Add on medication

[car67]

Hi all

Was wondering if you could help plz? My neurologist has recently added on perampanel at 2mg to start for 4 weeks then a gradual increase to 4mg to take in the evening. I have done some researching etc but the majority of people who have taken this speak about how badly it affected their mood and how it changed their personality for the worse!

I do suffer from mood disturbances so I am very nervous about trying it but I need an add on as my seizures are not good at all.

Anyone been on this med?

Has anyones seizure activity worsen since they have had their booster, or have had covid or both? It appears my seizure activity has become so active recently but it only seems it worsened since I had the booster then a few weeks later Covid.

I can’t think of any other reason as to why it has become worse I such a short space of time, but I know I haven’t had this many seizures in such a long time.

Thank you

[G1na]

Hi,

I have never heard of the medication your neurologist is trying to put you on, so unfortunately I can’t share anything around that. In my own experience when I’m put on level III medications i make sure to talk to my neurologist about my concerns around that. I ask them if it affects me if we can go back to my old cocktail. I never start a medication without knowing if I can easily go back to my old cocktail.

I did start having more seizures after getting COVID. I did not get the shot because I am afraid that it will worsen the epilepsy. Before COVID I was only having seizures once to twice a month. After COVID, I’ve been having them almost daily. I have petit-mal seizures. I hope this helps!

Gina

[car67 in reply to G1na]

Thank you Gina for your response , yes I have spoken to my neurologist in depth about the perampanel but they seemed to think it should be ok, I can but try it. My seizures definitely increased since I have had Covid. It’s really getting me down, I am so washed from them and feel so drained. I have noticed that I am so emotional and cry at the drop of a hat, hopefully I will start to feel better soon. 🙂the sooner the better.

[G1na in reply to car67]

I’m sorry you’re going through this. I know it’s hard trying to balance your life along with life expectations. I’m 31 and have had epilepsy since I was 15. In all those years I’ve been put on drugs that neurologists told me was okay, but sometimes I had a gut feeling they weren’t. The time I accepted to be on a level III drug (Fycompa) there was negligence from the neurologists. I had horrible side effects and I feel like they forced me to be on it for three months. I tried calling them, emailing, and going in person so that they can help me wean off Fycompa. They continued to say it was all going to be okay etc. in the end they put me back on my old cocktail, but those medications messed up my digestive system. Due to that experience I do not trust neurologists, and I refuse to change medications. What helped me control the seizures a ton was practicing yoga daily, and going to the gym. I quit going to the gym because I am not vaccinated and don’t feel it’s safe for me to be there.

Don’t be hard on yourself, It’s hard not to be emotional when just living everyday is hard. Having epilepsy is a tough battle that unfortunately many still don’t understand. I hope you start to feel better soon also 😊

[car67 in reply to G1na]

Thank you Gina it’s lovely to speak to someone who understands. that’s the one they putting me on Fycompo, Fycompa is the brand name for perampanel. I too have been on so many and have refractory epilepsy, even though I have spoken to them about my concerns on this med they said it will be ok! I have reviewed it and the reviews are not good , I had bad reaction mentally to zonisamide and the reviews and side effects I have read and had sound very similar. I too have said this to the neurologist but they said I should be fine.Last time I ended up in hospital being weaned of zonisamide and it wasn’t very pleasant. Currently I’m on brivact and vimpat, but I think I have become immune to them as before covid and vaccines my seizure activity had worsened but more so now, they decided to add on fycompa to help! Then I feel like I am being a nuisance constantly contacting them when my meds don’t work, it couldn’t have come at a worse time as work so stressful and so many changes at work too.

Gosh I feel like everything’s a mess!!

I’m so sad to hear about your experience too, 15 is a very young age to have got epilepsy right at time when your life begins to be enjoyable socially etc. I too do yoga and lots of walking with my husband but I’m just too exhausted at the moment to do anything , I can barely hold down my job.

[G1na in reply to car67]

What I’ve learned over the years is that we know our bodies best. Doctors should work with us, to help better treat us. Many doctors do not like me because I do not always agree with what they want for me. They also like to use micro aggressions like “you’re very smart for having epilepsy,” “if you continue to have seizures you will not be as bright,” so that I can agree with their treatments. I’m sorry you’re going through this. Continue standing up for yourself and ask what other options they have. We all have different reactions to medications so what didn’t work for one, may work for the other, but it seems like many have the same side effects with Fycompa. I also tried very hard to talk my neurologist into having me try something different, but he finally talked me into taking it when I graduated college. It helped control the seizures 100% but mentally I was a mess. I cried non stop all day everyday. The neurologists didn’t think this was important because the seizures were controlled. Since being taken off of it, I’ve had many digestive problems that have only worsened.

Stress plays a big role in triggering seizures for me, but it’s hard not to stress when trying to hold your life together seems impossible. I can imagine how difficult it is trying to hold down your job. That is something that I forgot to mention, I was able to be more active because I was not working at the time. This allowed me to be able to fully and wholeheartedly take care of myself.

[car67]

Thank you so much for your reply , my only answer to your message is ditto, been there got the t shirt etc etc, I picked up my fycompa , as much as I am desperate to try this I am also scared , so I haven’t taken tonight , tomorrow another day!!!