Med changes are a go

[Loopy Lou]

I've been in contact with my epilepsy nurse over the last few days (finally!), and since the clobazam is actually having a good effect then they've decided that my other medication does need to be changed.

Since being on the clobazam, i've only had a few of the "spacey out" seizures that i would usually have multiple of in a day. My neuro wasn't sure that these were seizures but is now saying that they must be if the clobazam is helping with them. It's kind of like my head feels like it's expanding, and then when people talk to me, they could be talking a different language for all i understand.

Anyhoo, starting from tomorrow my topiramate is being reduced by 50mg every two weeks until it's gone, and then we're going to swap my keppra to brivaracetam. It's going to take quite a few months, and i'm going to remain on the clobazam.

Side effects wise, i've had some extra sleepiness and dizziness/vertigo, but i don't think it's severe enough to outweigh the benefits i've been seeing so far.

The epilepsy nurse is also sending out reports from the neuro and neuropsychologist to help with my disability appeal, usually we have to pay £25 for letters or reports, and she's getting them for me for free.

They're going to keep in contact with me during the medication changes to check on how i'm getting on.

She seemed surprised that i'm still in uni despite being advised to put it off for a year, but after getting this far, i don't want to put off getting my degree.

I really hope that this med change is the one that will work for me, i've been getting increasingly frustrated over the last couple of years.

 

[Nakamova]

That's great news Lou, it must be nice to feel the Clobazam helping.

 

[Loopy Lou]

It's not perfect by any stretch, but it's definitely helping more than the topamax did, and it's an improvement!

 

[Mdwall]

Best of luck to you with your med changes! My doc just added Carbamizapride after I experienced a seize while sleeping early Friday AM and so far all its done is give me headaches at the back of my head and a general feeling of bleakness. Though I'm not sure of whether that latter part is the medicine or my personal unease with having to go back down this road

 

[Freda]

That's a lovely positive post and good news about the Clobazam. It's great that you're still attending uni too - so determined to achieve your goal. Bravo! :clap:

 

[Loopy Lou]

Best of luck to you with your med changes! My doc just added Carbamizapride after I experienced a seize while sleeping early Friday AM and so far all its done is give me headaches at the back of my head and a general feeling of bleakness. Though I'm not sure of whether that latter part is the medicine or my personal unease with having to go back down this road

Thank you

Please keep a close watch on how you're feeling, and if the feeling of bleakness gets worse. Sometimes it can be difficult to distinguish whether it's the medication or just how you're feeling, but make sure to tell your neuro if it continues, or if it's really out of character for you. I had that on Vimpat and didn't even realise it was the medication, and it could have ended really badly. Take care, and i hope this medication works out for you

 

[Loopy Lou]

That's a lovely positive post and good news about the Clobazam. It's great that you're still attending uni too - so determined to achieve your goal. Bravo! :clap:

Ta! I am 31 now, so rather late to it after sort of being preoccupied the last 10 years or so, but i think it's just made me more determined! On my 4th year of study now, sooooo close!