Trying to find the Right Cocktail

[ATLMayhem]

I was first diagnosed over 30 years ago. Since then I have been on Phenobarbital (made me drunk) Dilantin (switched when I learned to swallow pills), Tegretol (gave me a rash), Lamictal (this fall started giving me liver problems), Topomax (started making me stupid).

Since this fall I have gotten onto Extended Release Keppra and Extended Release Depakote. Still I am having one tonic clonic seizure a week. I had to give up driving and that is driving me crazy. I had a seizure 2 nights ago, so this still isn't right. My docs want to get me on Banzel, but I am going to have to go through their outreach program, because it is really expensive. Has anyone had success with Banzel? Is is successful with clonic tonic and myclonic seizures?

Thanks

 

[AlohaBird]

For me Tegretol was like being a drunken zombie. I got partial control with phenobarbitol and full control with pheno+depacote. Every brain is different. You and your neuro have to tinker around together until you find what works for you.

I would also highly recommend looking into the ketogenic diet as a way to get full control on less meds. I've been able to cut mine by half.

 

[Cint]

Hi ATLMayhem,

I'm sorry to hear you're still having TC seizures. I was diagnosed with E over 30 years ago and was having CPs as well as TCs. At least, we did get the TCs under control, but I do occasionally have CPs. I also had to give up my driving privileges, so I do know how difficult it is. I've been on 12 AEDs, but never tried Banzel. Currently I take Keppra and Topamax.

Here is what the www.epilepsy.com has to say about Banzel:

http://www.epilepsy.com/medications/rufinamide
Forms
Banzel is marketed in the United States by Eisai, Inc. The name or appearance may differ in other places. The dose (measured in milligrams, abbreviated ""mg"") will usually be the same.

Who should not take Rufinamide?
People with types of epilepsy other than partial seizures or Lennox-Gastaut syndrome, for example Juvenile Myoclonic Epilepsy, should probably not take rufinamide until further clinical studies are done for these other types of epilepsy. If you have any questions about what type of epilepsy you have, ask your doctor.

 

[ChefRG]

How often do you or did you get seizures being you only had them Nocturnally?

 

[Cint]

I would also highly recommend looking into the ketogenic diet as a way to get full control on less meds. I've been able to cut mine by half.

The ketogenic diet is mostly designed for kids with difficult to control seizures and the true keto diet is very difficult to follow. What would be better for adults is the Low Glycemic Index Treatment (LGIT). It monitors the amount of carbs consumed daily, sort of what I do, since I have diabetes, also.

http://www.epilepsy.com/learn/treat...ietary-therapies/low-glycemic-index-treatment

What is the Low Glycemic Index treatment (LGIT)?
The LGIT for epilepsy was developed in 2002 as an alternative to the ketogenic diet (KD) for treatment of intractable epilepsy. The LGIT monitors not only the total amount of carbohydrates consumed daily, but focuses on carbohydrates that have a low Glycemic Index.

What is Glycemic Index?
The Glycemic Index of a food refers to how high that food raises your blood glucose after eating, compared to a reference food such as sugar.
There are different features of foods that affect glycemic index. For example, dietary fiber reduces glycemic index. The rate at which a food is digested and absorbed also affects its glycemic index – so buttering a piece of bread can actually reduce its glycemic index.

And here is more info on the Keto diet:
http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/dietary-therapies/ketogenic-diet

 

[Nakamova]

Found these earlier CWE threads that mention Banzel, they may be of interest:
http://www.coping-with-epilepsy.com/forums/f23/panic-attacks-banzel-22030/
http://www.coping-with-epilepsy.com...rufinamide-severe-epilepsy-11-21-2008-a-5032/
http://www.coping-with-epilepsy.com/forums/f36/has-anyone-tried-banzel-7033/

 

[AlohaBird]

The ketogenic diet is mostly designed for kids with difficult to control seizures and the true keto diet is very difficult to follow. What would be better for adults is the Low Glycemic Index Treatment (LGIT). It monitors the amount of carbs consumed daily, sort of what I do, since I have diabetes, also.

And here is more info on the Keto diet:
http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/dietary-therapies/ketogenic-diet

Ketogenic diets have been most extensively studied in kids with refractory seizures but that doesn't mean it is only for them. They were just considered to be so far beyond hope that such an "extreme" solution was a viable option.

This is silly. Ketosis is not hard to follow at all. The protocol they initially designed was rather high on the bacon and whipped cream side (this is where the outdated notion that it is SOOOOOOO hard comes from) but John's Hopkins has been experimenting with somewhat more moderate plans that yield equally wonderful results and they have been experimenting with adults as well.

Whats so hard about eggs for breakfast and a steak and asparagus for dinner?

I highly recommend the book Keto Clarity by Jimmy Moore as well as The Art and Science of Low Carbohydrate Living by Phinney and Volek. The latter explains the scientific foundation for it and the former is a more practical nuts and bolt book.

I also highly recommend the website and book by Nora Gedgaudas, both called Primal Body, Primal Mind. She is a neurofeedback practitioner and so is approaching ketogenic living from a brain health perspective.


ETA: I have been able to reduce my meds by half by following a keto diet. I'm 52 and did not have refractory seizures.

 

[Belinda5000]

I've finally got the best control ever not the full control though.I've gone more 2 months seizure free, and It's been more 50 years I've had epilepsy, and I couldn't tell you how many combos I've had. It seems my latest combos are the best they do seem to work for me
.I take Tegretol300mg3x day
Topamax200mG 2x day
Phenobarb34.2 MG bedtime