Questions & Answers

It appears every 3-6 months my seizures become out of control again and I need to increase my medication. Things will go well for a bit and then get out of control again and a dose increase will temporarily help. Is this normal? Does this happen to you guys? Im on tegretol, vimpat, and clobazam.

My question is how many of you experience twitches and body tremors in different parts of your body and how common is it to get them

I know that if I had a grand mal seizure when I was at Brigham and Women's Hospital for EEG Long Term Monitoring, then a separate recording device in the room (wireless) could have been used in the research for this potential replacement for all of the wires needing to be attached during EEG testing and especially EEG Long Term Monitoring. This was not the standard clinical trial because it is simply getting the patient in the EEG Long Term Monitoring to agree to have the wireless machine in… read more

Ever since my first seizures, its been so much harder to focus on and/or complete any tasks. I've read a little about the two and according to epilepsy.com, it is a lot more common for adults with epilepsy to also have ADD/ADHD. Has anyone had indicators of either of these and approached your provider(s)?

Site:
https://www.epilepsy.com/learn/challenges-epile...

Thank you to John, Patrick and Sam (Sam send me a message so I have your @name) who participated in the Zoom call with me, Marsha, on Saturday the 22nd. It was beneficial and insightful to bounce ideas around on topics to discuss and we would like to hear from others on this site as well as have more join us.

We are in the process of deciding on 1) when to have the calls, especially due to time zones) and it may be as we grow that we split groups into time zones and countries) as it is needed… read more

I've noticed that when im feeling dizzy or just really off my game that a cup of coffee helps take the edge off and makes me feel better. Does anyone know why that is?

Weird question. But has had anyone had any type of surgery where they have been put under anesthesia, and if so did it effect their seizures. I had knee surgery and it was noticed by some people that for a while when the anesthesia was in my system ( for the first week or two as anesthetics last in the body for a while) my seizures were absolutely non existant and i noticed i didnt experience any of my normal symptoms with my epilepsy. Has anyone else experienced this?

I'm just wondering has anyone been asked to show a doctor what happens when you have a seizure like act it out
I mean how do you act out a seizure 🤷‍♀️or is this common practice 🤔
My first neurologist appointment he asked him to show him what happens , the second one didn't but then when I was doing my eye test the optometrist asked me to show her what happens I told her I can't mimick the same actions as my seizures.
I just find it a bit insulting or am I just being way oversensitive on… read more

I was diagnosed with epilepsy in 2012. My seizures are complex partial seizures. Complex partial seizures seem to affect your emotions, reactions and focus. The medication, along with a good neurologist has helped me a lot. My seizures are under control now. I say now because seizures never seem to be under control for the long term. Medication has to be changed, increased, etc. It is frustrating. All of my life, I have had a hard time making friends and have felt awkward socially. I think… read more

Does anyone have any suggestions on how to maintain a relationship while having epilepsy? I'm 37 and feel so alone. I've tried dating, and in the last 10 years have had no success because of my epilepsy. My partner's often would think I was lying about not being able to remember things. They think I'm using it as an excuse or making it up to get sympathy. I don't know how to explain my condition to them. I've tried to get them to go to doctor visits with me so a neurologist could explain it but… read more