1. < Epilepsy & Seizures

Focal aware seizures or auras

Posted by kelspal @kelspal, Apr 13 9:43pm

My daughter has her neurologist thinks are awareness focal seizures. They are very short (5-10 seconds) and happen during stressful situations, when experiencing anxiety, and during and around her menstruation. Her doctor put her in keppra 250 twice a day and it didn't change much. Then it was increased to 500, then 750 and then 1000 mg twice a day. She still has an occasional aura feeling but not sure if its epilepsy. She is having side effects from meds; tired, crabby, etc and does not want to take drugs she may not need. She was going to ask to slowly wean to 750 twice a day and see if there are any changes. Has anyone had a similar situation?

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methel | @methel | Apr 16 11:02am
In reply to @adoptivemother "I agree that the efficacy of the medications depends on more than just the seizure types..." + (show)
@adoptivemother

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.

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Yes, I agree that living with epilepsy is definitely a risk factor for anger and depression. It’s difficult to live with the thought that when you take a shower, you could drown, when you go up or down stairs, you could have a fatal fall, etc and etc. Not being able to drive when all their friends have the new-found freedom is particularly hard for young adults.

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1 reply
adoptivemother | @adoptivemother | Apr 16 11:39am
In reply to @methel "Yes, I agree that living with epilepsy is definitely a risk factor for anger and depression...." + (show)
@methel

Yes, I agree that living with epilepsy is definitely a risk factor for anger and depression. It’s difficult to live with the thought that when you take a shower, you could drown, when you go up or down stairs, you could have a fatal fall, etc and etc. Not being able to drive when all their friends have the new-found freedom is particularly hard for young adults.

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I wish my daughter would engage hear or speak to someone with epilepsy so she would see she isn't the only one suffering this way and feel understood.

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methel | @methel | Apr 16 12:54pm

She is not alone and you as a hurting parent are not alone. But epilepsy is usually an invisible disability. Therefore it’s not thought to be as common as it is.

I developed epilepsy later in life caused by a meningioma, but a doctor I consulted about something unrelated, but who saw Keppra on my medicine list, shared his daughter’s struggles with not being able to drive, like her newly empowered friends.

I believe the epilepsy foundation has an online chat, but don’t know how active it is anymore.

Best wishes to you and your daughter. There are many reasons to be optimistic as her treatments are fine-tuned.

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1 reply
Chris Gautier | @santosha | Apr 17 7:24am
In reply to @kelspal "Hi, thank you for your response. My daughter was having auras with deja vu feelings. Sometimes..." + (show)
@kelspal

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.

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My pleasure @kelspal !!!
The experience with auras your daughter once had is similar to mine when I was younger and just had auras. But with time, seizures can change, as I have experienced myself and have also read. Medications can also change a seizure pattern.
AEDs are a class of medication with a high incidence of side effects. And usually, the higher the dosage, the stronger the side effects. I can well understand the pain your daughter is going through.
My current doctor says the challenge is finding a medication and dosage that brings us more benefits than harms. If the current medication and its dosage are causing stress and anxiety to your daughter, I understand that the current treatment might be exacerbating those triggers to seizures. On one side, it helps to keep seizures away from your daughter, but on the other side, it creates conditions that increase the chances of a seizure. I called that a looping process; let me try to explain it with a personal experience. In the 2019-2020 period, I was on an AED that has lowered my immune system, resulting in fevers and several infections. On one side, the medication was protecting me from seizures, but on the other side, it was also putting me in situations that would trigger my seizures (lowering my seizure threshold, as we say). As the current dosage did not control all my seizures, my doctor wanted to increase the dosage, which I did not agree with, as I was already having a very hard time with the side effects. What I did at that time: I checked for a second opinion and then changed doctors. I ask myself if it would not be interesting for you and your daughter to check for a second opinion? And if you do it, I believe it would be best to do it with an epileptologist rather than a neurologist.
Yoga, meditation, exercising, and certain diets are great alternatives to add more quality to our lives and do also help to increase our seizure threshold. I myself practice hatha yoga, yoga nidra, take CBD oil, exercise (Pilates and Tennis, which is known to be a sport that is excellent for brain health) and take care with my diet (I follow more the Mediterranean diet).
Wishing you and your daughter better days with a treatment that is effective and has tolerable side effects.
All the best!
Chris (@santosha)

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Chris Gautier | @santosha | Apr 17 7:34am
In reply to @kelspal "She has had a couple EEG's and an MRI and nothing showed up. We are seeing..." + (show)
@kelspal

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.

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Hi @kelspal
I have lived with undiagnosed epilepsy for decades. My EEGs and MRIs also showed nothing.
There is a discussion called "First Seizure." here in our group I recommend you read: https://connect.mayoclinic.org/discussion/first-seizure/?pg=2
Have a good day!
Chris (@santosha)

REPLY
Chris Gautier | @santosha | Apr 17 3:45pm
In reply to @adoptivemother "I agree that the efficacy of the medications depends on more than just the seizure types..." + (show)
@adoptivemother

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.

Jump to this post

Hi @adoptivemother
First, I am very happy to know your daughter is doing better since she changed medication. Thank God!!! Being treated by specialists in epilepsy can make a great difference in epilepsy treatment and life quality.
Definitely, it would be great if we had an exam that could make the process of finding the right drugs and dosages easier. Who knows in the near future? Let's pray for that! Neurology is the medical area that has been mostly studied in recent years, but there is still a lot to be discovered and answered.
For sure, as you well said, living with epilepsy is a risk factor for depression, anger, anxiety and suicidal thoughts. But what causes that, the epilepsy in itself, the treatment, or both things together? I for example had depression and suicidal thoughts in my teenage years when my seizures started, well before having the diagnosis of epilepsy and starting treatment for it. I have overcome this depression with psychotherapy and spiritual support. When I started my epilepsy treatment with AEDs in 2019 I had depression again. Were the AEDs I tried the only reason for my depression? Hard to say, because receiving the diagnosis of epilepsy was something already hard to process, then the many other side-effects of the medication I had to deal with, quitting my job and professional life, etc. But I believe that some AEDs can for sure leverage this symptom that we with epilepsy already have some predisposition. I say that, because I got much better when just being treated with pure CBD (Epidiolex), though it did not control all my seizures.
Wishing you and your family a blessed Eastern!
Chris (@santosha)

REPLY
1 reply
Chris Gautier | @santosha | Apr 17 4:08pm
In reply to @methel "She is not alone and you as a hurting parent are not alone. But epilepsy is..." + (show)
@methel

She is not alone and you as a hurting parent are not alone. But epilepsy is usually an invisible disability. Therefore it’s not thought to be as common as it is.

I developed epilepsy later in life caused by a meningioma, but a doctor I consulted about something unrelated, but who saw Keppra on my medicine list, shared his daughter’s struggles with not being able to drive, like her newly empowered friends.

I believe the epilepsy foundation has an online chat, but don’t know how active it is anymore.

Best wishes to you and your daughter. There are many reasons to be optimistic as her treatments are fine-tuned.

Jump to this post

@methel @adoptivemother @kelspal
The online chat of the Epilepsy Foundation has been deactivated. For me, the Mayo epilepsy group has been the best one to exchange online experiences through messages and posts with others who are also dealing with epilepsy. I have learned so much with others here. My special thanks to @jakedduck1.
@adoptivemother, you said you wished so much for your daughter to join an epilepsy group to see that she is not the only one facing certain challenges. It took me more than 2 years after my epilepsy diagnosis to take this step and 1 more year to really expose myself in those groups. After my diagnosis treatment, I was not open to discussing my condition with others, except with those who are very close to me. Can you believe that I was somehow happy when Covid started? I know this is horrible, but when Covid started, I did no longer need to give further excuses for not showing up and felt relieved. It takes some time to accept this condition and the timing for that can vary from person to person. Last, my neuropsychologist has helped me a lot in the process of my epilepsy acceptance.
All my best to all in this group!
Chris (@santosha)

REPLY
Chris Gautier | @santosha | Apr 17 6:54pm
In reply to @santosha "Hi @adoptivemother First, I am very happy to know your daughter is doing better since she..." + (show)
@santosha

Hi @adoptivemother
First, I am very happy to know your daughter is doing better since she changed medication. Thank God!!! Being treated by specialists in epilepsy can make a great difference in epilepsy treatment and life quality.
Definitely, it would be great if we had an exam that could make the process of finding the right drugs and dosages easier. Who knows in the near future? Let's pray for that! Neurology is the medical area that has been mostly studied in recent years, but there is still a lot to be discovered and answered.
For sure, as you well said, living with epilepsy is a risk factor for depression, anger, anxiety and suicidal thoughts. But what causes that, the epilepsy in itself, the treatment, or both things together? I for example had depression and suicidal thoughts in my teenage years when my seizures started, well before having the diagnosis of epilepsy and starting treatment for it. I have overcome this depression with psychotherapy and spiritual support. When I started my epilepsy treatment with AEDs in 2019 I had depression again. Were the AEDs I tried the only reason for my depression? Hard to say, because receiving the diagnosis of epilepsy was something already hard to process, then the many other side-effects of the medication I had to deal with, quitting my job and professional life, etc. But I believe that some AEDs can for sure leverage this symptom that we with epilepsy already have some predisposition. I say that, because I got much better when just being treated with pure CBD (Epidiolex), though it did not control all my seizures.
Wishing you and your family a blessed Eastern!
Chris (@santosha)

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Hi @adoptivemother
When I commented on your post about an exam that could make the process of finding the right drugs and dosages easier, I had totally forgotten that I did a pharmacogenetic for AEDs in the past (2020) after having tried 5 different AEDs and not having success.
I commented on this in Lisa's post: https://connect.mayoclinic.org/discussion/lamictal-xr-issues/
Perhaps this exam could be helpful to your daughter? Discuss it with your doctor.
Chris (@santosha)

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Chris Gautier | @santosha | Apr 17 8:21pm

Hi again! I just read this article, "Epilepsy vs. Psychogenic Nonepileptic Attacks" and thought of all of you participating in this post and discussion.
Here is the link:
https://www.myepilepsyteam.com/resources/epilepsy-and-stress-related-seizures/
Chris (@santosha)

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