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What helps you manage anger when living epilepsy?
I have a lot of anger in my life because of my epilepsy.
I can thank the doc who delivered me for my seizures, I was a forceps baby and I've always wondered why he didn't use his hands to deliver me, My mother was in labor 72 hrs with me and obviously
my mother was to far along for her to have a c section.
I've had just a few jobs in my life and I've never driven a car.
I do remember someone telling me once her husband would never drive her places if she was unable and that is how u find out if some one truly loves you. He has seen me to h@ll and back. He also has epilepsy but his brain surgery stopped his seizures. Had surgery in 1982 got the Vns in 1999 and neither was able stop my seizures.
Not being able to drive.
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Tomorrow I start Xcopri for the 2nd time and I learned long ago never to get my hopes up. I'll be starting on 25MG and in 3 months I will see my Epileptologist again. I'm not sure how it will go and I certainly hope my seizures start decreasing I've had 6 this month. They are wearing me out.
I've also looked into the RNS just in case this doesn't work out.
Belinda 5000
@belinda5000 Worn out for me was after TC's. I could't carry the weight of papers in my briefcase. Sickening depression because I've always maintained a physically active lifestyle. I understand your being worn out. Please try to stay with this group. For me, not only that I learn from others' experience and suggestions, I realize I am not the only one with the condition I have. It can make a difference.
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2 ReactionsSometimes, take a step back. Instead of feeling angry over epilepsy/seizure, I think it feels better to see it as a challenge. To push the boundary for ourselves. Unfortunately, my epilepsy is a refractory one and I have almost daily seizure I can hardly take a day off if you know what I mean.
Last March, I just took a 4 hr flight after not having stepped into an aircraft cabin for almost a decade. How many decades do I have not to do things I love and I can control doing? I had disappoints towards medication, people and pretending to be ok when I was not because no one without epilepsy can possibly understand my emotion. Popping those medication like candy everyday? Giving up drinking which I love? Soon I’ll have to switch to generic after my insurance coverage stops coverage. Who knows whether they’ll work?
That 4 hour flight just felt so good.
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2 ReactionsI have worked twice can't take generic epilepsy meds had epilepsy more 60 years tried everything and I'm told I don't have the right be angry.I'm med resistant and people here don't try understand.
You'd think I was the worst person in the world.
Belinda
Hi Randy!
I'm so happy to read that you're back, and that things have gotten a little better and clearer now.
Sorry for taking a few days to answer your post — my plate has been quite full these past ten days, and I felt I needed to put my own mask on first, taking some days off.
I understand very well what you mean about hiding your feelings becoming second nature — I went through that too. Thankfully, I had the support of my neuropsychologist, with whom I could speak openly and without restraint about how my heart felt at the time, so as not to frighten my husband, my parents, or close friends.
Have you had the chance to speak with your doctor? How is your seizure pattern going?
Sending lots of good vibes 🙌
Chris
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1 Reaction@belinda5000
Hi Belinda!
I'm genuinely hoping Xcopri brings you some relief this time. 🙌
I'm not sharing this to compare struggles, but I've lived with seizures since I was a teenager, following an accident in childhood that left me in a coma for 10 days. The diagnosis of temporal lobe epilepsy with mesial sclerosis didn't come until I was 48 — I'm 55 now.
Like you, my epilepsy is also refractory — I didn't have much success with various traditional reference medications. What finally changed things for me was Epidiolex (pure CBD oil), later combined with a low, children's dose of Keppra.
I don't know if that's a path that's been discussed with you — has your doctor mentioned Epidiolex as an option?
What kind of epilepsy syndrome do you have? Do you have the possibility of working with a neuropsychologist?
Chris
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Hi Chris I have started Xcopri for the 2nd time and I had to ,let her know that I wasn't able to handle being on Tegretol,Topamax and Xcopri all at once. I told her I was going to start taking myself off the Tegretol 100MG a week and I was an old pro and she could yell at at me all she wanted.
She got back in touch with me and actually said to me 100MG was fine in coming off Tegretol.
My old neurologist had taught me a lot like how to come down slowly .
I've been on Tegretol since 1974
It's the Topamax I'm worried about on how to come off of.
I'm on 25Mg of Xcopri once a week right now.
Belinda
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1 ReactionThank you for your post and filling in gaps. Have reached out to counselor
and she's probably going to shake a little next session. Been keeping
notes better. Will touch base later on with the groups 👌 and see where I
belong now. Have a wonderful and blessed weekend ✨️ 🙏
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3 ReactionsThank you
@belinda5000 Like you.
My Lamictal and Keppra can't be replaced with generics. Medicare doesn't want to hear about it. TrumpRx has Brand Name meds for other conditions. Why haven't national epilepsy organizations try to assist us in this manner. I've never seen anything about it.