What do you consider good/excellent control?

[Mdwall]

I only ask because my history is spotty to be quite fair and knowing that I have JME per past EEG's I have had and a stint of taking Depakote way back when I was a wee young'un (with zero seizures at that time!!)

I've changed regimins both on Doc's recommendation and based on conversations with them about what I'd like to do to try and treat. Thankfully I've had some pretty open minded neuros in my time and I think they genuinely want to help out their patients in any way that is possible but its hard to get a read on some aspects of treatment regardless since they aren't the ones actually going through what we're going through on a daily basis.
I wish there was a way that Doctors could force insurance companies to use particular brands of medication because you will not ever convince me that ALL generics are equivalent in effectiveness to the name brands. Simply because ever since having to use Caremark/CVS for meds; things have been so erratic for my consistency.

So I guess the short version of my question after that tirade; what do you consider to be good control? Auras you can prepare for?; zero seizures? one a day/week/month/year etc? Of course zero seizures and no troubles at all ever again are ideal and in a perfect world; we'd all be right there lol but honestly; I'd really just take an early warning system so I could hunker down safe and not worry about feeling restricted/as a burden to those I love and care about. I know its a lifelong condition for most and barring a miraculous healing something I just have to acknowledge instead of fight that will just stress me out and harm relationships with others I know and love.

 

[finalpoet]

I only ask because my history is spotty to be quite fair and knowing that I have JME per past EEG's I have had and a stint of taking Depakote way back when I was a wee young'un (with zero seizures at that time!!)

I've changed regimins both on Doc's recommendation and based on conversations with them about what I'd like to do to try and treat. Thankfully I've had some pretty open minded neuros in my time and I think they genuinely want to help out their patients in any way that is possible but its hard to get a read on some aspects of treatment regardless since they aren't the ones actually going through what we're going through on a daily basis.
I wish there was a way that Doctors could force insurance companies to use particular brands of medication because you will not ever convince me that ALL generics are equivalent in effectiveness to the name brands. Simply because ever since having to use Caremark/CVS for meds; things have been so erratic for my consistency.

So I guess the short version of my question after that tirade; what do you consider to be good control? Auras you can prepare for?; zero seizures? one a day/week/month/year etc? Of course zero seizures and no troubles at all ever again are ideal and in a perfect world; we'd all be right there lol but honestly; I'd really just take an early warning system so I could hunker down safe and not worry about feeling restricted/as a burden to those I love and care about. I know its a lifelong condition for most and barring a miraculous healing something I just have to acknowledge instead of fight that will just stress me out and harm relationships with others I know and love.

For me I would be extremely happy if I had no grand mals. I have about 2 a year, and that's 2 too many.

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[Daroswene]

I was having ten seizures a month before my new neurologist changed my VNS settings and added Lorazepam for breakthrough seizures. Now, I've had eight since 6/26/2017 (knock on wood). I was having three to four grand mals a year too, but have had only had one before the VNS settings change and none since.

Before 6/26/17, I could have anywhere from 0 to 20 seizures a month. Right now, I would be happy just to keep the grand mals away. They make my muscles hurt more and affect my SLE.


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[Porkette]

Hi Mdwall,

I'm happy not having myoclonic seizures anymore and having my seizures reduced from 300 a yr. down to 68 seizures a yr. after I had surgery and started the cbd (med. marijuana) most of my seizures are absence seizure or simple partial (aura) before I was having complex partial, myoclonic simple partial and absence. I average about 5-10 seizures a month and most of my seizures happen in the fall and winter. Here's wishing you and everyone else only the best and May God Bless All of You!

Sue

 

[valeriedl]

I don't know if you want to consider 'under control' but for the last few years I have on average 5 seizures a month. If I've started to have more or less my neuro will make changes in my meds or VNS (increasing or decreasing dosages or settings on the VNS) until I get back to normal or if my seizures start to lessen.