The mystery of it all

[Cint]

P.S. I highly recommend the book, "Treating Epilepsy Naturally" by Patricia A. Murphy, available on Amazon.

Only for those with non refractory E.

 

[AlohaBird]

Odors.... I had never thought of that.
I dislike cig smoke as well, but find it hard going in or near a lot of ladies fashion and accessory shops. And I have to hold my breath walking past pretty nail shops, makes me feel sick every time.
Not sure if odors are much of a factory for my seizures though. Still an awesome observation.

Bernard has a page all about aromatherapy on his alternative treatments page so it's not all odors for all E people are bad. For me, my brain seems to make a distinction between naturally occurring odors such as the rose, ginger, and cinnamon oils I wear as fragrances as opposed to all the chemical stuff.
I hate it when you are walking along in a department store or a mall and someone comes up and ambush sprays you with perfume. Yech!. And nail salons are the absolute worst. I'm not sure if chemical smells like that have ever given me a seizure but they definitely give me migraines and there is a large overlap between migraines and seizures, some researchers even calling migraines a type of seizure.

 

[AlohaBird]

Only for those with non refractory E.

No. That book is for anyone who wishes to raise their seizure threshold. For someone like the OP who has had three seizures in nine years, it might cure him outright. For someone like you who has greater challenges it might mean fewer seizures and/or less intense seizures and/or being able to take less meds with the same level of control.

Not saying that it will cure everybody instantaneously, just that it can help anybody who is still interested in finding help.

 

[MrKap]

I found a potentially really bizarre trigger. Makes me wonder if I spent one too many nights with my head too close to the electrical wall socket.



Exposure to electromagnetic fields and risk of central nervous system disease in utility workers.

http://www.ncbi.nlm.nih.gov/pubmed/10955406

Occupational exposure to electromagnetic fields has been associated with neurological diseases such as amyotrophic lateral sclerosis, senile dementia, Parkinson disease, and Alzheimer disease. I studied the incidence of central nervous system diseases in 30,631 persons employed in Danish utility companies between 1900 and 1993. I linked the cohort to the nationwide, population-based Danish National Register of Patients and compared the numbers of cases of these diseases observed between 1978 and 1993 with the corresponding rates in the general population. In addition I fit to the data on utility workers a multiplicative Poisson regression model in relation to estimated levels of exposure to 50-Hz electromagnetic fields. Overall, there was an increase in risk for senile dementia and motor neuron diseases combined. The incidences of Parkinson disease, Alzheimer disease, and other diseases of the central nervous system were essentially unrelated to exposure to electromagnetic fields. A decreased risk of epilepsy compared with the general population probably reflects a healthy worker effect; I observed an increased risk of epilepsy based on internal comparisons. The increased risk for senile dementia and motorneuron diseases may be associated with above-average levels of exposure to electromagnetic fields.

I'm not saying it triggers me, I'm just saying it's an odd thing I found the other day.

For me, my brain seems to make a distinction between naturally occurring odors such as the rose, ginger, and cinnamon oils I wear as fragrances as opposed to all the chemical stuff.

I tried rosewood oil the other day, under a candle, and the whole whole top and center of my head reacted to it, but it felt as if my head got more "solid" for lacks of better terms, but it did trigger peripheral vibrations in my extremities, in a very minor way.

Chemicals are a definite trigger with me, on more than one occasion.

 

[George__]

^

Come on electromagnetic fields??? Cell phones, radio and all tons of waves are all around us now...

 

[MrKap]

Hey, it's not my study.

If there is a place to look, then utility worker incident rates are it.

Normally you can find higher incidences with cancers and so on with people working in factories with questionable chemicals, but someone on another thread was asking, and I looked, and there it is.

I'm not saying that it is a primary cause, but if mine start to worsen over the next few years, I will be moving to the country, just like Neil Young, I guess.

You ever read this miracle story? It's not epilepsy, but it should shock people. It did me.

The Island Where People Forget to Die

http://www.nytimes.com/2012/10/28/magazine/the-island-where-people-forget-to-die.html?_r=0

 

[Cint]

No. That book is for anyone who wishes to raise their seizure threshold......... For someone like you who has greater challenges it might mean fewer seizures and/or less intense seizures and/or being able to take less meds with the same level of control.

Well, I have read that book and it didn't do a thing for me.

Not saying that it will cure everybody instantaneously, just that it can help anybody who is still interested in finding help.

Oh, I am interested in finding help, but for me, it's gonna take a whole lot more than just reading a stinkin' book.

 

[MrKap]

Oh, I am interested in finding help, but for me, it's gonna take a whole lot more than just reading a stinkin' book.

Look what happened to this person. It's crazy if it's true. Needless to say, I am bringing chelaton therapy with my doctor next visit.

http://www.healingwell.com/community/?f=23&m=2607408

Apparently, and I have no idea what type of chelaton therapy that person had, but, apparently it's been around since the 1930s and requires professional supervision, so...

 

[87sf]

^

Come on electromagnetic fields??? Cell phones, radio and all tons of waves are all around us now...

There are many cases of people that are so sensitive to electromagnetic fields that they have had to move from suburban areas into complete isolation to avoid it. 1 gentleman that I was was watching a documentary on had relocated to an undeveloped woodland area because the EMF's gave him nausea and vomiting.
Just because some things aren't probable, doesn't mean they a are possible.

 

[MAB]

I read about a woman with Ehlers-Danlos Syndrome claim to be affected by electromagnetic fields. At first I thought she was nuts but I have heard and read of many more cases since then. Not sure if there is anything to it or not but it's interesting.

 

[AlohaBird]

Well, I have read that book and it didn't do a thing for me.

Oh, I am interested in finding help, but for me, it's gonna take a whole lot more than just reading a stinkin' book.

Hence the use of the words "might" and "can".
I'm sorry that book did not offer you a solution that worked for you but it would be a shame if your being a grumpy-face about it dissuaded someone else from reading it who could be helped by it greatly. Your case is, granted, out there at one end of the bell curve as far as severity and intractability goes. Don't forget the folks on the rest of the bell curve are looking for answers too.

In case people have forgotten what we are going back and forth about here the book is called Treating Epilepsy Naturally and the author is Patricia A. Murphy.

 

[Cint]

Hence the use of the words "might" and "can".
I'm sorry that book did not offer you a solution that worked for you but it would be a shame if your being a grumpy-face about it dissuaded someone else from reading it who could be helped by it greatly.

Yes it would be a shame, now wouldn't it?!

Here's a link for other complementary approaches that others can look into also: http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/complementary-health-approaches

Your case is, granted, out there at one end of the bell curve as far as severity and intractability goes. Don't forget the folks on the rest of the bell curve are looking for answers too.

Oh, I haven't forgotten. But don't you forget, we don't all have rose-colored glasses on. Some of us are just being realistic, it isn't as simple as you're making it sound.

In case people have forgotten what we are going back and forth about here the book is called Treating Epilepsy Naturally and the author is Patricia A. Murphy.

No need for the reminder. Right here on CWE, Bernard has a list of books:
http://www.coping-with-epilepsy.com/index.php?p=books

 

[AlohaBird]

Aw, Cint :hugs:
thanks for the links

You may think I have rose colored glasses on but I think I'm seeing clearly for the first time in thirty years.
No, it's not easy, but it is working *For Me*

 

[87sf]

I have an update.
After the opportunity to speak to a new neurologist, I am going down to Melbourne in a couple of weeks to "have a chat" to someone I think will help answer some of my questions.

 

[Nakamova]

That's very promising. Write down all the questions you have for the neuro, and write down the answers too once you're at the appointment.

 

[87sf]

I do usually write down what question I have, especially for this sort of thing. I completely agree with you there, usually I ask if I can record the meeting. I have never been told that I can't. I even had one Dr say that it's a great idea and after asking not to record "yet" went on to have a rant about how some people expected him to write down everything he had told them at the end of the meeting. We are good friends with that Dr so it was really quite funny.

 

[Retta]

Hi there I have type 1 diabetes and epilepsy too. Do you have good docs? Did you have diabetes or epilepsy first?

 

[87sf]

Hi there I have type 1 diabetes and epilepsy too. Do you have good docs? Did you have diabetes or epilepsy first?

Hi Retta,
I don't have diabetes so I can't really help you with that sorry.
Where are you located?

87sf

 

[87sf]

In Melbourne to see another neurologist for a second opinion. Hopefull I'll get some clarification and information, even if it doesn't support my ideal result.

 

[87sf]

The Dr thinks I have mild focal epilepsy that makes me seizure while I sleep. He recommends Valproate as it will also help moth my headaches/migraines. He does suspect that the periods that I hold my breathe while I sleep could be seizures and if they are I am having a lot. Another test to look into.