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Author Topic: Epilepsy with some of Rosalindís experiences and some details:  (Read 30805 times)

Offline rosalind dna

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Carolyn thanks and that is fine. I am glad that I have had a chance to share my experiences with you all, also hopefully to help not only myself to understand this condition better but TNS too.
 

Offline skeptic

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       I have had epilepsy since early childhood. Among the "triggers" I've personally noticed are Tobacco smoke(it inspired me to quit), Artificial Cinnamon flavor(the non-food type, used to flavor tooth picks), an unknown ingredient in store-bought ice cream(soft-serve and homemade have no effect), and a Full Moon.
       That last one may get a few laughs(or groans), but it's true. I found out from a friend that the word lunatic was inspired by epilepsy in ancient times. In fact, the bible refers to a "lunatick" boy (Matthew 17:15) taken to Jesus, to be healed. The verse describes the symptoms of "Falling Syndrome", another name for Epilepsy. When I read this, I started looking back through my diaries at the dates of my episodes, and found that most of them occurred on or within a few days of a full moon.
       Of course, modern medicine has dismissed the idea that the moon's gravity is strong enough to affect us, though no one argues against the fact that the tidal rhythms of hundreds of billions of gallons of water are controlled by it. Perhaps, they fear the discovery of the ancient wisdom that will stop the lunatics from beating a path to their doors.
« Last Edit: 14/06/2008 22:15:41 by skeptic »
 

Offline rosalind dna

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Welcome skeptic

That is interesting to know about your experiences with smoking and the reasons for stopping then using cinnamon flavoured things. Have you ever
bought cinnamon sticks as you can cook or use them in hot drinks.
I have never smoked anything in my life nor do I intend too.

So how do you stop the triggers being a problem during the full moon because
as we know that it happens once every month???

Yes I agree with you about the older myths about epilepsy that go all the way back to the Bible. As you said with the "falling sickness" that Jesus cured
that is something that I'd always thought was epilepsy.


 

Offline Andrew K Fletcher

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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.

I wonder if Rosalind Dna can also relate to lunar influences with a diary and an online calendar showing the moon phases?

       I have had epilepsy since early childhood. Among the "triggers" I've personally noticed are Tobacco smoke(it inspired me to quit), Artificial Cinnamon flavor(the non-food type, used to flavor tooth picks), an unknown ingredient in store-bought ice cream(soft-serve and homemade have no effect), and a Full Moon.
       That last one may get a few laughs(or groans), but it's true. I found out from a friend that the word lunatic was inspired by epilepsy in ancient times. In fact, the bible refers to a "lunatick" boy (Matthew 17:15) taken to Jesus, to be healed. The verse describes the symptoms of "Falling Syndrome", another name for Epilepsy. When I read this, I started looking back through my diaries at the dates of my episodes, and found that most of them occurred on or within a few days of a full moon.
       Of course, modern medicine has dismissed the idea that the moon's gravity is strong enough to affect us, though no one argues against the fact that the tidal rhythms of hundreds of billions of gallons of water are controlled by it. Perhaps, they fear the discovery of the ancient wisdom that will stop the lunatics from beating a path to their doors.
« Last Edit: 17/06/2008 08:38:10 by Andrew K Fletcher »
 

Offline rosalind dna

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Quote
I wonder if Rosalind Dna can also relate to lunar influences with a diary and an online calendar showing the moon phases?

Andrew no I don't notice the difference with the lunar influences and
that is just a female age thing as happens to middle-aged women.

No I will not keep an online diary ever.
 

Offline skeptic

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Welcome skeptic

That is interesting to know about your experiences with smoking and the reasons for stopping then using cinnamon flavoured things. Have you ever
bought cinnamon sticks as you can cook or use them in hot drinks.
I have never smoked anything in my life nor do I intend too.

So how do you stop the triggers being a problem during the full moon because
as we know that it happens once every month???

Yes I agree with you about the older myths about epilepsy that go all the way back to the Bible. As you said with the "falling sickness" that Jesus cured
that is something that I'd always thought was epilepsy.

Rosalind,
         I can and do use natural cinnamon to flavor things, with no adverse effects. The FDA assured me, several years ago, that the Artificial Cinnamon Flavor that I am allergic to is not approved for any kind of food use, including candy. I only have to avoid 'hot toothpicks'.
         I took up smoking as a teen, thinking there must be some reason millions do it. Like most, I figured out that the hardest part was giving it up. People who say they want to quit are sincere, they hate it, but it has them. On an occasion when I was low on cash, I could go for a few days without, till payday. The first night after I got another pack was the beginning of several days of 'gran mals'. When I noticed the connection, I put them down, FOREVER. For years after, my 'worst nightmare' involved 'enjoying a cigarette', then waking in absolute fear. If every smoker could only experience that, they would all have the strength to quit. In this, Epilepsy is a blessing.   
           
 

Offline Andrew K Fletcher

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I did not ask you to keep an online diary> I asked you if you coul compare your diary with an online calender that has lunar events on it. Sorry for any confusion. I mentioned online to save you buying one. Just trying to be helpful but learning fast.

Quote
I wonder if Rosalind Dna can also relate to lunar influences with a diary and an online calendar showing the moon phases?

Andrew no I don't notice the difference with the lunar influences and
that is just a female age thing as happens to middle-aged women.

No I will not keep an online diary ever.

 

Offline rosalind dna

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Welcome skeptic

That is interesting to know about your experiences with smoking and the reasons for stopping then using cinnamon flavoured things. Have you ever
bought cinnamon sticks as you can cook or use them in hot drinks.
I have never smoked anything in my life nor do I intend too.

So how do you stop the triggers being a problem during the full moon because
as we know that it happens once every month???

Yes I agree with you about the older myths about epilepsy that go all the way back to the Bible. As you said with the "falling sickness" that Jesus cured
that is something that I'd always thought was epilepsy.

Rosalind,
         I can and do use natural cinnamon to flavor things, with no adverse effects. The FDA assured me, several years ago, that the Artificial Cinnamon Flavor that I am allergic to is not approved for any kind of food use, including candy. I only have to avoid 'hot toothpicks'.
         I took up smoking as a teen, thinking there must be some reason millions do it. Like most, I figured out that the hardest part was giving it up. People who say they want to quit are sincere, they hate it, but it has them. On an occasion when I was low on cash, I could go for a few days without, till payday. The first night after I got another pack was the beginning of several days of 'gran mals'. When I noticed the connection, I put them down, FOREVER. For years after, my 'worst nightmare' involved 'enjoying a cigarette', then waking in absolute fear. If every smoker could only experience that, they would all have the strength to quit. In this, Epilepsy is a blessing.  
          
skeptic That is interesting but sorry I have to disagree with you
about Epilepsy being a blessing. I have had many broken bones, cuts scars and so on over the 30+ years.
With the "change" it's meant to have calmed down because of the
hormonal change in women but not so much for me, having had
15 seizures in one day in March.

When the Clonic-Tonic/Grand Mal seizures rolled one after the other, I thought that they'd never stop. I had to ask myself to do that. I could hardly eat as I was so exhausted.
Buyt if you think that smoking has helped or not then do what you feel is right and good luck. I use cinnamon in hot winter drinks. I will PM you those later
(What are Hot Toothpicks, I have not come across them here in the UK)??

 

Offline rosalind dna

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I did not ask you to keep an online diary> I asked you if you coul compare your diary with an online calender that has lunar events on it. Sorry for any confusion. I mentioned online to save you buying one. Just trying to be helpful but learning fast.

Quote
I wonder if Rosalind Dna can also relate to lunar influences with a diary and an online calendar showing the moon phases?

Andrew no I don't notice the difference with the lunar influences and
that is just a female age thing as happens to middle-aged women.

No I will not keep an online diary ever.


Andrew no worries and I do have the lunar calendar in my own personal diary just for appointments stuff.
Also the cats play up then as well so I do have natures pair here too.
It is sort of helpful and given me something else to consider but for the future. Next lunar/calendar year>>>
 

Offline skeptic

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Rosalind,
         I can and do use natural cinnamon to flavor things, with no adverse effects. The FDA assured me, several years ago, that the Artificial Cinnamon Flavor that I am allergic to is not approved for any kind of food use, including candy. I only have to avoid 'hot toothpicks'.
         I took up smoking as a teen, thinking there must be some reason millions do it. Like most, I figured out that the hardest part was giving it up. People who say they want to quit are sincere, they hate it, but it has them. On an occasion when I was low on cash, I could go for a few days without, till payday. The first night after I got another pack was the beginning of several days of 'gran mals'. When I noticed the connection, I put them down, FOREVER. For years after, my 'worst nightmare' involved 'enjoying a cigarette', then waking in absolute fear. If every smoker could only experience that, they would all have the strength to quit. In this, Epilepsy is a blessing.       
[/quote]
skeptic That is interesting but sorry I have to disagree with you
about Epilepsy being a blessing. I have had many broken bones, cuts scars and so on over the 30+ years.
With the "change" it's meant to have calmed down because of the
hormonal change in women but not so much for me, having had
15 seizures in one day in March.
When the Clonic-Tonic/Grand Mal seizures rolled one after the other, I thought that they'd never stop. I had to ask myself to do that. I could hardly eat as I was so exhausted.
Buyt if you think that smoking has helped or not then do what you feel is right and good luck. I use cinnamon in hot winter drinks. I will PM you those later
(What are Hot Toothpicks, I have not come across them here in the UK)??[/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.   
'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.
 

Offline rosalind dna

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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.

 

Offline skeptic

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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.

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 »
 

Offline rosalind dna

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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/

 

Offline skeptic

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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.
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.
 

Offline rosalind dna

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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.

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.
 

Offline skeptic

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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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