Does it ever get better? The stress of having seizures yk do you ever get happy? Does the stress die down a little? Do you ever get freedom? Is taking the meds everyday worth it?
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I can well understand your feelings and questions as I also went through the same experience at the start of my epilepsy treatment in 2019 and 2020. In those years I had those questions "When will I have again a normal life?", "When will I feel ok again" , "When will I have my seizures under control?" and so on.
Through the help of my neuropsychologist, I saw I was on the wrong way. My life had changed and would not go back to what it was before. I had to accept it. Acceptance was crucial to smile again, something I have worked much with my neuropsychologist on my sessions.
Another thing that helped me much in the process of acceptance was to be treated by a good epileptologist and not just a neurologist. I had terrible experiences with the 5 AEDs I have tried in 2019 and 2020. Some did control my seizures, but the side effects were terrible and I ended up ill in bed. Others made my seizures worse. When I changed to my current epileptologist in 2021, he said that I had refractory epilepsy and tried medical cannabis to reduce my seizures. My seizures got reduced in number and intensity. I have also NO bad side-effects with medical cannabis, just a bit of somnolence in the afternoon that I solve with a yoga nidra practice and some nap. I do also control my seizures through a gluten-free diet (reduction of 60% of my seizures), management of my seizure triggers, exercise, and yoga. I still have an average of 2 focal seizures per month. But I prefer to have them instead of taking an AED and being in bed most of my time, though I know that seizures with time can undermine our cognitive reserve. With a more normal life, I started a new graduation, finding a new meaning in my life.
Today, I see my epilepsy more as a friend than as an enemy. A seizure shows me I have not respected my body. Most of my seizures are caused by a lack of enough and good sleep and stress. My epilepsy has taught me so many good things that I would not have learned otherwise. Some time ago, I have written a post here in our group about that, in case you are interested:
Do please find a good neuropsychologist who will help you in this difficult moment you are going through. Most of us, I understand, went through this experience.
My best wishes to you!!!
Chris (or Santosha)
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Thank you this really helped
My pleasure @hon0105 !!!
One more comment regarding my last post. By not accepting my epilepsy in the first years after the diagnosis and the changes it has brought, I noticed that I was being violent and not kind to myself.
Let's be kind and hug ourselves!
Have all a nice evening,
Yeah that’s exactly what’s happening to me thanks for all you’ve done, have a good evening too.
My wishes for you smiling again!!! If you want to talk, please feel free to send me a private message. It will be a pleasure.
I’d like to welcome you to Mayo Clinic Connect. Connect is a terrific place with many knowledge and friendly people. I see you already met some.
Chris (@santosha) mentioned ACCEPTANCE.
Accepting the reality of your diagnosis is absolutely essential and not to be embarrassed or ashamed when seizures happen. These things are so important for your current and future happiness, physical, mental and emotional health, your overall quality of life. Unfortunately, sometimes people are embarrassed and/or ashamed to have others see them having a seizure and they allow their Eoilepsy to control their lives. I know some people who refuse to leave their homes for fear of having a seizure in public. Hopefully, you'll be a little like me and not care if people see you have whatever type of seizure/s you have. I mostly had Tonic Clonic seizures, fall, lose consciousness and flop around like a fish out of water.
I developed Epilepsy at 14. I had no problem accepting my diagnosis at the time, but then my seizures became increasingly more severe and more frequent. I was having daily seizures sometimes a dozen a day, I was told to leave school, more visits to the emergency room from injuries, hospitalizations, surgeries, induced comas to stop seizures that lasted from days to many months, dealing with the Epilepsy stigma, employment discrimination, not being allowed to drive and other inconveniences. I ended up having a breakdown. I painted my bedroom black, through my television set out the window and kicked holes in every interior door. I was lucky, I had awesome parents and they helped me come to terms with what was happening.
Because of them I came to terms about having Epilepsy and I refused to let Epilepsy control my life, feel sorry for myself or be depressed. I tried to live my life the best I could. No, it wasn't easy. We know all too well what you're going through. Living with the fear of not knowing why, when, where, what type, what potential injury the next seizure may cause. But you can't worry about it. it’s gonna happen regardless, so why waste your time and energy on worrying.
In answer to your questions I would say,
Yes Epilepsy gets better but it gets better because of the important part you play by the choices you make.
Being happy is certainly an achievable goal, and up to you. Less stress and so on.
What I’m trying to say is; You have to accept life on live’s terms.
I made it and you can too. It's all about attitude. Keep a positive attitude.
Best of luck to you.
I think this site on Mayo Clinic’s site is very useful. It's about stress and changing negative thinking to positive thinking.
I very much agree with @jakedduck1 !
I have also fought against epilepsy taking control over my life. At the beginning, it did indeed take control over my life. I also had a stupid doctor who told me that I should not leave home alone, bringing me just fear and insecurity. Thankfully, with the help of my neuropsychologist, I regained confidence in myself and my epilepsy does not stop me anymore.
Very recently, I had an insight that at first will seem quite paradoxical. With my epilepsy experience, I have observed that I have somehow gained more control over my life. This can sound very strange at first. Let me explain it. Before the diagnosis of epilepsy, I did many things automatically, to please people around me or because society demanded it, not respecting my limits and not being always kind to myself. With the epilepsy diagnosis, I have learned to say more NOs, always in a kind way, doing what is best for me and respecting myself more. In this sense, I feel that I have gained more control over my life, having my epilepsy more as a friend than an enemy.
Wishing you all a nice day!
Good morning Chris, or maybe it's afternoon there.
I have read many accounts of people's lives with Epilepsy where they refer to Epilepsy as their friend but didn’t explain why they felt that way. I certainly never thought of epilepsy as being my friend but I I was thinking more of the negatives, shame on me. Now that you explained it, I’ve actually had some of the same experiences.
Thank you for your comment.
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