[jimbob]

greetings, everyone -- I wanted to tell my story here where I am really happy to be a part of a larger community!
I believe my seizures really were triggered through and by an illness that I contracted several years earlier .... This all began a number of years ago, in my late twenties (I'm now in my late fifties).
One day I came down with a cold that seemed to drift down into my nerves and muscles, thereby making them kind of numb. I could still function fine -- even my mind seemed as sharp (or dull!) as ever -- but admittedly my feelings seemed much reduced and kind of cutoff. Oh well, I just kind of went through life like that, but it was weird and very, very frustrating. I could have done more to seek medical help, but I just didn't think there was any solution .....
I have learned since that what happened to me is described under the umbrella term, GUILLAIN BARRE SYNDROME.
At any rate, I kind of drifted on like this, went to school and even worked some. But about four or five years after coming down with this, all of a sudden my brain started to go on the fritz, and for about six months I was pretty loose in terms of remembering things day to day, and then I started having seizures. It took me a while to seek help for them, as I thought they were as unique as my illness. But finally I did get diagnosed with temporal lobe epilepsy and started on tegretol. I was pretty controled at first, but the seizures came back, and really I can't say I've been under control for a number of years now. I've settled down into a rhythm of complex partial seizures pretty regularly every week to ten days. (I now also take gabapentin.)
It's OK when I have them at home which is most of the time; not so good when I have them on the subway!!
The good news is that the numbness in my muscles and nerves has dissipated with time -- though it's been a long struggle and to me it's clearly been a kind of viral illness - the Guillain Barre Syndrome. If you read about it, people often get over it.
But I don't ever expect to get over the seizures. It's possible, but I doubt it.
Anyway, it's very exciting for me to share my story with you here. I'm sure it's no more interesting than all of your stories, but I am interested to see whether anyone can relate to the link between the syndrome and the seizures
which is so clear in my mind. I could just really feel kind of feel the numbness in my muscles and nerves go up my cerebral cortex into my brain and lodge itself there ......

[Ellie]

Thanks for sharing your story with us here! I kind of gave up on finding what was guilty for my seizures. I've been told it was due to aseptic meningitis I had as an infant (went undiagnosed until my fontanel swelled up), then for being preemie, then because I'd died a few times (obviously they brought me back) - all in my infant days.

My seizures really didn't show up (GM's) until I was a teen hitting puberty which from my understanding is fairly common. Now as far as absence, partial, etc. seizures; who knows how long those were around. At the time, we didn't know what we were looking for.

Anyway, your seizure frequency seems to be very high and very uncontrolled. I'd personally suggest you see your neurologist/epileptologist and look into a medication increase, change, or current testing if you haven't been tested in a while (EEG, VEEG, MRI, MRA, etc.).

It's wonderful to meet you and please keep us updated, we worry a lot.

[jimbob]

thanks so much for your feedback and welcoming, Ellie .......
I had read your 'VEEG experience' account and it was one of the things that inspired me to join the group ......
it was SO well written and interesting about the whole experience, something I had absolutely no knowledge of !!
you're right: it's been an awfully long time since I've been tested .....
one thing that puzzles me is when you say my seizure frequency is high: this is hard for me to understand since I have one every week or so, while in your VEEG account you talk of having a couple a day .... am I right ??
anyway, I think you're probably a lot more knowledgeable about this than me..
and again thanks for your input, but also for your welcoming !!
--jimbob

[Ellie]

What my doctor said was more than 1 breakthrough seizure per month is high. I'd be tempted to argue with her, but I figure since she went to med school and I didn't, I should just nod. I'd probably say more than 3 per month should mark your seizures as uncontrolled (depending on the frequency before medication was introduced).

I've kind of grown into a groove with mine and when my frequency increases, it's my fault 99% of the time. I stress out, lose my appetite, forget to take pills, etc. - so usually when that happens I will put it in my journal but I don't tell my doctor.

I know it's important information to her, but my Epileptologist is also on the big-wig board of psychology so she frequently tries to give me anti-depressants if I have a bad day*. By bad day, I mean I go to her office and hate epilepsy and will say something naughty or negative which triggers her to assume I am depressed (if she'd look at my chart, 90% of the time it's just PMS).

Anyway, ever since she told me each seizure is a potential risk for brain damage, I really try to go out of my way to make sure they are controlled. I just have these maturity losses where I get this bizarre feeling I'm cured and stop taking my medication (I don't know why, but I do it a lot if I go a few months without a seizure).

They all seem to have their own definitions of 'uncontrolled' - while I think once a month is pretty 'normal' I'd agree anything over a standard breakthrough should require some investigation.

[DogtorJ]

Hi Everyone,

I am sort of new on this forum but spent a fair amount of time on BrainTalk so many of you are familiar with my work in the area of epilepsy. Yes, I am "just" a veterinarian but now speak at both veterinary and human conferences on this topic. The response to the elimination diet that I talk so much about has been phenomenal and part of the reason it does work is that the immune system becomes healthy enough to deal with the viral "culprits" in epilepsy.

Many epilepsy sufferers have not been told that viruses are known causes of seizures. The fact is that there are over 25 viruses KNOWN to causes seizures in people, many of which are ubiquitous (e.g. the Herpes and paramyxovirus families, including Epstein Barr, Herpes simpex, measles, mumps, Coxsackie viruses,and many more) I would encourage all of you to do some creative Internet searches for "virus, epilepsy", etc and see this for yourselves. There was a very recent news alert to this effect on Yahoo (http://www.medicalnewstoday.com/medi...&nfid=rssfeeds ).

This should all make TOTAL sense to people. There is a myriad of viruses that love the central nervous system. And many of them have a real affinity for the glial cells (astrocytes and oligodendricytes) that support the neuron and regulate the levels of neurotransmitters (e.g glutamate) at the synapse. This is one of the main reasons why "the G.A.R.D"....the glutamate/aspartate restricted diet...works soooo well to help control seizures, as it dramatically reduces the work load of these dysfunctioning cells and puts a great Band Aid on the epilepsy situation. But, the long-term solution comes from the same diet that helps to reverse the immune failure and tissue ill health that set the stage for the viral uprising to begin with.

It is interesting and very explainable why people have histories like the one above. Many of our viral infections do not come and go but rather come and stay. As I am fond of saying, "If I could do a Star Trek type of scan on your body and give you a print out of the viruses you have in there, once you got over the shock of that news, you might just be motivated to take better care of yourself, eh?" Some infections are "diphasic", with the initial infection causing some signs while other symptoms arise later once the individual fails to control the infection OR continues to bombard these viruses with things that "make them mad", as explained below.

Latent viruses are involved in many of the disease "syndromes" with which we are afflicted, including epilepsy and cancer. I like to use cancer as the parallel to illustrate the difference between "causes" and "triggers". For example, carcinogens do not cause cancer. ("Say what???"). No, they don't. VIRUSES cause cancer. Carcinogens incite the virus into causing the cancer. I am convinced that most of you reading this will hear, in your lifetime, that all cancer is viral. Researchers have been saying this for years and years. It's what viruses do. It is those ugly things we call "carcinogens" that trigger those viruses into causing cancer. But, that alone is not enough for us to develop cancer. We also have to experience some degree of immune failure in order to get the "big C". So, it is a triad of factors...viruses, carcinogens, and immune failure...that come together to yield the resulting cancer. That is what we call a "syndrome".

Epilepsy is also a syndrome and the parallel is probably already quite clear. We are loaded with viruses that have thwe potential to cause seizures. Epstein-Barr is one such Herpes virus. 50% of our kids in the US have Epstein-Barr by age 5 and 95 % of Americans over age 40 have this guy in their body. Why don't we all have seizures if he can cause them? Because we don't have the right cofactors in place to make it happen. And there are many cofactors in epilepsy, including diet (HUGE!!!!), air quality (also HUGE), hormonal influences, lifestyles, and many other things that affect our immune systems and health of the central nervous system, liver, kidneys, and endocrine systems, all of which can play vital roles.

Of all of these factors, diet is clearly THE most important. This is very easy to see once we understand what is required for our brains, bodies and immune systems to stay healthy and operate optimally. The "big 4" (gluten, dairy, soy and corn) are the who's who of what is wrong with foods, as they damage our gut's ability to absorb nutrients (e.g. celiac disease), shower our body with damaging proteins (lectins), load us up with staggering levels of "excitotoxins" (glutamate and aspartate) and pound us with estrogens. As a result, tissue health suffers, immunity fails, enzyme systems go down, and the Pandora's Box of viruses is opened wide. The bottom line is that viruses don't like certain things hurled at them (e.g. lectins, chemicals, pollution) and when they react to these noxious stimuli, we had better hope that we have a competent immune system to put down their rebellion. If not, we suffer the full blown syndrome, whether it be epilepsy, cancer, or the myriad of things we love to call "autoimmmune disorders". These things are not as "idiopathic" as we have all been led to believe.

I think you will see how your medical histories all line up with this once you fully grasp the role (and ultimate purpose) of viruses in nature and our bodies. They are not the malicious critters that we have labeled them to be. They are just doing their job. It is what WE are throwing at them that is the real issue. We are literally forcing them into becoming pathogens.

As Pogo so wisely stated, "We have met the enemy and he is us."

I hope this helps,
John

[Ellie]

Originally Posted by DogtorJ

Yes, I am "just" a veterinarian

Those of us who treat our pets like our children don't see it that way!

Thanks for the great information!

[DogtorJ]

Originally Posted by Ellie

Those of us who treat our pets like our children don't see it that way!

Thanks for the great information!

Now if we can just get the AMA to look at it that way. LOL Actually, I have an Internet acquaintance whose epileptic son has done very well on the G.A.R.D. and his doctors and dieticians at The Cleveland Clinic are investigating the diet. Hopefully something good will come of it.

Thanks for the "thanks". You're very welcome. I hope it helps to shed some light on this vital topic.

J.

[jenD]

Hi dogtorj, yes i have and your info is very interesting, i was about to post about the GB as i to think i may be suffering from the same thing as the brain can be damaged from what i understand by gb. it's can also have alot ot do with Ramsay hunt syndrome. so i think this fellow is correct. sometime when you look back on your history , silly things make heap of sense. the shingle virus can cause serious damage to the nerves on your brain. any way docj i sent a quick email to your site the other day to congratulate you on your findings ive been gluten free for 17 months now and many people think it can help cure or reduse all kinds of things. especaily those with auto immune dificulies as most of us whith gluten sensitivity have. or will get eventualy .have you read about dr M Hadjivassiliou , i tell you now i'm proof of life without gluten casien can make a heap of difference in ones life even with out a serious illness. i believe its the devils grain. keep up your great work .hee hee. jen form Australia.
GLUTEN ATAIXIA (SENSITIVITY)
"Gluten sensitivitiy as a neurological Illness" by , R A Grunewald, G A B Davies-Jones:
also from a site called the gluten file which takes all the work out of you're serching, fantastic. i havnet been diagnosed for E yeat , but they suspect i have E or MS. seizure of some types very scarey stuff right now.

Originally Posted by DogtorJ

Hi Everyone,

I am sort of new on this forum but spent a fair amount of time on BrainTalk so many of you are familiar with my work in the area of epilepsy. Yes, I am "just" a veterinarian but now speak at both veterinary and human conferences on this topic. The response to the elimination diet that I talk so much about has been phenomenal and part of the reason it does work is that the immune system becomes healthy enough to deal with the viral "culprits" in epilepsy.

Many epilepsy sufferers have not been told that viruses are known causes of seizures. The fact is that there are over 25 viruses KNOWN to causes seizures in people, many of which are ubiquitous (e.g. the Herpes and paramyxovirus families, including Epstein Barr, Herpes simpex, measles, mumps, Coxsackie viruses,and many more) I would encourage all of you to do some creative Internet searches for "virus, epilepsy", etc and see this for yourselves. There was a very recent news alert to this effect on Yahoo (http://www.medicalnewstoday.com/medi...&nfid=rssfeeds ).

This should all make TOTAL sense to people. There is a myriad of viruses that love the central nervous system. And many of them have a real affinity for the glial cells (astrocytes and oligodendricytes) that support the neuron and regulate the levels of neurotransmitters (e.g glutamate) at the synapse. This is one of the main reasons why "the G.A.R.D"....the glutamate/aspartate restricted diet...works soooo well to help control seizures, as it dramatically reduces the work load of these dysfunctioning cells and puts a great Band Aid on the epilepsy situation. But, the long-term solution comes from the same diet that helps to reverse the immune failure and tissue ill health that set the stage for the viral uprising to begin with.

It is interesting and very explainable why people have histories like the one above. Many of our viral infections do not come and go but rather come and stay. As I am fond of saying, "If I could do a Star Trek type of scan on your body and give you a print out of the viruses you have in there, once you got over the shock of that news, you might just be motivated to take better care of yourself, eh?" Some infections are "diphasic", with the initial infection causing some signs while other symptoms arise later once the individual fails to control the infection OR continues to bombard these viruses with things that "make them mad", as explained below.

Latent viruses are involved in many of the disease "syndromes" with which we are afflicted, including epilepsy and cancer. I like to use cancer as the parallel to illustrate the difference between "causes" and "triggers". For example, carcinogens do not cause cancer. ("Say what???"). No, they don't. VIRUSES cause cancer. Carcinogens incite the virus into causing the cancer. I am convinced that most of you reading this will hear, in your lifetime, that all cancer is viral. Researchers have been saying this for years and years. It's what viruses do. It is those ugly things we call "carcinogens" that trigger those viruses into causing cancer. But, that alone is not enough for us to develop cancer. We also have to experience some degree of immune failure in order to get the "big C". So, it is a triad of factors...viruses, carcinogens, and immune failure...that come together to yield the resulting cancer. That is what we call a "syndrome".

Epilepsy is also a syndrome and the parallel is probably already quite clear. We are loaded with viruses that have thwe potential to cause seizures. Epstein-Barr is one such Herpes virus. 50% of our kids in the US have Epstein-Barr by age 5 and 95 % of Americans over age 40 have this guy in their body. Why don't we all have seizures if he can cause them? Because we don't have the right cofactors in place to make it happen. And there are many cofactors in epilepsy, including diet (HUGE!!!!), air quality (also HUGE), hormonal influences, lifestyles, and many other things that affect our immune systems and health of the central nervous system, liver, kidneys, and endocrine systems, all of which can play vital roles.

Of all of these factors, diet is clearly THE most important. This is very easy to see once we understand what is required for our brains, bodies and immune systems to stay healthy and operate optimally. The "big 4" (gluten, dairy, soy and corn) are the who's who of what is wrong with foods, as they damage our gut's ability to absorb nutrients (e.g. celiac disease), shower our body with damaging proteins (lectins), load us up with staggering levels of "excitotoxins" (glutamate and aspartate) and pound us with estrogens. As a result, tissue health suffers, immunity fails, enzyme systems go down, and the Pandora's Box of viruses is opened wide. The bottom line is that viruses don't like certain things hurled at them (e.g. lectins, chemicals, pollution) and when they react to these noxious stimuli, we had better hope that we have a competent immune system to put down their rebellion. If not, we suffer the full blown syndrome, whether it be epilepsy, cancer, or the myriad of things we love to call "autoimmmune disorders". These things are not as "idiopathic" as we have all been led to believe.

I think you will see how your medical histories all line up with this once you fully grasp the role (and ultimate purpose) of viruses in nature and our bodies. They are not the malicious critters that we have labeled them to be. They are just doing their job. It is what WE are throwing at them that is the real issue. We are literally forcing them into becoming pathogens.

As Pogo so wisely stated, "We have met the enemy and he is us."

I hope this helps,
John

[jenD]

Hi Jimbob, i totaly get where your coming from, this is one of my symptoms ive been remembering from way back to age 14. i do believe in the auto immune problem and believe my gluten allergy has alot to do with mine.
you've prob already read about Ramsay Hunt syndrome, as it can cause heaps of damage to the brain, with out ever showing up with all the GB symptoms. it can attack the brain and cause damage similar to MS.
so your on the right track, good luck to you . jen from Australia.

[DogtorJ]

Thanks for posting, Jen. That is a great testimonial and really helps to pull things together.

The study of lectins explains sooooo much. (http://www.krispin.com/lectin.html). Once we see that these harmful glycoproteins (especially those from gluten, dairy, soy and corn) can cause tissue damage/inflammation ALL BY THEMSELVES, without an immune response, then things start really making sense. We can then see that the immmune response is secondary to that damage, which helps to explain why we see such a variation in the measurable response by different individuals. Some will respond with an outpouring of antibodies yielding positive tests while others will not, explaining negative tests in individuals who end up responding well to the elimination diet when they go ahead and do it anyway in the face of those negative tests.

These dietary glycoproteins are also a big part of what we love to call "autoimmune disease". Personally, I do like nor do I use that term anymore unless I put it in quotes. That term implies that the immune system is attacking it's own body's tissues for no good reason. I contend that this does not happen...ever. The immune system always responds appropriately and we simply do not fully understand why it does what it does some times, with the inflammation being incited by lectins being the prime example.

Lectins are antibody-sized proteins/glycoproteins. That makes them really tiny. How would we know they are there when they are that small? We can't see them in a routine tissue sample. It would take biochemical analysis or, again, antibody tests to determine whether they are involved. Therein lies the rub. Once again, not everyone responds with what we might call an "appropriate" response...one that we can detect readily. We just have to know that these lectins can and do cause changes in the individual cells of the body (from neurons to nephrons to blood cells, etc) of susceptible individuals. I contend that the "big 4" (gluten, dairy , soy and corn) are not GOOD for anyone. They are simply better tolerated by some than others. This is the nature of "spectrum disorders", which range in severity from the best of the best to the worst of the worst. I tell people to think "peanut allergy" when thinking about the worst of the worst. Whoa! Now that's a sensitivity.

So, does gluten affect neurons? Definitely. Can it kill neurons? Yes! Do a search for "gluten, neurons" and you'll find some interesting things. But how it does that is the interesting thing, and the clue is in the link above about lectins. A concurrent study of viruses helps to see the big picture and that is why I write so much about this on my site now.

It is logical that the viruses INSIDE that cell are the things that determine the response of that cell to the challenge by lectins, carcinogens, and other chemicals/pollutants, etc etc. Reading the Lectin Report above, one might ask what determines how a cell decides which of the ten different responses it will manifest once challenged by the lectin (from cell death to tumor formation). I believe the answer lies in the adaptive viruses found inside that cell. That's what viruses do in nature...facilitate adaptation (as well as cause variation in nature).

The cool thing to see is that our very DNA contains these adaptive viruses. They now estimate that up to 45% of the genetic codes in our double stranded DNA is actually viral information. This is what retroviruses, in particular, do...they infect the cell and incorporate their genetic info into our DNA. That is why they are main viruses involved in cancer AND why cancer can be "genetic" (inherited). This info can be transmitted vertically to the offspring.

The other cool thing to see is that cancer itself is an adaptive process. The viruses that "cause" cancer are simply adapting to the challenges (e.g. carcinogens) that we keep throwing at them. When all else fails, they cause the cell they are designed to protect to start growing out of control in order to ensure the survival of that virus and the cell itself. So, I now look at a tumor as a protective cocoon. Radical idea??? Yup. Does it make sense when you understand what viruses do in nature that is good and vital? It does to me.

So, why don't we all have cancer and have it early in our lives. Once again, because there is another part of the "syndrome" that is necessary...a weakened immune system. Yes, we are killing cancer cells right now (hopefully). The immune system recognizes when a cell is trying to do something that it deems inappropriate or harmful and send in the cavalry....hopefully. This could be just what we (incorrectly) label as an "autoimmune response". No, the body DOES know exactly what it is doing each and every time it does something. I believe that down to my socks. We just don't understand what it is doing sometimes, and this is one of those times.

How does this apply to epilepsy and other neurodegenerative diseases (e.g. MS, Alzheimer's, Parkinson's, ALS)? Again, as we stated above, some viruses love the central nervous system. The two most common brain tumors in vet medicine are the astrocytoma and oligodendroglioma, both viral and of those cells that control many of the supportive functions of the neuron, including the production of the myelin sheath and the control of neurotransmitter levels (glutamate). If there are viruses in there causing tumors, then through "reverse engineering", we can see that there are going to be the processes (e.g. "autoimmune diseases") that precede the formation of tumors, because these are the means by which the immune system controls the tumor production...until it gets overwhelmed by all that we are throwing at it.

I hope this make sense and helps in some way.

John