My Personal N=1

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AlohaBird said:
Last night, or rather early this morning, I did have a partial. When they start in one area, for me it is always the left arm, and I can grab ahold of that arm with my other hand I can make it stop before it goes full blown. I read about it in a book and it is really amazingly effective. The seizure just shuts off like the plug was pulled on it. No after effects of mush brains or anything.
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I have been following all of this. It's very interesting.

My partials seizures frequently start with my left arm getting heavy. I will try that next time it happens if my fingers/hands will cooperate. I have psoriatic arthritis and am in a flare. I am typing
with 2 fingers.

I'm very tired right now because I am tapering up on my lamictial. I finally tracked down my main trigger but am having trouble avoiding the trigger when I am out in public/work.
 
MAB said:
I have been following all of this. It's very interesting.

My partials seizures frequently start with my left arm getting heavy. I will try that next time it happens if my fingers/hands will cooperate. I have psoriatic arthritis and am in a flare. I am typing
with 2 fingers.

I'm very tired right now because I am tapering up on my lamictial. I finally tracked down my main trigger but am having trouble avoiding the trigger when I am out in public/work.
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Perhaps you could wear something loosely around your left arm that you could then tighten like a tourniquet if you needed it, perhaps a bit of rope with a slip knot in it.
I was thinking about getting one of those upper arm cuff style bracelets to give me something solid to grab onto and squeeze.
Let me know if this works for you.

What have you determined is your main trigger?
 
My main trigger is odors. I have managed to eliminate most odors at home but I do miss my essential oil diffuser.

I can't always get away from them at work and other places. I'm an apartment manager and if someone comes into my office with perfume, hair spray, tobacco odor, etc. it sets the seizures off. I no longer inspect vacant apartments unless our maintenance tech tells me it's okay for me to go in. I rely on him to take pictures if there are any damages. Once it's completely cleaned, painted and aired out I will go in. I avoid the cleaning section in stores and perfume counters, etc.

I talked to my doctor's nurse and she said she was told not to wear anything scented.
 
I know things like perfume, tobacco smoke, fresh paint, cleaning supplies, etc. all give me headaches. I've never tried correlating them to my seizures though. Interesting.
 
AlohaBird said:
I know things like perfume, tobacco smoke, fresh paint, cleaning supplies, etc. all give me headaches. I've never tried correlating them to my seizures though. Interesting.
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I was having SPs almost every morning. I would get up with the intention of going to the gym but would plug in my diffuser, sit in my rocking chair and check email first. Most days I didn't make it to the gym. I would mange to get out of the chair in time to get ready for work but it was a battle with myself.

I packed up the difusser and all the oils i a plastic bag and haven't had anymore start at home.
 
That's great that you figured out that correlation MAB. Sometimes when something is such a part of our daily routines, it becomes like background noise and we don't even notice it or consider that it might be connected to our seizures. There have been threads lately about habitual alcohol and soda drinking. I think these things too have a way of becoming just a normal part of the day for so many people that they never stop to question if it could be a trigger.

Nak, take a look at these:
http://portableaudio.engadget.com/2005/12/30/audiobones-bone-conduction-earphones/
Looks like the updated version of the bone-fone.
 
Those "audiobones" look cool AlohaBird! It looks like they're mostly available in Japan and Europe right now, so I'll need to wait to check them out...
 
I hope you're still having good luck going off your meds. How often did you have seizures? Just wondering.
 
I'm doing well , thanks donding. I've been at 50% on my phenobarbitol for two weeks now. I think given what Nak said about the clearance rate of pheno, I should give it another week before baking down any further. I have a pill splitter (somewhere?) so I could do this in half pill increments.

Taking the full Rx and not doing anything stupid like heavy drinking or going 2 days without sleep, my seizures were completely controlled. I'm just wanting to avoid long term build up in the liver and kidneys.

With the full Rx I can get away with some drinking, some unhealthy food choices and such.
With the reduced meds I just have to be more careful but I can accept that tradeoff.

I had another session with my Hawaiian healer today. That guy has got the most amazing hands. He is working on my vagus nerve, something I found interesting as that is exactly what the VNS surgery is supposed to do. He is trying to remove blockages (caused by patterns of tension, prior injuries and surgeries, etc.) and let the nerve impulses along the vagus nerve flow freely.
 
I'm hoping getting rid of my aspartame addiction will help me back off then do away with the meds. We'll see. I'm gonna give it about 6 to 8 months then slowly go off them. I've never gone six months without a seizure before.

One of the many neurologist I have had over the years wanted to do a vagus nerve stimulator, but he said it wouldn't control all types of seizures so I choose not to do it. I've got grand mal, petit mal and absence seizures so I'm doomed...lol
 
To piggyback off what Naka said...I personally fasted (sun up to sun down, one meal a day, no meats sweets or alcoholic treats) during my trial these past two months I my overall health was greatly improved. I am a huge advocate of coconut water and oil because of the potassium and monosaturated fats.

Also great look on killing the fake sugar, I've read it causes health problems beyond epilepsy. This picture I see on social media says it all.

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I also began weight-bearing exercises and swimming (in front of a lifeguard) to train my central nervous system to handle a greater load. Your CNS helps prepare your body for rigorous training and I used to train it a ton to help fight off partial seizures from turning into tonic-clonics when I was a teenager. I'm not certain how much it helps, but I will say that I slept better after 30 minutes of lap swimming, which definitely helps a person with TLE
 
lindsayschu2 said:
It was 78 degrees this weekend! Well heck, the guy should go on tour!
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Wow, that's pretty nice weather. He can stop in Ohio too although the weather isn't that great right now, but it's getting better every day.
 
It's 6:50 PM here and is still 81 degrees...Thank goodness winter is gone...finally.
AlohaBird I'm sorry didn't mean to hijack this thread
 
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