1. < Epilepsy & Seizures

Trying to understand seizures

Posted by artificialsugar @artificialsugar, Jul 6, 2021

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.

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Chris Gautier OR Santosha | @santosha | Jul 16, 2021
In reply to @lsittll "Hello @santpsha When I was able to reverse my Deja vu seizure most which were in..." + (show)
@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.

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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

REPLY
Leonard | @jakedduck1 | Jul 16, 2021

@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

REPLY
1 reply
Chris Gautier OR Santosha | @santosha | Jul 22, 2021
In reply to @jakedduck1 "@santosha “we should not be ashamed by our seizures. I know it is easier to say..." + (show)
@jakedduck1

@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

Jump to this post

Hi @jakeduck1, Good Morning

Thanks for sharing your experience and opinions!!!
I agree with you, it is very important to accept our condition and live accordingly. Not accepting it brings turbulences and just turns things more difficult. Again it is easier to say than to practice it. I got quite angry when I got diagnosed some years ago, at the age of 48 years. The progress of the disease, hard times during several treatments, and the way I have reacted to it have limited my life to epilepsy. But with the support of my neuropsychologist, I have today a better acceptance of it. We are much more than the bad things that have happened to us!
Those who have prejudice around people with epilepsy should be the ones to be ashamed! Who has limitations? We or people that cannot see the other and have no compassion? As a famous Brazilian chef has said (his daughter was born with epilepsy): “ You are a very special daughter who teaches me a lot. You are a great fortress, an example for everyone. Never give up on being the best you can be. Because you have been doing that since the day you were born”.
However, I confess I continue to hide my condition from certain people, those who I know have little compassion and could hurt me a lot. I am not that strong yet. Still, I agree when you say “I believe those who hide their condition do so out of shame and embarrassment and thereby perpetuate the Epilepsy stigma to continue.” Hope to be able one day to be 100% honest about my condition, not hiding it from anyone. Once I have heard that we give others the authority to mess with us. This is somehow true.

“We cannot choose what happens to us, but we can choose how to react to the experiences” Edith Eger (author of The Choice).

Lots of santoshas (contentments) to all of you!

REPLY
1 reply
Leonard | @jakedduck1 | Jul 22, 2021
In reply to @santosha "Hi @jakeduck1, Good Morning Thanks for sharing your experience and opinions!!! I agree with you, it..." + (show)
@santosha

Hi @jakeduck1, Good Morning

Thanks for sharing your experience and opinions!!!
I agree with you, it is very important to accept our condition and live accordingly. Not accepting it brings turbulences and just turns things more difficult. Again it is easier to say than to practice it. I got quite angry when I got diagnosed some years ago, at the age of 48 years. The progress of the disease, hard times during several treatments, and the way I have reacted to it have limited my life to epilepsy. But with the support of my neuropsychologist, I have today a better acceptance of it. We are much more than the bad things that have happened to us!
Those who have prejudice around people with epilepsy should be the ones to be ashamed! Who has limitations? We or people that cannot see the other and have no compassion? As a famous Brazilian chef has said (his daughter was born with epilepsy): “ You are a very special daughter who teaches me a lot. You are a great fortress, an example for everyone. Never give up on being the best you can be. Because you have been doing that since the day you were born”.
However, I confess I continue to hide my condition from certain people, those who I know have little compassion and could hurt me a lot. I am not that strong yet. Still, I agree when you say “I believe those who hide their condition do so out of shame and embarrassment and thereby perpetuate the Epilepsy stigma to continue.” Hope to be able one day to be 100% honest about my condition, not hiding it from anyone. Once I have heard that we give others the authority to mess with us. This is somehow true.

“We cannot choose what happens to us, but we can choose how to react to the experiences” Edith Eger (author of The Choice).

Lots of santoshas (contentments) to all of you!

Jump to this post

@santosha
Thank you for your response.
I know what your saying about how much more difficult it is to say than to put it into practice.

The stigma and discrimination that encompasses epilepsy are frequently more overwhelming than the seizures are. People with epilepsy are often targets of prejudice. Not only can the stigma of the condition prevent job opportunities but also discourage people from seeking medical treatment. Some people are unable to admit to themselves they have Epilepsy. I can understand why they want to avoid becoming identified with the condition. I knew a policeman who refused to tell the department or anyone else he had Epilepsy. He was a motorcycle officer and had he told he would have lost his drivers license. He should’ve known more than anyone how important it was to disclose his condition but he never came to terms In the United States of America, until the 1970s, it was legal to deny people with seizures access to restaurants, theatres, recreational centres and other public buildings. his seizures.

In the U.S. until the 1970s, it was legal to deny people with seizures access to restaurants, theatres, recreational centres and other public buildings.
In India we are not allowed to drive even if seizures are controlled.
In China and India people with Epilepsy can forbid marriages and have marriages annulled.
In India only one seizure prevents residents from driving for life.
People in Great Britain revoked the annulment in 1971.
Demon possession is still a widely held belief especially in Asia.
Jake

REPLY
2 replies
Chris Gautier OR Santosha | @santosha | Jul 28, 2021
In reply to @jakedduck1 "@santosha Thank you for your response. I know what your saying about how much more difficult..." + (show)
@jakedduck1

@santosha
Thank you for your response.
I know what your saying about how much more difficult it is to say than to put it into practice.

The stigma and discrimination that encompasses epilepsy are frequently more overwhelming than the seizures are. People with epilepsy are often targets of prejudice. Not only can the stigma of the condition prevent job opportunities but also discourage people from seeking medical treatment. Some people are unable to admit to themselves they have Epilepsy. I can understand why they want to avoid becoming identified with the condition. I knew a policeman who refused to tell the department or anyone else he had Epilepsy. He was a motorcycle officer and had he told he would have lost his drivers license. He should’ve known more than anyone how important it was to disclose his condition but he never came to terms In the United States of America, until the 1970s, it was legal to deny people with seizures access to restaurants, theatres, recreational centres and other public buildings. his seizures.

In the U.S. until the 1970s, it was legal to deny people with seizures access to restaurants, theatres, recreational centres and other public buildings.
In India we are not allowed to drive even if seizures are controlled.
In China and India people with Epilepsy can forbid marriages and have marriages annulled.
In India only one seizure prevents residents from driving for life.
People in Great Britain revoked the annulment in 1971.
Demon possession is still a widely held belief especially in Asia.
Jake

Jump to this post

Hi @jakedduck1
I did not know about the facts you have shared here in your last post, especially in the US and UK. Thank God this has changed! I have read that demon possession in people with epilepsy is also a belief in Africa, unfortunately. India is a country I had plans to visit one day. I see it is best to investigate more carrefully about epilepsy discrimination in this country before traveling there. Thanks for sharing.

REPLY
lsittll | @lsittll | Jul 29, 2021
In reply to @jakedduck1 "@santosha Thank you for your response. I know what your saying about how much more difficult..." + (show)
@jakedduck1

@santosha
Thank you for your response.
I know what your saying about how much more difficult it is to say than to put it into practice.

The stigma and discrimination that encompasses epilepsy are frequently more overwhelming than the seizures are. People with epilepsy are often targets of prejudice. Not only can the stigma of the condition prevent job opportunities but also discourage people from seeking medical treatment. Some people are unable to admit to themselves they have Epilepsy. I can understand why they want to avoid becoming identified with the condition. I knew a policeman who refused to tell the department or anyone else he had Epilepsy. He was a motorcycle officer and had he told he would have lost his drivers license. He should’ve known more than anyone how important it was to disclose his condition but he never came to terms In the United States of America, until the 1970s, it was legal to deny people with seizures access to restaurants, theatres, recreational centres and other public buildings. his seizures.

In the U.S. until the 1970s, it was legal to deny people with seizures access to restaurants, theatres, recreational centres and other public buildings.
In India we are not allowed to drive even if seizures are controlled.
In China and India people with Epilepsy can forbid marriages and have marriages annulled.
In India only one seizure prevents residents from driving for life.
People in Great Britain revoked the annulment in 1971.
Demon possession is still a widely held belief especially in Asia.
Jake

Jump to this post

@jakedduck1 Thank you for sharing. I never knew all this was true. I only thought people with epilepsy were discriminated against so much. The stigma extends throughout the world. I went to a Seventh Day Adventist church with a friend. The preacher said that persons with epilepsy are possessed with demons.

Take care
Laurie

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