"I wasn't expecting that!"

 Today I went for my follow-up visit with the epileptologist to see about my EEG results and check in on my meds. 

During the 24hrs of the EEG, I felt nothing. No symptoms, not even my little "twinges" that I sometimes feel. I was worried that there would be nothing on the EEG. My hope was that there would be things I didn't feel. What I didn't want was another clear/inconclusive test that gives us no new info.

The good news is that there were indeed two blips on my EEG (yay!). They both happened while I was sleeping, and they were each only about 2 seconds long. 

Here's the weird part: they both happened in a different part of the brain from what we expected. 

Everything until now has pointed to my temporal lobe--especially my symptoms, but also my PET scan showed my temporal lobe affected. 

These blips happened not in my temporal lobe but in my cingulate cortex. Dr said, "I wasn't expecting that!"

He said that sometimes the cingulate cortex seizure activity can mimic temporal lobe seizure symptoms. I'm not really sure why this happens (need to go down that google rabbit hole!). So it's not unprecedented, but is apparently unusual. 

What does this mean? At this point, it doesn't really mean anything except that it's another piece to the puzzle. We have this piece pointing to the cingulate and we have the PET scan pointing to the temporal lobe, and without more testing we can't know for sure. 

More testing. I knew that was coming. I've already been on the list for an in-patient stay at the epilepsy clinic at VGH. Hopefully once that happens, there will be enough pieces to decide whether surgery is an option (I also want to ask about RNS... but that's a story for another blog post!). 

Dr was very careful not to speculate too much about this finding, but given what I know of him, I think this will be the type of thing that will interest him and hopefully give him a puzzle to work on. I'm not your typical TLE case, lol. 

For now, I keep taking my meds as normal, keep tracking everything, follow up in 3 months. 

Ambulatory EEG

Watch my video about the Ambulatory EEG here. :)

Getting to know the BC Epilepsy Society

 It's kind of wild to me that it's taken me TEN years to start to get to know the BC Epilepsy Society, what they do, and how they can help me. 

I'm told that this is partly timing: ten years ago when my journey was just starting, they did not have the funding and the programs that they have now. Apparently it's only within the past few years that they've been receiving more support from the community, have done a bunch of fundraising and have been increasing their programs. 

I came across it randomly; I was down a google rabbit hole looking for ways to help my memory, since that's a big area that I struggle with. I came across something called the "HOBSCOTCH" program, designed at the Dartmouth Hitchcock Medical Center in New Hampshire, and then found that I could access this program (for free) through the BC Epilepsy Society. It's an 8 week program where you meet online with a coach and work on challenges and strategies. I'm currently in week 3. :)

But aside from that, they have other stuff that I had no idea about!

They have counseling programs, and imagine this--most of the counselors have epilepsy themselves! I was amazed when I heard this. They also have a sliding scale so that people with lower incomes can get affordable counseling. What a difference that would have made for me back in the early days, when I was terrified and also broke! I'm not as terrified and broke now but I still plan to meet with one of their counselors. 

AND they have support groups, both online and in person (I haven't checked these out yet). 

I've been so excited about all of these things that I already want to help somehow. So of course I jumped on board when I found out that they are one of the charities for the Sun Run. I've only done the Sun Run once before and I swore I'd never do it again, but this is for a good cause. If I can do anything to help make other people's journeys a little easier, then I will. 

I already posted this on my facebook page, but expect to see it a few more times between now and April. :) 

My fundraising page

New Years Update

Happy New Year!

Point form updates since I haven't posted in awhile:

• As of today's appointment I'll be increasing the Cenobamate/Xcopri to 300mg nightly
• Clobazam is gone
• Topiramate should have been gone... got down to 0 and my brain was reacting so it's going back up to 100mg/day again. I just can't get rid of this one. Every time I try to go below 100mg, my brain reacts. As much as I don't like the side effects, this med works for me. So for now, it's staying. 
• I had 8 episodes in November, and 8 in December, thanks to the decrease in Topiramate. That doesn't include the little mini-sensations-but-not-quite-enough-to-log. 
• Overall, I've been feeling SO MUCH BETTER--physically, mentally, and emotionally than I was 6 months or a year ago. I think it's because I'm off of the Brivlera and Clobazam, but the epileptologist also credits the Xcopri; he believes that this med has positive effects on moods and energy. He said today that he won't be surprised if that comes out in future studies/reports because he's seen it a lot. What it means for me is just that I'm feeling better energy, better moods, more motivation. I'm happy about that. 
• I've been working on increasing my physical activity. A year ago when I started working 100% at home, my step count and general activity level went down dramatically. So as of Nov 1 I have been focused on doing 10,000 steps per day (100% completion so far). 
• Today I asked him about HRT, since I'm turning 48 this year. I'm not yet at the point that I feel I need HRT, but I think it's coming and I wanted to make sure that it will be ok for me, especially since my epilepsy is hormonally-connected. He said it's totally fine and I don't need to worry about it; he said that the doses in HRT are generally pretty low and shouldn't impact my meds, except for one (he said but I forget which one) If/when I do start it, we may make an adjustment. But we'll cross that bridge when we come to it. 
• I've been having a rash for the past several weeks under my bra area when I run/hike/sweat, and I asked him about that because rashes are always alarming with my meds. Showed him the pics. There are no other symptoms of the Death Rash (fever, glands, etc.). He said it's not likely related to the meds, so to try hydrocortisone and/or see my GP if it doesn't go away. 
• I've also had some muscle tremors/shakiness, and some weird moments where my words come out in the wrong order when I say a sentence. For example, imagine if you try to say "I painted the house blue" but it comes out "I the house painted blue". This seems to be improving as I adapt to the Xcopri, but it is weird when it happens. Doctor is not concerned. 

In other news, I discovered that the BC Epilepsy Society offers some programs including a free 8 week program for improving memory. I'm going to be starting the memory program next week online. I have no idea what it entails, but I hope it will be helpful! Will report back next time. :)

The Sleepy Days

I'll keep this short; I only want it here so that I won't forget about it when I'm looking back in the future. 

The past several weeks have been really hard because I feel sedated. I think it's a combination of the clobazam and cenobamate. Even though the clobazam is decreasing, the cenobamate is increasing, and the specialist said that it can make the side effects of the clobazam up to 7 times(!) worse. I literally feel sedated much of the time--not just tired, but drugged. 

I've never slept so much in my adult life. 

I'll sleep 9 hours in the night, then take a 3 hour nap in the afternoon, and still be falling asleep in front of the tv by dinner time. 

(It's a good thing I'm not driving.)

The clobazam will be gone very soon and there are no more imminent increases in the cenobamate, so my hope is that this will start to resolve itself within the next week or two. 

I remember feeling extremely sleepy in the early days of the Brivlera, but it got better after a few weeks; hopefully this does one does too. 

Doctors without Bor.... Empathy

September 23 will mark 10 years since the first symptoms of my TLE began. In those ten years I've had doctor after doctor, test after test, medication after medication, ER visit after ER visit. In all of that, ALL of my tests have come back either clear or inconclusive. Symptoms pointed to right temporal lobe, but nothing ever specific.

Until now.

Two weeks ago I had a PET scan, and today the follow-up with the epileptologist. He showed me the images on his screen; the colours show what's happening in the different parts of the brain... "see how over here it's green and orange, and over here, it just goes dark?" That darkness tells us where the problem is.

It wasn't a surprise--it was exactly the area that we were expecting it to be. But for the first time in ten years, now I'm seeing it on the screen, in technicolour. Rather, I'm seeing the darkness where there should be technicolour.

He's still talking and I'm just staring at that dark spot on the image, and a huge wave of emotion comes over me. After ten years, it's suddenly concrete. I can SEE it. I start crying.

His response? "Why are you crying?"

He hands me a tissue and keeps asking me why I'm crying. I said, "because that," gesturing to the image, "is my brain, and it's broken."

What followed was a lot of:

"Stop crying"

"Be positive"

"It's kind of an insult to me that you don't believe I can help you" (!!)

"I'll refer you to a psychiatrist--you might have depression"

and so forth.

I told him that it's not about him, and I also said that it's normal for people with chronic illnesses to be emotional about such things. But he wasn't hearing it.

"Be positive."

Ok then... I'll just be positive about my incurable neurological disorder.

Thanks doctor.

Anyway....

So the darkest spot is the front of the right temporal lobe, specifically a spot called the "temporal pole". Also impacted are the amygdala and (to a lesser degree) the hippocampus on the same side. 

According to the epileptologist, the PET scan is not actually showing damage (directly) but sugar uptake(? I don't really understand this part). The way he explains it is that those areas of the brain are simply tired and so they aren't working at the rate they should be. And they are tired because the ongoing seizure activity wears them out. So the PET scan doesn't actually show a lesion or tumour or something (like an MRI would) but it shows that those areas aren't functioning the way they should... in his words, because they're too tired from having seizures all the time (even when I don't necessarily feel any seizure activity). But since the location of the "tired" spots match exactly what we expected based on everything else (symptoms, "inconclusive" tests, etc.), it tells us what we want to know. 

He thinks it's all great news. 

I think it's good news from a diagnostic perspective. It gives us some more proof and guidance. But looking at those images still tore me up. 

Meds

I'm still increasing the new one (Cenobamate), have fully come off of the Brivlera, and have just started decreasing the Clobazam. It will take 8 weeks to get completely off of the Clobazam, so I will see the specialist again in November and see how I'm doing. 

Emotional Support

After my appointment I was so upset that I couldn't even be in public for the walk home without being the crazy crying girl walking down Lonsdale, so I veered off to a little park and found a quiet place to sit and call a friend (thank you Liza). 

While I was sitting there, a heron flew in and was poking around the pond, so here is my emotional support heron:

Annual Self Care Day
As I mentioned, September 23 is the anniversary of my first symptoms, and years ago I turned it into my annual Self Care Day, so this year will be no different. Plans still being determined, but will likely involve a massage, lunch, new book, some shopping... we'll see! 
Until next time...

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. :)