Hi Leslie 3 I like your post that the point of this site is to help each other as only us now how deep down we feel we put the brave and happy 😁 face on but deep down we hate it but we are strong people just coming on here and talking is a start send you all a hug and my bless never let epilepsy beat us

I started taking what was then Clobazam or Onfi long ago. It had not been approved by the FDA, so I bought it from Canada "for personal use only." It was sent to the Doctors Office. I was being treated for Breast Cancer, but one of my meds made the Chemotherapy and Radiation not work. I now am on Levericetam, Onfi, Briviact and Epidiolex. Levericetam is Lamotragine. If I remember my triggers, I am fine. They will do another 72 hour EEG when I am home coming up sometime. When they last did, there were only 5-8 second events while I slept.

I do not sleep well, the food here leaves much to be desired. This group has been helpful. We are able to compare out experiences with Doctors, Medications, Side Effects, Feelings, etc. Some are patients, others caretakers, children, spouse or in some other way exposed to Epilepsy.

Leslie

Am on keppa and levetiracetam am on 1500 2+ day just up them 3 WK ago and neurologist put me on clobazam as I was haveing cluster most I had was 10 in 2days so the clobazam you take 1 which should bring you round because after 4 to5 mins I stop breathing hopefully upping medication should help or it's back to the start new medication hope you're well

I had been considering getting guards like when you are in the Hospital, so you cannot fall out of bed. In Stamford there is a store that would carry them, as well as other hospital items.
Leslie

I have nocturnal seizures along with daytime. I didn’t know recently!