8 months seizure free!

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

arnie

arnie

New
Messages
1,146
Reaction score
1
Points
0
I guess the thread title says it all. I don't get on here as much as I used to, partly because I'm busy with stuff but also because I sort of feel like a person who doesn't have epilepsy. I know that I do, of course, because I religiously take my meds four times a day, but it's so nice to be seizure free for the first time since 1982 that I want to have as little possible to do with epilepsy, if that makes sense.

For those of you who are new here and may be interested in what I did to be seizure free for so long, and some of what led up to it, you might want to check out the last couple pages of this thread:

http://www.coping-with-epilepsy.com/forums/f23/my-vns-experience-22263/index12.html

The gist of it is that I started taking my Lamictal 4 times a day instead of two, which then allowed me to increase the dose to a therapeutic level and not have side-effects. I am apparently a person who metabolizes drugs very quickly so I need smaller doses more frequently. That's not rocket science and it is kind of discouraging that in all the time I have had seizures not one of my docs ever suggested doing that. Also, there is pretty much nothing in the Lamictal literature which says that 4-time-a-day dosing might be a good alternative.

Finally, as I have said in other posts, I encourage everyone, even those people who have had E forever, to keep a seizure diary on the SeizureTracker site.

https://seizuretracker.com/

Onward and upward!

Go Seahawks!!!
 
Congratulations, Arnie! Eight months is a long time. All the best for continued seizure freedom.
 
Great that you've been seizure-free for 8 months. But one thing I don't understand is why you went ahead with VNS surgery before ever taking or trying to take the meds 4 times a day instead of 2 times a day. We did all sorts of different drug dosages before we even discussed the VNS.

Anyway, I hope you remain seizure-free.
 
Congrats Arnie! It must feel great to "feel like a person who doesn't have epilepsy."

Cint, I think none of Arnie's neuros recommended the 4 times a day dosing, I suppose since it's less common. Very frustrating for him of course. :(

Quick question for you Arnie -- do you take the brand or the generic of Lamictal? If it's the generic, do you know who the manufacturer is? I ask because the manufacturer of my generic Lamotrigine (Zydus) seems to have a shaky rep for batch consistency.
 
arnie

Well what can I say arnie except well done and I hope success keeps going for you. Congratulations again arnie.
 
Cint said:
Great that you've been seizure-free for 8 months. But one thing I don't understand is why you went ahead with VNS surgery before ever taking or trying to take the meds 4 times a day instead of 2 times a day. We did all sorts of different drug dosages before we even discussed the VNS.

Anyway, I hope you remain seizure-free.
Click to expand...

Over thirty years of epilepsy, 3 neurologists, one epileptologist, 5 or 6 medications, active involvement in 2 epilepsy discussion boards (one about 20 years ago, and now this one), talking to nurses and docs and pharmacists and other health care professionals in the 15 years I worked in a hospital, lots of research of the literature on my own, and in all that time I didn't hear about anyone taking the meds more than twice a day, no one suggested that I take the meds more than twice a day, nothing that I read said more than twice a day. Additionally, no one ever suggested that I actually graph my seizures to see if there was a daily pattern to them. If I would have thought of taking the Lamictal more frequently I would have done it, like I did when I finally realized it might be a good idea. Even after being successful on this regimen, and asking my epileptologist why no one had ever suggested it to me, she said that taking meds 4 times a day is too hard for most people to do. Right.

Anyhow, I'm glad it's working for me and I hope it can work for others. I've been trying to encourage other people to do the SeizureTracker thing and to consider more frequent dosing, but somehow I feel that it falls on deaf ears.

That's life.

Carry on!

Go Seahawks!!!
 
arnie said:
Even after being successful on this regimen, and asking my epileptologist why no one had ever suggested it to me, she said that taking meds 4 times a day is too hard for most people to do. Right.
Click to expand...

It is so frustrating that that would be a reason not to make the suggestion. I would think that for the sake of seizure control we would split medication doses up to even more than 4 times a day if it would work!
 
Thumbs up and a great smile for you Arnie! It is so great to hear this.
 
Arnie, I'm so happy for you. :). Here's to another 8 months and then some!
 
masterjen said:
It is so frustrating that that would be a reason not to make the suggestion. I would think that for the sake of seizure control we would split medication doses up to even more than 4 times a day if it would work!
Click to expand...

One would think so, don't ya think?! :ponder:
 
Congratulations arnie, that's wonderful to hear! Best wishes for continuing to be seizure-free. And I didn't know about the seizure tracker site, so thank you!
 
Arnie, you deserve it. Congratulations, and you are an inspiration to everyone on here who wants to believe their situation may improve in the future. Cheers!!!
 
Congratulations!!! I thank you (and everyone else) who is so open about all the different things they have tried in order to reduce seizures while minimizing treatment side effects.

It REALLY helps someone who is new treatment understand that they never have to stay stuck. It may take more than one provider. It may take more than one method. It may take months, years or even decades-- but things CAN improve.
 
Thats great you have gone 8 months seizure free Arnie, hope it continues :)
 
You must log in or register to reply here.
Back
Top Bottom