Connect
← Return to Any drug besides depakote for generalized juvenile epilepsy?
Discussion
Any drug besides depakote for generalized juvenile epilepsy?
Epilepsy & Seizures | Last Active: Apr 23, 2023 | Replies (15)Comment receiving replies
I dealt with Grand and Petite Malls 34yrs. They were found to be caused by hormonal problems being that they happened only during the whole week of menstruation. Started out having 5-6 daily 3-4 days a week. Those went on for the whole 34 years. Just by chance while lunching I heard a man speaking to another man. I was sitting close enough to overhear him saying that his medical profession was in Neurology! Instantly I went over, introduced myself and explained my problems , with his approval, of course! He referred me to another Neurologist (Trauma Dr.) I then made appointment went to see him. He glued all those wires around my head and pulled me off immediately Dilantin and Phenobarbital, which had no positive effects, anyway. When I woke up he had informed me that I suffered 5 seizures. He then proceeded to tell me that the seizures I had suffered from were the opposite of what the normal procedures were. I don’t remember the exact details but it was the opposite way that occurred with others. Either starting on one side of the head and ending up on the opposite side or the opposite direction of other.
Immediately he put me on Ativan. When/if I would have an aura immediately I took the pill! The medication, to me, was a miracle!
I have not suffered any seizures for over 17 years! Up until, approximately, a year or so ago I did experience still monthly, auras. Those had become lighter and lighter and lesser and lesser!
I no longer have those auras enough to even think about!
Hopefully I helped you with your problem!
I, finally, was able to drive! Exciting! Those seizures began at the age of 18 and never stopped for 34 years! Now at the age of 67, I’ve been living a fabulous life with no problems or even regrets!
Good luck and
God Bless you, always
Marie Dyer
Replies to "I dealt with Grand and Petite Malls 34yrs. They were found to be caused by hormonal..."
Hi Marie, Good Morning (@aproudrebel)
Thank you so much for sharing this with the group. It gives us new hopes and ways to handle epilepsy, for sure. God bless you!
I am very happy for you !!!!!
I have also met someone by coincidence that helped me so much in my treatment with epilepsy. And I met her here in our group!
This was in 2021 when I started to prepare myself for surgery to remove my lesion on the temporal lobe on the left side (hippocampus). I got the contact of a mother whose son went through the same experience, sharing with me the contact of their neurosurgeon. I contacted this neurosurgeon to have a second opinion and he was totally against this surgery, saying I would have more losses than benefits as my lesion is in the hippocampus on the left side (I would lose much memory and other cognitive skills). He advised me to try more medications, recommending me my current epileptologist. I have so canceled the surgery and started treatment based on CBD, a gluten-free diet and hatha yoga, improving and feeling better every year. I am very happy to have found this epileptologist who really does the best for his patients. I am also very thankful to this mother who shared the contact of this neurosurgeon with me and changed my life. God bless her!!!!
It is today clear to me that surgery was recommended as it was a better source of profit for the doctor and hospital. Sad to see that this is happening in our current world. But thankfully we still have good and ethical doctors around that respect and follow the oath "first do no harm". BTW, there is a movie called First Do No Harm with Meryl Streep on YouTube. It tells the story of Charlie from the Charlie Foundation who could cure his epilepsy after the keto diet.
Here is the link to the movie: https://www.youtube.com/watch?v=xY9ZMGK5Hbs&t=17s
If medications do not work for you, there are many alternatives before surgery that are not always explored such as diets, hormonal control, and helmets. Last year I have been to a neuroscientist recommended by my epileptologist, who told me about helmets that if used daily for 30 minutes could help control seizures. Still a possibility I am considering if it is necessary after my SIBO (small intestinal bacterial overgrowth) treatment.
To all of you, do not lose hope and if you do not feel comfortable with the treatment your current doctor is recommending, check for a second opinion or even a third opinion. I have been to 12 doctors, before finding my current epileptologist.
Santosha
Connect
Thanks for your reply. Glad you had that encounter with that doctor. Funny how we meet certain people in our lives by coincidence. I have that same concern as well... is he taking meds that he doesn't necessarily need. My son was diagnosed in the 4th grade. He was playing a video game. He has photosensitive epilepsy. A lot of stuff I read says that it is possible that if you are diagnosed with this at a pediatric age that you could possibly grow out of it in your mid 20s. Scared to take the risk. I am definitely going to ask about the ativan since I see it treats a lot of different symptoms then just seizures. Its nice you can take it as needed although my son never recalled having any type of warning. I often wonder if he not had been into video games so much when he was little would we have ever known he had epilepsy?