Fycompa

[masterjen]

Just curious if anyone else out there besides Belinda and me are taking Fycompa.

(Belinda - I hope you don't mind me mentioning you here, but I know you've said on the forums before that you were taking this so I took a chance).

 

[masterjen]

No one?? Although I am very aware everyone reacts differently to medication, I was hoping to find someone to compare notes with in terms of side effects and when they have found is the best time to take it.

 

[Nakamova]

For whatever reason, there's not a lot of chatter out there (on the internet at large) about Fycompa/Perampanel. Maybe because it's still relatively new?

 

[Belinda5000]

I will not let my neuro go up on the Fycompa because of the fatigue and I'm already taken 4MG and I'm always tired.:twocents:

 

[masterjen]

You're right that it is quite new. I was initially reluctant to try it because of that but when I was told it works in an entirely different way to other currently available medications by acting on the AMPA receptors in the brain (also involved in seizure activity) I was willing to give it a try.

 

[masterjen]

I will not let my neuro go up on the Fycompa because of the fatigue and I'm already taken 4MG and I'm always tired.:twocents:

The fatigue might be the combined influence of all the medications you are on, Belinda. I think this is the case for me. I am at 8 mg but reluctant to go lower because of the benefit it is offering me. The fatigue can be very strong at times and hits me late morning or late afternoon, but to be honest the fatigue seems far worse on days I am not working: I think for me it is the "keep the mind and body busy at having to do something" and I won't feel as tired. When I am not working I have come up with a way to help combat the fatigue and keep a clean home at the same time: when I am feeling the sleepiness I pick an area of my place to clean that will keep me busy for 15-20 min. The process of being mildly active and having another part of my apartment clean ends up making me more alert and motivated to continue on with my day nap-free

 

[AlohaBird]

You're right that it is quite new. I was initially reluctant to try it because of that but when I was told it works in an entirely different way to other currently available medications by acting on the AMPA receptors in the brain (also involved in seizure activity) I was willing to give it a try.

Interesting. Your seizures are nocturnal too IIRC, right? Did your doc say anything about this med being particularly effective fro this type of seizures?

 

[masterjen]

I don't know of a medication that is specifically for nocturnal seizures. It's just that I've tried medication that works on calcium channels, ones that work on potassium channels, ones that affect GABA, ones that decrease the excitatory response of firing neurons and ones that enhance the inhibitory response of firing neurons in an effort to find something that works. So when this new one was approved my neurologist and I decided that it was worth a shot. I still have "flare ups" of seizures over 1-2 nights, but I typically have stretches of 7-9 night with no seizures and for me this is very good improvement. Seizure after-effects are usually also less pronounced the following day (ie. I am more able to sleep off the after-effects when I fall back asleep after the seizure rather than have them hang around all day).

 

[Belinda5000]

Just curious if anyone else out there besides Belinda and me are taking Fycompa.

(Belinda - I hope you don't mind me mentioning you here, but I know you've said on the forums before that you were taking this so I took a chance).

masterjen- I don't mind you mentioning that I take Fycompa

 

[Nakamova]

You might be interested in the general report on Fycompa found here: http://www.neurologyreport.com/AES2014/bell.php There's a lot of verbiage, but it mentioned a few retrospective studies since the medication's release. One study found that there were significant differences in how people of different races responded to the med, both in dosage tolerance and in side effects. The report concludes:

CONCLUSION
These studies provide robust data on the differential efficacy and side effects of perampanel and clarify answers to several unanswered clinical questions regarding its use. Specifically, perampanel appears to be effective in controlling generalized seizures in patients with primary generalized epilepsy, as well as those with refractory partial-onset seizures; higher daily doses (8 and 12 mg) of perampanel may be more effective in Asian/Pacific Islanders than in Caucasians; the median seizure frequency reduction rate is 15%–20% for higher perampanel doses after adjusting for placebo; and perampanel therapy can improve patient quality of life as it decreases seizure frequency.

Data on the adverse effects of this relatively new AED further our understanding of these effects. They suggest that psychiatric side effects may be more common among patients with psychiatric histories; aggression and irritability can be mollified by slowing the rate of dosage uptitration; and concurrent treatment with levetiracetam and perampanel slightly increases the risk of aggression compared with perampanel therapy alone. Additionally, perampanel therapy does not appear to have short-term, clinically appreciable side effects on the growth, development, and cognitive function of adolescents. It does not seem to alter renal laboratory parameters or cause withdrawal symptoms when it is abruptly discontinued. Renal side effects are virtually absent, although abnormally frequent urination has been reported in < 1% of patients taking it. Lastly, Caucasian patients are more likely to experience nausea, ataxia, lethargy, irritability, and aggression than the other studied racial or ethnic groups.

 

[masterjen]

Thanks for the link, Nakamova. The fact that some races would need higher doses than Caucasians and that Caucasians are more likely to experience certain side effects is really interesting.
The numbers presented that talk about "slightly greater" increase in anger/hostility/irritability, etc. when taking Fycompa and levetiracetam together are lower than I would have expected, which is a good thing since so many people are on levetiracetam. I think at 8 mg of Fycompa I am perhaps a little more prone to being frustrated or irritated, but it is by no means all the time. The article stated that dose increases should be gradual to avoid/minimize side effects, and with that mind I made the took at least twice as long as the typical dosage increase protocol for this medication and this may have made all the difference.
The worst side effects for me are worsened ataxia (which is being monitored) and intermittent sleepiness. I find it interesting that ataxia from this medication affects Caucasions more than some other races.

 

[Belinda5000]

The fatigue might be the combined influence of all the medications you are on, Belinda. I think this is the case for me. I am at 8 mg but reluctant to go lower because of the benefit it is offering me. The fatigue can be very strong at times and hits me late morning or late afternoon, but to be honest the fatigue seems far worse on days I am not working: I think for me it is the "keep the mind and body busy at having to do something" and I won't feel as tired. When I am not working I have come up with a way to help combat the fatigue and keep a clean home at the same time: when I am feeling the sleepiness I pick an area of my place to clean that will keep me busy for 15-20 min. The process of being mildly active and having another part of my apartment clean ends up making me more alert and motivated to continue on with my day nap-free

I've been taking epilepsy meds all my life and I know when I'm getting side effects from a med, Since the increase in Fycompa I have gotten more fatigue. I'm a pro at taking AEDs.
I have come down in MG on other drugs so only the FYcompa is left .I'm not an idiot.