My Personal N=1

AlohaBird

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At the age of 52, after having had E for 30 years I have decided that a change in approach is called for. The biggest argument against many "alternative" treatments is that they are not proven at the level of large scale double blind placebo controlled trials.

So????????

I'm 52. I don't have forever to sit around and hope that the research will eventually come through. I've had 30 years of the "best" that allopathic medicine has to offer, medications that are partially effective at best and that come with a huge laundry list of side effects that only get more serious with the cumulative effect of more decades.

So this thread is meant to be the chronicle of my own personal n=1 study. I am not claiming that what works for me will work for anyone else.

So, the study cohort of this n=1 is one 52 year old retired college professor with a thirty year history of nocturnal tonic clonic idiopathic seizures. Currently taking phenobarbitol and depakote but looking to decrease the quantity. I'm not positive how much I will be able to do this, but I'm sure as hell going to give it a try. What do I have to lose?

I just finished reading a fascinating book, "Treating Epilepsy Naturally" by Patricia A. Murphy. This book has shifted my thinking from, "My body is broken, life sux", to "My body is trying to tell me something. Maybe I should do a better job of listening."

In upcoming posts I'll detail my multi-front plan
 

AlohaBird

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This openness to holistic methods of treatment does not mean that I am going to be wasting my time and money chasing after all the latest snake oils du jour. I'm sorry if it sounds snobbish but, I'm smarter than that. I'm an academic by trade. I understand how research is done. I recognize junk science and manipulated stats when I see them.

If a treatment has some promise, I'm willing to give it a try. But I'm also smart enough to figure it out when something is actually harmful (as I did recently in experimenting with melatonin).

I'm in kind of a unique position in life in that I don't have anyone other than my dog relying on me to do anything. I'm single and retired and living in a tropical paradise. Also my seizures are exclusively nocturnal. So if something doesn't work well, the absolute worst thing that could happen is a crappy night and a sore tongue the next day.

All for science, eh? Nothing to lose and everything to gain.
 

AlohaBird

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So. A partial ongoing list of the aspects of my new holistic treatment plan:

1)Weekly Lomi Lomi healing bodywork treatments. This is an ancient Polynesian form of medicine that is sort of like massage plus non force chiropractic and herbal medicines.

I just had my first treatment today and i feel AWESOME.

My Lomi Lomi guy has recommended two things so far diet wise, coconut water for hydration and electrolytes. I had no idea how much potassium was in that stuff.
He also recommended that I get some noni juice
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3477557/
something that is backed up by multiple sources. So I have some of that on order from Maui.
 

AlohaBird

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1)Weekly Lomi Lomi
2)Daily exercise. Not super heavy, just getting out there in the fresh air and getting the blood pumping. There is a four mile round trip walk from my house to the cliff overlook over the Kalaupapa peninsula where the leper colony used to be. It is a spectacular view and well worth the walk.
3)Daily vitamin D treatment. #2&3 are a two-fer

4)Things that are "on the menu"
Organic produce most of which is local, lots from my yard even.
Grass fed ruminant meats. Locally grown beef, lamb, and venison
Wild caught seafood. Fresh and local.
Farm fresh cage free eggs.

(I believe in the premise that seafood and ruminants are the best at converting the nutrients of the environment into ones we can use. Pork and poultry are omnivores and so have a less favorable O3/O6 profile. If I could find wild living ones such as the wild boar that the local hunters get now and then, I would be open to that as a treat.)

beverages: coconut water, Teechino (an herbal roasted coffee substitute that is mostly dandelion root), herbal teas including African Rooibos, Pelegrino water with a splash of non-sweet juices such as lemon, lime, cran, noni.

Snacks: all parts of the coconut, my home made venison jerky, fruit, carob chips. But I don't really snack that much.

Things that are "off the menu":
Booze, caffeine (this one is tough since they grow some delicious coffee just down the hill from me), all refined sugar. Basically fruit is my candy.
 

marika853

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Good Luck Aloha Bird. My only concern, for you, is that if you do have a seizure, you live alone. How will you know? Most of us don't remember them. Mine also started as nocturnal but graduated to daytime. Granted I was under a lot of stress and menopause.
Just wondering.
Still wish you the best!
M
 

Cint

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My only concern, for you, is that if you do have a seizure, you live alone. How will you know? Most of us don't remember them.
Are you talking about not remembering the nocturnal seizures or daytime seizures? I definitely remember having a seizure and I live alone.
 

Nakamova

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My Lomi Lomi guy has recommended two things so far diet wise, coconut water for hydration and electrolytes. I had no idea how much potassium was in that stuff.
It's also high in magnesium. I think you get about 15% RDA for both nutrients. I'm a big magnesium fan (also as N=1). I'm not a fan of the taste of coconut water however, so I throw it in smoothies.
 

marika853

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Cint,
I don't remember my nocturnal seizures. When I first started having them I woke up one night to EMT's standing in my bedroom cause my husband had called them.
So, no I don't remember.
M
 

AlohaBird

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Good Luck Aloha Bird. My only concern, for you, is that if you do have a seizure, you live alone. How will you know? Most of us don't remember them. Mine also started as nocturnal but graduated to daytime. Granted I was under a lot of stress and menopause.
Just wondering.
Still wish you the best!
M
All done with menopause and I think I have found the lowest stress place on earth. People here wave to each other as they pass in cars instead of flipping each other off.
I appreciate the concern but I've lived alone most of the last 30 years and managed just fine. I sometimes remember in a kind of hazy way going into the seizure. And the foggy brained sore tongue feeling is pretty evident even with the times I don't remember.
 

AlohaBird

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It's also high in magnesium. I think you get about 15% RDA for both nutrients. I'm a big magnesium fan (also as N=1). I'm not a fan of the taste of coconut water however, so I throw it in smoothies.
I think it tastes wonderful especially chilled on a hot day. Yes, it is like an all natural alternative to Gatorade. Wonderful stuff. And not expensive at all here.

In fact, everybody warned me about how massively expensive living in Hawaii was going to be but I've found that this is only partly true. If you eat a lot of packaged stuff that comes in from the mainland like sodas, Wonderbread, and beer, yes, it is seriously expensive to live here. But if you are eating the locally grown produce and protein it's really quite reasonable. More good incentives to keep the diet clean.
 

AlohaBird

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I've been following the Primal diet for several years now. Primal is basically the version o f paleo that allows for dairy products.
So, since Jan1, 2009 I have completely cut out gluten grains, corn, soy, and anything made from those things (e.g. corn and soy oil).

Having read up on the GARD diet plan recently, I realized that I was already three quarters of the way to the glutamate/aspartamate restriction. The only holdout was dairy. So, in the past couple of weeks I have bid a tearful adieu to my beloved cheeses and bought a yogurt maker and some starter culture to make coconut yoghurt.

Dr. Symes' contention is that paleo works but not for the reasons it thinks it works. He says that by getting rid of all artificial gunk in your diet (the stuff where you need a chemistry degree to read the label) and by getting rid of the evolutionarily inappropriate grains and cow milk, you have gotten rid of most of the glutamate and aspartamate that is so prevalent in the modern diet.
I think there is room for both paleo and the GARD to be right. The GARD is essentially the hard ass version of paleo but it doesn't concern itself with counting carbs.
 

AlohaBird

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So I go back and forth about weather or not ketosis is really necessary or even relevant. Perhaps it is enough to just eat a really "clean" diet.
It's undeniable that ketogenic diets work but what if they are working by another means.
Thoughts?
 

daviscy60

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AlohaBird I think what you are doing is great. Plus like you said you live in the perfect place for this. I'm so interested in how things work out for you. Keep us posted on updates. I myself have had seizures for 30+ years. Not bad and for the most part controlled with meds. Started having seizures again 1 1/2 - 2 years ago. Was going thru menopause but also had a mineral analysis done at health food store. Had big imbalance of magnesium / calcium. I can't help but wonder if my eating habits could have caused the start of seizures again. Keep us posted on how things progress with what you are trying.
 

AlohaBird

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Thanks. It would be really fun to do an N=20 or so using this setting. Bring 20 people with epilepsy here for say a month of clean food grown in rich soil, clean air and water, exercise, sunshine, sea water (great for transdermal electrolytes) Lomi Lomi massage, no stress, no light or noise pollution (important for good sleep) and record the results. I betcha there would be a drop in seizure frequency.

I know my eating habits for the year or so before I moved here were not as good as they could have been. I was taking care of my father in his final years. His passing was very stressful for me and then there was all the other family drama that comes when money is involved (my sister basically stopped talking to me because Dad left stuff to me and not her).

So I know a lot about nutrition and exercise but I have been failing to walk my talk for a while. If I do a little soul searching, I can admit that I am pulling out of a bit of an emotional funk. This multi-front program is me re-committing in public (which keeps me honest) to taking this seriously.
 

daviscy60

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Makes me jealous. I know I've been on keppra for 1 1/2. Can't stand the side effects and I've never liked the idea of what AED's do to your body. Because of the side effects of keppra I've been doing some research on diets to see if I changed my eating if I might could at least cut back on meds
 

AlohaBird

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Well, so far, before I even found this forum, I have been able to cut both my pheno and depakote back by 25% each. I did that with a super strict keto diet and it worked but there is a level of stress involved in all the counting and measuring grams of macronutrients that kind of defeats the purpose.

This time I am going to see if I can continue at that med level and even reduce it by just staying with a super strict paleo/GARD protocol or as I like to call it, Good Clean Eating.

I like what Dr Symes has to say about glutamate and I know that MSG is a migraine trigger for me (and there is lots of research to back that up as not just an anecdote). So I am really getting careful about things like bottled dressings, sauces, and spices.

It makes me feel ill to remember how much Aspartamate I used to ingest thinking I was being all low cal and healthy.

It helps that there is not much in the way of places to go out to eat here or take out food. But Penzy's will deliver all the spices I want and I'm a good enough cook to make good use of them.

So, if I shop well and carefully and just don't keep stuff I shouldn't be having in the house, there is little chance of any temptation coming along. I live up in the mountains of Molokai on a remote rural road and so driving into town to buy something at ten pm is not really an option. Besides everything here shuts down early. There are no 7-11's or 24 hr Denny's.
 

Nakamova

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Two quick questions:

1. Is aspartamate different from aspartame? I've cut out aspartame (I was dedicated Tab drinker for many years) and avoid other artificial sweeteners as well.

2. Does your diet include eggs (apologies if you've already mentioned this).
 

AlohaBird

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Aspartamate is what aspartame breaks down into IIRC. So yes, cutting out the Tab was a good move. I used to use a lot of Splenda making my own lemonade and cranberry juice cocktail.
All artificial sweeteners are out on the GARD/Paleo plan as well.

Yes, my plan includes lots of eggs fresh from the farm cage free and all organic. These are the kind that have the really dark yellow almost orange yolk. It would be interesting to have them lab tested for nutrient content alongside factory farmed eggs.

I've been making my own mayo with these eggs and I have never had it come out so perfectly thick.
 

AlohaBird

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Some other things I have played around with before that I think have a place in this plan:

1)Intermittent fasting (IF). Left to my own devices (without Mom here cooking all the time. She just went home after a month long visit.) I am really fine with only eating one main meal a day, dinner, with maybe a piece of fruit in the morning or a can of coconut water (100 calories and all those electrolytes).

Like today for instance, I went for a walk to the overlook (4 miles) and took a C2O can (the brand name of the Cnut water) with me but that's all I've eaten. It's now 5pm and I'm starting to think about that nice piece of swordfish I bought today with a side greek salad for dinner but I'm not starving. I'm probably in ketosis without even trying (counting and weighing things down to the gram does get to be a drag).

2) Another thing I am going to try adding to my plan is Delta Wave Sleep Therapy. I found this guy, an actual MD, Dr. Jeffrey Thompson, who sells a whole series of CDs. He is interesting in that he is a doctor and a musical composer as well. He has integrated certain frequencies and beats into this music that guide your brain into the delta state, or at least that is the idea. We'll see how it works.
 
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Nakamova

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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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