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.

Spring Update

Well, not too much to tell here. I was hoping for something more exciting. I saw my neuro today and got my test results. I'll do this in bullet points because it's all over the place:

• My EEG showed some spikes in the "anterior right temporal lobe", which we already knew because the EEG tech told me this and I told you in the previous blog post.
• My new, high-res MRI still did not show anything!! 
• I asked if this means we can't do anything except medicate... does this mean I am not a surgery candidate?? I was reading recently about a cool new tech called laser ablation surgery where they just zap the bad cells from your brain and you're done. He said I could still be a surgery candidate if I really want to pursue it, but it requires a lot more testing and that testing is extensive and invasive (like staying in the hospital for a week or more, etc.). They usually only do that for serious cases that are not responsive to meds, but if I really pushed it they could look at it. I said we could leave it on the backburner for now since my meds are doing ok and I'm not in a place in my life right now where I want to put myself through that... but maybe another time. 
• We are increasing the Lacosamide, at my request, since I have been doing well with it (no side effects) and I want to try to get to 100% control where I am not having any partial seizures or anything else going on. Keeping the Topiramate dosage the same. He wants me to go for an ECG in a few weeks because the increased dosage on the Lacosamide can sometimes have an impact on the heart(!). 
• I asked about long term effects of both meds, including memory loss, etc. He said both are fine, as far as we know. He said that people who report memory loss or other effects with the Topiramate report it in the short term and I would have noticed it already; i.e., it's not a long-term effect so if I haven't noticed it in the past two years already, it's not going to happen. So that's good. 
• Today is the 2 year anniversary since my last generalized seizure!
• Turns out that since I last filled my Lacosamide prescription, a generic version has been released in Canada. There was no generic version before (and there still isn't in the US), which meant it was massively expensive. I'm covered under Fair Pharmacare because of the type of medications and the cost of them, but going generic is still helpful for the portion that I do have to pay. The non-generic Vimpat costs around $300/month vs. $100 for the generic, and then I still have to add my Topiramate on top of it. Thankfully, Fair Pharmacare covers the bulk of it, so my actual cost now is around $66/month. Thank the gods for socialized health care!!! 

When I think about where I was at two years ago... or even one year ago, I feel a lot of gratitude and hope. I'm in a vastly different and better place mentally, physically and emotionally. I look back at my blog posts and remember how exhausted and sad and hopeless I felt, and I can't describe how much better I feel now. I still have off days and weeks of course, and I don't expect that that's going to go away, but overall it's like night and day. So good. :)