Have you experienced emotional challenges associated with epilepsy?

@qnc
Yes, it is quite common. Nervousness, and anxiety can happen before during and after a seizure. Have you ever felt or expressed anger? Do you experience auras or perhaps a prodome
Are you having focal impaired seizures? Have you been diagnosed with TLE (temporal lobe epilepsy??)
How long does the nervousness and anxiety last?. Have your doctors pinpointed where your seizures begin? Have you ever had a prodome, a warning that may happen right before a seizure or even. days before. If someone has a prodome just prior to a seizure I'm not sure how doctors differentiate that from an aura unless it's the type of symptoms themselves, but that's just a guess..
In my opinion you're fortunate to have these warnings prior to a seizure. I never had any warnings of any type, Just down-n-out.
Take care,
Jake

@qnc
I've had epilepsy for 60 years and I can honestly say that during the past 58 years I haven't had any type of emotional issues associated with my epilepsy or otherwise.
However, the first two years of my epilepsy was very bad, it quickly got worse and worse.
I ended up having a nervous breakdown. I was very angry. I painted my bedroom black. I threw my television set out the window. I treated my parents, awful and kicked holes in every interior door in the house. I don't actually remember any of that however, I remember being told those things. I hate to think what else I'm may have done during that time. I went to two different psychiatrist who ended up being crazier than I was. After my second year, I just decided that epilepsy was going to be my new normal and I lived in my life as such. I never worried about if winner where I was going to have my next seizure or if there would ever be a next one. I know a man who has never gone outside because he's afraid someone will see him have a seizure. What a sad life. I decided to live my life to the fullest that I was capable of. I did some very foolish things. I had two seizures on the roof of my house was pruning a tree and fell out of the tree fell off of a ladder got stuck on a fence I was trying to climb over. I used to go swimming alone, including in the ocean. I'm sure I did many more things that I can't think of.
I don't know how long you've had epilepsy, but I hope you can come to terms with it and accept it for what it is. Seizures are going to happen regardless of whether or not you worry about when next one will be so what good does it really do to worry? As common as it is anxiety and stress are enemies to epilepsy. They can lower the seizure threshold, which I'm sure is the last thing in the world you want to happen. Why do you worry about going certain places?
Take care,
Jake

@jakedduck1 I have a frontal lobe epilepsy,and do have auras. At the beginning,i didn’t accept that i was epileptic had no clue when i would have a seizure and i would have them randomly and end up in hospital.Waking up to everything white around me which was scary. I’ve had a tube down my throat because i couldn't breath, ofcourse people have worse cases but i would be in shock when i wake up and think i was dying or something.There was this one time i ran out of hospital barefoot,with only the hospital gown on which was slit from the back,i rocked up to my mums house 4am and she just asking so many questions. at that time,i remember that day because i hopped on a random taxi with no money thank god the driver was nice enough to take me home safely.Now have accepted it and know around the time i’ll have a seizure which is before or after my period.My doctor told me to put it in my calendar and see if there is any pattern and thankfully i did because now its so much easier.For me it was the medicine that made a whole difference,i have had epilepsy since 2017 and i use to take keppra which was so bad i was dropping anywhere and everywhere randomly but the last 2 years the doctor switched me to lamotrigine which is way much better,keeps me normal i guess.I think the medicine your given makes a huge difference because with keppra i would be angry for no reason if someone looked at me different i would want to smash them.If my friends have a conversation and i just walked in late i would think they're talking about me 🤯🤯,

@jakedduck1 I don't worry but i just tread carefully around the times i know it will be coming(around my period),but i don't know why i feel anxious most of the times,i’m not scared of anything or worried at all,i just get that feeling of being scared, i get sweaty hands and im just taking deep breaths i can’t explain it to be honest,im still trying to figure it out😅.
The worst part is people around me thinking i will have a seizure if i get emotional,or swim in the deep end or even a sauna for 5 minutes,i mean i wouldn't do something if i wasn’t sure if i can handleit 😒😒. I had a son young so i chose not to drive, i would feel so guilty if something happened to me and i was the one that caused it 😩😩.

Its not just around my seizures only anymore,its constantly actually. I use to be confident,outspoken,vibrant,a peoples person,then i just shutdown after i started having seizures.Now im just anxious,sweaty,uncomfortable when i go out,my body just automatically wants to do what i came for and leave. My true self only comes out when i get comfortable with a person and really get to know them or people i’ve already known beforehand.

@qnc
I have had epilepsy for 25 years and have experienced the same thing. Meditation daily has made a huge difference. 20 minutes daily; better if you study and research it and really get into the practice because it'll calm you down, and help you control your thoughts and emotions. The medication I take only partially controls my seizures but meditation helps me control the rest of me and I have found my happiness again.

@qnc
Welcome to our group at Mayo Clinic Connect, and thank you for sharing your epilepsy journey with us. I hope that here you'll be able to make many connections with people who truly understand what it's like to live with epilepsy, exchanging experiences that might be helpful to you as well.
I have temporal lobe epilepsy, starting with auras and evolving mostly to complex partial seizures and rarely to tonic clonic ones. Once I accepted my condition and developed a more inward look at myself — yoga has helped me greatly with that — I started to be able to identify some prodromes, which helped me to take action and avoid seizures. For me, it's hard to put these unusual sensations into words. But they're very different from my auras, when I experience some strange smells and tastes and déjà vus. Like you, I stop what I'm doing and take deep breaths until I feel normal again, taking it easy for the coming days.
I also used to have seizures around my period — catamenial seizures, as they're called. Having identified this trigger with my neurologist, he worked together with my gynecologist to find a solution, opting to put me on a birth control pill without pausing for every 6 months. This has been a great solution.
When you mentioned experiencing anxiety and other sensations around your period, PNES (psychogenic non-epileptic seizures) came to mind. Since you already know that seizures tend to be more frequent around your period, that awareness itself can trigger anxiety — and sometimes what follows may be PNES rather than an actual seizure. The two can feel very similar, which makes them hard to tell apart. In my case, it was an EEG that confirmed I was experiencing PNES rather than a seizure. I've experienced PNES myself under different circumstances — after a good period of seizure freedom, when the anxiety of seizures coming back began to take over. The sensations you described were quite similar to what I experienced, including anxiety and sweating. There's a very interesting discussion about PNES here in our group, which might also be helpful to you:
Have nonepileptic seizures/psychogenic nonepileptic seizures (PNES)?
https://connect.mayoclinic.org/discussion/non-epileptic-seizures-or-pnes/
Have you shared these sensations with your doctor to evaluate whether you might also have PNES? As your seizures around your period follow a pattern, I believe it'd also be worth discussing with your doctor to see if there's a solution, as mine did.
I hope that sharing these experiences may be of some help to you on your journey.
Chris

Hi @jolivmorris
I see you've recently joined our group — welcome!
Like you, the practice of yoga and meditation has also been of much help in my epilepsy journey. I have temporal lobe epilepsy with mesial sclerosis, which is a type of epilepsy known to be highly refractory. Like you, medication helps — I'm currently on Keppra and pure CBD oil, or Epidiolex as it's known in the US — but there must also be effort and commitment on my part.
As you said so beautifully, meditation doesn't just help to calm down, but to control our emotions and thoughts. Through yoga, I've been learning to live more in the present and trying not to let my fears about the future run my mind. As my yoga teacher says: "Be careful not to anticipate troubles that haven't arrived yet".
I'd love to know a little more about your journey. Would you mind sharing what kind of epilepsy you have and what medications you're currently on?
Chris

@jakedduck1 For me personally, I finally learned of my potential triggers: Stress, lack of sleep and dehydration. I've never thrown things but certainly wanted to. I really don't care who knows now and try to live without thinging about. The isolation ( not being able to drive ) is a killer for me,.

@rvince

Yeah, not being able to drive was the toughest part of epilepsy for me. I developed epilepsy as the result of a brain tumor and its treatment. Finally the meds totally controlled the seizures and I was allowed to drive again. One of the happiest days of my life. Right up there with my wedding day and the birth of my first child.

Where do I go?

Exciting places like the grocery store or hardware shop or to pick up the meds.