No, I have sat with my phone a small version of a computer lets say, but I do take breaks and such, and sometimes I don't even spend a lot of time on it and will take a nap, but not a prob with, my… read more
I get tired, frustrated, depressed...does it eventually go away? The exhaustion is the worst..
I think there are a few, but quit trying to figure out which one (s) and accepted my condition and don't let them get to me.
I'm doing decent thanks. Had 4 seizures and a few near blackouts this week but a LOT of stress. Will be seeing the neuro soon! Thank you.
I cut back on meds because I couldn't even function I was so exhausted and depressed and used to being very active. Now I'm supposed to go on Lamictal and dread more side effects. The neurology team I'm on will be discussing me this week and because nothing has worked so far on my seizures, they're leaning more on surgery but I'm not. The only thing is I found out in the hospital that I'm having them at night which I had no idea about and scares me as I have no idea how I'll know if I'm ever… read more
As you know by now we who suffer are made lab rats for the drug industry
Don't get me wrong there are both good and bad medications that work in different ways for each person
Myself over the… read more
Hey guys, does anyone who is on this medicine notice xcopri helps with anxiety too? I was on epidiolex and vimpat before i got pregnant. I recently gave birth and now i am still on vimpat but completely off of epidiolex because they want to see how xcopri works for me. Now i notice i have bad anxiety everyday, and that is one of the triggers for seizures. I am trying my best to stay calm and hoping that when i get to a higher dose of xcopri that’ll help with anxiety too. Main dose is 200mg , i… read more
It’s rough, going from 15mg to 200. I just got to the 200mg and have terrible dreams and night sweating. You’ll be exhausted and have midday crashes, I’m on LT disability. You get brain fog prior to… read more
For over a week now I have been struggling with vertigo (dizziness, shaking, nausea, nystagmus), severe joint pain, headaches, exhaustion. Has anyone else had this and how long did it last? I was hospitalized for 4 days and I am feeling miserable enough that I would almost welcome another hospitalization... and I HATE hospitals, like most of us, I'm sure. The pain in my joints (every joint, seriously) is so severe I cannot lift my arms, bend my wrists (to a certain extent), bend at the knees… read more
Some mornings I wake up with what I call hang over headaches. About 10 or 11 it's gone.
My nuero is supposed to be one of the best in the country however when I've mentioned nocturnal seizures which Im pretty sure I've had he dismisses it as there is no hard evidence. He also dismisses my migraines and exhaustion and dizzyness and is now dismissing the fact the nurse I saw thinks it is hormone related. He won't even bring forward my appointment. Is this normal of neurologists? I only got diagnosed a yr and a half ago so I don't know if this is typical of them after starting u on… read more
My Epileptologist sent me to memory clinic. She spoke to me and stated you are having sz in front of me. She said you need 72 hr telemetry at home and mri. The eeg saw a flurry of sz first
Day and… read more
Since my last seizure, I find my attention span is much shorter, especially when reading. Anyone else experience this?
Thanks, Kathryn13.