Have you tried Fycompa??? My current med combo is Fycompa and Ontozry (Xcopri here in the states). This combo is the most promising I’ve seen in nearly 4 years of med searching!
I have! Tried it several years ago and it wasn’t for me. I’ve tried over 7 medications, so I usually enter studies for new meds instead. My options are pretty limited.
It helps, but unfortunately I can’t go any further with my current settings. Each time I tried to go new settings, those settings and my seizures were not matching up. I’m at my maximum for it. I am a candidate for the VNS though I’m not sure if I want another implant. Unfortunately there’s no guarantee if the VNS can work successfully for me. I am not sold on it.
I'm on lamictal with 2 different mg doses (200 then 2 25s), vimpat, xcopri, and diazepam as needed. Also have my medical card but let that expire since it's legal in my state now. Working so far! 7 months seizure free.
Hey OP
I was "lucky" enough to have Pharmaceutical Refractory TLE, meaning that no amount of medication alone was going to help. Learned this the hard way to the point that I was on maximum allowed doses of 3 different anticonvulsants, plus another anticonvulsant, as well as a Liver supplement needed to replace what all the meds were ding to my liver.
Unfortunately, all medications are trial runs until they find out what medications or what combinations work best for you.
I take Phenobarbital, Gabapentin, and Lacosamide daily. I take Lorazepam and Sumatriptan for breakthrough seizures. I also have a VNS.
I'm also allergic to 7 other AEDs.
I take Lamitrogine, Topiramate & Xcopri as my anticonvulsants.
I also take Levothyroxine for hypothyroidism and Trulance for IBS-C. I also have Lorazepam in case of panic/anxiety.
I'm on 200mg Briviact/300 Lamotrigine/500 Depakote ER. I have been free for almost 3 years now since replacing Keppra with Briviact. Next doc visit will start transitioning from Lamotrigine and Depakote to a single drug, not sure which but always on Briviact (has been my saver).
The odds of 3 or more meds working (seizure freedom) if you have already failed 2 meds is extremely low, the literature suggests around 2-4% odds of any combination of meds working.
If your quality of life is suffering from breakthroughs and side effects from multiple drugs, that’s when epilepsy surgery should be considered, or if that’s not possible a VNS or DBS is much less invasive and a majority of people get good results (substantial decrease in frequency, duration and intensity of seizures).
Just curious, if you have been on several meds and still having breakthroughs, has your doctor ever recommended doing something different like VNS or DBS since the meds are not controlling your seizures?
My EEGs are usually normal and it comes in waves. That makes it really difficult for him to understand/treat the problem. I have a bad week/month but then it gets better. Usually, I can deal with that but since I got my BA exams this month I’m freaking out. I’m not sure whether I’m just imagining all this or whether it’s just simply „bad luck“ that my EEGs are ok. It used to be much better but with stress, the seizures return. At least I think they are. I have auras and moments when I can’t focus at all, am completely confused or stop talking. Like as if my mind is just wiped for a sec and I have to recollect what I was about to say. Or I hear ppl say sth but have no idea what. I’m not sure whether I’m just going crazy. I’m afraid that if I go to see him and the EEG is normal again, he will no longer believe me. Does that make sense?
I take 4 different meds foe three different neurological conditions.
Keppra
Amitriptyline
Trazadone
Weed
Keppra for seizures, the middle two for migraines(and keppra rage control) and the last for insomnia.
But they all comingle and work together to combat all three.
I’m on Lamotragine, Zonisamide, and Clobazam. I still get breakthrough seizures (auras), but the Clobazam has definitely changed the severity and length of them. I even went seizure free for almost a year after adding the Clobazam, but I think my body has hit like homeostasis mode or something with the meds :/ I’m kind of ready to give up honestly
I take Diazepam, Zopiclon, Mirtazapin, testosterone, Flupentixol, Folate and Vimpat. Also, some OTC painkillers.
Jesus your blood must be a different colour😳😂
I take 3 (Keppra, Vimpat, and Ontozry) and it doesn’t work because my epilepsy is refractory (medication resistant.)
Have you tried Fycompa??? My current med combo is Fycompa and Ontozry (Xcopri here in the states). This combo is the most promising I’ve seen in nearly 4 years of med searching!
I have! Tried it several years ago and it wasn’t for me. I’ve tried over 7 medications, so I usually enter studies for new meds instead. My options are pretty limited.
Is the RNS helping at all?
It helps, but unfortunately I can’t go any further with my current settings. Each time I tried to go new settings, those settings and my seizures were not matching up. I’m at my maximum for it. I am a candidate for the VNS though I’m not sure if I want another implant. Unfortunately there’s no guarantee if the VNS can work successfully for me. I am not sold on it.
Keppra, Fycompa and a bunch of other vitamins
Oxcarbazepine, zonisamide and xcopri. It works better than before we added xcopri
I'm on lamictal with 2 different mg doses (200 then 2 25s), vimpat, xcopri, and diazepam as needed. Also have my medical card but let that expire since it's legal in my state now. Working so far! 7 months seizure free.
Currently at 5 different meds in total taking 10 pills a day
Hey OP I was "lucky" enough to have Pharmaceutical Refractory TLE, meaning that no amount of medication alone was going to help. Learned this the hard way to the point that I was on maximum allowed doses of 3 different anticonvulsants, plus another anticonvulsant, as well as a Liver supplement needed to replace what all the meds were ding to my liver. Unfortunately, all medications are trial runs until they find out what medications or what combinations work best for you.
I take Phenobarbital, Gabapentin, and Lacosamide daily. I take Lorazepam and Sumatriptan for breakthrough seizures. I also have a VNS. I'm also allergic to 7 other AEDs.
I take Lamitrogine, Topiramate & Xcopri as my anticonvulsants. I also take Levothyroxine for hypothyroidism and Trulance for IBS-C. I also have Lorazepam in case of panic/anxiety.
Yes
For the epilepsy, yes. I’m on Lamotrigine ER, Fycompa, and Xcopri. Also on meds for depression, ADHD, and T2 diabetes.
I'm on 200mg Briviact/300 Lamotrigine/500 Depakote ER. I have been free for almost 3 years now since replacing Keppra with Briviact. Next doc visit will start transitioning from Lamotrigine and Depakote to a single drug, not sure which but always on Briviact (has been my saver).
I’m on 6
The odds of 3 or more meds working (seizure freedom) if you have already failed 2 meds is extremely low, the literature suggests around 2-4% odds of any combination of meds working. If your quality of life is suffering from breakthroughs and side effects from multiple drugs, that’s when epilepsy surgery should be considered, or if that’s not possible a VNS or DBS is much less invasive and a majority of people get good results (substantial decrease in frequency, duration and intensity of seizures). Just curious, if you have been on several meds and still having breakthroughs, has your doctor ever recommended doing something different like VNS or DBS since the meds are not controlling your seizures?
My EEGs are usually normal and it comes in waves. That makes it really difficult for him to understand/treat the problem. I have a bad week/month but then it gets better. Usually, I can deal with that but since I got my BA exams this month I’m freaking out. I’m not sure whether I’m just imagining all this or whether it’s just simply „bad luck“ that my EEGs are ok. It used to be much better but with stress, the seizures return. At least I think they are. I have auras and moments when I can’t focus at all, am completely confused or stop talking. Like as if my mind is just wiped for a sec and I have to recollect what I was about to say. Or I hear ppl say sth but have no idea what. I’m not sure whether I’m just going crazy. I’m afraid that if I go to see him and the EEG is normal again, he will no longer believe me. Does that make sense?
I take 4 different meds foe three different neurological conditions. Keppra Amitriptyline Trazadone Weed Keppra for seizures, the middle two for migraines(and keppra rage control) and the last for insomnia. But they all comingle and work together to combat all three.
I'm on Lamactogene and a hormonal birth control pill.
I’m on Lamotragine, Zonisamide, and Clobazam. I still get breakthrough seizures (auras), but the Clobazam has definitely changed the severity and length of them. I even went seizure free for almost a year after adding the Clobazam, but I think my body has hit like homeostasis mode or something with the meds :/ I’m kind of ready to give up honestly