My Epilepsy Experiment. Anyone else have seizures? page

[Paleobird]

I have had grand mal seizures since I was 22 (now 50).
The first drug I was prescribed was Tegretol but the side effects of it were so horrible that I chucked it and went unmedicated for years. During that time I learned how to at least get some measure of control over my condition through diet and exercise. I cut out all caffeine, booze, and sugar and got into body building. Other than the tofu and the brown rice, I was pretty much primal without knowing it. That really helped but I still had about a seizure per week.

About 20 years ago I was prescribed Phenobarbitol which made things much better. Maybe one seizure a month. Then 7 years ago I added Valproic Acid to the mix and have been seizure free since then. It's wonderful.

Now I have been researching non-phamaceutical ways to deal with epilepsy and it turns out ketosis has been used effectively for ages, but, since the advent of the pills, kind of got forgotten. I am concerned about the long term build up of pharmaceuticals in my body.

So, I'm doing a little N=1 here with myself on a strict keto diet and reducing the medication gradually. I have cut my Phenobarbitol dose by 25% (3 pills instead of 4 per day) (And, yes, my neurologist is being kept in the loop)

So far so good. I'm feeling great and sleeping better and being able to bounce out of bed more easily. I think some of this may be the metabolic suppression side effect of this drug.

I know that there are a few other PBers out there who have seizures. Has anybody done any dosing experiments since they have gone Primal?

[magicmerl]

Good luck.

I assume you are doing this already, but when my father did this (against the wishes of his doctor) when treating his high blood pressure, he kept a detailed log of doses taken and self-measurements (since he could measure his blood pressure at will). Instead of taking a whole 'pill A' and it's attendant side effects, or a whole 'pill B' and it's equally undesirable side effects, he managed to get down to 1/4 of one pill and 1/2 of the other, with the side effects almost canceling each other out.

Are there any 'warning signs' you get pre seizure that you can be on the lookout for and chart occurrences of?

[Omni]

I thought you may have been doing this already as you had mentioned epilepsy elswhere and seemed pretty keyed up on the Ketosis thing, so I just assumed.
I have no experience in it, but read about it a while back, seems it was the original treatment for epilepsy until drugs became commonly available, but has made a resurgance in recent years particularly in the treatment of drug resistant epilepsy. I became interested when I read about the high fat diet kid, some article in the New York times a few years ago, he had severe epilepsy, he had up to 130 seizures per day quoted, Link below:
http://www.nytimes.com/2010/11/21/ma...pagewanted=all
So I looked into the Ketogenic diet for other health benefits, seems there has been some promising work in other neurological conditions like Alzheimers, although not reversing it did seem to halt progression and Parkinsons they are just starting to do trials.
So good luck with it.

[Paleobird]

Good luck.

I assume you are doing this already, but when my father did this (against the wishes of his doctor) when treating his high blood pressure, he kept a detailed log of doses taken and self-measurements (since he could measure his blood pressure at will). Instead of taking a whole 'pill A' and it's attendant side effects, or a whole 'pill B' and it's equally undesirable side effects, he managed to get down to 1/4 of one pill and 1/2 of the other, with the side effects almost canceling each other out.

Are there any 'warning signs' you get pre seizure that you can be on the lookout for and chart occurrences of?

Yes, I am keeping a log. That is a good idea. I decided to start with the Phenobarb because of the metabolic depression it can cause. It may be a factor in why I need to lower my calories so low in order to lose weight.

As to warning signs, my seizures only happen at night. They are called REM seizures and have to do with the brain wave patterns in sleep. I used to get a lot of nights where I would wake up with a start repeatedly, feeling like a seizure was coming on. This feeling is called a pre-seizure aura. It really messed with my sleep breaking the night up into a series of short naps with nothing realy restful. This would be something that could let me know if I'm pushing it too far.

[Paleobird]

I thought you may have been doing this already as you had mentioned epilepsy elswhere and seemed pretty keyed up on the Ketosis thing, so I just assumed.
I have no experience in it, but read about it a while back, seems it was the original treatment for epilepsy until drugs became commonly available, but has made a resurgance in recent years particularly in the treatment of drug resistant epilepsy. I became interested when I read about the high fat diet kid, some article in the New York times a few years ago, he had severe epilepsy, he had up to 130 seizures per day quoted, Link below:
http://www.nytimes.com/2010/11/21/ma...pagewanted=all
So I looked into the Ketogenic diet for other health benefits, seems there has been some promising work in other neurological conditions like Alzheimers, although not reversing it did seem to halt progression and Parkinsons they are just starting to do trials.
So good luck with it.

I wanted to be "settled in" to ketosis before changing the meds.

That article is talking about a *really* restrictive diet with 90% fat. This has been show to work really well especially for children. They often become permanently seizure free after staying on that plan for a while.

Johns Hopkins has been doing a lot of research on adults lately using something they call the Modified Atkins Diet and I am following their guidelines for macros while staying Primal (no fake bars or shakes). The MAD is 64%fat/ 30% protein and 6% carb. That is really strict on the carbs but it allows you to have a side order of protein with your fat.

[avocadogirl]

I'll have time to post more later. I have partial seizures. I used to be on Topamax. I underwent neurofeedback sessions that effectually ended my need for meds. I still do neurofeedback but only every 4-6 months.

So, my neighbor's daughter has epilepsy and was on a ketogenic diet for 2 years under the supervision of Johns Hopkins University-Hospital. Unfortunately, it didn't work for her but it did work for several of her cohorts in the same study. The daughter had an genetic anomaly similar to Fragile X and therefore pervasive developmental delays beyond just the epilepsy.

I'll be interested in your experience. I'm primal but not ready for ketosis yet.

[avocadogirl]

I wanted to be "settled in" to ketosis before changing the meds.

That article is talking about a *really* restrictive diet with 90% fat. This has been show to work really well especially for children. They often become permanently seizure free after staying on that plan for a while.

Johns Hopkins has been doing a lot of research on adults lately using something they call the Modified Atkins Diet and I am following their guidelines for macros while staying Primal (no fake bars or shakes). The MAD is 64%fat/ 30% protein and 6% carb. That is really strict on the carbs but it allows you to have a side order of protein with your fat.

Wow, I posted before even reading this new post of yours.

If you want to visit Johns Hopkins, you have a place to stay not too far away. We are just outside the Beltway.

[Paleobird]

I'll have time to post more later. I have partial seizures. I used to be on Topamax. I underwent neurofeedback sessions that effectually ended my need for meds. I still do neurofeedback but only every 4-6 months.

So, my neighbor's daughter has epilepsy and was on a ketogenic diet for 2 years under the supervision of Johns Hopkins University-Hospital. Unfortunately, it didn't work for her but it did work for several of her cohorts in the same study. The daughter had an genetic anomaly similar to Fragile X and therefore pervasive developmental delays beyond just the epilepsy.

I'll be interested in your experience. I'm primal but not ready for ketosis yet.

I would like to hear more about the neurofeedback when you have time. Thank you.

[Paleobird]

Wow, I posted before even reading this new post of yours.

If you want to visit Johns Hopkins, you have a place to stay not too far away. We are just outside the Beltway.

I appreciate the offer. They have avery long waiting list to get into their study group and they only take people for whom medication is not effective so I don't qualify. The drugs do work for me but I'm concerned about the long term effects.

[solstice]

Yes---I too have had seizures---grandmals that started around the time I started menstruating (14). I stayed on Tegretol but went to extremely low doses---so low that my doctor said they couldnt be having any kind of protective effect (but I could tell when I did NOT take it, so I didnt really care what the docs said). My last seizure was when I was 23 and newly married---messed with my system by going on birth control and I think that is what triggered the seizure. I stayed on meds through my two pregnancies (still wondering how that has negatively affected my kiddos), but went off all meds about 2 years ago. I have continued to be seizure free and try to be diligent about eating a clean diet---especially the week leading up to my period! Paleobird---are you still menstruating? Maybe post menopause you'll have better control of seizures.

I too only got them at night...either right as I was drifting off to sleep or waking in the morning.

Not keto here, but have gone really low carb at times---never felt that great doing it, but it was the only way to put a sig. dent in my weight. I'm probably higher carb at the moment (not tracking, but randomly eating some GF grains at times), and have been avoiding the scale, but I do feel pretty good on this way of eating so far