Medication decisions

[Heavy Kevy]

My surgery was over 2 years ago. It’s been life changing in the best way. I went completely SZ free for 6 months. Since then Ive been having Very mild nocturnal seizures maybe once a month. In comparison to the past. They’ve all been nocturnal and my recovery is very quick as well.
My concern is that the frequency appears to be increasing. I just checked my SZ diary and I’ve had 10 already this year.
I’m sure I could be building a tolerance to any of the medication I’m still taking.
I’m willing to continue with my situation. Rather than changing meds yet. At the same time, I don’t think possibly having 20 (even mild) seizures in a year will be good for me.

I feel better getting that written down, and out of my head.
I hope you’re all having a wonderful day

 

[Porkette]

Hi Heavy Kevy,

Have you ever noticed a pattern in your seizures where you may have more in the summer compared to
the winter. If so it could be the amount of serotonin out there in the summer that is triggering more seizures.
My Epileptologist calls them "seasonal seizures."

Wishing you only the best and May God Bless You,

Sue

 

[Heavy Kevy]

Thanks Sue!
No, haven’t noticed any seasonal changes. I am curious if sudden large temperature change affects me. I will look into serotonin levels
My wife told me I had one at 6:00 am yesterday. I was “smacking my lips”. I felt decent most of the day. Then took a late nap, and screwed up my sleep schedule.
I’ll be taking it easy and trying to stay cool today. It’s blazing hot outside!

 

[Porkette]

Hi Heavy Kevy,

I'm glad you haven't had any seasonal changes triggering seizures but another thing that triggers
seizures for me is a low pressure in the weather. If it's going to rain or snow even two days before the
bad weather hits I will often have a seizure. My Epileptologist told me this happens because the air gets
heavy and in turn that messes with a person's hormones and can trigger seizures for some people.
Wishing you only the best and May God Bless You,

Sue

 

[Sabbo]

Hello. I feel that if there isn't any pattern you're noting, you could be reaching a tolerance level. I hate that part of epilepsy. Even since adding Xcopri, the longest I've been seizure-free is close to 8 months, & THAT was back in 2024.

 

[Bernard]

Do you take your meds in the morning or evening/night? If you take them in the morning, it's possible that changing the timing of the dosage schedule or using extended release versus regular might help maintain a more even blood syrum level of your meds at night.

 

[Heavy Kevy]

I’m taking meds 3 times a day. Thank goodness for the phone alarm. I’d miss a few midday doses without it.

 

[Heavy Kevy]

My blood work showed that I had room to increase two of my 5 evening medication. Lamictal and Zonisamide were the two. My Dr. recommend i increase the Zonisamide. From my experience, it’s the more effective nighttime meditation. So I agreed.
I started yesterday and this is night two with a touch of insomnia. Could be other reasons though. The Zonisamide should be making me extra sleepy.
Decoding which med sounded like a coin toss. I’m hoping we guessed right.

 

[cadsgj]

I so see exactly what you are saying here. If I opt to wait a few minutes after my mid day alarm, more times than not I forget.

 

[Sabbo]

I take meds twice daily. In the morning I take 300mg Zonisamide, & at night I take 200mg Zonisamide along with 300mg Xcopri. I feel I've become immune to the "causes drowsiness" factor of these meds. I'll have days when I'm extremely tired, but just cannot sleep at night.

 

[greywolf]

I have a notebook that I use for my meds. I made a chart with the days of the week, and I take mine twice a day, so I make a little "X" each time I take my dose, that way I know I took it. Sometimes I take my meds, and 10 minutes later I'm wondering if I did or not, so I just look at the book. It's all good as long as I don't forget to mark the "X".

I've had another increase to my dosage lately. Up to 1000mg twice per day of Levetiracetam. That's double my starting dosage just over a year ago. Seems like each time they check my blood levels, they have to increase the dosage. Even now I'm still at the low end of being within the therapeutic range, but it does seem to be stopping the seizures. I am really starting to feel the side effects more now though. Thankfully no "Kepprage", but I am tired a lot, and I get dizzy a lot easier when I am really tired. Coffee is keeping me able to work, honestly I don't know if I could do my job without coffee. I tend to just fall asleep if I sit down for more than 10 or 15 minutes, but sometimes it's hard to just keep moving. Also having more issues with my short term memory these days (another reason I have that notebook to make sure I took my meds). There's still room to increase my dosage if it becomes necessary, but I worry that the doctors might need to change me to something else eventually.

 

[Sabbo]

I've been having fun with my AEDs--Xcopri, actually. In fact, thanks to insurance & waiting to hear from this company I actually went nearly 10 days where I only ate half my nightly dose--150mg instead of 300mg. Our insurance wanted a copay of nearly $2800 from the local pharmacy--that is more than our mortgage. The company HAS/HAD all the needed info, but didn't approve the aid until earlier this week, & delivered a one-month supply on Wednesday.
DESPITE how much Xcopri has helped me, I'm truly starting to think about switching to some other AED. Obtaining it is becoming too troublesome, & the copay insurance asks for is ridiculous.