Another update for those interested:
As a quick review, Fycompa is a once per day (taken at night) medication. One starts at 2 mg for 2 weeks, then increases by 2 mg every 2 weeks until 6-12 mg is reached. Seizure improvement, if this is the right medication for an individual, can start to appear at 6 mg.
I had no side effects (or benefit) at 2 mg. At 4 mg I was noticing imbalance and fatigue as soon as 20-30 min after taking it, and therefore found it necessary to take it and get into bed fairly soon after. Some fatigue and leg weakness were noticeable even during the day. A couple of times it seemed the myoclonics were worse and I was concerned it was the medication, but then they stopped again.
I have just finished 2 weeks at 6 mg. The side effects at night were stronger (imbalance, feeling "buzzed" and sleepy), and my legs would feel clumsy during the day at first until dinner but finally in the past 4 days I've noticed improvement in the side effect of leg weakness and/or ataxia by 2-3 pm.
As for seizure improvement: daytime mini-partial seizures are close to 100% gone (I would get them 1-2 times per day 5/7 days of the week), the nocturnal tonic seizures seem weaker as I am less prone to having a headache, weakness and fatigue the morning following one and it would seem the tonics are predominantly lower body when they do happen rather than full-body.
Because of the effects on my legs (ataxia is a recognized side effect of Fycompa), I've asked to stay at 6 mg another 2 weeks or so before increasing to 8 mg, and my doctor agreed esp. as there are signs that this side effect is improving. It is important for those reading this to note that I have issues with my legs at the best of times (ataxia, mild dystonia) due to the neurological condition that also causes seizures for me, so it is quite possible that those who do not have pre-existing physical issues with their legs would even notice this side effect as much as I do.
Fycompa has irritability as a side effect (low percentage, though, and more common in teens and 20s). I have only noticed irritability this past week but I cannot rightfully start to blame the medication since it is "that" infamous time of the month when I might be a little short-tempered anyway lol.
Weight gain is also listed as a possible side effect, but again a low percentage. I have gained a couple of pounds which admittedly isn't bad, but bothers me none the less. It certainly has not been due to increased appetite and I am a very careful eater. I wonder if this medication might change metabolism somehow: of a particular food group, or metabolism in general. If anyone has insight into this (for example because of other medications known to possibly increase weight) I would appreciate knowing!
As a quick review, Fycompa is a once per day (taken at night) medication. One starts at 2 mg for 2 weeks, then increases by 2 mg every 2 weeks until 6-12 mg is reached. Seizure improvement, if this is the right medication for an individual, can start to appear at 6 mg.
I had no side effects (or benefit) at 2 mg. At 4 mg I was noticing imbalance and fatigue as soon as 20-30 min after taking it, and therefore found it necessary to take it and get into bed fairly soon after. Some fatigue and leg weakness were noticeable even during the day. A couple of times it seemed the myoclonics were worse and I was concerned it was the medication, but then they stopped again.
I have just finished 2 weeks at 6 mg. The side effects at night were stronger (imbalance, feeling "buzzed" and sleepy), and my legs would feel clumsy during the day at first until dinner but finally in the past 4 days I've noticed improvement in the side effect of leg weakness and/or ataxia by 2-3 pm.
As for seizure improvement: daytime mini-partial seizures are close to 100% gone (I would get them 1-2 times per day 5/7 days of the week), the nocturnal tonic seizures seem weaker as I am less prone to having a headache, weakness and fatigue the morning following one and it would seem the tonics are predominantly lower body when they do happen rather than full-body.
Because of the effects on my legs (ataxia is a recognized side effect of Fycompa), I've asked to stay at 6 mg another 2 weeks or so before increasing to 8 mg, and my doctor agreed esp. as there are signs that this side effect is improving. It is important for those reading this to note that I have issues with my legs at the best of times (ataxia, mild dystonia) due to the neurological condition that also causes seizures for me, so it is quite possible that those who do not have pre-existing physical issues with their legs would even notice this side effect as much as I do.
Fycompa has irritability as a side effect (low percentage, though, and more common in teens and 20s). I have only noticed irritability this past week but I cannot rightfully start to blame the medication since it is "that" infamous time of the month when I might be a little short-tempered anyway lol.
Weight gain is also listed as a possible side effect, but again a low percentage. I have gained a couple of pounds which admittedly isn't bad, but bothers me none the less. It certainly has not been due to increased appetite and I am a very careful eater. I wonder if this medication might change metabolism somehow: of a particular food group, or metabolism in general. If anyone has insight into this (for example because of other medications known to possibly increase weight) I would appreciate knowing!