up with this. Just sitting here typing this, I think I may have had 3 split second simple partial seizures in my legs.

I started with Keppra as my first anticonvulsant med too, at 1,000 mg a day in March , after 6 seizures at that dose I was moved to 3,000 in June...and at that dose I've already had 3 seizures.

Again, I don't know how much longer I can put up with this, but I know I will find a way to make it through.

 

[masterjen]

A whole lot of patience is required when trying different doses, trying different medications, trying different combinations of medications . . . I'm 3 years into it, and still haven't found adequate control of seizures. And I know many others here have been fighting the battle for seizure control much longer than I have. Everyone loses their patience from time to time; we wouldn't be human if we didn't. Just keep a good journal of your experiences with every medication and every dose, and that will go a long ways to helping your neurologist find what works best for you.