Living with epilepsy - Introduce yourself & meet others

@jennebabe
Welcome to the group. I'm so happy you're here. You will find that everyone here really cares and are willing to help you in any way they can. The people here are knowledgeable and dedicated to being a support for you. My son, Keegan, was diagnosed with MTS epilepsy in 2020. When he had his first seizure, I immediately began researching resources to help guide me in this new journey. I met @santosha, @jakedduck1, and many others who gave me such great guidance and support. I know you will find the same. So, welcome again and always feel free to reach out to others here. We're all in this together 🙂
Kerry

Hi @jennebabe
What a coincidence — I also have a birthday in November! And I can relate to your determination to keep living life as normally as possible — that spirit will serve you well on this journey. I've also been on Keppra since 2024, having been diagnosed with temporal lobe epilepsy in 2019 at the age of 48.
Here are a few threads in our group that might be interesting to follow and participate in as you get started:
How do you remember to take your medication?
https://connect.mayoclinic.org/discussion/how-do-you-guys-remember-to-take-your-medication/
Am I disabled? Now what. Can you relate?
https://connect.mayoclinic.org/discussion/am-i-disabled-now-what/
What kind of seizures have you been experiencing? Have you been given a specific epilepsy diagnosis?
As @jakedduck1 has often said in this group — "epilepsy is just a part of us, but it's not all of us."
Please feel free to ask questions and share your thoughts whenever you feel ready.
Welcome again!
Chris

@jennebabe
Welcome to Mayo Clinic Connect. Is your seizure disorder a result of illness or of unknown cause.
Acceptance was the most difficult part of my epilepsy journey. I was 14 when it struck It took me two years to come to terms with my diagnosis. It appears you have already accomplished that task. Sadly, many never do.
Did your MRI and EEG results show any abnormalities?
Adherence to medication is the leading cause of seizures. So don't be like me, I forgot to take my meds the other day and had a seizure or two. Do you know your epilepsy diagnosis or if your seizures are focal or generalized?
Also, you should invest in a medical alert bracelet/necklace of some kind. I like MedicAlert because of the electronic information they can store.
https://www.medicalert.org/medical-id
I've been a member for almost 60 years. They have come to my rescue multiple times.
Take care,
Jake

Good Morning to all! I just wanted to introduce myself and thank you for being here! Newly diagnosed and have started keppra.I'm going to be 65 in November, this is NOT the way I expected my retirement to go...but here I am and I'm determined to keep living my life as normal as possible. I'm looking forward to reading others experiences.

Hi Jake,
I do believe I had a nonconsulvive status epilepticus in 2018, when I was not yet correctly diagnosed. I was some hours talking about things that made no sense at all. The doctor who diagnosed me with epilepsy in 2019 said to me that this was caused by medication. At that time, I was diagnosed with depression and taking anti-depressive medication.
Yes, I had the experience of a secondarily generalized seizure in 2020 due to the great drop of my sodium level in my blood caused by Trilpetal.
Have a good evening!
Chris

@1775house
@santosha
Have either of you been told you're having nonconvulsive status epilepticus when you have these long episodes.
Could it be possible you are sleeping after the seizure.
Chris, have you ever had focal to bilateral tonic-clonic seizures, previously called secondarily generalized seizures?
Take care,
Jake

Hi @1775house
I do have exactly the same experience you described during my partial complex seizures.
"I am sitting by myself and I just realize a show that I was watching is over and I only saw a few minutes."
I started to shake a bit while I was medicated with AEDs (Lamictal, Tegretol, Trileptal, Vimpat and Gabaneurin). But those shaking during the seizures have disappeared with the CBD medication. Quite earlier, before being treated with AEDs did you have also shakings during your seizures?
I liked your saying "Every success begins with a failure and the only failure that starts another failure is not asking what's wrong". As I have heard from someone, we have to look not at our falls, but at our uprise or lifting after falling. Sorry, I can not remember the best word in English now.
If I can be of any help, please do not hesitate to contact me.
Take care,
Chris/Santosha

Hi, I have sometimes complex seizures where the doctors are the complexed ones 🙂 Well I'll be talking and then I'll tell them my arms are feeling strange they will start shaking a little bit and then I don't remember anything for hours. Sometimes I am staring for hours and someone (daughter, or husband) will find me they will either sit me down or lie me down and then how I respond decide what to do with me. Those type of episode I don't do well with. The small on and off ones I'm OK with usually I am sitting by myself and I just realize a show that I was watching is over and I only saw a few minutes. Everything is strange in its own way.

Hi Jake, actually go t back from my neurologist yesterday what the dx specifically is generalized convulsive epilepsy with intractable epilepsy CMS-HCC. Specifically where in the brain all that is you got me. Yes myoclonic is the word. There have been so many words thrown out over the last 30 years. The weakness I have is likely due to a stroke like episode I had somewhere around the same and perhaps even precipitated the epilepsy to being brought to the forefront even with these last two hospitalization with all the MRIs they've done my PCP/internist is putting me on a stroke preventative protocol because it shows multiple events. I wholly agree with you Jake you really can't worry too much I feel if you got at each incident in your life with the idea that you'll address it, you'll accept it' you'll fix it (if you need too) and you move on that moves to the my next statement every success begins with a failure and the only failure that starts another failure is not asking what's wrong OH! you've now made your first success in that situation 🙂 I will have this long staring spell and now my neurologist asked if I wanted an emergency med (Ativan) for the seizures that bring me to the ER. The on in Jan were seizures of and on over 5hrs and on for 1hr straight while I could sometimes respond to them. He thought if someone around me could treat me I could avoid the hospital and all the problems along with it. That is pretty good for a professor who teaches at the hospital I would go to, or maybe it is he is just tired of seeing me :). Well the meds I take are Lamictal and Zonesamide (sp) I've been taking them for probably 7years and they work really well they have been titrated up and down depending on the circumstances but I started out 30 years ago with Depakote and that did not work. Well I've rambled you take care - Leslie

Hi Jake (@jakedduck1)
Ask me how many times you want, no problem. I also do have memory issues.
During my seizures, I first get an aura and then a complex seizure. My awareness and speech are not impaired during the aura, which is so quick and lasts 3 seconds. But when the complex seizure is there, my husband says I just stare, stop speaking and stay quiet. I do not have any body movements (I had those when taking AEDs). When he is next to me, he takes me to sit down and holds my hand. He says I do correspond to that, even though I am not able to speak. When alone, I also try to sit down or go to bed if I can and stay quiet. Deja vu feeling is something always present. When younger I also had some smell and taste in my mouth (very typical for temporal lobe epilepsy) during a seizure. But this has disappeared when getting older. With my current treatment with medical cannabis (CBD) my seizures have become milder, with very light body contractions and fast recovery. Right after a seizure, I am very confused and can not speak. How long? It depends on the intensity of the seizure. But it does not last longer than 1 hour. Ah, my seizures last less than 1 minute nowadays.
BTW, this afternoon I have seen a webinar on brain stimulation methods to stimulate memory, even in people with neurological disorders like Alzheimer's. It has not been yet studied in people with epilepsy, as they fear this might cause a seizure. It is still a study, a very interesting one with great results on people with Alzheimer's. But to evolve, as it was mentioned, it needs financing. The pharma industry in the US seems not to be much interested as this method can not be patented. Hope, this doctor receives some financing to continue his studies.
If you have any other questions, feel free to ask me.
Chris/Santosha