My Personal N=1

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Well, I figure that there is probably not a singular cause for my epilepsy so there is probably not a singular treatment. Hopefully the combination of all of these factors will do the trick.
 
No! Please don't go vegan, Nak. Your neurons' myelin sheathing needs animal protein even more than that of a person without epilepsy. Do you eat eggs? Fish?

There is a reason why vegans need routine B12 shots. A person who is already very healthy can tolerate being vegan but I don't think it is really healthy option for anyone much less for someone taking AEDs which can interfere with nutrient uptake. I think the reason you see people saying, "Going vegan saved my life" is because they gave up all the sugar and chemical additive gunk at the same time they gave up the meat.

I can also see that, if one has no access to grass fed protein, then cutting down on the meat would be a good thing in order to avoid the "second hand gluten" from grain fed animals plus all the hormones and antibiotics from factory farming.

The thing paleo and vegan folks have in common is an abhorrence for factory farming. The paleo contention however is that the evils attributed to meat eating are really only about factory farmed meat eating with a supersize order of soda and trans fat fried potatoes to go with it.

I know that the decision against meat on moral grounds is a deeply personal one and I get the vegan "horror film" point showing how factory farmed animals are indeed kept in horrific conditions. Those objections lose a bit of their punch however when the animal involved (who would not have even existed if not for human hands) spends its longer than natural lifespan peacefully grazing on grass, is well cared for, and then ends its life with no pain or fear and goes to nourish the bodies of grateful humans. That, to me, seems perfectly natural.

Thanks for the link about coconut yoghurt! I'll check it out.
 
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I have a niece who is vegan, and she's about the healthiest person I know. But I take your point about the necessity for plenty of protein. I've had subpar RBC and WBC counts ever since I went on anti-seizure medication, so I do supplement with B12. And I breakfast on hard-boiled eggs every other day (the happiest, most organic free-range omega-3-full ones I can get short of getting my own coop), so I know I would have a hard time replacing that part of my diet if I were to go the vegan route.

Did you read about the 115 year old woman in Italy whose secret is raw eggs (2-3 per day) and staying single? :)
http://www.usatoday.com/story/news/2015/02/17/115-year-old-woman-raw-eggs/23543095/
 
Everybody knows a healthy vegan. But do you know any OLD healthy vegans?
Don't give up those eggs. Your body needs them. Maybe add some shellfish? Who can get sentimental over a scallop? They don't even have a central nervous system to feel any pain when they get shucked. Seriously, as a life form, an apple is much more advanced and complex.

Raw eggs and staying single sounds like a great plan to me.
 
I used to date a guy who had property where you could gather oysters and mussels off the beach when the tide was out. Raw oysters with martinis and then steamed mussels for dinner. And fresh sea asparagus too (I think you may have that where you are). That was heaven... No, I'm not sentimental about animals, it's more a general trend in my family away from meat and dairy. My niece won't eat honey because it's stealing from the bees. But I have no qualms about that.

Anyway, sorry to hijack your thread! I'm looking forward to hearing how your diet/lifestyle experiments make you feel.
 
Agree on the vegan thing! There are a lot of things in quality meats it's hard to find elsewhere. Not that people CAN'T be healthy vegans but you have to supplement to get there. B12 is one--but there are others. I'd add another food product to a pro-health diet--I've become a big fan of bone broths. By cooking bones with joints (I usually use poultry) together with fine cut veggies, it's about as nutritious as anything you can get--very high in electrolytes, glucosamine, gelatin for healthy mucous membranes, many of the things people pay top dollar for in supplement form. I'm also over 50 and B12 gets harder and harder to extract from food--I supplement and know when I haven't been (myos get worse and I get cuts in the corners of my mouth and canker sores). I'm also a big fan of magnesium. I used to see Nak's recommendations on magnesium and still not take it. Once I did, it changed my health and well being dramatically. Aloha, I'm all on board--I couldnt control my seizures through meds, but by completely changing and improving my diet, discovering food allergies, supplementing where necessary, I'm a changed woman.
 
Nakamova said:
I used to date a guy who had property where you could gather oysters and mussels off the beach when the tide was out. Raw oysters with martinis and then steamed mussels for dinner. And fresh sea asparagus too (I think you may have that where you are). That was heaven... No, I'm not sentimental about animals, it's more a general trend in my family away from meat and dairy. My niece won't eat honey because it's stealing from the bees. But I have no qualms about that.

Anyway, sorry to hijack your thread! I'm looking forward to hearing how your diet/lifestyle experiments make you feel.
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I love oysters. And yes, these are all kinds of different sea veggies available here. There is a large asian population several of whom run all the local food stores so they are well stocked on things like seaweed noodles and nori. I am trending toward including more seafood and not as many big slabs of steak. I kind of go by how I feel when I think about a particular food. Does the thought of a steak set my mouth to watering or does the thought of a piece of ahi do it?
 
lindsayschu2 said:
Agree on the vegan thing! There are a lot of things in quality meats it's hard to find elsewhere. Not that people CAN'T be healthy vegans but you have to supplement to get there. B12 is one--but there are others. I'd add another food product to a pro-health diet--I've become a big fan of bone broths. By cooking bones with joints (I usually use poultry) together with fine cut veggies, it's about as nutritious as anything you can get--very high in electrolytes, glucosamine, gelatin for healthy mucous membranes, many of the things people pay top dollar for in supplement form. I'm also over 50 and B12 gets harder and harder to extract from food--I supplement and know when I haven't been (myos get worse and I get cuts in the corners of my mouth and canker sores). I'm also a big fan of magnesium. I used to see Nak's recommendations on magnesium and still not take it. Once I did, it changed my health and well being dramatically. Aloha, I'm all on board--I couldnt control my seizures through meds, but by completely changing and improving my diet, discovering food allergies, supplementing where necessary, I'm a changed woman.
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Yeah, that the thing. If you have to work so hard at making a vegan diet so that it won't harm your health, maybe that is a clue that mother nature is giving you.
Bone broths are awesome. :agree:That is a very paleo thing. I credit daily bone broth with bringing my bone density scan back from osteopenia to healthy again after chemo.
Magnesium is making a big difference for me too. I found a transdermal mag oil and apply it directly to my calves before going to bed.

Yeah, if you have the choice between incomplete control on meds with all the side effects or perhaps not complete control (perhaps I'll get there) and great overall health by using diet and supplements, I know which one sounds better to me.
 
Which brings us to the topic of supplements. I have resisted taking pills for years figuring that my paleo diet was optimal and that most of the vitamin pills people take only end up being flushed away anyway.
But then I've been reading (based on some things I heard on this board) about how many AEDs inhibit the uptake of nutrients so no matter how well I eat I might still not be getting the nutrients I need.

So I have decided to go the middle route on this. Yes, I will take supplements but only from whole food sources, not synthetic pills.

So far I'm taking Moringa leaf powder and tea and oil pressed from the seeds.

http://www.themoringa.com/nutritional-values

which is like taking a broad spectrum multi vitamin+minerals=amino acids. It's really a wonderful plant.

Then I consider a daily can of coconut juice to be a nice treat (I take it on my walks with me but don't let myself pop the top until I get to the end.) It is packed with potassium and calcium. Between the moringa and the C2O water, I don't think I am missing out on any calcium by going dairy free.

Lindsay has just reminded me to make another pot of bone broth. That is the best multi-mineral supplement ever invented.

I have made friends with some local hunters (lots of the young men who have been doing construction work on my house supplement their income by hunting on weekends) My house backs up to a huge track of vacant land where there are wild pigs and deer all over the place. The thing is you can't get to this land unless you cut through somebody's back yard. I have made a deal with the guys that they can use my back gate as long as I get a piece of the kill. And there are a lot of the "odd bits" that I want that they would normally just leave in the field like the organs and bones. Venison oxtail soup is awesome. Next I want to try making some venison liver pate'. Liver is like mother nature's multi vitamin. I get past the squidgy texture issue by making pate'. It also keeps better then.

I also drink lots of Pelegrino water often with a splash of my homegrown lemon juice added. I also have some wonderful asian grapefruit trees. (they are flowering for the next crop right now but I had a huge pomelo for breakfast every day for months when I first moved in in September. So I think I'm getting my Cs. And I've got bananas more than I can possibly eat growing in the yard too so I think I've got the potassium covered.

My bodywork healer guy recommended Noni juice which is a very concentrated dose of antioxidants that the Hawaiian people have been taking as medicine long before westerners knew that there was such a thing as an antioxidant.

I'm getting my iodine from seafood and sea veggies.

Am I missing anything?
 
Nakamova said:
There was an article in Harper's Magazine a few years back about fasting. Among other things, the author mentioned a 1920s Columbia University study that found that seizures were dramatically reduced in epileptics who fasted. As a result, many hospitals adopted this treatment. But when anticonvulsants were developed in the 1930s, fasting therapy was abandoned.

A couple of CWE members have found the Delta Sleep System helpful -- hope it does the trick for you.
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I'm just getting all 7 of the sleep CDs loaded into my itunes today. I will keep you posted on the results.

I have been doing the "eating window" form of intermittent fasting for a long time. I follow the basic premise of The Warrior Diet of one main meal a day, dinner. But this plan also allows for small amounts of calories (like coconut milk in your tea) durng the day to not be a big deal. It also says that the one evening "meal" can last up to four hours. For me that is dinner plus watching TV nibbles.

Of all the on again off again plans,(e.g. Fast 5, Eat, Stop Eat, etc.) this one to me seems like the most benefit with the least stress. I don't have to watch the clock or count calories.

So a typical day of eating for me is tea in the morning. Lately I've been using Moringa tea with a splash of lemon juice but sometimes I have rooibos chai with a splash of Cnut cream. Then I might have a can of Cnut water at some time in the day usually after a walk or other exercise. It's only 100 calories per can and great for rehydration. Then I have dinner around 5pm-ish which is usually either a chunk of meat, or fish, or eggs plus whatever veggies come to hand for flavor and color and variety. Examples: a steak with a mushroom/onion reduction sauce. A piece of salmon with asparagus on the side, homemade chili, a grass fed burger with a side greek salad. Leftovers get thrown into soups with my home made bone broth. Another good way to use up leftovers is with eggs. I make the foldover kind of omelet when there is just a little bit and frying pan sized frittatas when there is more. A frittata is basically fry up meat and veggies of your choice diced up small then pour a dozen beaten eggs over the whole thing and put it in the oven at 350 for about a half hour or until firm.

Snacks are things like olives, cherry tomatoes, my home made venison jerky, carob chips, coconut flakes. Yesterday I made macaroons with shredded coconut and the egg whites left over from making mayo with the yolks.

So I'm used to this way of eating. The only thing that is new for me is dropping the milk products and that seems to be doing me a world of good. My nasal/sinus area seems much more open and unplugged which does good things for sleeping through the night with adequate oxygen to the brain.

The kind of fasting I'm thinking about trying is a longer duration one say 3-7 days. I am glad I found this Moringa tea. It would be possible to fast on tea only while still getting a broad spectrum of nutrients.

Has anybody ever tried a long fast like that?
 
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As James Brown would say, " I fell GOOD!"

I used the Delta Wave CDs for the first time last night and slept Sooooo well. The ipod was there with a dead battery in the morning so I must not have even turned it off. Seriously, I slept from about 12:30 until 10:30 this morning.

In addition to my nocturnal seizures, I often have what I call "rude awakenings" during the night. These are pre-seizure auras I think or perhaps partials of some kind but they jolt me awake in a total panic and it is hard to get back to sleep after that.

So, to have 10 hours of uninterrupted DEEP sleep is like a gift from the gods.

Tomorrow is my second session with my Hawaiian healer and I am feeling incredibly positive about this whole thing.

Yes, this is my N=1 but in this study, the early results are saying that you do not have to accept a diagnosis of epilepsy as a life sentence filled with nothing but fear, pain, and pills. There is another way.

:woot::woot::woot::woot::woot:
 
AlohaBird said:
Everybody knows a healthy vegan. But do you know any OLD healthy vegans?
Don't give up those eggs. Your body needs them. Maybe add some shellfish? Who can get sentimental over a scallop? They don't even have a central nervous system to feel any pain when they get shucked. Seriously, as a life form, an apple is much more advanced and complex.

Raw eggs and staying single sounds like a great plan to me.
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Funny gal!
 
Well, thank you kindly, Dignan. I've driven through Ft. Worth on a cross country road trip. Lovely area. Howdy!

So my food for today ended up being a big slab of fresh ahi. My lead carpenter who has become a good friend called me up and asked if he could bring his catch of the day over. He has the fish, I have the kitchen facilities and the spices and such. He knows how to fillet a fish and I make one heck of a good ahi poke.

Poke is basically raw fish chopped up with a dressing on it that is sesame oil, coconut aminos (sub for soy sauce), thai hot sauce, wasabi, ginger, green onions, and sesame seeds.

There is nothing so yummy as fish that was just swimming around a few hours ago and is now on the table.

He said he bagged a deer yesterday but that it is too frozen solid to debone yet so he is going to bring that by tomorrow and we are going to make jerky. I have a slicer and a dehydrator. And then I can make some venison bone broth too. He said they usually stripo the big chunks of meat off and just leave the bones in the field but this time he brought some of the bones back for my dog. Well the dog is going to have to wait until I'm done with them.

There is something wonderfully sustaining about living off of things that are grown right here as opposed to flying something in from another hemisphere.
 
So there is a crockpot full of venison bone broth stewing and a dehydrator full of what will be venison jerky and some bags in the freezer of venison stew meat and baggies of the doggie treats (skin, facia, tendons and such). How awful would it be to be a dog with a vegan for a human?

Today I made a frittata out of some leftover chili, a dozen eggs and an avocado sliced up in a pinwheel on the top. I just ate half of that for my one meal of the day with some fresh pineapple and a square of 100% cocoa chocolate for dessert.

I have had three nights in a row of sleeping with the Delta Wave CDs and I am really figuring out how chronically sleep deprived I must have been. I feel awesome.

Oh yeah, and I stepped back another pill on the phenobarbitol so I am now taking half of the prescribed dose and I slept great.

Forgive me, I just have to wooot a bit

:woot::woot::woot::woot::woot:
 
I'm doing virtually all the same things you are, with exception of the beautiful hawaiian setting and more supplements--even our diets are similar sans the fish since I'm allergic. I'm reading your blog here with interest. I will add one thought--this is probably a 'me' thing and maybe not a 'you' thing--I seriously have to watch nightshades. I do OK with canned tomatoes in limited quanities, but cayenne and paprika give me seizures and I show signs of inflammation/allergy from potatoes. I haven't tested out eggplant so I don't know. When my gut was in very bad shape, eating anything with cayenne or paprika would give me a myoclonic seizure within the hour. Two days ago I was pressured into going out on a team lunch at work (I don't like to go to restaurants since I can't fully control what I am eating) and had chicken with paprika on it. I seemed to do fine but had a night full of seizures that night, first bad night in over 6 months. I don't think nightshades are bad for everyone but thought I would mention so you can watch and see if they are an issue for you. They have lectins and alkaloids that can be problems for some.
 
Lindsay, that's very interesting to hear about the nightshades! I couldn't find any human studies, but a likely scenario is that they can block the enzyme that breaks down acetylcholine, one of the signaling neurotransmitters. When too much acetylcholine accumulates a potential side effect is seizures, particularly muscle-related ones like myoclonics. It would be great if that were on the list of dietary factors that neurologists could ask their patients about (this is in my fantasy, where neurologists are well-versed in possible dietary factors).
 
Apparently they also mess with calcium--they cause it to be expelled from the cells, and of course low intercellular calcium is a problem too for seizures. I also think it's weird I was reacting to the chili family since it didn't seem like anyone else was, and have been fighting the association for the past year and thinking it had to be something else. But it was way too frequent and impossible to deny the connection was there. Eat nightshades equalled having myos--I was even having myos when I didnt know I was eating nightshades since paprika is hidden in everything, but would look back at what I ate and find it in something like egg salad I had for lunch. I just don't eat anything I don't prepare anymore unless I don't have a choice.
 
Nightshades can definitely be a problem for some people. I'm glad you figured out that connection and are able to adjust your diet accordingly.

I've never noticed a correlation between what veggies I eat and my seizures but I have learned what agrees with me digestively and that turns out to be a lot of the nightshade family. They tend to be the fruits that pretend to be veggies like eggplant, tomatoes, bell peppers. I love a good moussaka.

In fact, I don't really eat much of the other fibrous veggies like broccoli.

My favorite veggies would be:

tomato
eggplant
cucumber
bell peppers
olives
onions
garlic
mushrooms
asparagus

All really fruits, bulbs, or fungi except for the asparagus. In the summertime I sometimes like a salad base for other things like seafood so I will eat lettuce now and then but it is more of a decoration than anything.
For me, veggies should enhance the main protein entree in some way, as a flavoring, garnish, etc.

This morning I looked at my pill box (one of those week long things). It is very humid here and one of my depakote gel capsules had stuck to one of my phenobarbitol pills and stuck in the box. I hadn't taken them, hadn't noticed in the dark. I took them right away this morning because I am trying to keep my med levels even as I back off slowly and not do anything drastic which could be a stressor.

The interesting thing was that I slept just fine. My Hawaiian healer guy said that he recommends at least two weeks at one one med level before considering further reductions. Does anyone have experience with transitioning off meds like this?
 
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