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Hi @lyhay1973

Thank you for your message and information.
My epilepsy has started when I was 12 years old, manifesting itself in a very mild way (my seizures are focal and not convulsive and happened around 3 times a year). Thus, I have lived with epilepsy (left temporal lobe) without knowing it until I was 48 years old when it got more severe. Though I and your daughter have similar symptoms, perhaps we do not have the same kind of epilepsy, as it seems she has primary generalized seizures. Seizures can start in one part of the brain (focal seizures) and spread throughout the brain (second generalized seizures) or happen in all brain (right and left hemisphere) at once (primary generalized seizure which is convulsive).
I agree very much with @jakedduck1 that accepting epilepsy is very important to cope with this disease. This has been quite a challenge for me in the 2 first years, as with the medication treatment I got much worse (I have medical resistant epilepsy), hitting me hard. I felt like I had to give up on my life (stopped working, driving, meeting people, and with many activities of my old routine). Not accepting my epilepsy was something that has caused me much anxiety and stress, one of my main triggers to seizures. Psychotherapy has been of great help in accepting my epilepsy!!!
I have never been a calm person since my childhood, but after my epilepsy got more severe, my anxiety has risen much, having concentration problems, memory problems, and sleeping issues. I have then started to practice yoga (hatha/traditional and nidra). Yoga nidra is a deep relaxation practice that helps me much to compensate for my bad nights of sleep (30 minutes of yoga nidra can represent up to 2 hours of deep sleep). Sleep is another seizure trigger I have. Hatha yoga and its philosophy has been helping me with many things, not only anxiety but also with dealing with my current challenges and my new way of life, living more the present than the future, among other things.
Knowing more about epilepsy, especially my type of epilepsy, is something that also has been positive in my recovery. The Epilepsy Foundation has been a great source of education for me. It has helped me to better understand and register my seizures, reading signs and it also has brought somehow a feeling of safety. Thanks to this education, I understood the importance of being treated by an epileptologist and not just a neurologist. This is very important in my opinion! I have experienced many differences between the treatment with a neurologist versus an epileptologist.
Joining groups such as the Epilepsy Group at Mayo Clinic Connect has been another thing that has helped me to cope with the challenges of epilepsy, not only in terms of information and education but especially in terms of a feeling of belonging. I have met several nice people here at Mayo Clinic Connect!
Regarding CBD. Since last year, I have started treatment with medical cannabis, after having tried 5 different AEDs (anti-epileptic drugs). First, I have been prescribed CBD with low THC and now I take just pure CBD. I still have seizures, but they have become much milder and do not finish with my day as they did before. My current doctor has changed to pure CBD by May this year. I see that with CBD with low THC I had fewer seizures, something I will discuss in my next appointment. Though I am not yet seizure-free, I am feeling much better and back to life. I also use a rescue spray of CBD and THC, which immediately interrupts my seizures.
Exercising has also been positive in my recovery process. Due to medication, I have lost balance and fallen, hurting one of my knees (I have also been a gymnast and had already issues with this knee before) and having walking difficulties for 1 year. I now practice Pilates and do some walking, feeling more disposed and with more energy.
I also totally agree with your and @jakedduck1 opinion about the bubble. Do not treat your daughter differently because of the diagnosis of epilepsy.
I hope your daughter will be soon copying better with her epilepsy. If you have any other questions, feel free. It is a great pleasure to help others with epilepsy!

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Replies to "Hi @lyhay1973 Thank you for your message and information. My epilepsy has started when I was..."

Hello Sabtosha,

I can not thank you enough with all the info you just shared with me. I almost want to cry…..you have given us some avenues to explore that we never knew about. Her and I will be talking about some of the activities you do to help with your stress and anxiety for sure. Thank you sooo much. I will definitely be in touch and keep you posted on how it’s going.