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.
Tuesday, September 17, 2019
Monday, September 16, 2019
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.
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.
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