permanent aura

[car67]

Hi

Does anyone have a permanent aura? I had Covid 2 weeks ago ( for the third time) and I am vaccinated, but since I had third time Covid I have been having 2 to 3 seizures daily and have this permanent sweet aura like taste in my mouth! I have spoken to my neurologist and they are going to do another medication change but was just wondering if anyone else has had this experience? Any advice would be great

ps.is anyone on Cenobamate? Brand name Xcopri. And if so how is it going?

Thank you

[Jamaicangirl]

it is totally covid. What you described is common. Don’t let anyone come near you without a mask. The vaccine keeps us from dying but we can still get covid and side effects.

I am just now getting rid of vertigo after covid in January. It was weird because it while lying on my bed.

I made sure to get that new booster a few days ago. I don’t have enough but brain left to lose more to that virus

[car67 in reply to Jamaicangirl]

hi thank you so much for your reply, yes this third time Covid hit me very hard , really suffered with it. I do everything to safe guard my self but manage to get it!

[Jazzy-fay]

Hey, i am on xcopri. How is it going for you? How long have you been on it?? What dosage are you on?

[car67]

Hi Jayo22

I’m not doing well on them tbh, Im just titrating and am currently in 25 mg, started at 12.5 for two weeks , then 25 for two weeks, and I go up to 75mg tomorrow for the next two weeks and then .100. My vimpat has been decreased by 50 mg and I am also on Briviact.

Unfortunately I have had more seizures since I been on it, side effects not good and severe constipation.

I’m sticking with it as desperately need seizures to be maintained or and controlled. How’s it going for you? Naturally everyone’s different and will have different side effects, I know someone who is on these too and they are quiet positive. So fingers crossed.

[Jazzy-fay in reply to car67]

I have been on it longer, it is helping but still having seizures. I don't recall having so many side effects, sorry to hear that about you. My worst side effect is TIREDNESS. A lot of the time i feel like sleeping at 8 in the evening 😑 What seizures do you have??

[Jazzy-fay]

If you are wondering the different name, the first one I picked i would never remember so I changed to a more simple 👍

[car67 in reply to Jazzy-fay]

hi Jazzy -Fay

Thank you for getting back to me, yes tiredness is unreal! I have focal impaired and bilateral generalised seizures. How about you?

[Jazzy-fay in reply to car67]

We still have to battle through Car67,

I have focal aware, focal with impaired awareness, nocturnal. My seizures are bilateral too. What age did you get epilepsy since?

[car67 in reply to Jazzy-fay]

40 as a result of a cavernous on my left temporal lobe!

[Jazzy-fay in reply to car67]

It's not something I was familiar with so I just searched it. You have been through a tough time, mine was as a result of cancer

[car67 in reply to Jazzy-fay]

I. Sorry to hear about yours is as a result of cancer. How are you now?

[Jazzy-fay in reply to car67]

The cancer is totally gone but with regards the Epilepsy The xcopri has helped things a bit probably but my other meds have been up and down etc etc so I am soon going to be getting a VNS installed. It's just one thing after the other.

[car67 in reply to Jazzy-fay]

I’m Pleased your cancer has gone u must have been really strong to have gone through that. So true it really is one thing after another, never ending!