Where to go from here?

[Loopy Lou]

My nurse rang to speak to me this morning and asked how i was feeling since cutting down on the Vimpat. Apparently i'm still supposed to be on 100mg a day (down from 200mg), but i've stopped it as of monday just gone. I told her that i'm definitely feeling better since cutting down, i just can't wait to get off it completely.

She said that she doesn't know where things are going to go next or what they're going to do with me. I had bad reactions to both Lamictal and Vimpat, and Keppra gives me some side effects, but i can live with them. Currently i'm on 3000mg keppra a day and i was told that the dose can't be put any higher. It works fairly well for tonic clonics but not really for partials.

Surely they're not going to give up on me already? To be honest, i'm not even sure i want to try another medication. They scare me and make me feel like i'm not myself. I'd rather keep the partial seizures, they seem like the lesser of two evils.

I explained to the nurse about how i'm still having loads of partials, but some of them i'm not even sure if they are seizures or if i'm looking into stuff too much. I have a neuro appointment on 4th may, so between now and then i'm going to write down strange stuff that happens and how long it lasts for so i can ask the neurologists opinion on whether or not they sound like seizures to him.

After a diagnosis it can be really hard to get extra tests on the NHS to find out if i'm still having seizures ie to get another eeg for example. They're not used to check if the treatment is working, or at least this is what i heard.

I feel very confused and not sure what's going to happen next. What has happened to other people when their neuro says they don't know what to try next?

 

[Cint]

They may push for brain surgery if you're having more seizures and you've tried several meds, to no avail. That's what happened for me. I'd say don't go there. It works for most, not all. I'm one that it didn't work for, and you won't know for 2 years. Or they may suggest the VNS.

Currently I'm also on 3000 mgs. of Keppra and 250 mgs. Topomax along with the VNS. I don't have TC's now, but an occasional CP. Now they put me in the refractory category, nothing works, nothing else to try. I've tried most of the meds, too.

 

[Loopy Lou]

I thought surgery was considered as a last resort? I was only diagnosed about 3 years ago, and Vimpat was my 3rd med.

Also, my MRI showed no lesions or scar tissue etc, so i don't think anything like surgery would be an option. I was diagnosed through activity on my hour-long EEG.

I have TCs pretty rarely now, and usually in my sleep. Partials, sometimes there is the odd day where i don't have any, but mostly i could have rather a lot in one day or in quick succession.

I'm not sure what to do now.... onder:

 

[Nakamova]

I would sit tight for a bit Lou, just to get a handle on how you feel being [relatively] stable on one med. If it seems like things start to change one way or another, then get in touch with your doc and ask about other meds. I can't remember which ones you've crossed off already, but there are probably still a few to try (what fun!).

 

[Loopy Lou]

Are there other medications which can be taken along with Keppra to reduce partials?

The problem is that i could live with the smaller seizures, even if they do happen very often, but this would mean that i'd never be able to get my driving license and it will carry on having an effect on my work.

 

[Loopy Lou]

And yeah, i think for now i should stick with just the Keppra, at least until i see the neurologist next month.