Revisit medication

[Heavy Kevy]

Will doctors recommend retrying a medication if your seizure pattern or type changes?
A few I tried didn’t hurt or help it seems.

 

[valeriedl]

I don't know if they will or not but it doesn't hurt to ask. Give them a reason why you want to do it too.

 

[XxBlaqkxX]

From my own person experience, I've never had this happen.

First it was Dilantin, then that didn't seem to work, so they threw me on Dilantin and Lamictal together for a small while while weaning me off the Dilantin slowly. I was on Lamictal for 4 years and had so many breakthroughs, I'm not sure why I was even kept on it, and when I was older, then it was weaning off of Lamictal (awful) and being placed on Keppra.

If a medication didn't work, neurologists I saw never returned to it in my case because it wasn't even helping. Generally they're more likely to try prescribing something new instead.

 

[Sabbo]

My previous neurologist had suggested adding Neruontin/Gabapentin as a third AED to help control my complex partials. I said I wasn't interested--only because I had previously used it in conjunction with Dilantin in the 1990's (I only had simple partials then) to aid in their control, & it didn't work. I eventually dropped it.

I've taken every AED out there for simple & complex partial seizures. Whatever I'm not allergic to seems to work for a short time, then it's as though my brain becomes "immune" to them, & the breakthroughs begin. I'm currently taking 500MG Zonisamide (330am, 200pm), & 200MG Xcopri. I was fine for a few months, then the breakthrough complex partials started--I even had one day where I had 3!

 

[C0urt]

I have had tried docs try certain meds in new combinations. Because usually when I got off something it was for a good reason like blue sweat

 

[Heavy Kevy]

Decided to try Zonisamide with my night time dosage. I’ll now be taking Onfi, lamictal, briviact and Zonisamide before bed.

I’m moving forward with the Intracranial monitoring as well. Despite being horrified by the thought of it.

 

[Nakamova]

Good luck with it all! Zonisamide was not pleasant for me, but it has worked for others.

 

[Heavy Kevy]

Thanks
Hoping for some relief with the “super model” drug
I’ll need to keep an eye on my weight. I lost about 40 pounds since my seizures started. Although giving up beer had a lot to do with it. My appetite is not what it used to be. Maybe a morning N/A Guinness will help.

“It has nothing to do with somebody's weight. This kind of heavy is all about emotional weight. The Beatles "She's So Heavy" was meant as a compliment, not as a suggestion to start dieting.

 

[Porkette]

Hi Heavy Kevy,

My neuro has put me on meds that I have been on in the past the only difference is I take a higher dosage at night
instead of the morning and that has help reduce the seizures the most. As I have mentioned many times get a DNA test
with all the meds you have taken you may be drug resistant like I am and when it comes to losing weight I lost 70 lbs.
when I was taking Depakene yrs. ago.
I wish you only the best and May God Bless You,

Sue

 

[Nakamova]

Thanks
Hoping for some relief with the “super model” drug
I’ll need to keep an eye on my weight. I lost about 40 pounds since my seizures started. Although giving up beer had a lot to do with it. My appetite is not what it used to be. Maybe a morning N/A Guinness will help.

“It has nothing to do with somebody's weight. This kind of heavy is all about emotional weight. The Beatles "She's So Heavy" was meant as a compliment, not as a suggestion to start dieting.

Yes, as in it it makes you "skinny and dumb” (I joke, no offense meant to any supermodels reading this). I did lose weight on it and also had cognitive and mood effects. (If you aren't able to eat properly it can make you cranky and foggy). Low blood sugar has been a secondary seizure trigger for me, so I ended up having a big ol' seizure on it and switching to Lamictal.

Very important to make sure you stay hydrated on Zonisamide, and don't drink it with grapefruit juice (which can interfere with the way it is metabolized).

 

[Heavy Kevy]

Humor is a coping mechanism in my book
I bought a new water bottle yesterday. Kids keep stealing them.
No grapefruit juice! I just made a pitcher of sea breeze cocktails

 

[Sabbo]

The "no grapefruit/grapefruit juice" with Xcopri kills me--it's one of my favorite fruits. I'd eat 1/2 a grapefruit each morning whenever they were in season/available in the Chicago area.