Can anyone suggest any other medication besides Keppra for seizures?

Hi, my oldest son was on Keppra and was switched to lamotrigine (Lamictal) and it worked a lot better. My youngest was recently diagnosed 2 years ago roughly with a rare complex terminal epilepsy that is uncontrolled by AEDs. However, he was on Keppra and it didn't help him either and only made him extra irritable and angry like my oldest. They tried Briviact, oxcarbazepine (Trileptal), and topiramate (Topamax) which he had bad side affects to the Topamax. He is now on and it helps more than the others before control his seizures at least the Tonic Clonic seizures are better controlled for now plus he just had to have SEEG in January and then Right Temporal Lobectomy in April that has also helped the meds control those. He still has daily small focal seizures and occasional generalized convulsive seizures in his sleep still. He is currently on Oxtellar XR 1800mg/night dose , Vimpat 200mg/night dose, and the new one is Xcopri 150mg/night dose(must be 18 yrs or older only). My son just turned 18 in Septmeber so that is why we couldn't try it before recently. He has multiple types of seizures with first diagnosis but he has two diagnosis ~ 1.) Localization Related Focal Partial Idiopathic Epilepsy And Epileptic Syndromes With Seizures Of Localized Onset Intractable (sometimes with Status Epilepticus off and on), 2.) Epilepsy Seizure General Convulsive Intractable . He has epilepsy in all lobes but the main lobe that was the problem was the right temporal lobe. That is his story and journey so far so hopefully these different meds may work for you just look into them and their side effects and then talk to your doctor to see if any you are curious about would work for your epilepsy. I wish you the best of luck, as I know how hard it is and completely exhausting it is on a person to search for the right solution for your own body with all these different pharmaceuticals that sometimes have horrible side effects. Keep trying until you find the right solution for you! Good Luck !! 

Hi @imstrongbecauseitistheonlychoice, Good Morning
I can understand very well what you have been through as I have refractory temporal lobe epilepsy. Keep trying as you have said, even though sometimes all seems so dark.
Has the doctor of your son tried Epidiolex? I know some people in the US that could stop the seizures with this medicine based on CBD from medical cannabis? My perception though is that it is still not much prescribed in the US yet, unfortunately. I guess it has to do with the pharma lobby. My doctor treats me with CBD and I have been feeling much better with this medication than with AEDs I have tried such as Lamictal, Tegretol, Trileptal, Gabaneurin and Vimpat (I am very sensitive to medications since childhood). I am smiling again to life 🙂 :-). As I can not tolerate an adequate dosage of CBD I do also treat my epilepsy with a gluten-free diet and much hatha yoga to reduce my anxiety.
If I can be of any help, feel free to contact me either here in the group or privately.
All the best!
Santosha

Good morning, @santosha
He has not tried Epidolex yet but he is a regular marijuana smoker from a dispensary we visit for him and he gets the flower or cartridges(vapes) with the THC and CBD and CBN and they help more than his seizure meds especially when he is having a really bad day. I do want him to try just the Epidolex. I wish it was legal everywhere especially for medical purposes that seem to get relief with some form of or combo of CBD or THC. I definitely appreciate you offering any help or just a person to lend an ear and maybe have some suggestions, as I have been in search of an online or in person locally support group for my son s terminal
epilepsy and how hard it has affected me mentally and physically. I can only find ones for cancer not just a terminal illness or epilepsy period. I either want to match up with someone who goes through what I do as a mom of a very sick child or someone who has been in his shoes like you. I started this support online through Mayo once a sweet EEG Tech Cindy had helped my son and told me about this Mayo support website. Do you possibly know of any support groups that may meet on video online like what I am looking for or an Epilepsy one in general? All this is personally exhausting because I know I am grieving the loss of my son that will come sooner than later but he isn't even gone yet. I do okay most days but I am struggling and a support group would really be helpful for me as a mom and caregiver to my son especially to strengthen me to get through the really tough days.

Hi @imstrongbecauseitistheonlychoice
I can understand very well your struggles.
I have met a mother whose son has epilepsy and other health issues and could control his seizures with Epidiolex after trying many AEDs. It would be a pleasure to introduce you both and put you in contact, but right now I believe it is not a good moment for her (her mother has been diagnosed with cancer and started chemo). As far as I know, Epidiolex has been approved by the FDA. I can not say much about the usage of medical cannabis in the US, as I live abroad.
As to support groups, I know that the Epilepsy Foundation offers in-person and also online support groups. I am part of two support groups, one in Washington and the other one in New York. We meet once a month online, but those groups also offer in-person meetings.
The NY Epilepsy Support Network: info@email.meetup.com; https://www.meetup.com/NY-Epilepsy-Support/events/293348696/
The Washington DC Metro Epilepsy
https://www.meetup.com/pt-BR/washington-dc-metro-epilepsy-meetup/
Kind regards,
Santosha

Hi @ santosha

I unfortunately understand what that lady is going through on her mom having cancer and treatment because I lost my mom when she was 40 and I was 20 to lung, liver, and pancreatic cancer. I really sympathize with her on the hard toll it has on us as a caregiver/family member and still have to find time for taking care of ourselves . If you happen to talk to her and she is up for a new friend to have relatable conversations or just encourage each other and support each other emotionally, then privately message me or she can and I will exchange email and phone number. I just don't know anyone even a small bit close to what I am going through in my life. I will definitely be checking out those two support groups you shared, thanks!

Hi @imstrongbecauseitistheonlychoice
Thank you for your understanding!

Have you tried fycompa yet? My husband takes 4mgs of it at night and is doing very well on it.

I have not tried that yet but will mention to the neurologist when we go back in June.

Be careful reducing or eliminating meds, I had a grand mal seizure when I missed my meds 24 hours.

I was hospitalized overnight with an unrelated issue. It was the weekend and they couldn't get approval for my seizure meds. They refused to give it to me all the next day and made me feel like a drug addict when I kept asking for it. I had a grand mal seizure when I got home that night. I had difficulty talking and unable to walk with out help for 24 hours. I take 600 mg of Trileptal and 400 mg of Lamictal

Hi @tonyde
I am very sorry to hear about this experience you had, as this could have been avoided. But now, take good care of yourself, be kind to your body and mind, and rest.
My best vibrations to you!!!
Santosha