My Personal N=1

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Fasting

I have noticed for years that I could go for a long time with no activity but as soon as I eat i will have a seizure of sorts.
Now I am weaning Dilantin very slowly and I am starting to feel weird, achy and unsure what will happen next.
Hopefully nothing.
Hopefully I will be able to control things a bit better with a better glycemic index.
This Epilepsy stuff can make you crazy, I try to stay calm but I live alone and I have already had a craniotomy in December, not something that can't happen if I fall down and hit my head.
I wear a helmet most of the time.
I have to focus on it and hope it does its job....
 
Yes, that does sound like you have blood sugar issues involved. You have my profound sympathies. It sounds like what you are dealing with is way worse than the occasional nocturnal seizures that I have.

Just out of curiosity, how long have you gone without eating?
 
I FOUND A NEUROFEEDBACK PRACTITIONER HERE ON MOLOKAI!!!!!!

Happy Dance, Happy Dance, Happy Dance.
He was listed in the weekly local paper classified ads section.

Only drawback, he has never worked with an epilepsy case before. His practice is mostly kids with ADHD and cases of depression or anxiety. Oh well. I suppose someone has to be the first. And I appreciated his honesty about his lack of experience in this.

I have talked with him about my seizures and he is very interested to learn more. Every time we correspond, it is clear that he has been doing a lot of research. He belongs to something called The EEG Institute which is an organization for practitioners so he has their collective wisdom to draw upon.

He wants me to see a regular neurologist first so that we can use them as a resource for advice about medication and such. So I saw my PC MD today to get a referral to fly to Honolulu to see a neuro. Don't know how long that is going to take.

The NFB guy and I were talking about sleep apnea also and I sent him some of the research I have found suggesting that many cases of epilepsy that are exclusively nocturnal yet "idiopathic" may actually be the result of apnea. He said that he used to suffer from sleep apnea himself but that he cured himself with NFB. That's so cool. I didn't know it could be used for that.

I'm so excited!!!!!! This is such a wonderful new possibility.
 
And I absolutely adore my new Primary Care MD.
The one I had before was a really nice guy but you could tell by looking at his seriously obese body that diet and exercise were not very high on his personal priority list.

My new one is female (which is nice because sometimes it helps to be of the same gender) But, more importantly, she is fit and trim and thinks a paleo diet is great and wishes she could get all her patients onto one.

She is also very open minded about things like my Hawaiian healer doing body work and nutritional counseling with me. And she is eager to see what becomes of my new sessions with a neurofeedback practitioner. She doesn't think such things are weird or fringe at all.

She stated flat out that she believes that most all degenerative ailments could be cured or prevented with diet and lifestyle modifications and she likes to explore that element first with all clients with the Rx pad as a last resort only.

I like it. I have found one who is not a "pill pusher".

She agreed with the NFB guy that I should get a neuro consult though if I am going to be stepping down any meds. And she is totally on the same page with me about wanting to minimize my pharmaceuticals. So she wrote me a referral authorization so I can go to Honolulu to see a neuro.
 
Thanks, Lindsay

The EEG Institute (of which my NFB guy is a member) is evidently located in California but they have members all over the US and beyond.

So he has been data mining that site and picking the brains (so to speak) of all his fellow NFB practitioners and he has found several who do have experience working with epilepsy patients and are happy to help.

Isn't the internet a wonderful thing?
 
I saw my Hawaiian healer today and I was telling him all about the books I have been reading by Dr. Perlmutter. Just finished Grain Brain and working on Brain Maker.

It is so cool how cutting edge science and ancient Polynesian wisdom are so much in agreement. Everything right down the line from the notion of your gut being your second brain to including lots of fat in the diet primarily fish oil and coconut. Everything Dr. Perlmutter is saying is just the modern scientific articulation of these age old principles.

The problem with a lot of the health issues here is that people have gotten away from their roots and adopted the lifestyle of white bread and Kraft slices (of orange goo) washed down with a soda for lunch and a candy bar.

My healer is very anxious to read these books because they will give him the clearly written scientific back up he needs to try to convince some of his patients that a more modern lifestyle is not necessarily a healthier one.
 
If you missed it on my ketosis thread, in ten days on a keto protocol, I have dropped 7.5 lbs and one inch off of each of my measurements (bust, waist, hips).

And I've started cutting back on my meds again. I'm down to 50% of the Rx on my phenobarbitol without any of the sleep disturbances (trouble getting to sleep and "rude awakenings" where I feel like a seizure is coming on) that I experienced when I tried the same step back without being in ketosis.

I feel AWESOME!!!!!!

My newest toy that arrived in the mail is my new rebounder (personal sized trampoline).
"Some assembly required" which I will do tomorrow when the lighting is better.
Thanks again to MAB for reminding me how much I missed the one I used to have before I moved here. That will be a good device for enforcing a "no excuses" rule about exercise even if it is raining or mid summer hot out.
 
That rebounder was a tough bugger to put together but I finally got it all safe and soundly up. It is one of the oval ones that folds in three sections for shipping or storage. The hinge mechanism to get it unfolded however is difficult if you don't have someone else holding the other side down. It has a nasty habit of springing back closed and wonking your shin or pinching a finger.

But I persevered and was victorious over technology in the end.
Once it's all folded out it is quite strudy.

That is a fun way to get a workout in. It is harder than it looks. you are bouncing around and having fun and then you stop and realize, "Hoo boy! I just had a serious workout"

I was reading Bernard's post on aromatherapy and traced it back to the study by Dr. Betts. Preliminary no doubt, but interesting stuff nonetheless. I love the smell of jasmine so I ordered some and maybe I can get my Hawaiian healer to help me with the massage part. The protocol is that you get regular massages with the jasmine oil which gets into your blood stream via the skin when you are in that wonderfully floaty peaceful state. Then if you feel a seizure coming on, you take a whiff of the jasmine and the sensory memory brings you out of it. If you have night seizures you can infuse the pillow with a few drops.

Worth a try. Worst thing that could happen is a nice smelling bedroom.
 
Turns out my Hawaiian healer has a friend who is a distributor for essential oils in Honolulu. I wonder how much she charges for jasmine. I already have some on order but that stuff is pretty pricey.

http://www.seizure-journal.com/article/S1059-1311(03)00161-4/fulltext

This is the latest I could find on Dr. Betts' research into aromatherapy. It's a study over ten years but he is not pretending that it is well structured. He basically used the resources and personnel that were available and that changed over the years. People came and went and jasmine was too expensive for their budget when they first started but then some was donated, etc.
Still, despite all the structural flaws, they have come up with results that are pretty impressive.

Until I read the above, I would have considered aromatherapy to be too far out on the fringes of woo for my tastes. Now I'm willing to give it a try. My healer has agreed to help with this. He was also very glad that I printed him out a copy of the above article for his friend with the essential oil franchise.
 
As you've probably noticed, I'm a huge mg fan. I recommend it to everyone, even though docs will say that only huge injections would actually make a difference if one is deficient...
 
That rebounder was a tough bugger to put together but I finally got it all safe and soundly up. It is one of the oval ones that folds in three sections for shipping or storage. The hinge mechanism to get it unfolded however is difficult if you don't have someone else holding the other side down. It has a nasty habit of springing back closed and wonking your shin or pinching a finger.

But I persevered and was victorious over technology in the end.
Once it's all folded out it is quite strudy.

That is a fun way to get a workout in. It is harder than it looks. you are bouncing around and having fun and then you stop and realize, "Hoo boy! I just had a serious workout"

I was reading Bernard's post on aromatherapy and traced it back to the study by Dr. Betts. Preliminary no doubt, but interesting stuff nonetheless. I love the smell of jasmine so I ordered some and maybe I can get my Hawaiian healer to help me with the massage part. The protocol is that you get regular massages with the jasmine oil which gets into your blood stream via the skin when you are in that wonderfully floaty peaceful state. Then if you feel a seizure coming on, you take a whiff of the jasmine and the sensory memory brings you out of it. If you have night seizures you can infuse the pillow with a few drops.

Worth a try. Worst thing that could happen is a nice smelling bedroom.
I'm glad you are enjoying the rebounder.

I also love to diffuse essential oils. I loved to diffuse high quality pure oils and was having seizures every morning when I sat in my rocking chair before going to the gym. My diffuser was on a shelf behind my chair.I would also have seizures when someone would come into my office with heavy perfume or tobacco odor. Once I eliminated the diffuser and upped my lamictial because I can't avoid odors in public I have been seizure free for over a month. I missed my oils so I tried again recently, started slowly. I found out lemon and grapefruit are fine. I tried one of the blends of different oils and started feeling funny. I quickly emptied and cleaned diffuser and threw that bottle of oil away. I will stick with single oils and go slow.

Odors seem to be my biggest trigger for seizures.
 
Hiya MAB,
That article I posted above about essential oils had a whole list of the ones that are problematic for people with epilepsy and another of the ones that proved helpful.
I know a lot of the oils that come packaged for a diffuser are blends of several so you would really have to be sure you knew everything on the ingredients list. So, perhaps all essential oils are not created equal.

I have a lot of trouble with odors too. Things like the cleaning products aisle at the supermarket give me a headache. And most perfumes too.

One of the most interesting things in that research to me was that he said it seemed that people with epilepsy do actually perceive scent differently than others. The people with epilepsy consistently preferred certain scents and couldn't stand others.

Keep me posted if you do any self experimentation on this.
 
Hi, Nak. How much Mg do you take daily and it what form?
Sorry just seeing this now! I posted the form in your mag thread, but here are the details: I take a 125mg magnesium taurate capsule, and I usually take it two or three times a day. If I think I might have trouble sleeping at night I'll take a "super-snooze" supplement which also contains magnesium and taurine. I also tend to eat a lot of mg-rich foods: Spinach, pecans, peanut butter, chia seeds, avocados, yogurt, bananas, dried apricots, and of course dark chocolate. :)
 
Thanks Nak, and thanks for all the great contributions to the magnesium thread.

Why, no, Dear, I am not eating dark chocolate. I am taking my magnesium supplement. <nom, nom> :)
 
Hiya MAB,
That article I posted above about essential oils had a whole list of the ones that are problematic for people with epilepsy and another of the ones that proved helpful.
I know a lot of the oils that come packaged for a diffuser are blends of several so you would really have to be sure you knew everything on the ingredients list. So, perhaps all essential oils are not created equal.

I have a lot of trouble with odors too. Things like the cleaning products aisle at the supermarket give me a headache. And most perfumes too.

One of the most interesting things in that research to me was that he said it seemed that people with epilepsy do actually perceive scent differently than others. The people with epilepsy consistently preferred certain scents and couldn't stand others.

Keep me posted if you do any self experimentation on this.

Sorry I missed the link. Can you post it again?

I would love to be able to post a notice on my office door that says "If you are wearing perfume or smoke heavily, don't come in".

I will be sure to keep you posted.

I was able to interrupt one seizure by jumping up and quickly getting dressed. I Guess moving away from the diffuser was enough to stop the seizure.
 
I avoid the cleaning aisle at the store too and the perfume counters in department stores. I also avoid the seafood department.
 
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