Knocking on Wood...

Well I haven't posted an update since April when I started the Clobazam, so this one is a bit lengthy (sorry). 

I started on a very low dose, just 5mg. That's about as tiny as you can get--I even had to cut the pills in half, since usually you get 10mg. It seemed to be helping and I was doing well for awhile. I had 0 partials in May, only 3 in June, 1 in July, and 0 in August. So I thought it was really helping. That was a really good stretch.

Then suddenly BAM out of nowhere, on September 5-6 I had this massive, intense cluster. I had 6 partials on Sept 5 and 2 on Sept 6. I've never had 6 in one day, and they were incredibly intense, to the point that I was worried some of them might generalize. I had to sit down for a couple of them in case I might pass out. The last time I had a cluster this intense was back in March 2018 when the walk-in clinic doctor had put me on antibiotics (which of course is how I learned that I shouldn't use antibiotics...). 

So I was running the checklist in my head... had I missed any medications? Sleep deprivation? Alcohol? Virus? Of course I was having headaches and severe fatigue and feeling like crap, but was that because I was sick or because of all the partials? I couldn't think of anything. But here's one thing: any kind of imbalance or stressor on the body, including illness, can trigger something like this. So I went and got a covid test. 

Now, covid does not have a direct relationship with seizures, but as I said, any kind of illness or stressor can trigger seizures and I couldn't think of anything else, so I figured it was worth checking. But the test came back negative. 

To this day I have no idea what triggered it, and it went away on its own. 

The next time I spoke with my neuro, I told him about this. We agreed to increase the Clobazam to 10mg and see what happens. 

I had been functioning with 5mg just fine, but as I said in my previous post, Clobazam is essentially a sedative, and doubling the dose has impacted me pretty significantly. I am soooooooooooo sleepy. Some days I'm ok, but other days I just want to sleep allllll day. It doesn't help that I have a crazy sleep schedule because of teaching at 3am every day. But even when I get 8 or 9 hours of sleep in a day, I just want to keep sleeping more. It has gotten a little better as I've adapted, but not really. I need a nap most days just to feel ok. 

With that said, I would rather be sleepy than have seizures. The increase seems to be working (knock wood). As of today, I have broken my record. Zero symptoms for 3 months and 5 days. Cross your fingers that the streak continues. 

On a different note, I've been both amused and annoyed lately at some people's misguided paranoia about the side effects of the covid vaccine. If they could only see the list of side effects from the three different medications that I take. Combine all three meds and it's amazing that I can function at all. Luckily, the actual side effects that I experience out of the potential side effects are relatively manageable. Here is what I actually experience on a regular basis from each med:

Topiramate: electrolyte imbalance (causes tingling in my hands, feet, head, etc.), hair loss, and memory/cognition/attention issues. Sometimes I feel like I have ADHD. I drink an electrolyte supplement daily to help with that part (yay nuun!). 

Lacosamide: mainly headaches. Usually one day per week I get intense headaches for no apparent reason.

Clobazam: oh so sleepy!!! Sinus/nasal issues. And constipation (sorry TMI).

And guess what? All of that is worthwhile to stave off the seizures and keep my brain healthy. But if things continue to go well, then I want to see about a small decrease in the Topiramate. 

I'm waiting for the Province to release the list of underlying conditions which qualify for early vaccination. If I qualify, I will be getting the vaccination as soon as I qualify... the last thing I need is that damn virus. 

Clobazam

This update is a little late.

I had my spring "appointment" on March 26, but it was over the phone instead of in person, because of Covid.

For the past year and a half, we have been playing with the dosages of Topiramate and Lacosamide, moving each one up and down in the hopes that that would do the trick. Not only has it not worked, but in the most recent six month period I was having more episodes.

On top of that, the increase to the max dose (400mg) of Topiramate resulted in some pretty heavy depression. I wasn't sure at first what was causing it because I'd never had trouble with the Topiramate at the lower doses, but I couldn't pinpoint another cause. The only other time I had felt that terrible was when I was on the higher doses of Keppra. So it had to be the increased dose of Topiramate.

So I told the neuro that not only was the current mix not working for my partials but the increased Topiramate was making me depressed, and of course he said that that was not going to work! So we reduced the Topiramate back to a dose that is ok for me. And then it was time to introduce a third med. Yay.

The reason for adding a third med instead of changing them altogether is that each of these meds comes from a different class, and they all work on the brain in different ways. Or so I'm told. To be honest I don't know enough about how they operate, but the idea is that if I am handling the ones I'm on, I'll stay on those ones because they are doing good things, and then add one that is going to do more good things in a different way, and hopefully between all three of them I can get it all under control. Anyway....

Introducing: Clobazam.

This one is a "benzo", and it's one of the "bad" ones that in theory you don't want to be on long-term. They can be addictive and not so great for you in the long run. It's actually a tranquilizer. But my dose is very low (just 5mg once a day, at night time).

And lo and behold.... I have not had ANY symptoms since starting it. Five weeks and counting. My record is about three months, so I'm not getting too excited yet. We'll see....