Genetic basis of epilepsy

[Bobbi]

I am 57 years old and my first episode was dec 2012- status epilepticus, nothing found on my tests, doc I went to yesterday said I have genetic epilepsy. Last week EEG I had 20 seizures in 20 minutes but I have no feeling or knowledge of any seizures. So I am very interested.

 

[dbrim]

G

 

[Treu Rivers]

Maybe it would help ONLY those who don't know why but for those who, like me, was in an accident.....unless you can fix a broken brain it won't help me.

 

[Evamarie91]

My epilepsy is idiopathic and I have no family history of epilepsy. My neurologist said mine is a genetic disorder, which is just awesome. I'd love for there to be research, but I have no idea how this is going to help us practically. There are too many issues with medical ethics to start gene splicing babies and if they do find my epilepsy gene how is that going to help me?

 

[lindsayschu2]

This morning my son asked me if he thought he would get epilepsy. He had two seizure like events when he was an infant. He was 6 weeks premature and was on oxygen, and at the time, his feet, hands and lips would turn blue when he cried. Was it the fact that he was very oxygen inefficient? Or has he inherited epilepsy from me? He has never had another episode and he is 17. Hell yes, I would like to be able to determine if my epilepsy is genetic. I couldnt care less about how epilepsy is thought of as a result, but I do fear that my son is at some risk of having seizures some day, wonder if his seizures were from another cause, and wish I could put his mind at rest. I think any additional information we can have about epilepsy only helps us gain a better foundation of knowledge.

 

[Ruth]

I inherited my epilepsy. The doctor's kept asking me to do a thorough search into my family history. I also have a sister and two sons who have epilepsy. My 2 sons were twins and were born premature. They were oxygen deficient. In their case, I do not know what the cause is.

I did not know that my father had epilepsy. It was years before I found it out. My Mother finally told me. She told me that it goes clear back in my family history on my father's side of the family. My Father kept me in the family. I knew that when I was growing up. When he died, I was disowned because of my epilepsy.

People use to "keep it in the closet," so it was difficult to find out where mine came from.
I finally found out. How do you propose doing this study? DNA tests? That would be the only sure way to find out for other people.

 

[Bobbi]

I asked one doctor if there was a test and he ignored the gene question. My mom had schizophrenia and the orthomolecular doctor links it all to magnesium dependency. My mom and her family also had diabetes so I am also on a grain free diet.

 

[Ruth]

I have never heard of an orthomolecular doctor. Would you please explain what this type of doctor does?

 

[Bobbi]

I have never heard of an orthomolecular doctor. Would you please explain what this type of doctor does?

My doctor evaluates me with a machine (Voll's Electro Dermal Titration) to determine with foods I should or shouldn't have. He can also then determine which vitamins to use in the proper dosage. My anti-seizure medication is also placed on the machine to evaluate all together. Sort of like a nutritionist but more accurate. My doctor sees mostly cancer patients and is not usually taking any new patients. I had seen him years ago and he took me in after my seizures started. He is not an MD but a PhD. More on orthomolecular can be found on http://www.orthomed.org/

 

[Ruth]

Thank you Bobbi,

I went to your link and it says that it corrects the defiencies in the body.

I will write more on it later. I hope everyone looks up your link, there is so much more.

 

[Bobbi]

Thank you Bobbi,

I went to your link and it says that it corrects the defiencies in the body.

I will write more on it later. I hope everyone looks up your link, there is so much more.

Since I have been seeing him (12/13) I feel I have a bit more energy and we hope in 6-9 months my anti-seizure meds can be cut in half...we shall see...my diet is basically a paleo diet with some specific foods that I cannot have.

 

[Ruth]

I have heard of a lot of diets. I have not heard of the paleo diet, though. Can you please tell me a little bit about it?

 

[Bobbi]

I have heard of a lot of diets. I have not heard of the paleo diet, though. Can you please tell me a little bit about it?

Its mostly proteins and vegetables with less grains. I do not eat any grains, lots of Cruciferous veggies, seeds, dark chocolate, good oils, olive and coconut, no dairy. My favorite book on this is http://www.primalbody-primalmind.com/
Another woman who has good info is Beverly Meyer https://www.ondietandhealth.com/
I've lost about 20 lbs since 12/13 (5 months)

 

[Ruth]

Thank you Bobbi, now I understand it.

 

[AlohaBird]

My doctor evaluates me with a machine (Voll's Electro Dermal Titration) to determine with foods I should or shouldn't have. He can also then determine which vitamins to use in the proper dosage. My anti-seizure medication is also placed on the machine to evaluate all together. Sort of like a nutritionist but more accurate. My doctor sees mostly cancer patients and is not usually taking any new patients. I had seen him years ago and he took me in after my seizures started. He is not an MD but a PhD. More on orthomolecular can be found on http://www.orthomed.org/

Since I have been seeing him (12/13) I feel I have a bit more energy and we hope in 6-9 months my anti-seizure meds can be cut in half...we shall see...my diet is basically a paleo diet with some specific foods that I cannot have.

I know these posts are old but I just couldn't let quackery like this be mentioned in the same breath as a paleo diet and not say something.

http://www.quackwatch.org/01QuackeryRelatedTopics/electro.html

This Electro dermal titration machine is pure nonsense. Then a quack like that puts somebody on a paleo diet, which has a long history of being the healthiest diet ever for most all humans, like 2.5 million years of evolutionary history. The paleo diet stands on its own merits. It does not need some snake oil purveyor to do some electronic voodoo with a complicated looking machine (which actually does exactly nothing) who then says, "My advanced scientific machine tells me that you need to cut out gluten and eat more veggies". Lo and behold the person feels better and credits it all to the magical machine. Pfffftttt...!

 

[Ruth]

I usually don't answer a person from a research group. She/he did not say what research group she/he was from.

I am sorry I replied to it at all. I don't think that she/he got much from us. It sounds like it was a college course. I wonder what grade they got using our information.

 

[Bobbi]

pure nonsense...NOT

AlohaBird

The website you cited is an opinion of one man, Steven Barrett. He has his opinion like everyone else. Steven Barrett also mentions Dr. Linus Pauling on his website among others who are alternative medicine practitioners.....and the world was once believed to be flat. Do you believe all you read on the internet?

I know that my Doctor works for me and I'm no dummy (although your opinion may think so). He helps many cancer & MS patients. Many of the patients are MD's since they know how chemo & radiation don't do the trick! My doctor does not tell people to not go to their MD but works with them.

I used the word Paleo to give people a generalised idea of what he has recommended for me in addition to ketogenic diet. I have always been allergic to dairy and sensitive to many other foods (which I will not waste any time on here) which his machine confirmed and other "blood tests" also confirmed. I am not totally sold on traditional medicine from my medical history and I have seen many cancer patients die using chemo & radiation including my parents. Others thriving on natural methods. Since my first seizure was at the age of 57 (status) and I was near death my thoughts are that the 4 neurologists I have seen have diagnosed me by just guessing from how they have been taught. I have not had any events since 3/2014 and my most recent EEGs are very good. My Neurologist said that my medications will probably be reduced soon (sept). I cannot say the prescription medications don't help but the side effects are not on my to do list! I have been taking alot of magnesium including Magnesium-l-threonate which helps with cognitive function. Since 2012 until earlier this year my concentration levels were terrible even though all of the cognitive tests showed otherwise. My memory was failing me, especially short term. It is getting much better but studying for the architects exams (7 exams) will be my biggest challenge for myself.

I hope you have an open mind since a closed mind can bring you no knowledge. If you have never experienced the technique personally how can you know.

“Being ignorant is not so much a shame, as being unwilling to learn.”
― Benjamin Franklin

Enjoy your day! Mahalo

 

[AlohaBird]

Bobbi,
You and I share a lot of things including a history of cancer and a lifelong quest for alternative/complementary solutions to the things allopathic medicine only throws pills at.

I've been paleo since 2009 and have been trying to explain and often defend the ketogenic diet here for ages.
I started a whole thread about magnesium recently which ended up with me ordering Magnesium L Theonate which recently arrived and I think is great.

Just saying this so you know I am not one of those closed minded people who thinks the only source of wisdom is a person in a white coat and the only source of healing is a bottle of pills.

No, I don't believe everything I read on the net. But DR. Steven Barrett is not just some guy on the net. He is a scientist and a Doctor. And if you read what he writes and have a basic understanding of how electricity works, it is obvious that the type of machine you are talking about is nothing but carnival sideshow entertainment. That machine can beep, whir, click, and fluctuate lights all it wants but it is not telling you anything about what foods are or aren't good for you. The human body just doesn't work that way.

Saying I must experience it to be able to know that is like saying I don't really know the moon is not made of green cheese unless I've been there. Um, no.

That said, your doctor is giving you some great advice about nutrition. I could have given you the exact same advice only without needing a flashing beeping machine. A lot of people have undiagnosed or under-diagnosed sensitivities to milk. I feel much better since I stopped drinking it. My cancer has been gone for 8 years and my seizures are under perfect control with way less medication when I stay paleo and keto.

Dr David Perlmutter author of Grain Brain and Brain Maker would agree.
Dr John Symes of the G.A.R.D. protocol would also applaud your dietary changes.

The difference is I did the research to find out that it made sense to try ditching milk (and going paleo and ketogenic). I've changed my lifestyle and eating habits based on a lot of research, not a beeping flashing machine run by a charlatan.

Sorry if my bluntness offends you but I really think people taking other people's money particularly those who are sick and desperate enough to try anything, are reprehensible.

Best wishes for success on your architects exams.

 

[AlohaBird]

An except from the article by Dr. Steven Barrett:

Some are claimed to measure "vibrations," "resonance," or "stresses" associated with body tissues and/or organs. Actually, most devices are little more than fancy galvanometers that measure electrical resistance of the patient's skin when touched by a probe. The device emits a tiny direct electric current that flows through a wire from the device to a brass cylinder covered by moist gauze, which the patient holds in one hand. A second wire is connected from the device to a probe, which the operator touches to "acupuncture points" on the patient's other hand or a foot. This completes a low-voltage circuit and the device registers the flow of current. The information is then relayed to a gauge or computer screen that provides a numerical readout on a scale of 0 to 100 [4]. According to Voll's theory: readings from 45 to 55 are normal ("balanced"); readings above 55 indicate inflammation of the organ "associated" with the "meridian" being tested; and readings below 45 suggest "organ stagnation and degeneration." However, if the moisture of the skin remains constant—as it usually does—the only thing that influences the size of the number is how hard the probe is pressed against the patient's skin.

In a double-blind study, British researchers compared its results with a Vegatest device to those of conventional skin-prick testing in 30 volunteers, half of whom had previously reacted positively for allergy to cat dander or house dust mite. Each participant was tested with 6 items by each of 3 operators in 3 separate sessions, a total of 54 tests per participant. The researchers concluded that Vegatesting does not correlate with skin prick testing and so should not be used to diagnose these allergies. The authors estimated that more than 500 EDS devices were being used in the United Kingdom to assess sensitivity to potential allergens [8].

 

[C0urt]

3 people in my family have had lyme disease and seizures of some form or another,