Living with epilepsy - Introduce yourself & meet others

I used to take Keppra, for 4 years, until 2015. The side effects were horrible. I am only taking Full Spectrum CBD oil and Kava.

I have reacted horribly to every presc med and so it is just Kava and CBD oil. I am grateful that you have gotten relief from your seizures, meaning that they have lessened.

@carissadennery, good morning

First of all, Happy 2023. I wish you and all in this group, a year of better health!

Thank you for your kind words. There are more and more studies, showing a strong relationship between the gut and the brain. Usually, epileptologists say that gluten does only affect those with celiac disease. But I do not have celiac disease according to some recent exams my doctor asked me and taking out gluten from my diet has made a huge difference in my seizures, reducing them much as I have already mentioned. The gluten that are in our food nowadays irritates much the gut! My husband who is in good health and does not have epilepsy, is also on a gluten-free diet, feeling much better. A contact of mine who has autism is also on a gluten-free diet recommended by her doctor and is better. Dr. Dale Bredesen, who is specialized in Alzheimer, also recommends a gluten-free diet to his patients. Unfortunately, traditional western medicine does not yet recognize the benefits of a gluten-free diet for those who have a brain disorder.

Curiosity, the CBD you take is Epidiolex?

Have a nice day!
Santosha

Carissa
Can I ask how much CBD do you take daily and how many times a day. Is it in pill, tincture or gummy form??
James

Hello, I am new to this forum and wanted to learn from others about this problem. I was diagnosed with TEA or transient epileptic amnesia. Dealing with constant headaches, anyone else experiencing this? Thanks!

Hi all, I don't have epilepsy but our daughter does. It's been a long 6 years, she was dx at 7 wks old. It's so hard to see your loved one having seizures, but she is so strong and determined. She is our warrior!!

Hello, I was diagnosed with nocturnal tonic-clonic seizures about 9 months ago so I have much to learn. I have lived with migraines most of my life so I am attempting to see if there is some pattern between the two. I do know I just completed a week with covid, and that was the worst headache I have ever experienced and hope to never have to go through again!

Ouch! My first two seizures were amnesia type. I lost a lot of memory with the second one. The third seizure was the tonic-clonic type. I was unconscious for over 2 hours. My neurologist didn’t seem too concerned with my chronic headaches. She prescribed keppra for seizures and another drug for the headaches. I can’t remember what it was. But that medicine didn’t work. I am more concerned if they have the correct diagnosis, so I am getting a second opinion. If you find a drug that works for you, please let me know! Good luck and thanks for responding.

She is a very beautiful young lady! Life isn’t fair. Hoping and praying the doctors will find a cure/treatment to suppress the seizures. I just read a book about a young girl who had very bad seizures and eventually had a positive outcome. I will pass on the name of the book later. Good luck!!

Hi @albendorf, Good Morning
I have seen second, third, and many other opinions, before finding my doctor and the best treatment for my epilepsy and myself. What I can share with you is that being treated by an epileptologist rather than a neurologist has made a huge difference. My epileptologist is also a very open doctor, treating with medical cannabis, yoga, diets, and other instruments. I am back to life!!! Do not give up on searching for the right doctor for you. Unfortunately, I can not help you with an epileptologist's recommendation in the US, as I do live in South America. But perhaps others in this group can.
All the best to you and take care!
Santosha