Focal aware seizures or auras

Hi @kelspal , Good Morning
I also have focal seizures, auras (or simple partial seizures) and complex partial seizures (when your awareness is impacted).
I started to have auras while I was a teenager. They have then evolved to complex partial seizures when one's awareness is impacted.
What does she experience while she has auras? Deja vu episodes, strange smell and taste in the mouth? Those are quite typical during an aura. In case you are interested, I am sending here a link with more details on auras: https://www.epilepsy.com/what-is-epilepsy/seizure-types/focal-onset-aware-seizures.
Stress, anxiety, and menstruation are common triggers to seizures.
Has the doctor told you what kind of epilepsy your daughter has? It would be interesting to know. According to my knowledge, not all kinds of epilepsy have auras. I have temporal lobe epilepsy. My seizures start with auras and can evolve to complex partial seizures or not. I am also on Keppra since last December. I also feel very tired and face other side-effects. But I may not be a reference, as I am very sensitive to anti-convulsant medications.
You also mentioned that your daughter has aura feelings. It seems those are prodromes. Prodrome is a feeling that an aura is on its way. Some people feel it, others do not. I have had prodromes in certain circumstances, before having an aura.
I hope this information helps!
Chris (@santosha)
PS: The Epilepsy Foundation (https://www.epilepsy.com/) has great material on understanding epilepsy, in case you are interested.

Hello

I am sorry your daughter is going through this, as is mine. My understanding is that Keppra is typically prescribed for generalized seizures (grand mals) and 1000mg twice a day is a very high dose. Trileptal is an example of a common first line med for partial seizures. There are many others available, however, which do not carry the same reputation for side effects as Keprra. We just took my daughter off of Keppra due to mood issues/suicidality/rage. It is always hard to pin down the cause for such feelings and I often feel like we are playing a guessing game but so far I do believe it was beneficial to remove Keppra.

Something to consider is PNES. I hate when people question if my daughter is "actually" having a seizure yet there is increasing evidence that anxiety and stress particularly when paired with PTSD can cause physiological symptoms that mimic epileptic seizures yet there is no evidence on an EEG. If a high dose of anti-seizure meds isn't working, I would be curious about this.

Has she had an EEG? Are you being seen at Mayo or elsewhere? A Neuro-psychologist might be helpful regardless.

I’m on extended release Keppra. 1500 mg 2x a day and definitely am more tired, exhausted, sleepy than previously. I seem to be sensitive to the concentration of medicine changes. My seizures would come just when it was time for the next dose. And as my dose slowly was increased, the seizures became less noticeable. So it was definitely an effect of the amount of Keppra I was taking.

Hi @kelspal
Just got this article on auras (focal aware seizures or simple partial seizures) and thought of you: https://www.myepilepsyteam.com/resources/auras-and-epilepsy/?utm_source=iterable&utm_medium=email&utm_campaign=epilepsy-welcome-content
Chris (@santosha)

Hi All,
I add here a Mayo Clinic's link with information on Keppra. According to this, Keppra can also be used for those with focal seizures.
https://www.mayoclinic.org/drugs-supplements/levetiracetam-oral-route/description/drg-20068010
Chris (@santosha)

She has had a couple EEG's and an MRI and nothing showed up. We are seeing a neurologist at Froedtert Hospital in Milwaukee. We are in the process of trying to figure out if something else is going on. Thank you for your reply! I feel like her Keppra dose is high for the symptoms she was having. We are going to discuss with Doctor but sometimes they are so stuck on protocols.

Hi, thank you for your response. My daughter was having auras with deja vu feelings. Sometimes the deju vu feeling was not pleasant and/or was associated with a memory. Sometimes a metallic taste in mouth or strange feeling in stomach. In the past, she would sometimes forget where she was or what she was doing for about 10 seconds but was still able to talk and let it pass. Now, she only has small auras (not even positive they are auras) but without taste and she doesn't forget where she is. We don't know if the change is from her change in lifestyle recently. She has been working out, cutting out sugar, getting more sleep, meditating and taking CBD oil. Her Doctor kept increasing her dose because he didn't want her to have any type of aura but she is still having the same feeling. Now, we are thinking she was not having auras and he was increasing her dose when he didn't need to. She is experiencing more side effects and wants to slowly wean back slowly to a lower dose. My daughter has bad anxiety and a lot of stress in her life right now and sometimes has panic attacks that are similar to signs of an aura. I'm going to look up prodrome, thank you for that information.

Hi @adoptivemother
Unfortunately, Keppra rage is a side-effect that many report while trying this medication, bringing much suffering to the patient and the family. I am sorry your daughter and you went through this with Keppra. How is your daughter doing now?
From my experience, I more and more observe that treatment with those medications is a very individual one, depending not just on the epilepsy type but also on other individual factors. Finding the right drug and dosage can be a process that requires much patience and persistence, not only from the patient and his/her family, but also from the doctor responsible for the epilepsy treatment. I well understand when you mentioned the feeling of playing a guessing game. I also had the same feeling many times, especially while being treated by neurologists who just followed a certain protocol and did not take into account certain individual aspects.
When my current doctor suggested taking Keppra, I got so scared because of all the stories of rage side-effect of this drug I have heard so often. But I see today it was the best alternative in a certain circumstance I had faced last December. Thank God, no Keppra rage and seizures so far in those 4 months, though I confess I am still struggling with other side-effects. My doctor, with all his patience and persistence, has been doing a fine-tuning process and reducing my dosage in a safe manner, little by little. I pray it works and ask God to continue with persistence!!
All my best to you and your daughter.
Chris (@santosha)

My daughter was treated at Froedtert in Milwaukee for the last three years, until we went to Mayo. Her issue is unique-she has an encephalocele in her brain that is causing the seizures and Froedtert did find that but they insisted the seizures weren't being caused by it and Mayo has proven otherwise. That was my main concern all along-that they were stuck on protocols and not looking at my daughter's situation individually. I personally believe that practice has sprung from insurance companies only paying when protocol is followed and people suing when things go wrong. This is an article on PNES which is the type of seizure that is non-epileptic. That said, many people with epilepsy have several EEGs before anything is seen clinically. https://www.epilepsy.com/diagnosis/imitators-epilepsy/psychogenic-nonepileptic-seizures

I agree that the efficacy of the medications depends on more than just the seizure types but multiple factors that are dependent on the individual person. I wish there was a blood test that could just tell us which meds and which doses would work best! 🙂

My daughter appears to be on the upswing with her mood. It is hard to tell because sometimes a seemingly small setback can cause her to drown in sorrow but I do feel like she is increasingly improving since the med change. She also hasn't had any seizures to my knowledge since the Briviact was added!! I am so grateful the doctors at Mayo took our concerns seriously and went ahead and admitted her for the med change instead of having us do it at home. I think it could have taken months at home and it took a week at the hospital.

I am so glad Keppra is working for you! It really did control her grand mals well and we will never truly know if it was a factor in her depression, anger, or suicidality. I often wonder if seizure meds have that reputation simply because living with epilepsy is a risk factor for those issues to begin with.