Do you have pre-seizure issues or symptoms?

Posted by Teresa, Volunteer Mentor @hopeful33250, May 22 8:47am

I’ve been reading a book about a person who has had seizures since the teenage years. I’m most impressed with the “pre-seizure” symptoms. Seizures seem to come with fatigue, stress, hunger, and the hard to understand auras.

Some seizures involve staring off while others involve convulsions. Please share, as you are comfortable doing so, about your seizures. Are they convulsive? Do they usually happen in the evening when you are most tired? Do you always have a clue(s) before your seizure starts?

When I began having my seizures (at 6 1/2) I used to say Mommy/Daddy "something scares my tummy" and I would grab hug them because of my fear. I had a convulsion and almost drowned in the tub in it and then went to a pediatric neurologist. He said I had visceral epilepsy and put me on anticonvulsants. The convulsions stopped but the seizures didn't. I stopped grabbing hold of people in public, I just threw myself on the ground and screamed. I tried many medications none were successful so they did a partial right temporal lobectomy. Seizures persisted despite other medications so a doctor at Montreal Neurological Institute performed a partial lobectomy. This surgery only made the seizures nocturnal. They were not controlled. Seizures are now like nightmares. I scream "Laurie, Laurie." I still have have an aura of fear. (After all this surgery there is almost no part of my right temporal lobe left)

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@hopeful33250
Hello,
I ordered the book you are reading and mine is supposed to come on the 29th.
‏Does he mention types of seizures or just his symptomatologyi? He may be referring to either the PRODROMAL phase which is the first part of a seizure which happens in approximately 20% of patients. These symptoms happen minutes to days before a seizure and can vary greatly between people and where in the brain the seizure begins in which also determines seizure type. They can include among others, headache, irritability, depression, insomnia, agitation, concentration issues,lightheadedness, vertigo, dizziness,mood changes, overly tired, intestinal or urological symptoms
Perhaps he's referring to an aura
which is a seizure in and of it’s self. They generally last from seconds to minutes. They used to be called simple partial seizures, the current
terminology is focal aware seizure. Out of over 13,000 seizures I have only had one aura that I remember and it was a déjà vu experience.
He mentioned staring which could also be an Absence seizure (which is a generalized seizure.) I'm curious if he goes into more specific details.
My Epilepsy started when I was 15 although my brother says I was 14 so who knows. But that’s when I had my first tonic-Clonic seizure but my Absence seizures started before that. But probably 99% were convulsive Tonic-Clonic which included many Status episodes. My seizures happen at various times from morning to night But I’ve never had nocturnal seizures, thankfully.
Well Teresa I guess I went a little overboard here, just call me jabber jaws,
Jake

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@jakedduck1

@hopeful33250
Hello,
I ordered the book you are reading and mine is supposed to come on the 29th.
‏Does he mention types of seizures or just his symptomatologyi? He may be referring to either the PRODROMAL phase which is the first part of a seizure which happens in approximately 20% of patients. These symptoms happen minutes to days before a seizure and can vary greatly between people and where in the brain the seizure begins in which also determines seizure type. They can include among others, headache, irritability, depression, insomnia, agitation, concentration issues,lightheadedness, vertigo, dizziness,mood changes, overly tired, intestinal or urological symptoms
Perhaps he's referring to an aura
which is a seizure in and of it’s self. They generally last from seconds to minutes. They used to be called simple partial seizures, the current
terminology is focal aware seizure. Out of over 13,000 seizures I have only had one aura that I remember and it was a déjà vu experience.
He mentioned staring which could also be an Absence seizure (which is a generalized seizure.) I'm curious if he goes into more specific details.
My Epilepsy started when I was 15 although my brother says I was 14 so who knows. But that’s when I had my first tonic-Clonic seizure but my Absence seizures started before that. But probably 99% were convulsive Tonic-Clonic which included many Status episodes. My seizures happen at various times from morning to night But I’ve never had nocturnal seizures, thankfully.
Well Teresa I guess I went a little overboard here, just call me jabber jaws,
Jake

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@jakedduck1
Hi Jake,
I'm not sure what his final diagnosis will be. I'm a bit more than half-way through the book and it seems that every time he sees a different neurologist, his previous diagnosis is changed to something different. Once you read it, I'll be interested in your impression.

Liked by Leonard

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@hopeful33250
I have an awful memory so I’ll read 10 pages or so then go read the previous five or so pages so it obviously takes me a long time to get through a book. It comes in handy sometimes when I see a movie though, I can rewatch it and sometimes I remember bits and pieces other times it’s like I’ve never seen it before.
Jake

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@jakedduck1

@hopeful33250
I have an awful memory so I’ll read 10 pages or so then go read the previous five or so pages so it obviously takes me a long time to get through a book. It comes in handy sometimes when I see a movie though, I can rewatch it and sometimes I remember bits and pieces other times it’s like I’ve never seen it before.
Jake

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I understand @jakedduck1, memory problems create new experiences all the time, don't they? Sometimes when I'm reading I'll take notes on character names, relationships, etc. It helps so that you don't have to re-read everything all the time. You'll especially enjoy reading about how the author of this book handled many of the memory problems he developed.

Liked by Leonard

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What is the title of the book? Someone suggested on this site to read "A Mind Unraveled". In the end he was taking a drug that lead to to vocalizations sounding like barking. The doctor said he had myoclonic seizures with ictal barking. He married and had 2 sons which he was happy about but seemed risky. He had lost a lot of memory but was still able to write the book.

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@hopeful33250

Hi Teresa,
I just received A Mind Unraveled and am attempting to read it but my reading skills rank right up there with my cooking skills so no telling how long it’ll take me to get through it. I just hope I remember it by the time I do.
@heal33
Hello,
You mentioned in your post “ He married and had 2 sons which he was happy about but seemed risky.”
Did he say he felt it was risky or is it your believe that it was risky? If you believe it was risky I’m just curious why you came to that conclusion?
Jake

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@jakedduck1

@hopeful33250

Hi Teresa,
I just received A Mind Unraveled and am attempting to read it but my reading skills rank right up there with my cooking skills so no telling how long it’ll take me to get through it. I just hope I remember it by the time I do.
@heal33
Hello,
You mentioned in your post “ He married and had 2 sons which he was happy about but seemed risky.”
Did he say he felt it was risky or is it your believe that it was risky? If you believe it was risky I’m just curious why you came to that conclusion?
Jake

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He did. He and his wife had been told epilepsy had a genetic component.

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@heal33
Although epilepsy can have hereditary components the risk of children developing it from their parents is low. It’s important to realize that not all epilepsies that are due to genetic causes are inherited. Epilepsy has a genetic cause in approximately 30 to 40% of cases.
If only the father has it the risk of their child having epilepsy is approximately 1- 3.6%.
It is more likely brothers and sisters will develop epilepsy than it is for the parents child to inherit it. If only the mother has epilepsy the risk of passing it to her children is higher, approximately 2.9 – 8.7%
If both parents have epilepsy the chance of it being passed down to the child is only slightly increased.
The risk of a parent passing Epilepsy to a daughter(s) is slightly increased compared to the risk in a son(s). Also the risk of passing epilepsy on increases if the parent developed epilepsy prior to age 20 and the type of Epilepsy plays a part also.
Jake

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Is there a moderator to this site? Never hear any comments.

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Hello @heal33 and thank you for reaching out about moderators. To answer your question, yes, there are moderators and mentors both on Mayo Clinic Connect. I have been reading the conversation between you, @jakedduck1 @hopeful33250 and @lsittll about the book. @hopeful33250 had a great question about “pre-seizure” symptoms like fatigue, stress, hunger, and the hard to understand auras. Do you have any experiences you would be willing to share related to "pre-seizure" symptoms?

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@kellyhahn1

Hello @heal33 and thank you for reaching out about moderators. To answer your question, yes, there are moderators and mentors both on Mayo Clinic Connect. I have been reading the conversation between you, @jakedduck1 @hopeful33250 and @lsittll about the book. @hopeful33250 had a great question about “pre-seizure” symptoms like fatigue, stress, hunger, and the hard to understand auras. Do you have any experiences you would be willing to share related to "pre-seizure" symptoms?

Jump to this post

@kellyhahn1
Hello Kelly,
I was curious about Lisa Lucier (@lisalucier). I haven’t seen her post in the epilepsy/seizure section for quite a while now. I thought she worked at Mayo Clinic. If so is she still there? I hope all is well with her.
Jake

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@jakedduck1

@kellyhahn1
Hello Kelly,
I was curious about Lisa Lucier (@lisalucier). I haven’t seen her post in the epilepsy/seizure section for quite a while now. I thought she worked at Mayo Clinic. If so is she still there? I hope all is well with her.
Jake

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Hi @jakedduck1, thanks for your asking about Lisa. With COVID-19, there have been numerous furloughs and shifting of duties within Mayo Clinic staff. Lisa and the other moderators will return, hopefully soon. in the meantime, Kelly, Amanda and I are continuing moderation of the community, supported by active members like yourself.

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@lsittll

When I began having my seizures (at 6 1/2) I used to say Mommy/Daddy "something scares my tummy" and I would grab hug them because of my fear. I had a convulsion and almost drowned in the tub in it and then went to a pediatric neurologist. He said I had visceral epilepsy and put me on anticonvulsants. The convulsions stopped but the seizures didn't. I stopped grabbing hold of people in public, I just threw myself on the ground and screamed. I tried many medications none were successful so they did a partial right temporal lobectomy. Seizures persisted despite other medications so a doctor at Montreal Neurological Institute performed a partial lobectomy. This surgery only made the seizures nocturnal. They were not controlled. Seizures are now like nightmares. I scream "Laurie, Laurie." I still have have an aura of fear. (After all this surgery there is almost no part of my right temporal lobe left)

Jump to this post

I know exactly what you mean when you said you would say something scares my tummy. I'm in my 50s and that's how a lot of my auras would start or I would have a strong de ja vu feeling. The last one I had was almost like being on a roller coaster right before you go down that big hill. I was picking out beef in the store and when I looked down, I felt that feeling when you go speeding down a steep hill and it gets your stomach. Then the meat looked farther and farther away and almost like I everything turned to tunnel vision. I'd never had one like that. The next thing I knew I was in an ambulance. They are horrible. I wouldn't wish them on anyone.

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My seizures are short. I'm slightly out of it but don't lose consciousness. I have tried different medications none of them work. I have tried neurofeedback and the ketogenic diet which I was on for 1 yr but had to stop due to acid reflux. Same with combo drugs. Thought of surgery but one doctor said I could lose my memory. Another doctor said it was due to scar tissue formed after an injury as a child and suggested surgery.

I started reading "How to Use the Frolov Breathing Device". It is similar to the Butyeko method. He says you should have someone guide you through that though. When I feel something coming on I slow down my breathing and it seems to help.There is training though involved which I haven't started. Found someone in my area who uses Buteyko method and he says we could use Skype.

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