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. :)

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... 

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....

Fall Update, Part B

Dr Mary Glen
This morning I had another doctor appointment, but for something un-brain-related. Doesn't matter what for, but the point was that I saw Dr. Mary Glen. She is now working at my regular clinic, alongside my regular GP.

She introduced herself and I said, "Actually, we've met before." She didn't remember, and I hadn't expected her to.

I told her that four years ago, she was the doctor at the walk-in clinic when I first went to talk about the strange deja vu symptoms I was having. She's the one who sent me to my first neurologist.

I told her thank you for taking me seriously, for listening and not dismissing me. I've heard some horror stories from people who have experienced the opposite from other doctors.

It's been a hell of a journey since then, but I'm still incredibly grateful for her.

On sleep, and feeling rested. 
This morning I was thinking about the fact that I am a good sleeper now. It's so weird. For 16 years I was chronically sleep-deprived. I know now that it was from extremely low iron. Then when my epilepsy started my iron was (finally) checked and was brought up to normal levels through supplements, but then I was on stupid seizure meds that made me so exhausted that the sleep didn't help. I still felt insanely tired all the time. Even when I slept and slept, I was tired.

Now--ever since I switched from Keppra to Vimpat--I sleep 7 or 8 hours, and I wake up in the morning... and... I feel good. I feel rested. I still tire out by about dinner time, but that's probably because of my brain and my meds, and that's ok.

It took me awhile to notice, and I still think it's strange. But it's also pretty cool. I'll take it.

Fall Update

Saw Dr Kula today for my six month appointment.

I last saw him in March, when we increased the Lacosamide. At that time, he also had sent me for an ECG because the Lacosamide is a sodium channel blocker and can impact the heart. My ECG showed "first degree AV block", which is just a borderline abnormality, most likely caused by the med and not a huge concern. According to this page, "In general, a 1st degree AV block is a benign finding that does not require any treatment, however it may be an indicator of higher degree AV block in the future."

Anyway, because the Lacosamide increase made zero difference in the number of partials I've been having over the last six months, we're decreasing it back down to 200mg per day rather than 300mg per day anyway. I will have another ECG in a month to see if my results go back to normal.

Instead, we are going to increase the Topiramate from 300mg to 400mg.
I suggested this and had already read that 400mg is the max dose.

He said we are on the same page, and throughout the appointment kept saying that I am a star patient and should be a neurologist because everything I suggested was exactly what he was going to suggest himself, lol. He also loves that I keep track of every partial, and that I do my own research and reading. He said I am the ideal patient.

I asked about the long term effects of the medications. I've asked both him and my old neuro this before but I always want reassurance and he told me again that the long term effects are nothing to worry about.

I also told him that I'm actually really worried about my brain, looking into the future. Alzheimer's and dementia run in my family, particularly in the women. Between that and the damage that the seizures are probably doing, I am worried that I am going to lose my faculties early. He said to focus on what I can control: diet, exercise, taking care of myself. Basically, he said, "keep doing what you're doing." I was worried that he would be dismissive of my concern but he wasn't at all, thankfully.  He also told me that partial seizures have a far smaller impact on my brain than generalized seizures do, so I have the "good" kind of seizures, as far as that goes.

 He also said that just because Alzheimer's runs in the family, I don't necessarily have the gene. Also, he said that we will likely have medical treatment for it within the next 10 years(!).

If the Topiramate increase doesn't do the trick, then we may add a third medication in the spring. Next appointment is six months from now.

Now to get through the increase... this is the one that makes me feel drugged. I will probably wait until the weekend and take Monday off as a sick day. Monday is the four year anniversary of my partials starting, and I always take a self-care day that day anyway.