Help, AED making me ill

[CantGetoutOfthisplace]

Hi, I take Lamotrigine which I have been on for a long time; this has been amazing and I have tolerated it well. However, it didn't quite give me seizure control. I was put on a second medication a few months ago called Brivaracetam. Since starting this, I have been suffering from extreme anxiety, agitation and depression. I actually feel worse now than I did through a bereavement. I haven't suffered from depression in my life. I have spoken the to speciality nurse who is dismissing my side effects, saying they aren't common, despite it saying everywhere, and the consultant telling me to look out for them. She has basically told me there is probably another cause and to go to the gp.
Is this acceptable? I feel better as the drug starts for wear off, and then when I take it and the level goes up again, I feel ill.
Where do I go from here?

Can you request a medication review with the consultant or leave a message with the consultant's secretary? That's what I was told to do if any big issues when starting lamotrigine alongside another medication (although mine is not for seizures), so bypassing my nurse basically. The GP will just boot you back to the specialists because the medication is very likely the cause and would surely need to be eliminated before other causes were investigated?

You do need to go back and get your meds reviewed.

I sympathise enormously with you. I take a raft of heart meds which make me feel utterly crap, but I know they are part of what is keeping me alive. Where does the balance lie between being glad of the positive effects, but being unable to have a decent quality of life because of the bad effects? I am struggling with this.

But the fact that it is making you anxious, agitated and depressed is not good. These impinge very fundamentally on you quality of life. It is not good enough for the nurse to dismiss your problems - just because a side effect might be rare does not mean it is not happening to you. Maybe go to your GP and outline the situation, including the nurse's approach. It is bad enough to have seizures without adding in these other problems. I hope very much that you can find a solution.

Thank you both, I think they need to remember that this is people's lives, and their decisions have a huge effect on them. I know my own body, and I am not making it up as the nurse made me feel like it cannot possibly be this drug (it is a controlled substance). I am on the max dose allowed, as apparently it can cause euphoria after that so they stop at 100mg bd), I bloody could use some euphoria right now! 🤣

They didn't listen, talked over me, and dismissed what I was telling them. The GP is lovely, but knows nothing about epilepsy and the meds, and definitely would pass me back. The nurse made a couple of mistakes that I had to correct, or it would have put me at risk. At this point I have lost faith, I am so frustrated which isn't helped by this side effect which is agitating me even further. I honestly do not recognise myself after beginning this drug.

The consultant started me on a plan quite afew months back to start this new med, left me with it, didn't even book in for a follow up or review. I had to book in myself with the nurse due to not feeling well. The consultant will just pass me back to them, nobody exwn informed me from now on they are dealing with it, and he just signs it off. The consultant is a specialist in MS, and not epilepsy as well.

I am so sorry this is happening to you @Mischance It is so much worse for you because you have to be on those to survive. God I cannot imagine. 💐
This is exactly it, they replace one thing with the other, and then you need to decide what the lesser of the two evils are. In my case there are other drugs to try, they kiss can't be bothered to change it I think. I have only been on the 2.

Sorry that should say "just", this bloody med, I am off the planet.