Epilepsy or seizure disorder? Why stroke?

Posted by tonyde @tonyde, Sep 26, 2023

Do I have epilepsy or a seizure disorder? How do they differ? What would cause a stroke? My neurologist tells me my MRI's show many strokes and has asked "when did you have your last seizure?" or stated "let's try these meds to control your seizures". He has never referred to my having a seizure disorder or epilepsy and, for whatever reason, I'm relunctant to ask. My seizures started after a car accident 20 years ago and were referred to as frontal lobe partial complex seizures. My seizures were under control for many years, three years ago they have increased in intensity to "grand mal" type seizures, have become more frequent and sometimes multiple seizres a few minutes apart. I have had difficulty speaking and walking for as much as 12 hours after a seizure, a few caused ER visits and I have been hospitalized twice. I had one seizure while in the hospital that caused me to make very loud noises, I overheard the nurse say "I heard him all the way down to the nurses station", the neurologist replied, "I would have thought he was faking had I not saw that" and the nurse said, "we called in the stroke team". I was too out of it to ask questions. What would have caused a stroke?

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

Hi @baa
I have made my comments in your other post.
One thing that I might not have mentioned yet, being treated by an epileptologist instead of just a neurologist has made a great difference in my treatment of epilepsy. Epilepsy is a complex condition that requires a neurologist who is specialized in it.
As @tonyde has well mentioned, do your own research and do not be afraid to quiz your doctor. Studying epilepsy and understanding epilepsy has been fundamental to getting well again. The Epilepsy Foundation has great material, it has been my school.
Do not give up! I have been there where you are right now in 2019-2021 and through persistence and help from good professionals, I got well again.
Chris (Santosha)

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Hi @tonyde
How have you been doing lately?
Curious to know if you have tried a gluten-free diet.
Chris (Santosha)

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@santosha

Hi @baa
I have made my comments in your other post.
One thing that I might not have mentioned yet, being treated by an epileptologist instead of just a neurologist has made a great difference in my treatment of epilepsy. Epilepsy is a complex condition that requires a neurologist who is specialized in it.
As @tonyde has well mentioned, do your own research and do not be afraid to quiz your doctor. Studying epilepsy and understanding epilepsy has been fundamental to getting well again. The Epilepsy Foundation has great material, it has been my school.
Do not give up! I have been there where you are right now in 2019-2021 and through persistence and help from good professionals, I got well again.
Chris (Santosha)

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I so appreciate your advice and knowledge! Going to try🌺

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@santosha

Hi @tonyde

I have learned some time ago a classification of triggers that I find interesting: physical, external and internal.
Physical triggers:
Examples: gl├║ten, little or bad sleep, menstruation, low sodium, flashing lights, etc.
External Triggers:
Speaking in public is something that stresses me much and is an external trigger to my seizures
Internal Triggers:
Examples: emotions such as fear, stress, anxiety, rage, etc.

I do have signs that a seizure is going to happen, though I do not always remember them after the seizures. I believe the seizure erased that from my memory. When I have this sensibility I try to stop what I am doing and do some breathing. It helps sometimes. Give it a try.

Chris (Santosha)

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Hi Chris, I've tried reducing gluten and didn't see any impact, I have all of the other triggers you mention (except the obvious menstruation}.

One thing that helped me with public speaking was an article that quoted Bob Hope when asked if he was nervous going on stage, his response was everyone gets nervous speaking in public. Don't let being nervous stress you out, it means you're normal.

Worrying about having a seizure in a stressful situation can in itself cause enough stress to bring on a seizure. I went to a funeral of a very close friend recently and very concerned with having a seizure during his service, fortunately nothing happened.

My biggest worry is having a seizure in front of my kids and grandkids.

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@tonyde

Hi Chris, I've tried reducing gluten and didn't see any impact, I have all of the other triggers you mention (except the obvious menstruation}.

One thing that helped me with public speaking was an article that quoted Bob Hope when asked if he was nervous going on stage, his response was everyone gets nervous speaking in public. Don't let being nervous stress you out, it means you're normal.

Worrying about having a seizure in a stressful situation can in itself cause enough stress to bring on a seizure. I went to a funeral of a very close friend recently and very concerned with having a seizure during his service, fortunately nothing happened.

My biggest worry is having a seizure in front of my kids and grandkids.

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Hi @tonyde
Great to have news from you. I understand that to really see the benefits of this diet (gluten-free diet), one has to be 100% gluten-free. I sometimes have eaten something with gluten by mistake, having a seizure after it.
I have been learning to deal better with things that make me nervous and bring me fear. Fear by itself can also be a trigger to seizures. Thankfully, nothing happened during this funeral you went. The last time I went to my new hairdresser, I told him about my epilepsy and my occasional seizures. He was so comforting that the fear of having a seizure was gone and nothing happened. Telling people that you have epilepsy and that you might have a seizure occasionally can reduce much this fear. Have you spoken about your epilepsy with your kids? Perhaps the grandkids are still too young to understand it.
As to public speaking, thankfully I do not need to do it anymore ­čÖé
Have a nice afternoon!
Chris (Santosha)

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Hi Chris, I spoke to the wife of my friend that passed about the possibility of my having a seizure, she was aware of my situation and suggested I attend the services before the general public to give me time to grieve without the concern of a public seizure display. That went a long way to helping me cope.

My kids are aware of my seizures, they witnessed a few small seizures. They "saw" only one major seizure; I use quotes because I felt a little strange and moved into another room. I'm sure they heard; they were kind enough not to bring it up. I apologized, because that's what I need to do for me. The kids told me no apologize necessary, they understand the situation and know it's beyond my control.

Some of my neighbors found out when I was hospitalized because of a bad seizure a few years ago. That's a good thing in case I have an issue while walking the dog, however, I sometimes feel like they're looking at me as if my head is going to explode any minute.

This has been a 20+ year seizure journey for me, I haven't been able to make the fear of a seizure go away but I have been able to recover quicker from people's opinions.

Do you know of anyone with a seizure service dog?

Tony

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Good Morning @tonyde
Great that you have been finding ways to cope better with epilepsy and your seizures! For me, speaking about my epilepsy with others and letting them know about possible seizures, gives me much comfort. But first, I had to accept my epilepsy and not be ashamed of it. My neuropsychologist has helped me much in this sense.
I agree very much with your children, we should not excuse ourselves for our seizures, they are beyond our control. Life is an exchange. As a mother, you certainly have spent nights without sleep taking care of your children when they were younger.
I have also worked on my fear of having a seizure in public with my neuropsychologist and through yoga. Sometimes, I still do have this fear, but then I think again what I have learned in yoga:
The mind is a terrible lady, but it can be a great servant. The mind should not command our life, we should command our mind. If we do not control our mind, it takes control over the life of our body. We must learn how to use our minds!
I have also thought of the possibility of having a service dog, more in the past than nowadays that I can better manage my fear. But this could be a great solution to help you manage your fear and give you assurance you are not alone. Have you had the support of a neuropsychologist to work on those emotions? If not, this could be another way to help you manage your fear of having seizures.
Ending my message with a quote from my yoga teacher:
"Everything that refers to what will happen is a projection of my mind and everything that refers to what has already happened is from my memory. Whether it's a projection or a memory, it's a product of my mind. There is only one true thing: the present moment; the here and now."
Have a nice day!
Chris

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