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spouse with epilepsy

Sat, 12/25/2004 - 16:33
My spouse and I are both 36 yrs old. he has had epilleptic seizures since he was around 5 years old and they were petite mal due to being thrown off the back of a bike and hitting his head on the concrete. he started having tonic clonic seizures around his teen years. he has been on numerous types of meds, but has been on dilantin for the last 21 yrs or so. he has a clonic tonic about 1 time per year, but recently they are getting more frequent and more scary. I have been with him for 8 years and have seen his seizures change over the last few years. I am looking for someone or an organization that might have a video of a person having a tonic clonic seizure. if there is anyone out there or an organiztion that I could purchase a video, please respond.

Comments

RE: spouse with epilepsy

Submitted by mexican_fire on Wed, 2004-06-23 - 13:48
Try the epilepsy foundation of America. Their site is www.efa.org. They have all that good stuff. However I don't know as you will be able to get what you are looking for, but it is a good place to start. I know they have videos, but on what I don't know. They should have something on grand mal.As for his seizures, yes, they can get worse in time, if his meds need to be increased, added to, or even changed all together. It is just a guessing game in this part of the neurology world.My seizures can get real strange too. I have certain types, but they are varied a little from the classic types.My seizures got real out of control for about 8 months, and no matter what they gave me, it was resistant.I had my meds all changed, except for the Neurontin, and then added Depakote to it. It has slowed it some, but it is not controlled all that well. I have seizures probably every 3 weeks as break through, for no reason, or if something triggers it.As my epileptologist says, mine is VERY active.Good luck.Nancy

RE: RE: spouse with epilepsy

Submitted by Gretchen on Wed, 2004-12-22 - 19:59

I am the epileptic in our marriage and a very active epileptic too.  I have TLEs and generalized resulting in probably 11 sz types.  I have status epilepticus frequently too, a "grand mal" or tonic/clonic that can not be stopped without ER intervention and those have gone on for several hours.  I've had 3 VEEGs, where they have you wearing an EEG constantly and video tape you also to match up the sz and brain activity?  My primary sz are Drops, which I usually have multiple times daily.  That looks like I trip by something shoving me forward, take a few tripping fast steps and collapse like a faint. 

Anyway just a thought to add to the soup but I wanted to see myself after my second VEEG was completed, on their video tape, which they showed me and did it freak me OUT!  One sz they showed me was just an absence but it was frightening for me to see and another was a tonic/clonic and it terrified me to see myself like that.    The only other time I've seen myself sz is when my husband accidentally caught me going down in a drop when he was videotaping something else.  Then I started talking to other epileptics in my support group after that freaked me out so much, asked them if they'd ever seen any of their own sz's in a video and of the ones that had?  Only one person out of maybe about 10 said it didn't bother him. The rest of us were weak kneed watching a video of one of our sz's.  I think it's because we got a vision in our heads of what we thought we looked like, and that vision was usually wrong.  For me?  I definitely never want to see myself having a sz again and wished I had not asked to see one.

The person who talked about positioning and deep snoring?  Positioning on the back, for me, can be dangerous.  I have been alone many times, wound up on my back, and was choking on my saliva, not tongue, saliva.  Once with some food in my mouth.  The safest for me is on my side or on my stomach.  The loud snoring is called stenorous breathing and it's when the trachea is collapsing or obstructed, and that's dangerous.  Turning blue or purpole means a serious lack of oxygen content in your blood stream, which can result in brain damage and even death.  I've been around quite a few epileptics and repositioning, maybe you'll have to try more than once, is imperative for good oxygenation.  Stenorous breathing always means a position change and it would be very beneficial for all care takers to have their neuro teach you how to position the jaw yourself to help the seizing person breathing.  I have an oxymeter which clips on my finger and we found out my oxygen saturations can get dangerously low during a seizure so positioning is something we've learned is extremely important.

And yes too, sometimes I can respond to commands such as: "take a breath" or calming things such as "you're safe", or "I'm with you" at times.  Sometimes I respond, sometimes not.  Sometimes I remember people speaking to me and sometimes not.  I think some seizures are "deeper" than other ones and I know at least for me it seems like my seizures that are long I go deeper and rise to the surface alternatively too.  If that makes any sense.  I can remember precisely several seconds of consciousness during a long seizure which I call "snapshots".

Bless those who take care of us. Thank you.

I am the epileptic in our marriage and a very active epileptic too.  I have TLEs and generalized resulting in probably 11 sz types.  I have status epilepticus frequently too, a "grand mal" or tonic/clonic that can not be stopped without ER intervention and those have gone on for several hours.  I've had 3 VEEGs, where they have you wearing an EEG constantly and video tape you also to match up the sz and brain activity?  My primary sz are Drops, which I usually have multiple times daily.  That looks like I trip by something shoving me forward, take a few tripping fast steps and collapse like a faint. 

Anyway just a thought to add to the soup but I wanted to see myself after my second VEEG was completed, on their video tape, which they showed me and did it freak me OUT!  One sz they showed me was just an absence but it was frightening for me to see and another was a tonic/clonic and it terrified me to see myself like that.    The only other time I've seen myself sz is when my husband accidentally caught me going down in a drop when he was videotaping something else.  Then I started talking to other epileptics in my support group after that freaked me out so much, asked them if they'd ever seen any of their own sz's in a video and of the ones that had?  Only one person out of maybe about 10 said it didn't bother him. The rest of us were weak kneed watching a video of one of our sz's.  I think it's because we got a vision in our heads of what we thought we looked like, and that vision was usually wrong.  For me?  I definitely never want to see myself having a sz again and wished I had not asked to see one.

The person who talked about positioning and deep snoring?  Positioning on the back, for me, can be dangerous.  I have been alone many times, wound up on my back, and was choking on my saliva, not tongue, saliva.  Once with some food in my mouth.  The safest for me is on my side or on my stomach.  The loud snoring is called stenorous breathing and it's when the trachea is collapsing or obstructed, and that's dangerous.  Turning blue or purpole means a serious lack of oxygen content in your blood stream, which can result in brain damage and even death.  I've been around quite a few epileptics and repositioning, maybe you'll have to try more than once, is imperative for good oxygenation.  Stenorous breathing always means a position change and it would be very beneficial for all care takers to have their neuro teach you how to position the jaw yourself to help the seizing person breathing.  I have an oxymeter which clips on my finger and we found out my oxygen saturations can get dangerously low during a seizure so positioning is something we've learned is extremely important.

And yes too, sometimes I can respond to commands such as: "take a breath" or calming things such as "you're safe", or "I'm with you" at times.  Sometimes I respond, sometimes not.  Sometimes I remember people speaking to me and sometimes not.  I think some seizures are "deeper" than other ones and I know at least for me it seems like my seizures that are long I go deeper and rise to the surface alternatively too.  If that makes any sense.  I can remember precisely several seconds of consciousness during a long seizure which I call "snapshots".

Bless those who take care of us. Thank you.

RE: RE: spouse with epilepsy

Submitted by Gretchen on Wed, 2004-12-22 - 20:00
Oh, sorry, forgot.  Some years ago I worked around with Google search engine and found a clip of a person having a tonic/clonic. 

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