New member - struggling with med changes

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Hi all!
I was diagnosed with Juvenile Myoclonic Epilepsy when I was 13. I was put on depakote and responded greatly to the drug. I didn't suffer through the dreaded weight gain and was 100% seizure free. No breakthroughs, no side effects, it was great.

Well the past 3 or so years, my doctor has tried to convince me to switch to alternate meds because I am female and Depakote is awful for pregnancy. I am by no means trying to get pregnant, but they do not want to take that risk.

I agreed to transition after I graduated college, even though I was absolutely terrified to switch meds. My mother and doctor decided on Lamictal and my body responded terribly. I had break through jerks and twitches pretty much daily, blurry vision, slurred speach luckily I was still living at home because my mom ended up driving me to work for about a month or two.

I told my doctor, I would try one more drug, and if that did not work we were going back to depakote. I started on Keppra and had lamictal completely out of me about 15 months ago. (I am 24 now)

I have responded well to Keppra, no jerks or twitches and completely seizure free since I have been on it. The downside though, is the irritability and mood swings. I am a relatively easy going person, but the irritability side effect causes me to get angry over some of the simplest things.

I take a vitamin b6 daily (although my doctor never recommended a milligram amount, so I don't know if I am taking too much/too little), and I am trying to work this issue out naturally by running daily and getting back into yoga.

My main issue, is my doc responded greatly to me throughout all the med changes depakote to lamictal to keppra. He was always on call for me when I was having seizure episodes and told me what to do/whether to come into the office. I called him about this side effect from Keppra and left a message with his office.

At this point, it have been 3 weeks since my initial message, and I have only heard from his office manager. Apparently he phoned in a scrip for Lexapro to help stabilize my mood. I asked for him or a nurse to call me back and explain Lexapro more/what side effects I may receive from that drug/etc and no one will contact me. (let me stress that I adore my doctor, the reason why I chose him was because I have been to the doctors that you sit in the waiting room for 45 min and see him for 5 min. This doctor seemed different especially through my med changes, but now i would just appreciate him or someone at his office to explain the side effects I could experience with another drug)

I was wondering if anyone else experiences the irritability from Keppra and what they do to handle that issue. I would love to do this naturally and not have to take an additional drug.
 
Welcome RachelGreene

I Know what it's like to have to change meds. I've done it numerous times & it's never been fun yet.

I'm also very familiar with the irritability of Keppra- Kepprage as it's known.

A lot of people have found that vitamine B6 has helped it a lot.
 
I was on Lamictal when I was first diagnosed when I was around 13/14 and was made stay on it for 3 years even though the entire time I was still getting jerks around 10+ times a day and was failing miserably with my school work because of it and they changed me to Keppra too

As soon as I started on Keppra I started having full seizures - not the jerks I had always had before - yet not once did they listen when I asked to be removed off it

I'm still having breakthrough seizures myself and hate the drug, mainly because of the side effects you listed AND weight gain on top.

I've been so "tetchy" and easily irritated and just never happy on Keppra, it puts me on a very short fuse (permanently) and makes me so tired, which doesn't help either!

Personally when I find I'm getting really worked up I go take a lie down and listen to some music and try and sleep it off, but that may just be the tiredness getting to me and that may be how I work it off.

I was on B6 myself for a few months and I found it did nothing for me - it was my last option to keeping on this terrible drug, I'm now hoping to move to Topamax or Zonegran myself.
 
Do either of you know what milligram of b6 is recommended? and where you got it? i am hearing all kinds of things, especially that it could be better to buy it at a GNC or something, better vitamin.

i am so sorry to hear that they keep you on the drugs when they are not being effective with seizure control. I hope you are finding the proper drug now.

I know I have been blessed with having great control of my seizures in these 11 years, minus the few months on lamictal.

I just dont want the Keppra to bring down other parts of my life, like easily snapping at boyfriend and family members.
 
Unfortunately I was only ever told how much not to take! I took as much as I could in the hope I'd perk up, most of the advice I had was from my pharmacist if that helps!

Thank you :) I've had to find the drugs myself because my consultant doesn't like listening to me and I don't think I've seen him face to face in years (I always get his shoddy "don't care, I've written it down" assistants) but hopefully I will be able to get him to change my prescription soon :)

If I were you I'd try and stick at the B6 for aslong as possible (when you get the right dosage - you'll probably get advice on here in time for it!) and see if it works for you, hope it helps you calm down, I know how Kepprage feels and it's nasty :(
 
Hi Rachel, welcome to CWE!

There isn't to be a standard B6 dosage -- it varies from person to person as to what works to offset Kepprage (and unfortunately it doesn't work for everyone). A good rule of thumb is to start with a standard adult dose -- i.e. 100mg once a day, and see if it makes a difference. If it doesn't, try taking the 100mg twice a day (though not too close to bedtime as it can affect sleep in some folks). B6 has no negative side effects at these doses, and there's no reason to go any higher.

Best,
Nakamova
 
Thanks guys, right now i have been taking 100 mg a day since starting Keppra.
But I have not felt a difference with it.
So I will jump to twice a day and see how that helps.
 
I had been off of medications for a couple of years and was trying to keep my seizure activity low by lifestyle modification. After another t/c a year ago they put me on keppra. Over the past year they've tried various dosages of it and even tried adding vimpat(a nightmare for me). Every time my meds are changed I have more seizure activity and migraines. They recently put me on keppra 750mg in the a.m. and 1000mg in the p.m. as a transition to a lower dosage but I am pleased with this dose and hope to stay with it.

As far as the keppra moody and irritable-ness...my husband accepts it as part of daily life now. While I am not known for my patience I have always been a very passive person until the keppra. I am more easily irritated and snappish.

When it happens I go lay down or just find a peaceful place until it passes. Easily said.
 
I Know what it's like to have to change meds. I've done it numerous times & it's never been fun yet.

I'm also very familiar with the irritability of Keppra- Kepprage as it's known.

A lot of people have found that vitamine B6 has helped it a lot.

:agree: Ive been on Keppra since the age of 17 or 18 and Im now 30. I didnt know about the B6 complex vitamin til November of 2010 when my dr told me to try taking that with the Keppra. He also switched me over to Keppra XR since I was having so many headaches. The Keppra XR has been a great medication for me. It took away all my headaches and so far Ive been seizure free.
 
I have been on Keppra for a few years now and found out that B6 does help. The amount that I take is just a regular multivitamin plus a Vitamin B complex, which gives me an extra 50 mg of B6, about 2500% of your daily value. With most of the B vitamins, since they are water soluble it is hard to OD on it as it passes right through your system.

The way I have to take it is the B complex in the morning and the multivitamin at night as my ADHD med requires me to avoid vitamin c at the same time. This also helps to keep the B6 levels constant plus taking it as a complex give you folic acid and vitamin B12. I found it works better than just extra B6.
 
Thanks! I have been looking at bcomplex instead of just b6, mainly because i knew it would give me my folic acid too.

And I have always had tons of headaches, i think mainly for normal reasons; hunger, working at a computer, I grind my teeth as well.
I have always been on Keppra XR since the beginning, I was on Depakote XR before. My doctor tells me that the Keppra is not a cause of my headaches because it is actually used as a treatment for migraines, so I guess the XR should help with your headaches.
 
Um, your doctor may be wrong about the headache thing:

SIDE EFFECTS: Common side effects associated with levetiracetam (Keppra) include headache, sleepiness, weakness, dizziness, and infection. Difficulty walking or moving, hostility, irritability, mood swings, anxiety, hallucinations, and delusions also have been associated with levetiracetam. A small number of patients may experience a decrease in red or white blood cell counts. Like other antiseizure medications, levetiracetam should not be discontinued suddenly because of the risk of increased seizure activity.
 
Thanks! I have been looking at bcomplex instead of just b6, mainly because i knew it would give me my folic acid too.

And I have always had tons of headaches, i think mainly for normal reasons; hunger, working at a computer, I grind my teeth as well.
I have always been on Keppra XR since the beginning, I was on Depakote XR before. My doctor tells me that the Keppra is not a cause of my headaches because it is actually used as a treatment for migraines, so I guess the XR should help with your headaches.

My dr put it to me this way... Since I started taking Keppra around the age of 18, I was put on the 500mg tablets of Keppra, taking 3000mgs daily. I had really bad headaches all the time. It got to the point where my headaches were more like migraines. My previous dr told me to take Excedrin pills, and to keep up with the Keppra. Thats when he told me to increase my keppra from 3000mgs to 4000mgs, this was in September 2010. I went for about 5 weeks like that I felt horriable! I had no energy, no desire to even get out of bed, and after two weeks of being on 4000mgs a day, I started having break through seizures. I tried to contact my dr two times, and both times didnt recieve a call back. So I took matters into my own hands and went back down to the 3000mgs. I was seen within the next few days after that. But this time, by the drs partner! Who I have been seeing since then. It was his partner that said the Keppra doesnt have the same affect as the Keppra XR (as far as it lasting in your body as long as it should) He explained what he thought was going on. When youre on Keppra, the medication is released into your body once you take it, after hours of it being in your body, the levels start to go down til you take your next dose. For me, those levels were going down too soon, causing the headaches to come. With the Keppra XR, it stays in your body longer, not being able to cause the headaches to come about. Its an extended release medication (XR) so it slowly released into your body, rather than faster like Keppra. So, once he explained it to me that way, it all made sense. Which explains why I dont have the headaches Ive had when I was on the Keppra.
 
That makes a lot of sense regarding the headaches...I love XR and wouldn't want to go back to regular Keppra.
 
My daughters seizures increased when on meds. It wasn't until we made nutritional changes, and added supplements that she began to see seizure control. She has now been 9 months seizure free, and 3 yrs med free.

It wasn't a quick fix, but it has definitely been worth taking this route.
 
And here I thought I was the only one lol.....

Hi I'm new too and trying to figure everything out. Thank you to everyone for talking about Keppra. I have been put on it since my first seizure about 8 months ago. I have been on Topamax for years for my migraines and never had a seizure. They (the docs) can't tell me what kind of migraine or what kind of seizures I have just that I do. And yes all the grand side effects of Keppra are now my friend....yeah. I am going to try to change meds too yet again and I feel your pain. It's nice to know there are others out there that are going through the same thing.
 
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