Nope. My local group disbanded about 10 years ago. However, a new local one is getting made, there are only a handful of people on the Facebook, and they are looking for a place to meet up. Early days… No idea if there were any active since I last attended one (18 years ago?).

I have also just used a screenshot of it as a record of my seizures, and the time that passed.

Epilepsy journal. It keeps a record of everything, including seizures type, length, triggers, activity etc. it also creates a record of how many you have had over a period of time

Stress, high temperatures, fatigue, and some smells (particularly lavender & some burning smells). I remember somebody abruptly disputing lavender, saying that "lavender does not cause 'your' seizures, lavender is very calming"... I guess that she needed some herself 😅

On that note, could trying to be active, while still being on a higher dosage be the thing that caused the switch to flip? I will need to wait and see…

There was a notable change today with the recovery, and how I felt afterwards, since the Cenobamate was decreased. I feel a lot more shaken than had before this, and the headaches have came back. It is strange, but I feel worth it, if it makes me feel more ‘able’ the rest of the time

I would like it if it is reduced to a past dosage (currently at 150mg pm) and not taken off it. I have been at this since the end of March, so I have given it a fair chance, and know what my limit is. My mum made me make a voice recording, just after I came aware, which I may send to the specialist?

Im not sure if the lack of energy is also something contributing to the seizures? The recovery is so much more comfortable on them. Being able to type this clearly within a day without throbbing head pain and multiple drafts would have been impossible, but is it worth it if I am can’t do anything?

Max Ketchum!

Love that face 🤣 so innocent, but trying to be serious 🥹

'Ruff'

I have been on many #epilepsy meds over the years, and had some side effects I could get used to, others I couldn’t. I want to power on at this dosage, which is relatively low to what others tolerate and see how I cope. If I can, I don’t think I want it to go up any time soon.

Seizure are roughly once a month, so it is like ‘reducing’ excruciating mental pain, coordination and disorientation issues for 1/4 of the year, in exchange for being completely drained for 3/4. I used to play badminton and go jogging regularly, but I don’t think I could do it.