Cenobamate Update: 3 Weeks

 I don't know why, but after I saw the new specialist in July, it took their office two weeks to get the new prescription to my pharmacy, and there was some back and forth about the prescription. So I didn't actually start the new med until July 23. 

This new one is called Cenobamate (X-Copri). When I read about it online, it's a bit crazy. They all are, but this one seems to be really polar. Either it's really awesome, or you're going to the hospital. I could find almost no reports in between. No middle ground. So I was a bit nervous about trying it, especially since I've had bad physical reactions to a couple of the other ones we've tried. 

The first night, I was staring at the meds in my hand and just thought, "I don't want to do this." I was feeling the weight of how many pills I take and how many I've tried that haven't worked, and all the side effects I've had to endure... adding a new one to the mix was pretty overwhelming. Took a breath and swallowed the batch. 

Because of the potential for severe reactions to Cenobamate, we titrate it VERY slowly. Tiny dose to start, increase every two weeks for several months until I get to a therapeutic dose. So even though it's been three weeks now, I'm still only on 25mg per day. The good news is that I haven't noticed any adverse reactions (yet). 

The other good news is that while we are increasing it, I get to start decreasing one of the other ones. We had some disagreement about which one to decrease first; my new specialist is very good about listening to what I want and which meds I want to ditch first (Topiramate and Brivlera). But apparently the Clobazam doesn't mix well with Cenobamate, so as we are increasing the Cenobamate, the Clobazam could start to be an issue. He wanted to get rid of that one first, but gave way and let me do the Brivlera first. Right away--within days--I started feeling better energy. Mostly physically but also mentally, I feel so much better with less Brivlera. This is the one that makes me feel extremely sedated, so reducing it has allowed me to start getting some of my energy back. 

If all goes well (no adverse reactions) then in a few more weeks I will be finished with the Brivlera and will also be at therapeutic dose of Cenobamate, and we can look at reducing the next med. 

In the meantime:

- I got the call to schedule my PET scan(!). It's for August 30, so it will be done by the time I have my next appointment with the specialist and we can go over the results at the same time that we talk about my next steps with my meds. 

- I thank my lucky stars every day for BC's Fair Pharmacare program and for my group benefits. These meds are DAMNED EXPENSIVE. Because Cenobamate/X-Copri is new in Canada, there is no generic version yet and the costs are insane; then add that to the costs of all my other meds and there is no way I would ever be able to afford to even have them were it not for the Pharmcare program. There is a woman in my online support group who is from the US and said she wants to try this med but she can't because she just can't afford it. Imagine being in that position, where you've tried multiple meds and the new, promising one that could be the answer isn't an option because of the cost... I hope for her sake that the generics start to come out on the markets soon. 

That's all for today.... will update again after PET scan and next med change. :)

Dusting off the blog...

I let this blog lapse because everything was kind of in stasis for a long time... I was on a cocktail of meds that was mostly(?) working for me and the side effects were mostly(?) tolerable. I was ok with staying with that for awhile. From 2020 to early 2024 I was on Topiramate, Clobazam, and Lacosamide. 

Now... everything is changing again.

In May 2024 I asked my neurologist if we could make a change, primarily because I wanted a better quality of life. I was no longer ok with "just ok". I wanted to try for something better. Mostly, I wanted to try to replace the Topiramate, which is the one that impacts my cognitive function and memory. He agreed that we could try something new and suggested Brivlera, a relatively new med in Canada. He said that it's a relative of Keppra, which made me nervous because Keppra was the one that made me extremely depressed for a very long time. But the neurologist said that this one doesn't have the extreme side effects, at least for most people... so I agreed to try it. 

The biggest thing I noticed at first was that my heartrate dropped by about 10bpm and I was soooo drowsy. This lasted several weeks and then leveled out. Then we started slowly reducing the Topiramate. However, every time I tried to reduce it below 100mg/day, my symptoms came roaring back. We increased the Brivlera and I again tried to reduce the Topiramate... no luck. Holding steady at 100mg since then. That leaves me on FOUR meds now instead of three... not what I wanted to accomplish. 

That said, there is a bunch of other stuff happening which is the reason I'm reviving the blog. Time to start journaling again. 

When we started the Brivlera last May, my neurologist said, "If this one doesn't work maybe I can refer you to the Epilepsy clinic at VGH." 

I stopped him--what? I had been told way back in the beginning that the clinic was closed and no longer operating. But apparently it had re-opened a few years ago and no one had told me. All these years I had been under the false assumption that there were no other options for me beyond my neurologist--and while he's great, he's not a specialist. 

OF COURSE I WANT A REFERRAL! 

So when October rolled around and we were still fiddling around with the med dosages, he put in the referral. 

In April I had a fresh MRI as part of the process. 

Two weeks ago I finally got the call to meet the Epileptologist. Imagine that. I'm going on TEN YEARS of dealing with this and I'm just now meeting an Epileptologist. Icing on the cake? Even though he's attached to VGH, he has a clinic in North Van that is walking distance for me. 

Today I finally met him. To be honest, I was really anxious about this, ever since it was scheduled. If this doctor can't help me, then I'm out of options. And I had no idea what to expect. 

He spent more than an hour and a half with me. Asked me allll the questions. He had already read my file and looked at my test results before the appointment. Asked about all of my meds, my triggers, my lifestyle, sleep, work, side effects, all of it. Gave me a cognitive/memory test. The only part I struggled with was word finding: "name 11 words starting with the letter f in 60 seconds". I only got 9 and then was at a loss. He said this is the Topiramate--not a surprise to me because I know that the med impacts me this way. 

Then he told me a lot of things that no one has ever told me in the past ten years of doctors and tests:

1 - My being left-handed complicates everything. With right-handed people, their language centres and dominance is almost always on the left, and it's easier to pinpoint what is happening where. But left-handed people can have language centres on either side of the brain or both sides. He said that the way I write indicates left brain language centre. However, the fact that I came in with hand-written lists/summaries of my history and medications indicates right brain. ALSO: 

2 - When I had had my sleep-deprived EEG, I had been led to believe that there had been seizure activity in my right temporal lobe. However, that's not accurate. The report was actually that there was "slowing" in the right temporal lobe. This is a "non-specific" finding that can indicate a number of things. It only means that something is happening there, not what is happening there. Slowing is seen in migraines, alzheimers, seizures, etc. ALSO:

3 - I had previously been told that my MRIs showed nothing. Also not true. He pulled up my MRI images and showed me. My left and right hippocampi don't match. The right one looks normal. Correct shape, angle, and edges. My left one, on the other hand, isn't shaped properly and isn't angled properly. This is congenital. It may or may not be causing problems--will require more testing. 

4 - Because the abnormal EEG is on the right side and the abnormal hippocampus is on the left side and my left-handedness makes it hard to pinpoint based on symptoms, we really don't know where the activity is originating. Need a lot more testing. So he is ordering me an ambulatory EEG, a PET scan, and an inpatient stay at the Epilepsy Monitoring Unit. There are waiting lists for all of these, so it could be a year or more before all of it transpires. 

5 - In the meantime, of course he wants to fix my meds. Get rid of the Topiramate, hopefully also the Brivlera, maybe even get me down to one med. He wants to try Cenobamate. I don't have the prescription yet because it's new in Canada and not always approved by insurance or by Fair Pharma unless by special authority, so we have to apply for that and see. But likely in the next week I will be starting that. 

It's all crazy and scary and a lot to absorb. I'm probably forgetting some of the things we talked about. But mostly, I just want there to be hope of a better quality of life. I told him I just want to not be tired and sad and hopeless anymore. He said there is hope and he will do everything he can for me. 

So... onward. Not looking forward to going through yet another med transition, but we'll see how that goes...