Keppra to change or not?

Hello all!

I have been on keppra for over a yr now and I can't decide if I need to change it. My major side effect and the main cause for changing from keppra, is depression and horrible mood swings. My husband and son get the brunt of the mood swings when they hit. They vary from just getting aggravated over them not putting something away to me balling my eyes out over something that doesn't really bother me normally. I never know when its going to happen to me. Some days which hasn't happened recently include me not wanting to get out of bed. I feel worthless and bad that I react the way I do to people. And I wonder is it the medicine, is it the avm its self (its in my left temporal lobe), or is this the new me. I don't even want to be around myself some days, how can I expect my family to deal with this if I even can't. If any one has been on keppra and can shed any light on how to cope with it or if its best to get off of keppra please share with me. Any one who has anything to share about different seizure medicines that would be awesome. I have been on dilitan and tegertol please help me!!!! I also take klonopin to help fill in for what the generic form of keppra is leaving out. So maybe its that medicine that is making me react this way. I just don't know and am so confused right now. All the advice I can get would be great :) Thanks for reading this discussion.

XO,

Andrea

Andrea,…

I have been on “levetiracetam” (keppra substitute) 500mg twice daily for over a year now.

The comments here bring up a good question:
What are the differences between “keppra”, “levetiracetam”, and a generic “keppra” ?

Looking at myself, I see no “side-effects”, that I am aware of, however, that is me looking at me, and I cannot say for sure about others perceptions of myself and my “moods”.

I will do some research, get some answers and will post same here.

Hi Andrea,

I have been on Keppra for 5 years now. At first I noticed some moods swings, but after the first year it went away even though my Dr. increased the dosage. Now I am on 2500mg of Keppra and 300mg of Zonegran. I find them both to be very tolerable. BUT STAY AWAY FROM GENERICS. There have been medical studies demeaning the efficacy of generic anti-epileptic drugs. I would demand the name-brand from you doctor and see how that goes. Prior to being on those two meds, I was on Dilantin, which I thought was horrible.

Feel free to contact me with any questions. Send me a PM, since I am not on this site much.

Good luck.

Hi Drew,
I was originally on the name brand keppra, but when they came out with the generic form last year I had to switch because of my insurance. I called my insurance and told them my dr wanted me on the name brand, and they told me I would have to pay for it then out of pocket. Since there is a generic form they won’t cover the name brand. I priced what it would cost me and it was about 300 a month. That is just way out of the range I can afford. When I was on the name brand I never had the side effects. At least if I did they were not as noticeable to everyone. Thank you for you comment, it was great advice :slight_smile:

Drew said:

Hi Andrea,

I have been on Keppra for 5 years now. At first I noticed some moods swings, but after the first year it went away even though my Dr. increased the dosage. Now I am on 2500mg of Keppra and 300mg of Zonegran. I find them both to be very tolerable. BUT STAY AWAY FROM GENERICS. There have been medical studies demeaning the efficacy of generic anti-epileptic drugs. I would demand the name-brand from you doctor and see how that goes. Prior to being on those two meds, I was on Dilantin, which I thought was horrible.

Feel free to contact me with any questions. Send me a PM, since I am not on this site much.

Good luck.

Hi Jan,
Thanks for your comment and I will look into talking with a epileptologist. I seen one neuro for the avm and another one for the seizures. At this point they can’t tell me what is exactly causing my seizures. I only have small ones so its all a waiting game to see what happens after the avm is gone. I pray I can come off of the meds but its in gods hands!! Any other advise would be great thank you!!!
Jan Verstraete said:

Hi Andrea,

What are you experiencing are some of the most common side-effects of Keppra. I’m also on Keppra (after 20 years taking Dilantin). I also experienced mood swings (ask my wife!) and depression. Recently, my epileptologist reduced the dosage of Keppra (from 1500 mg to 750 mg daily) and added Vimpat and the mood swings disappeared or became less pronounced (except when I’m tired). The depression is still there, but it is much less. You have, however, to keep in mind that people with epilepsy are more prone to depression and that the medication perhaps just reinforces it. I suggest that you talk with an epileptologist (not with a neurologist) about it. I find it interesting that Klonopin was added to help fill in what the generic form of Keppra is leaving out. That means that the brand name and its generic substitution are not same (as they claim) and that the generic should not be allowed on the market.

You can always talk with someone at the Epilepsy Foundation about it. If you want to find the branch closest to you, you have to go to their web site www.epilepsyfoundation.org/. Another informational web site is the following: www.epilepsy.com.

I hope that everything will be better soon.

Jan

Hi Andrea,

Seeing a new doctor could be a big help, especially if you look for an epileptologist. Doctors differ in the credence they give to our reports of side effects…some believe that side effects as serious as yours are just the price we have to pay for seizure control, others will try to find ways around them (maybe therapy or alternative treatments), and others will try to change your meds. A fresh perspective from someone who listens to you in a different way could be a help.

JH

Who knows what causes these things, any time one has a brain issue and must take meds it can be difficult to know what the exact cause of mood swings is. I thought mine were menopause, but ten years ago my partner left me saying he could not take it any more.
After years of struggle, I finally learned that heavy exercise, and finding an outlet that is really important to me refocuses me so I no longer suffer. For me the answer was horses. I love animals so much and feel needed by them so I will do whatever is necessary and have little time to spend thinking about myself.
The exercise was the answer to lifelong chronic pain, and the horse was the answer to the psychic pain.

Hi Andrea,

I apologize for not replying sooner. I hope you have resolved this situation. If you are still on the generic form of Keppra and experiencing problems I would try another medication if the brand name is cost prohibitive. Also, many insurance companies offer discounts for 90-day supplies if you order through them. Look into that if you have not.

Epileptic/anti-seizure drugs are very expensive, so insurance companies place them in their upper tiers, forcing customers to foot more of the bill. Even if your doctor writes “do not substitute” and/or “brand name medically necessary” the insurance company will not allow you to pay a lower tier drug price. What that note from your doctor does is prohibit the pharmacy or insurance company from switching the drug to generic without consulting you, thus saving them money. They don’t care about us, the patient.

I would look into bulk orders for a cheaper price or consider a different medication.

Here is a great article from Bloomberg for all to read:
http://www.bloomberg.com/apps/news?pid=newsarchive&sid=a9k3iDl4bTHo&refer=home

Good luck.

Hi Andrea,

Hi Christine,

I agree, animals and exercise are very therapeutic and help immensly with coping with any side effects.

good luck

flower

x

Christine Hanson said:

Who knows what causes these things, any time one has a brain issue and must take meds it can be difficult to know what the exact cause of mood swings is. I thought mine were menopause, but ten years ago my partner left me saying he could not take it any more.
After years of struggle, I finally learned that heavy exercise, and finding an outlet that is really important to me refocuses me so I no longer suffer. For me the answer was horses. I love animals so much and feel needed by them so I will do whatever is necessary and have little time to spend thinking about myself.
The exercise was the answer to lifelong chronic pain, and the horse was the answer to the psychic pain.

Andrea, I've been on the generic of Keppra (Levetiracetam) since I had my brain bleed from my AVM since 2007. I can only affort generics. I've been on anti-depression meds even before my brain bleed, so it's hard for me to say my Levetiracetam causes depression. However, I agree that you should contact a epileptologist to see if it's the Keppra that is causing your depression.

It also could be just that we have a brain injury and are not the same people we used to be. I blamed my increased depression after my brain injury, on not being able to go back to work, at my beloved job. It took me 2 years to get over not being able to work. We both had our AVM's in our left temporal lobe, which makes it difficult for us to reading, writing, etc. Our depression could be the loss of what we used to be able to love to do. Please take good care of yourself.

HI Jason I was on tegertol before and my dr took me off because he said it wasnt good for woman. I have been on 4 different ones i believe lol.

Jason Eppert said:

I've been on 4 different types and tegertol seems to have the least amount of side effects for me. Everyone is diferent though. If one of the other meds you took in the past workrd better then tell your doc. Good luck.

Our four year old daughter began keppra. She has said it makes her feel like “Beast” on Beauty and the Beast…very angry but kind and gentle. She is often very emotional. Her neurologist suggested a multi-vitamin high in B complex. He said that vitamin supplements work will with the keppra. Ask your doctor.