Any Epileptics Here?

yourfitnessenemy

I plan to discuss (re) starting keto for epilepsy with my neurologist tomorrow, with the hopes of weaning off my meds (I've been having horrible side effects, I've tried a lot of them, and I've had enough). I expect this to be met with a completely closed mind, to be honest.

I've tried it before with great results for my migraines. I honestly don't know if it helped my seizures because I don't get them often enough to measure (I went for 2 years without one until July). Have any of you had good luck/support from your MDs on this?

http://www.epilepsy.com/epilepsy/keto_news_march07

KayNowayJose

Hey there, I'm Kayla :-)

I have been on Keto since late September. I started cutting out carbs July-August before that, but officially had it approved by my doctor around that time.

My seizures have been all over the board since they started. Mine come from my right frontal lobe and started when I was 17 (although 2 years before my seizures started I was constantly dizzy where I could barely stand, which my primary doctor attributed to my diet/menstrual cycle). I have had all sorts of different kinds, but this past year and a half, they have been absence. I have had some where I would have 4-5 in a day, or 1-5 a week, or just one or two a month, or go 5 months without one. Again (of all varying kinds, sometimes, one after another).

Since starting Keto I have been seizure free and have seen a significant impact of change in my overall health. Most days I have an amazing amount of energy (which as you may know...is sometimes difficult with the medicine/fighting off seizures), and my reactions to the medicines have decreased. I have also been able to decrease my meds by 25mg. Not much compared to how much I'm on, but baby steps, I see my doctor in a month, maybe she'll take me off more! :-) This is still a huge deal to me because in 7 years my medication has went from 25mg a day-3600mg a day. I'm decreasing, not increasing! :-O

I've also lost weight, and noticed that I'm overall able to CONTROL my seizures better (I sometimes get the immediate aura, and other times get the LONG day stretch days before hand letting me know I need to do something/aka a seizure is coming, if I push myself, I'm gonna fall haha.) And I'm better able to control when in long stretches because for once in my life I can actually see how my body (and brain/brain function) responds to what I eat.

I would have expected for many of my past doctors to be closed minded as well. Before my current doctor (she is an epilogist), I had went to 5 neurologists in 6 years, each one clueless as to why I was not responding to medicine, and kept on testing and testing (cha ching!) and going, "I don't understand...I'm going to send you to Dr...because I feel like they will help you better"

The doctor I have now, within two hours of being in her office I was astonished! I had never had such a detailed FIRST appointment. Her main philosophy is that people with epilepsy can be active, productive, healthy members of society with the right team, diet and monitoring. She brought up my work, and how they respond to my seizures, and was even curious about how management treats me. She also brought up my goals with children. Things I had attempted to talk to other doctors about, but they were always aimed on, "We'll get this under control now....then work on that later'. With that conversation, she understood how I would like to mange my meds and diet, and WHY. Best for my OVERALL health, which would impact my immediate health. My point being is, throughout it all, I learned the importance of finding a supportive doctor. And goodness did it take me forever to learn this. And forever to re-book a new appointment for ANOTHER doctor!. 6 month waiting list for her for that first appt!

You are welcome to add me :-)

yourfitnessenemy

Awesome, thanks.

Mine also originate in the frontal lobe (left). My BP is also really low so I'm going to ask if that could be contributing? I didn't think I was having seizures but having more fainting or low blood glucose or BP issues, but the EEG picked them up (though those things could cause seizures I guess?).

KayNowayJose

I definitely think it would be a wonderful idea to bring those things up to your doctor. Although my blood pressure and blood results always came back normal. But I did have to go through 3 EEGs before my seizures were actually seen on the brainwaves. My doctor had told me the frontal lobe area is often the most difficult seizures to track. So yeah, I can relate with the difficulty of 'finding the root'.

And yeah, those two things could contribute to the seizures, many things could. I mean, I know there is obviously something wrong with my frontal lobe but I have to watch what triggers it, just like some people have to watch what triggers their headaches :-P I know for me, I have to watch sleep, diet, exercise, vitamins, and meds. I slip up on one of those and I'm taking a risk. I'm not doomed, but I'm more likely to have one (as are most epileptics).

The doctors at one point thought mine were from PTSD or just a result of the stress (therefore I was always having them when stressed). The difference was with the third EEG though, I was pulled off a larger amount of medication, and was allowed to eat more than hospital food. So my fiance brought me chocolates (TONS) to comfort me. So I was staying awake, and gorging on chocolate, watching tv....plus it was my time of month(which always seemed to be a spike for me). Got up to exercise (as they encourage sometimes), and wham, doctors proclaimed it to be the worst one they've ever had on the floor.

Thats when I knew there was something wrong with the way I ate. I brought it up then before I left. Started making small slow changes. Looking back, I could always see my body respond to my blood sugar levels, but I was responding in the wrong ways by making quick fixes. Now, I am more cautious.