Grand Mal Seizures: Anyone found out what's causing your seizures?

@nin
I have never seen a Neurologist at or been in the Mayo clinic Comprehensive Epilepsy Center but was in one at Stanford University and one in San Francisco.
I believe your best chance for diagnosing the cause of your sons epilepsy would be at a Comprehensive Epilepsy Center where he would be under the care of an epileptologist. Normally Epilepsy Centers see patients with intractable Epilepsy. However, since his Epilepsy isn't active I wonder if they would accept him as a patient.
Benefits of an Epilepsy Center is they work as a team with various specialists and will decrease or stop his medication so he'll have a seizure which will be captured with video EEG to hopefully locate where the seizures originate. They have the latest imaging technology, surgical techniques and Neurostimulation devices.
Since your son's seizures are no longer active why is it important to find the cause?

Mayo Clinic contact information:

List of Comprehensive Epilepsy
Centers throughout the U.S.

Take care,
Jake

@nin Hi
I agree with @jakedduck1 opinion. I also understand that finding the cause of your son's epilepsy will not change his treatment and add value. I know what has caused my epilepsy, but this has not changed my treatment and given me new possibilities.
Very happy to know that your son is seizure-free!!!!
All the best!
Santosha

@jakedduck1 - Thank you for the info, it's greatly appreciated. My son is not completely seizure free, it is controlled with Kepra. He has been known to have a seizure on occasion if he forgets to take a dose and if he doesn't get enough rest. He stays busy taking care of his 2 year old and his job. I am afraid that he is not getting enough rest and it is easy for him to forget his dose especially while at work as he stays busy. When I read this in the Mayo Clinic webpage, I want this for him. "The goals of treatment include: No seizures, no side effects and no lifestyle limitations", my thought was I definitely want him to have all the above. He drives to work and I worry about this every day. He lives in AZ and I'm in TX, for these reasons, I want them to find the cause, if they can make him seizure free.

@santosha - I wish I could say he is seizure free. It is controlled with Kepra for the most part, but he is not completely seizure free. I am sorry to hear they couldn't help you more after finding your cause. Is it false advertisement then? This is also posted on their webpage... Receive an accurate diagnosis
Get back to your life faster with the right treatment. Advancements in diagnostic imaging technology can help pinpoint the exact cause of your seizures. Why do they want to pinpoint the exact cause if they can't help you stop them? I'm sorry, I think I'm feeling a bit frustrated with this. I really got my hopes up high and I think I did the same for my son. I am now feeling discouraged. I wish you all the best too @santosha

Hi @nin
I am sorry for my misunderstanding. I believe Jake also understood that your son is seizure-free.
Receiving an accurate diagnosis of what kind of epilepsy and seizures one has is for sure important to get adequate treatment and to improve life quality. But knowing what has caused epilepsy, did not add value in my case.
Just sharing, I have temporal lobe epilepsy on the left side of the brain with sclerosis on my hippocampus. My seizures are mostly focal. This diagnosis has been very important for getting adequate treatment and the understanding of my refractory epilepsy (medically resistant epilepsy). But knowing that the accident I had when I was 5 years old did most probably cause epilepsy, did not change my treatment and/or add value.
Please do not get frustrated!!! Do you know exactly what type of epilepsy your son has? Does he know what kind of seizures he has? This kind of diagnosis is for sure important.
I also did sometimes forget to take my medications at first, as there were so many to take. I have then put an alarm on my mobile and since then I rarely forget to take my medications. Have your son tried using an alarm for taking his medication?
Stress, anxiety, and bad or little sleep are my triggers to my seizures. Based on that, I have made changes in my life, paying always attention to getting enough rest.
That we never lack faith! Wishing you and your son all the best. If I can be of further help, please let me know. It will be a pleasure.
Santosha

Hi @santosha, no need to apologize, it's how I worded it. What we do know is that he has Grand Mal Seizures. We have never been told what type of epilepsy he has. His neurologist did say it could be due to a head injury and I do recall one he had when he was about 5-6 years old. He started having seizures when he was about 12 years old. To answer your question, yes he does have an alarm on his watch from what he tells me. If you don't mind me asking, have you been evaluated and tested by the Neurologist Team at the Mayo Clinic? Is this how you found out what type of epilepsy you have and what caused it? Thank you for your time and sharing your information.

@nin
Keppra also comes in an extended-release version. This formulation will likely prevent any breakthrough seizures.
I had the same problem so I asked my Neurologist if I could take all my meds in the morning and he agreed it was a good idea.
My Neuro likes to only prescribe brand name drugs and whenever possible the extended-release version. Because the drug level is more stable with extended-release medications they often have fewer side effects and can be taken once a day. I hope your son discusses the extended-release option with his doctor.
I don’t know if your son takes brand or generic Keppra but studies have shown some epilepsy patients are susceptible to breakthrough seizures when they switch manufacturers which is a common practice pharmacies use to save money. The same holds when switching from brand to generic and vs verse.
Thank you for your insight @santosh
Take care,
Jake

Hi @nin
I am currently living in São Paulo, Brazil. Unfortunately, here in Brazil, there are no epilepsy centers like in the US, Brazil is behind the US in epilepsy treatments. I have already been to several doctors (psychiatrists and neurologists) since my diagnosis of epilepsy in 2019. By the start of this year, I have finally found a good epileptologist and felt very much the difference. At first, I have been diagnosed just with temporal lobe epilepsy. Sclerosis on my hippocampus I have discovered later, after reading that most people with temporal lobe epilepsy have an injury in the brain. The Epilepsy Foundation has been an excellent source of epilepsy education for me. I then asked my doctor at that time, a neurologist, to do an MRI with high definition, discovering I also had small hippocampal sclerosis. What would I have done differently after the diagnosis of my epilepsy if I could go back in time? To have been treated by an epileptologist right from the beginning, if I knew that existed. My seizures also started when I was 12 years old, but in a very mild way and with very occasional seizures. I have lived with my epilepsy for 36 years without knowing it (I am 51 years old now) and I had a normal life until I had a burnout by the end of 2017.
If you have other questions, feel free to ask.
Have a nice evening 🙂
Santosha

As @jakedduck1 has experienced it and mentioned to you and also in other posts, the extended-release version of an AED (anti-epileptic drug) I have tried was the one that has best controlled my seizures. Unfortunately, I could not tolerate the side-effects of this medication. I am a very sensitive person to medication since my childhood.

@jakedduck1 - Thank you for that information. I will certainly let him know about the extended release, this could be very helpful and beneficial to him. He is on the name brand and has been for quite sometime. The generic wasn't helping as much. I do appreciate your feedback!