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  4. Epilepsy with some of Rosalind’s experiences and some details:
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Epilepsy with some of Rosalind’s experiences and some details:

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Offline rosalind dna (OP)

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Epilepsy with some of Rosalind’s experiences and some details:
« Reply #60 on: 17/06/2008 21:01:27 »
Quote
First, let me clear up one thing. When I referred to it as a blessing, I meant only in the sense that it prevents me from a lifetime of Heart, Lung, and other problems associated with Smoking. I also understand about 'never-ending' days of seizures - I had about a dozen such days the last time I smoked, in the early 80's. The one thing my 'triggers' have in common is they are all things nobody needs to begin with. My sensitivity to them is a sort of warning system, that helps me avoid such things. 

yes that true about not smoking and heart or lung disease but they can happen through other problmes. Even as I was once informed that too many very strong seizures might cause a heart attack or as I have known sadly be fatal.
 
Quote
'Hot Toothpicks' are toothpicks that have been flavored with that artificial cinnamon flavor that I mentioned. They are common in the US, at restaurants and convenience stores. The one good thing about this flavoring is that it is prohibited from food.

Thanks for telling me about the "Hot Toothpicks" now I will be able to understand that better.
I don't want them.

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Rosalind Franklin was my first cousin and one my life's main regrets is that I never met this brilliant and beautiful lady.
She discovered the Single DNA Helix in 1953, then it was taken by Wilkins without her knowledge or agreeement.
 



Offline skeptic

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Epilepsy with some of Rosalind’s experiences and some details:
« Reply #61 on: 18/06/2008 22:10:07 »
Quote from: rosalind dna on 17/06/2008 21:01:27
Thanks for telling me about the "Hot Toothpicks" now I will be able to understand that better.
I don't want them.
And you truly don't need them. The real thing is better.

Quote from: rosalind dna on 17/06/2008 11:55:58
So how do you stop the triggers being a problem during the full moon because
as we know that it happens once every month???
I learned a lot about my seizures as a child, partly because an idiot with a medical degree convinced my mother that I was 'bringing them on' myself. My condition remained untreated, and my mother and I 'studied me' for years, as if I was some medical anomaly. We paid close attention to my diet and activities, looking for patterns. Among the ones that held true:

*My episodes always began while I slept, with a gran mal seizure followed by several more over 2-3 days.
*The things I found to be triggers were just as bad no matter when I had them, and best avoided all the time. The only one I couldn't avoid was the moon itself.   
                        (To Be Continued)
« Last Edit: 19/06/2008 01:57:42 by skeptic »
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Offline rosalind dna (OP)

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Epilepsy with some of Rosalind’s experiences and some details:
« Reply #62 on: 18/06/2008 22:20:34 »
Skeptic, how odd as that is what my late Mum used to say to me,
that Rosalind you are bringing the saizures on yourself or just imagining them. I was most definitely not and won't.

Also I always thought that nocturnal seizures were the Narcolepsy ones. not grand mal ones. Then I have only ever had my seizures when I am awake.

But making sure that you eat and sleep enough with the right foods is good help to the  control of seizures and taking your AEDs

Also I found this link to an old TNS interview.
http://www.thenakedscientists.com/HTML/content/interviews/interview/750/

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Rosalind Franklin was my first cousin and one my life's main regrets is that I never met this brilliant and beautiful lady.
She discovered the Single DNA Helix in 1953, then it was taken by Wilkins without her knowledge or agreeement.
 

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Epilepsy with some of Rosalind’s experiences and some details:
« Reply #63 on: 19/06/2008 02:34:45 »
Quote from: rosalind dna on 18/06/2008 22:20:34
Skeptic, how odd as that is what my late Mum used to say to me,
that Rosalind you are bringing the saizures on yourself or just imagining them. I was most definitely not and won't.
Yes, people must be really brilliant to think that we would want to have one, even if we could bring it on! They apparently don't see that we are in our own personal hell.
Quote from: rosalind dna on 18/06/2008 22:20:34
Also I always thought that nocturnal seizures were the Narcolepsy ones. not grand mal ones. Then I have only ever had my seizures when I am awake.
Narcolepsy is actually a sleep disorder that causes excessive daytime sleepiness and 'nodding off' at unusual times. It is often confused with Epilepsy, because they sound so similiar.
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Offline rosalind dna (OP)

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Epilepsy with some of Rosalind’s experiences and some details:
« Reply #64 on: 19/06/2008 10:25:54 »
Quote from: skeptic on 19/06/2008 02:34:45
Quote from: rosalind dna on 18/06/2008 22:20:34
Skeptic, how odd as that is what my late Mum used to say to me,
that Rosalind you are bringing the saizures on yourself or just imagining them. I was most definitely not and won't.
Yes, people must be really brilliant to think that we would want to have one, even if we could bring it on! They apparently don't see that we are in our own personal hell.

Quote
I wouldn't say brilliant and but more with parental feelings to care for their child or children. Now I don't think of my seizures as personal hell, just a part of me, like being myopic too.

Quote from: rosalind dna on 18/06/2008 22:20:34
Also I always thought that nocturnal seizures were the Narcolepsy ones. not grand mal ones. Then I have only ever had my seizures when I am awake.
Narcolepsy is actually a sleep disorder that causes excessive daytime sleepiness and 'nodding off' at unusual times. It is often confused with Epilepsy, because they sound so similiar.

Quote
But Grand Mail seizures as I said in my initial post are now called Tonic Clonic seizures and the petit mal are now called atonic ones.
I do happen to know that Narcolepsy is a sleep disorder but then I do my research carefully.
In fact the word Epilepsy originates from ancient greek, I think. I will check.
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Rosalind Franklin was my first cousin and one my life's main regrets is that I never met this brilliant and beautiful lady.
She discovered the Single DNA Helix in 1953, then it was taken by Wilkins without her knowledge or agreeement.
 



Offline skeptic

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Epilepsy with some of Rosalind’s experiences and some details:
« Reply #65 on: 28/06/2008 19:32:08 »
Quote from: Andrew K Fletcher on 15/06/2008 16:08:07
Hi Skeptic, you have done a grand job of identifying trigger factors!

The mention of lunar phases and how they relate to Epilepsy, albeit anecdotal evidence is fascinating to myself and for my research it provides a connection between ourselves and the way gravity drives the circulation. I can see patterns emerging from many presumed unconnected medical conditions and yours fits the pattern perfectly.

Andrew, You got me curious, is any of your research or sources published? I, too, am a truth seeker, as you may have guessed, and I would really love to find some serious thoughts(outside of my own)on the subjects of cosmic and gravitational influences on our physiology.

The most recent thing I've seen was a few years ago, when a large American research hospital announced publicly that lunar phase effects on people with Epilepsy and other neurological disorders are psychosomatic or coincidental. In doing so, they discouraged future study, and they failed to consider the numbers of us that notice the correlation after the fact.

Any sites, studies, or publications that you can point me toward would be appreciated. 
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