Living with epilepsy - Introduce yourself & meet others

Hi @kel1
I am so happy for you and to hear that you have had hardly any side-effects in this process of taking Keppra slowly off 🙂 🙂 🙂
I believe I did not have such a brain burst experience during my seizures. Curiosity, are your seizures partial or generalized? My seizures are mostly partial (simple and complex), having temporal lobe epilepsy.
CBD is a component of Medical Cannabis.
Have a nice evening!
Santosha

Hi @heal33
Exactly, I just take pure CBD and not the full-spectrum medical cannabis, this last one contains THC and other components of cannabis. Already much research has been done on medical cannabis and more needs to be done. But the economical interest on it ..... It is important to be treated by an epileptologist with experience in prescribing CBD and medical cannabis, not all epileptologist have such an experience yet, unfortunately.
My diet is a gluten-free one. Even if you are not coeliac, gluten can provoke inflammation and trigger to seizures. Taking gluten out of the diet does not hurt!!! Very recently I have been reducing the consumption of dairy products to see if it benefits me. As it is known, the food chain is not as it once was, it has changed much.
As to the behavioral approach, in such an approach, you learn about your own triggers, what leads to your seizures and how to control/manage those triggers so as to avoid seizures.
Hoped to have helped a bit by sharing this information 🙂
Have a nice evening!
Santosha

Hi Santosha.
Well my previous neurologist diagnosed me with Generalized and partial but then wanted to say some more.
I however think that they’re just tonic conic because they last for 1-5 minutes. I’m out of it for half the day and then I’m okay. So we’ll see what my new neurologist says.
I’ve heard of temporal lobe epilepsy I hope it’s not too hard on you.
I have talked to my doc about CBD I might now that I’m tappering off my meds just to see if it works and I’m calmer as well.
Does it work for you?
Kelly

Santosha,

Thank you for taking the time to answer my questions. I am seeing an epileptologist now but don't know if he would agree to have me use CBD.
I will keep looking.
I also read today that they say there is a link between inflammation and epilepsy. Inflammation is a word that seems to come up often with health issues.
Again thanks for you help. I notice you have responded to other people's questions too in the past.
I have been trying to keep gluten and dairy out of my diet.

My pleasure @heal33!
I have been to many doctors since I have been diagnosed with epilepsy in 2019. Not many are experienced in treating patients with CBD. Hope you can find a doctor with such an experience in your city :-). I just do not share the contact details of my current epileptologist, as I do not live in the United States.
Have you noticed any changes in your seizure activity since you took gluten out of your diet? I first experienced it in November last year, having my seizures dropped by more than 50%. In December, because of meetings with friends, Christmas, New Year, etc, I went back to a normal diet without restrictions and my seizures have more than doubled. I have then decided to take gluten out of my diet this January and I remain gluten free since then. My seizures have reduced by more than 60% when compared to the same period of last year. My husband has been with me on this diet and he also feels better.
Santosha

I must confess I have cheated with the gluten with a cookie once or twice a week and lately have been having strawberries and whipped cream. So I haven't maybe been strict enough. Not sure if that would help me or not.
I emailed an epilepsy organization (forgot the name) but they couldn't refer me to anyone. I have an appointment with my doctor next month and may bring up the CBD subject but don't know if most doctors at hospitals would approve it.
I'll keep looking though.

@kel1 , Hi
Thanks for sharing this information about you!
I am feeling much better with the CBD treatment compared to conventional treatment with AEDs (Lamictal, Tegretol, Trileptal, Vimpat and Gabapentin) that I have tried for 2 years. If the CBD has eliminated 100% my seizures? No, but my seizures have reduced and have become milder. I prefer to have my average of 2 seizures a month with CBD rather than no seizures at all with some AED I took and feel depressed, with bad sleep, and experience other terrible side-effects I had with AEDs. I was in bed most of the time during this treatment, living like a sick person. Now I am back to a "normal" life and smiling again. But again, as I have mentioned I am a very sensitive person to any traditional medication. The reactions to traditional medication are much harder on me and in some cases, I do reverse the effects of those medications. I am happy for those that can control their seizures with an AED.
CBD is known for its calming effects, but what I believe helps me the most with my anxiety is my yoga practice (hatha yoga),
Hope you stay well 🙂
Santosha

Nowadays, there are plenty of products gluten-free. Alternatives have grown a lot. I buy some delicious cookies from Jasmine, a French company. On Sunday, I do my own pizza with rice flour, tastes great! Staying without gluten has been easier than I had imagined. I can not say the same for dairy products, as I love cheese and yogurt (it is my French and German descent rsrsrs). But give it a try to stay a whole month without gluten and see the results on your body and how it reacts to it. Staying without gluten does not hurt our bodies.
If you are interested, there is a book I have read called Braved New medicine by Dr. Cythia Li, MD. Though it is not about epilepsy, this book has opened my eyes in many respects. It is about integrative medicine.
Take care!
Santosha

I have the book by Dr. Li. I should try some of the things she suggested for the vagus nerve. I have tried others.
Can't seem to find the cookies. Is there a website?

Hi @santosha @heal33
I’ve recently started a vegan diet. It really helped clear my skin and acne. But as with my meds making me nauseated all the time I quit that a year ago and picked it up again now that I’m reducing. I tried Keto but that’s even harder with reading so many labels. Also I read through comments and noticed you were on a birth control pill which caused your seizures, not saying mine did but it had bad effects it was accutane.
I recommend a book about healing from Queen Aufua. She talks a lot about healing the woman’s body. The man’s as well. And if you want to go vegan she writes up a better plan in her book so you don’t have to just guess.
Have a good day/night
Kelly