Drug Resistant Epilepsy

@laurabeck
I am sorry to hear your family is going through such a challenging ordeal. I wonder if the Zyrtec could be lowering his seizure threshold?
Although probably a long shot perhaps Zarontin might help. Has he tried Depakote? Zarontin got rid of my absences but they were typical absences.
Take care,
Jake

@jakedduck1 Thank you for your reply. Does zyrtec or other antihistamines often lower seizure threshold? He’s tried both depakote and zarontin.

Something that has recently helped me very substantially reduce the frequency of my partial onsets is to spread my meds out over the day more, taking the same amounts of the same meds except instead of 3 times a day, I take them 5 times a day. Including right before bed and right when awakening.

Tracking my partial onset seizers for 8+ years, listing date, time and anything I could possibly think of that may be a common trigger (food, drink, activities, etc.), I struggled and could not find anything in common. Then, after a lengthy, mathematical study of over 300 entries, I found that 75% of the seizures happened on average, 8 hours after my last medication intake

Of course talking with your seizure specialist first before taking any action. I would hope not, but if your Son's are first thing in the morning, maybe an alarm during the night?

I learned with simple googling the half life of my meds, which is the time after taking it that 1/2 of the medicine has left your system. IE: Keppra's half life is 6-8 hours. I was only taking it twice a day (12 hours apart) I then found out that 75% of it was out of my system at twelve hours, which was the time I was taking my next dose.

Understand that a full belly of food can slow the absorption of a medication. I also learned about the effective length of my meds, which is different than the half life.

I found out that keeping as consistent as possible level of your meds in your system throughout the day (and night?) is important.

Good luck to you and your son.

@laurabeck
Although zyretec has been known to cause seizures I believe it is quite rare, especially when compared to older antihistamines. But rare things do happen. Perhaps I am overly suspicious. I consider most everything suspect.
My last Neurologist refused to prescribe generic drugs for his seizure patients whenever possible. He spent an hour explaining and drawing charts and graphs explaining why. I wish I could remember all that he told me. He switched me to Carbatrol, a brand name extented release Carbamazepine. My seizures stopped. He told me to always get refills using the same manufacturer and not to switch from brand to generic or vice versa. Stanford University did a study on the above finding switching manufacturers increased seizure risk.
Take care,
Jake

@noshit45678

There is always the chance your son’s condition will get better wiith age! I suppose the drugs he’s currently he’s taking will be different from mine (currently 45 years old) and the types of medication seem so different between countries. 1 thing about generic medication is they are cheaper because the amount of active ingredient in them is lower with a higher % of “fillers” for a similar mg. Although the amount may not seem significant, but for a person’s body it may be. And of course the amount will also differ between manufacturers and a body may also be used to a brand.

Hi @laurabeck
Welcome to our community at Mayo Clinic Connect!
I'm so sorry to hear about the challenges your son and your family have been going through with his seizures.
I agree with @jakedduck1 and @louissc regarding the efficacy of generic medication, especially for epilepsy. Last February, I changed my CBD manufacturer — known as Epidiolex in the US — and my seizures stopped. Like your son, I have difficult-to-control seizures, having been diagnosed with temporal lobe epilepsy with mesial sclerosis.
As to @noshit45678's comment, some people might have a fast metabolism, which can make a difference in the efficacy of medications. This is, by the way, something my neurologist wants to check at our next appointment later this month. Perhaps it would be worth bringing that up at your son's next appointment with his doctor.
Has your son's doctor considered prescribing Epidiolex for him? Is he being treated by an epileptologist or a neurologist with extensive experience in epilepsy?
I'm also tagging @ambo2006 and @rchllmorgan, whose experience with asbsence seizure management might be of interest to you.
I hope you find a great deal of support here in our community!
Chris

@santosha
We started him on Charolette’s Web original formula CBD but are only a week in. How long did it take for you to notice a difference with CBD?

@laurabeck
Hi Laura!
Let me share my CBD and medical cannabis journey with you.
In 2020, medical cannabis with a low THC percentage was gradually introduced into my treatment, as I had suffered significant side effects from five different AEDs over two years of my epilepsy treatment. Over six months, the cannabis dose was slowly increased while Vimpat was simultaneously tapered down. Cannabis can raise AED blood levels, and I could feel Vimpat's side effects intensifying with each medical cannabis dose increase. It took roughly three months before I began to feel a meaningful difference, and by month six, Vimpat was fully phased out.
In 2021, due to quality issues with my manufacturer in Brazil, I was switched to pure imported CBD — no THC at all. Seizures increased slightly, but I still felt significantly better than on Vimpat alone. I remained on pure CBD until late 2024, when intense stress related to my parents' health triggered tonic-clonic seizures. My doctor added a low dose of Keppra, and I became seizure-free for eight months. When my CBD dose was later reduced to ease Keppra side effects, seizures returned. Through @keeg1010 — whose son takes Epidiolex — I learned that improper transport without refrigeration can affect medication efficacy. I investigated, changed manufacturers, and seizures have since been back under control.
One week is still very early to feel the benefits of medical cannabis or CBD. Patience is key, as CBD generally needs time for dosing to be fine-tuned.
I hope this helps as you navigate your son's treatment. Feel free to reach out anytime.
Chris

Hi @laurabeck
Today I watched another podcast of "Seizing Life" from Cure Epilepsy, and the challenges you are facing with your son came to mind — making me wonder: could he perhaps be experiencing more seizures due to overmedication?
Here is an interesting excerpt from this podcast:
"So I went in for an EMU stay and with the goal of catching a seizure so that I could be a surgery candidate. And so went in, took me off three of the four drugs and the other one lowered it to a very baby dose. And so I’m like, I’m going through insane amounts of withdrawal because that’s something we don’t talk about either, is that like your body is like literally going through withdrawal as someone does when they’re recovering from addiction. And no better place to do it than in a hospital when you have to ask a nurse to come take you to the bathroom. So it’s just like, it’s an experience. And I didn’t have a seizure, of course, as we said, because that never happens in the EMU. I was there for nine days and, yeah, we really tried and it just got to the point where I mentally couldn’t handle it anymore.
And so my doctor was like, “That’s totally fine. I’m going to cut you loose.” And she’s like, “Okay, and we’ll have you leave on, we’ll add another one back, another medication.” And I was like, “What if we just tried? And what if I just tried to go on this one? Since I’ve been on this one, I haven’t had one in here. Can we try it?” And she was… I love my neurologist. I’m obsessed with her. She was like, “Yes, we can absolutely try it. There’s a possibility you will have to go back on and that titration up, as you know, is really hard.” So I said, “I know, but let’s just try.” And we did. And I literally have chills because I went from having one to four seizures a week to one a month after that shift.
And she is so amazing because she was like… And she didn’t have to do this, but she took responsibility and she said, “I overmedicated you. And I think the side effects of the medications, like you were saying, got you so tired that it actually induced more seizures.” And I was like, something I never would’ve thought of, makes complete sense."
Here is the link to the podcast, in case you are interested in watching it all:
Living, Working, and Dating with Adult Onset Epilepsy
Cure Epilepsy