[GARD/GFCF] My Neurological Journey

[Molly97]

I have been on a hunt to understand my seizures and to get control of them since coming here in May, 2008. I have been in contact with Meetz who suggested that this post be made here. If it needs to be moved, please do so.


This serves to document my neurological journey up to this point. I hope to possibly find someone here who has had a similar journey. The early years are largely anecdotal as there is no one left living who would remember any events. What sent me on this exploration was my frustration with my seizures and a growing realization that my brother, now deceased, had all the classic signs of autism. As I became aware of the meaning of his behavior, I increasingly had the feeling that I myself had only been steps away from autism during my childhood years.

I was raised by my grandmother. She told me of my being an infant unable to sleep without her hand touching me all night long. She moved my crib next to her bed; if her hand moved, I would scream inconsolably. I grew up a distant child, a touch-me-not. No hugs, no kisses, no affection given or received. I looked at no one and at nothing. My grandmother worked with me on my homework and would quiz me relentlessly for tests. She did that until I left home upon college graduation. She told me that the reason that I had "trouble" was because I had been a forceps baby. She never elaborated on the nature of my "trouble", how it was diagnosed, or what any doctor had told her of it. She made it her business for me to be scholastically successful and I was.

On my own, I functioned normally or so I thought. I became increasingly aware of a problem with sensory overload, something I had experienced all my life. My senses were jacked up, running at full throttle, nothing was filtered out. The following is a portion of a poem I've written about how it felt to be me at that time:

Every note of every sound heard
Every detail keenly seen
Every odor an intense invasion of my nostrils
Individual flavors sorted on my palate
Nothing dismissed as inconsequential
Startling stains on my brain.

Mind and body
Raped ruthlessly by
A brain operating without filters,
Cataloging and memorizing everything
Each time my senses are used.
My conscious mind screams
"Enough!! Too much!!"
As my brain dutifully marches on.

An act of self-preservation
I swath myself in a sensory cocoon
My brush with every thing in my small world cursory.
I really want to examine closely
Enjoy the visual world set before me
But the wealth of detail and color creates images
Beyond what my mind can process.

In my early 20's, I had my first seizures that I was aware of. The first one consisted of passing out in the middle of a parking lot aisle; apparently I was lucky I didn't get run over. At first, the seizures were infrequent, but I would come to after passing out in public places. The older I got, the seizures became more frequent until in 1997, they took over my life.

In 1997 as well, I started therapy for Dissociative Identity Disorder. As I became integrated as a whole person mentally, my seizures worsened. Six years later, in 2002, my therapy was completed. I had been identified by that time as having pseudoseizures, brought on by early childhood sexual abuse and the resulting multiple personality disorder. I was put, first on one psychiatric drug, and then another to control uncontrollable seizures. In 2006, I developed tardive kinesis and was removed from all medication.

In May of 2008, having auras from the time I got up until I went to bed, I found CWE. I researched and went on the GARD. My seizures improved to the point that I had only one every week or so, instead of several a day. But in the summer of 2009, I started having sensory hallucinations which I now believe are simple partial seizures. If I have them back-to-back, they are brutal. The seizures due to food triggers have decreased, but I am left with these new seizures, the likes of which I don't remember ever having.

It was at this time that I recalled my sensory overload problems. I went on a hunt, and discovered a neurological problem called Sensory Processing Disorder. As I read the adult checklist of symptoms, I knew that I had more than likely found the rhyme and reason for all the sensory problems I'd experienced all my life.

My question now becomes this: Did seizures create the sensory processing problems, or did the sensory processing problems lead to the seizures? I am convinced they are related. This question becomes the next chapter in my journey to self-awareness.

[Ruth]

Hi Molly, that was very moving. Meetz is right, you are in the right section. I never knew what your life was like. I look forward to your Next Chapter in your journey.

[Nakamova]

Molly, thanks for this. I'm interested in your next chapter too.

For what it's worth, my take on the Seizure/Sensory Processing Disorder thing is that they are correlative but not causal. They seem like aspects of the same thing, a low-threshold vulnerability to sensory overload. Perhaps one evolved into the other.

The dissociative personality disorder may have been an adaptive/protective response to both childhood trauma and sensory overstimulation. Ironically, once you removed the "protection" of the multiple personalities, your integrated brain may have become more vulnerable because now rapid (and potentially seizure-like) neural connections could made more easily across the brain.

[Molly97]

Molly, thanks for this. I'm interested in your next chapter too.

For what it's worth, my take on the Seizure/Sensory Processing Disorder thing is that they are correlative but not causal. They seem like aspects of the same thing, a low-threshold vulnerability to sensory overload. Perhaps one evolved into the other.

The dissociative personality disorder may have been an adaptive/protective response to both childhood trauma and sensory overstimulation. Ironically, once you removed the "protection" of the multiple personalities, your integrated brain may have become more vulnerable because now rapid (and potentially seizure-like) neural connections could made more easily across the brain.

A response like this is exactly why I posted this train of thought. This is, in my opinion, great insight. You've been able to show a connection between all the neurological situations I've found myself over all my life. I am going to chew on it for awhile. Thank you so much for your response.

[Bernard]

I am so greatful to all CWE members who share their stories with alternative treatments here in the History Book. I'm glad the GARD diet is helping.

My question now becomes this: Did seizures create the sensory processing problems, or did the sensory processing problems lead to the seizures?

Well, it seems to me that they are both symptoms of the brain "misfiring". If you are noticing changes in the established patterns, it could mean that the brain is establishing (or strengthening) new pathways. I would think neurofeedback would be helpful in training the right pathways for a more normalized/stable function.

[occb]

I learn something new every time I log on to this site. I've never even heard of sensory processing disorder. Thank you for sharing your story Molly, and I hope you find the responses you're looking for (that Nak is such a smarty-pants, eh?).

[Ruth]

Molly, you are very intelligent. I am learning new things in this topic.

[Molly97]

I learn something new every time I log on to this site. I've never even heard of sensory processing disorder. Thank you for sharing your story Molly, and I hope you find the responses you're looking for (that Nak is such a smarty-pants, eh?).

Unfortunately, it's true; if you look diligently enough, you'll find a disorder to fit any bill. LOL Seriously, it is disorder that can be linked to autism in that children will shut themselves down due to too much sensory input just as they do in autism. It is as much a teen and adult problem as it is a childhood one.

I considered for some time that I may have been autistic for a while in childhood because of my sensory processing problems. I know now that I never was and that provides some comfort in my old age(I'll soon be 62). My brother who was 18 months older than I had all the classic symptoms of autism. I cannot imagine a 50-something man rocking and banging his head into the wall on a daily basis, but that's what my s-i-l told me he was still doing before his death several years ago.

[occb]

Unfortunately, it's true; if you look diligently enough, you'll find a disorder to fit any bill. LOL

Very true. I still haven't found the one that explains me yet

Seriously, it is disorder that can be linked to autism in that children will shut themselves down due to too much sensory input just as they do in autism. It is as much a teen and adult problem as it is a childhood one.

I considered for some time that I may have been autistic for a while in childhood because of my sensory processing problems. I know now that I never was and that provides some comfort in my old age(I'll soon be 62). My brother who was 18 months older than I had all the classic symptoms of autism. I cannot imagine a 50-something man rocking and banging his head into the wall on a daily basis, but that's what my s-i-l told me he was still doing before his death several years ago.

That's just heartbreaking -- your poor brother.

[Kansas Educator]

As an educator, I can tell you that Sensory Integration issues are considered part of the "Autism Spectrum." Autism is no longer thought to be one disorder anymore, but a disorder that can manifest itself in very mild all the way to very severe symptoms. I would say sensory integration issues are on the mild side while full-blown autism would be on the severe side. However, they are all varying degrees of the same things. Skilly is a special ed teacher and might be able to shed more light on this than I can.

[gigi]

Molly97:

What a journey you have been on. Your thread is very heartfelt and enlightening. I went and looked at the check list for SPD for adults. WOW. There sits a whole lot of me on there. Talk about seizure triggers!! Thanks for sharing your story, and I will look for more of your posts. I am 52, and have been on a quest since the internet came along to try to improve my quality of life.
Alas, it is more than just about taking our meds.

[Molly97]

Well... I've been participating in Cinnabar's thread about temporal lobe epilepsy and DID and have reached a conclusion of my own.

After reading extensively about temporal lobe epilepsy and the temporal lobes in general, I am ready to say that more than likely, I have temporal lobe epilepsy.

Alright. Why am I just now drawing this conclusion when I've had severe problems with seizures since 1997? Back then, I didn't care about putting a label to my seizures; I just wanted them to stop. The medication cocktails didn't work and the therapy I did for my DID only made my seizures more pronounced. The more psychologically healthy I became, the worse my seizures became.

I finally was completely taken off all meds back in late 2006. After getting them completely out of my system which took about 8 months(those antipsychotic drugs are NASTY), I suddenly found myself with a clarity of mind I'd never experienced. I could read and remember, follow instructions, do goal-setting and achieve what I wanted to.

But I still felt horrible, had multiple seizures a day. Then in May 2008, I found the GARD. And I was encouraged here to start trying to figure out my triggers. With the food triggers resolved, or at least identified, I was finally living. I still had a seizure or two a week but I didn't feel on the edge of a seizure constantly as before.

Dogtor J says that it can take up to about a year to clear your system of all the bad results of a bad diet. And sure enough, late last spring, I started having sensory hallucinations. These could not be attributed to any food or environmental triggers. And they just go on and on.

Well, when I started investigating these sensory hallucinations, I was led to temporal lobe epilepsy as a possibility. I go to my primary care doc next week, and I'll check it out with him. The truth of the matter is that it doesn't matter that a label has been affixed to my seizures. But it simply is a label that indicates my greater understanding of this neurological journey that I'm on.

[Cint]

Well, when I started investigating these sensory hallucinations, I was led to temporal lobe epilepsy as a possibility. I go to my primary care doc next week, and I'll check it out with him. The truth of the matter is that it doesn't matter that a label has been affixed to my seizures. But it simply is a label that indicates my greater understanding of this neurological journey that I'm on.

Molly,

Are you really expecting an answer from a primary care dr.? I doubt they know much about temporal lobe epilepsy, which is what I also have.

[Molly97]

Cindy,
My primary care doc is the one supervising my care. He has made himself knowledgeable and I trust him. What he doesn't know, he finds out about. He is supervising a number of seizure patients. He is open-minded and is favorable to alternative solutions. It's not a route for everyone, but at least he's not trying to cram a pill down my throat every time I turn around. I've had 5 neurologists in the past who did nothing except get me hooked on some nasty drugs and made incorrect assumptions. I'll take my chances with Dr R who is a well-rounded physician.

[Cint]

Good. That is how my 1st primary care dr. was. Too bad there aren't many like that.

[Ruth]

Cindy,
My primary care doc is the one supervising my care. He has made himself knowledgeable and I trust him. What he doesn't know, he finds out about. He is supervising a number of seizure patients. He is open-minded and is favorable to alternative solutions. It's not a route for everyone, but at least he's not trying to cram a pill down my throat every time I turn around. I've had 5 neurologists in the past who did nothing except get me hooked on some nasty drugs and made incorrect assumptions. I'll take my chances with Dr R who is a well-rounded physician.

I talked to my doctor about the GARD diet and she said nothing. She made my next appointment for April. Usually, she sees me every two months.

It is great that you have a great doctor. I wish I could find one.

I have eliminated milk. I noticed it was causing me to have my asthma.

I, too, am learning something everytime I come here. Molly, you are a precious jewel.