Juvenile myoclonic epilepsy and Keppra

@sg325
Regarding Kepra, I strongly recommend that your daughter considers taking Vitamin B6. Many people report significant relief from Keppra rage with B6, so it’s definitely worth trying.

Life inherently involves some risks. In my view, experiencing a seizure is a minor trade-off for the benefits of improved seizure control and a better side effect profile. While her doctor may not be certain about the likelihood of seizures during a medication change, it’s important to acknowledge that the risk does increase. However, the method in which the doctor manages the switch plays a crucial role in determining the degree of that risk.

Take care,
Jake

Thank you for your reply, she is taking 100mg of B6 with each dose. I have not noticed any benefit to her moods

@sg325
Welcome to our community!
It looks like your daughter might be having Keppra rage, a side-effect of this medication.
Keppra rage refers to sudden, intense episodes of irritability, aggression, and behavioral changes that can occur as a side effect of levetiracetam (Keppra),
I am adding here the link to a discussion on Keppra in our group: https://connect.mayoclinic.org/discussion/seizure-1/
Have you reported this side-effect to your daughter's doctor?
All my best!
Chris (@santosha)

Hi,
If you search up my responses, I have commented a lot on our experience with Keppra.

My daughter 's life was completely derailed by a sudden onset of epilepsy during college so it was difficult to know if her mood and suicidality were worsened by Keppra or simply situational. After two years of dealing with that, she had a major grand mal and her Keppra dose was quadrupled. There was absolutely no doubt at that point that Keppra was making her worse. Mayo responded immediately by admitting her for a med change with significant psychiatric care. This is the only way I would do a med change from now on.

In the Epilepsy Monitoring Unit, they had her hooked up to a continuous EEG with video and audio recording. She had a 1 to 1 staffing ratio so someone was in her room 24 hours a day (although this might have been due to the suicidality and not a typical practice in the EMU). They handled the med change with the absolute most efficiency and safety, plus they got lots of data. We ended up on Trileptal (she was always on that), Lacosamide, and Briviact. Briviact is what actually stopped a grand mal she had in the EMU so they gave her an IV with it to get her blood levels up immediately instead of it taking a long time.

End of story, it is very possible Keppra is causing mood issues and going through a med change in the EMU is fast, safe, and informative.

Heather

Tagging @tlb101175 @aproudrebel @erivas110818 @stauggroomer35 @dlydailyhope @cmmichaela @covidstinks2023 @ginopoore @arunhari @happyccl8 @september2018. From their experiences or general knowledge about medical conditions, these members may have some input and provide some support for you about your daughter's juvenile myoclonic epilepsy and the extreme moods she's experienced since taking levetiracetam (Keppra).

@sg325
Have you tried combination medication with Keppra? I read that several medications may be needed to treat all seizure types/symptoms.

Is your daughter able to minimize the triggers of her seizures? It is so important that she takes medication and minimizes triggers so she doesn’t have any accidents/injuries during/after a seizure. Bathing/swimming and anything where position can make it hard for your daughter to breathe during/after a seizure, supervision is so important to keep her safe.
https://www.epilepsy.com/what-is-epilepsy/syndromes/juvenile-myoclonic-epilepsy

She has only had two convulsive seizures and many morning myoclonic symptoms. I’m learning a lot as I go, but currently she just takes the keppra and vitamin b, two times a day. We are very mindful of her activities and triggers, which primarily seems to be tiredness.
I know it’s important to stop the seizures but her moods are so severe it ends up disrupting the whole household

@sg325
I can relate with moods affecting the entire family . My 15 year old son has ADHD, anxiety, OCD, etc. and his moods are intense at times and very stressful to me. He takes medication for ADHD and one of them helps to manage the intensities of his moods (guanfacine).

I’m sure hormone changes may have a role to play for your daughter and my son. I have a counselor for my son. Do you have one for your daughter? Have you considered working with a psychiatrist for antidepressants/antipsychotic medications that work for teens with epilepsy?

You may also want to check with a nutritionist/dietitian to see if any changes would be helpful that can reduce symptoms/triggers (foods/supplements, etc.). Do you know if your daughter is allergic to anything that could be a trigger for her? If so, you may want to consider testing.
https://www.epilepsy.com/complications-risks/moods-behavior

@adoptivemother @lisalucier
Hi, I am taking sodium valproate 200_ 0_300mg
Plus revotril(clonezepam) o.5mg 1-0-1

I am intolerant to levetrocitam.

I had my first seizure at 15 years of age and now I am 44. Currently managing with yoga / deep breathing / mindfulness. As soon as I get a small fits I breath slowly and concentrate on happyy thoughts .. the intensity and frequency of fits decreases and I go into deep sleep. I don't know how it's working..

My sister goes thru the mood swings. She is 60 now but unfortunately they do not know what causes her. She’s on medication which helps sometimes. Epilepsy is so hard to control when u don’t know the triggers. My sister used to have a bird that would tell her when one was about to start. She immediately would go lay down as to not fall. It’s also one of the reason now that she doesn’t have much furniture in her home. Do u guys have a pet? Sometimes a pet will help with the tiredness, irritability, etc. Also some like my sisters bird could give a heads up when one is about to start. I’m sorry you have to go thru this. I pray that you and your family find something that helps. 🙏❤️