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sensory seizures??

Wed, 02/13/2008 - 12:09
My name is melody and I am new to this website. My son is 7 and is very healthy and always has been. I just recently started this roller coaster of finding out wether my son is epileptic. We are now getting a second EEG. He is not diagosed as of yet. He has what I would call "sensory seizures" if that is what it is. He usually wakes with these epsodes but he has been awake when one has started too. he wakes with this intense anxiety and feels like everything is far away, everything is too loud, he doesnt like to be touched, he has also complained of feelinglike he is moving or floating away, and most recently one of his hands was very hot even though it was cool to the touch. He is not himself during these times and it usually lasts about 15min to 30 at the most. He cant seem to comfort himself. He is definatly aware and upset. I am very worried! Is there anyone out there with these experiences? melodyincali@hotmail.com

Comments

Re: sensory seizures??

Submitted by mcclendon on Wed, 2008-02-13 - 16:50
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Re: sensory seizures??

Submitted by srchtt3 on Fri, 2010-05-28 - 11:39

Hi! I had to go through a search on the site to try and find out what my 'new' type of seizures were. I've been having them since last summer but didnt' know what they were and seriously didn't know how to explain them to anyone! They are completely different than my other seizures! The other seizures I have an aura, seize, sleep or whatever and go on... I hate them but I'm used to the routine. I'm diagnosed with intractable, or refractory, epilepsy. So I take meds but they can't control mine. I started having seizures when I was a teen but only when I was sick, so I didn't even know that I was actually having seizures. When I was in a serious car wreck it brought it all out!

So in December I had my first completely solo sensory seizure. I freaked. It is the most scary thing I think I've ever experienced! I cannot stand these. I feel like I'm falling, I'm scared, I can't move, can't speak, it's almost as if I'm losing my very self. Like sinking into a whole so deep I'll never dig out. I don't know how else to explain. But they are terrifying. I'm sure part of the horror is the seizure itself, the actual sensory seizure, but now that I know that I don't think I'm gonna be able to seperate that during a seizure.  Does that make sense?

I hate my condition, to be blunt. I've been told that it is progressive and I can see that in the last two years I have definately declined. I continue to fight but the auditory hallucinations are worse, the cognitive thinking is worse and now I have a 'new' type of seizures for me. My goal is to be able to care for my children. That is the reason I fight. That is the reason I get up. I truly believe that is the reason I lived through my wreck.

However, these new type of seizures have got to be the most horrifying thing I have faced yet. The deep unfettered fear that you feel while it is happening is impossible to explain!

Hi! I had to go through a search on the site to try and find out what my 'new' type of seizures were. I've been having them since last summer but didnt' know what they were and seriously didn't know how to explain them to anyone! They are completely different than my other seizures! The other seizures I have an aura, seize, sleep or whatever and go on... I hate them but I'm used to the routine. I'm diagnosed with intractable, or refractory, epilepsy. So I take meds but they can't control mine. I started having seizures when I was a teen but only when I was sick, so I didn't even know that I was actually having seizures. When I was in a serious car wreck it brought it all out!

So in December I had my first completely solo sensory seizure. I freaked. It is the most scary thing I think I've ever experienced! I cannot stand these. I feel like I'm falling, I'm scared, I can't move, can't speak, it's almost as if I'm losing my very self. Like sinking into a whole so deep I'll never dig out. I don't know how else to explain. But they are terrifying. I'm sure part of the horror is the seizure itself, the actual sensory seizure, but now that I know that I don't think I'm gonna be able to seperate that during a seizure.  Does that make sense?

I hate my condition, to be blunt. I've been told that it is progressive and I can see that in the last two years I have definately declined. I continue to fight but the auditory hallucinations are worse, the cognitive thinking is worse and now I have a 'new' type of seizures for me. My goal is to be able to care for my children. That is the reason I fight. That is the reason I get up. I truly believe that is the reason I lived through my wreck.

However, these new type of seizures have got to be the most horrifying thing I have faced yet. The deep unfettered fear that you feel while it is happening is impossible to explain!

Hi there. I know this is an

Submitted by CandaceP on Mon, 2018-03-05 - 13:14
Hi there. I know this is an old post but I'm responding to see how your journey has been Melody. I have a 7 year old son having sensory seizures and it's been difficult to find other parents going through this with their kids. Please email if you're willing to chat. thank you. Candace cpalmerlee@gmail.com

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