Trying to understand seizures

Posted by artificialsugar @artificialsugar, Jul 6 6:29pm

Hi I'm new here, and I'm trying to get an idea of what causes my seizures, and now looking to see what type of doctor I should see. My Background: Type 1 diabetic since 1987. I have had several seizures over probably the last 10 years, and the first were probably low sugar related. The first neurologist I can't remember when I saw him but maybe after my 2nd or 3rd, said take these: Lamotrigine. I tried this for a couple years and noticed at work things were getting cloudy. I stopped taking them, and didn't have any issues for maybe a year. I started having seizures again, and did self research(no longer seeing neurologist) and thought it was maybe caused by diet coke(aspartame) went cold turkey and they disappeared. After almost a year later started drinking it during summer in small quantity. Then around Thanksgiving brother in-law visited (always bought diet coke for his visit) and I started consuming large amounts that week. I felt a seizure coming on, but was able to reverse out of it. Started to think aspartame is causing them. Went back to just water and researched more about aspartame. Looks like a standard issue for some drinkers of diet coke. I can't stand water so I started doing Sucralose water sweetners, and I put a lot in every drink, again had a seizure. So went back to water and they disappeared again. So again sick of water, and thought maybe Stevia, it is not a chemical (I was thinking the large amounts of artificial sweeteners was causing the brain waves to cross fire and cause seizures). Again I had a seizure when I was consuming Stevia in large amounts. Today, I'm thinking it's not a chemical poisoning, but maybe my body causing a seizure because when I'm low sugar, I have large amounts of what looks like sugar, but it doesn't raise my blood sugars. So the brain does a reset and a seizure occurs. I have been drinking water now, and will avoid all artificial sweeteners and will continue to test over the next year to see if I'm now clean again. Is there a doctor I can see who is researching something similar, and maybe this question can help others who have the same issue.

@artificialsugar
Although quite a few people claim aspartame causes their seizures research doesn't back up that theory. Although I doubt anything in excess probably isn't good except candy of course which is my downfall and although Sugar is thought to be a trigger seizure trigger in some people it doesn't seem to effect me other than adding a pound or two now and then. I assume you've been diagnosed with Epilepsy. Either way how are they usually manifested? Seizures are very individualized. Even though people work the same diagnosis can present with completely different symptoms. Are your seizures Generalized or Focal? Were there any abnormalities in your MRI, EEG or other tests? It is very dangerous to abruptly stop seizure medications. They may lead to a dangerous condition known as Convulsive Status Epilepticus which is a medical emergency and may potentially be fatal. None-Convulsive Focal Status isn't as dangerous as Tonic-Clonic seizures. The longer seizures last the more difficult they are to stop. I think you're wise in discontinuing the artificial sweeteners however stopping your medication cold turkey was not. When was your last seizure and how long do they last.
It's a good idea to keep a seizure journal with the time they occur, @artificialsugar
Although quite a few people claim aspartame causes their seizures research doesn't back up that theory. Although I doubt anything in excess probably isn't good except candy of course which is my downfall and although Sugar is thought to be a trigger seizure trigger in some people it doesn't seem to effect me other than adding a pound or two now and then. I assume you've been diagnosed with Epilepsy. Either way how are they usually manifested? Seizures are very individualized. Even though people work the same diagnosis can present with completely different symptoms. Are your seizures Generalized or Focal? Were there any abnormalities in your MRI, EEG or other tests? It is very dangerous to abruptly stop seizure medications. They may lead to a dangerous condition known as Convulsive Status Epilepticus which is a medical emergency and may potentially be fatal. None-Convulsive Focal Status isn't as dangerous as Tonic-Clonic seizures. The longer seizures last the more difficult they are to stop. I think you're wise in discontinuing the artificial sweeteners however stopping your medication cold turkey was not. When was your last seizure and how long do they last.
It's a good idea to keep a seizure journal with time & what you were doing prior to if you remember, how long they last, type, all medication changes, possible trigger, medication side effects, you probably want to include diet information.
Inform anyone you live with or friends to video your seizure.
Thank care,
Jake

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@artificialsugar
I overlooked your Diabetes. People with type 1 diabetes are three times more likely to have a seizure disorder.
Jake

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@ artificial sugar hello! Welcome to the team! It is interesting to know that you said you were able to reverse out of a seizure. I know other that have felt the same way. Persons with de'ja'vu seizure symptoms often are able to do this.
Laurie

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@jakedduck1 – I did stop taking my Lamotrigine years ago, because it left me in a fog (I'm an engineer and Software developer – and it was running my career). The neurologist couldn't explain my seizures other than an electrical storm in my brain, and here's some medicine to prevent it. I debug issues in my software all the time, and have to find the true issue, and that is what I had to do with my seizures – not a quick hack for a band-aid fix. I'm not saying the artificial sugar chemicals are causing my seizures, because 3 different makes of artificial sugars all caused seizures with me. I'm thinking my bodies metabolism is confused, because even if it's artificial sugar, it still thinks I'm digesting large amounts of sugars (I found the days of seizures I normally consumed large amounts of artificial sugars: controlled intake of only diet coke-aspartame, water flavoring-sucralose, or flavored water-stevia when I was researching my seizures), and it doesn't understand why my sugar is so low because I shot up insulin too early or too much, and having very low sugar level. I'm hoping someone here is a researcher looking into this cause.

@lsittll one interesting thing about the seizures and different products of artificial sugars is the type of aura I would get before the seizure, they were not exactly the same. Not sure if this was due to length of time between seizures and researching but they seemed different.

Thanks for your inputs

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@artificialsugar

@jakedduck1 – I did stop taking my Lamotrigine years ago, because it left me in a fog (I'm an engineer and Software developer – and it was running my career). The neurologist couldn't explain my seizures other than an electrical storm in my brain, and here's some medicine to prevent it. I debug issues in my software all the time, and have to find the true issue, and that is what I had to do with my seizures – not a quick hack for a band-aid fix. I'm not saying the artificial sugar chemicals are causing my seizures, because 3 different makes of artificial sugars all caused seizures with me. I'm thinking my bodies metabolism is confused, because even if it's artificial sugar, it still thinks I'm digesting large amounts of sugars (I found the days of seizures I normally consumed large amounts of artificial sugars: controlled intake of only diet coke-aspartame, water flavoring-sucralose, or flavored water-stevia when I was researching my seizures), and it doesn't understand why my sugar is so low because I shot up insulin too early or too much, and having very low sugar level. I'm hoping someone here is a researcher looking into this cause.

@lsittll one interesting thing about the seizures and different products of artificial sugars is the type of aura I would get before the seizure, they were not exactly the same. Not sure if this was due to length of time between seizures and researching but they seemed different.

Thanks for your inputs

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@artificial sugar if you mind me asking what type of seizure do you have? i.e. psychomotor.. Psychomotor seizures, which I have, have auras that can manifest themselves in many ways.

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Hi @Artifialsugar
First thanks for sharing your situation. I always learn so much from the stories and situations shared by others.
Very recently I have read a book called “Brave New Medicine – A doctor’s unconventional path to healing her autoimmune illness” from Cynthia Li, MD. Great book! Even if it is not about epilepsy, it has brought me several reflections regarding epilepsy.
One of them regards what you eat. There is a great correlation between gut and autoimmune disease. Curious, I have checked if there is also this type of correlation in epilepsy. And I have seen some recent studies (pubmed and elsevier) reporting that there is evidence that dysbiosis in the gut may be associated with certain forms of epilepsy. The ketogenic diet changes the composition and function of the gut microbiome. But further studies are still needed to confirm the clinical relevance of this discovery. Have a look at studies regarding the gut and epilepsy on the internet. You will find many of them.
I thought it was worth sharing that with you and the group.
All the best!
@santosha

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@lsittll

@ artificial sugar hello! Welcome to the team! It is interesting to know that you said you were able to reverse out of a seizure. I know other that have felt the same way. Persons with de'ja'vu seizure symptoms often are able to do this.
Laurie

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Hi @artificialsugar and @Isittll
I also have been able to reverse some seizures during the aura stage, more in the past than currently. When I have an aura, I stop immediately what I am doing, walk, look in different directions and so I can sometimes reverse a complex/deja vu seizure. Curious to know what you both do that can reverse your seizures.

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Hello @santpsha
When I was able to reverse my Deja vu seizure most which were in my sleep, I would look in the other direction. I would think of a situation there where I would not want to have a seizure. Sometimes it helped and sometimes it did not.
During the short time I had daytime auras which I was afraid would lead to seizures I would do the same things, That helped. But out of fear, like being on the bus, I got off the bus because I did nt want anyone to see me have a seizure. I also threw myself on the ground one day out of fear that I was going to have a seizure.

My seizures have changed now that I have gotten older my seizures have changed, I now have spells of apnea/ I gasp when I have a seizure. Seizures are under much better control and cannot do this.

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@lsittll
I hope your not embarrassed or ashamed by your seizures. What difference does it make if someone sees you. Why do you care what others might think?
Jake

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@jakedduck1

@lsittll
I hope your not embarrassed or ashamed by your seizures. What difference does it make if someone sees you. Why do you care what others might think?
Jake

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@jakeduck1
I am embarrassed and ashamed of my seizures and I always will be. It is hard for me to tell others that I have seizures but I do not care about what others think! The total rejection and treatment I received for over half my life has left an unending scar on my life.

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@lsittll

Hello @santpsha
When I was able to reverse my Deja vu seizure most which were in my sleep, I would look in the other direction. I would think of a situation there where I would not want to have a seizure. Sometimes it helped and sometimes it did not.
During the short time I had daytime auras which I was afraid would lead to seizures I would do the same things, That helped. But out of fear, like being on the bus, I got off the bus because I did nt want anyone to see me have a seizure. I also threw myself on the ground one day out of fear that I was going to have a seizure.

My seizures have changed now that I have gotten older my seizures have changed, I now have spells of apnea/ I gasp when I have a seizure. Seizures are under much better control and cannot do this.

Jump to this post

Hi @lsittll
Happy to know that your seizures are much better under control nowadays!!!!
Exactly, just looking in a different direction would sometimes help to reverse a seizure. Thanks for sharing it!!!! Since 2020, I also use a rescue spray (CBD +THC) to reverse my seizures. Works pretty well.
I agree with @jakedduck1, we should not be ashamed by our seizures. I know it is easier to say than to experience it. It is something I have been working on.
Coming back to the book "Brave New Medicine", yesterday I have watched a great interview with Dr. Cynthia Li about her healing journey. It is so inspiring! As I can not copy and paste the link, for those interested look for "How a Doctor Cured Her Autoimmune Disease with Functional Medicine" in the YouTube, What would medicine look like if doctors had experienced themselves a chronic disease?
A great weekend to all of you!
Santosha

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@santosha
“we should not be ashamed by our seizures. I know it is easier to say than to experience it.”
I agree it is much easier to say than to actually put into practice. When I first came down with epilepsy the first part of that year a seizure now & then, no big deal but it continued to get worse. Once a week, every few days, every other day then daily. I was asked to leave school, I had trouble accepting the rejection, stigmas, the onlookers fear and hateful comments, talking behind your back. Walk up to the group who you thought were your friends and everyone is speechless. I wasn’t as brave and strong as I thought. I had a nervous breakdown. But I decided I had to accept my condition and live accordingly. There were many things I couldn’t do but I concentrated on doing what I could.
Sadly too many people refuse to accept or come to terms with their Epilepsy. Most people I talk to choose to hide their seizure disorder. If we can’t be honest and forthright about our condition should we expect others to be more understanding? I believe those who hide their condition do so out of shame and embarrassment and thereby perpetuate the Epilepsy stigma to continue. People will accomplish more good for our cause by being open. I’d much rather let everyone know so they knew what to do in case I have have a seizure and it’s an opportunity to dispell the myths.
Have a happy and hopefully seizure free day,
Jake

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