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sensory seizures??

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

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Re: sensory seizures??

O.K. I wrote this lady personally cause I had so much to ask and say. But why are us folks with this childs type of seizures seen as rare or simply rarely addressed? Sensory seizures are horrid!! Frightening!!! Incredibly hard to control!!! Hard to explain!!! I've read all the accounts of other sensory seizure sufferers on this site. Talk to her!!! She needs you. I know why you're not saying anything. I know. People with other kinds of epilepsy look at as rather strangely. We are the closet epilepsy people. Well, I'm tired of it. I'm coming out of the closet. I see stuff, I smell stuff, I hear stuff and I float! I don't like sounds or light, during a seizure I feel like those things are killing me. And certainly don't touch me, I just might float away. I wish it would end after a few minutes but it doesn't. Thats just the way it is. It's epilepsy and if you don't agree, take it up with my neurologist and the folks that administered the EEG. So there, I have sensory seizures, I'm not afaid to admit it cause my admitting it may help some mom help her kid.   Melissa D

Re: sensory seizures??

Thank you Melissa for your response! It is reassuring that this isnt just some strange isolated situation we here are going through. How often do you experience these things? It seems to vary here. He had it a few times and then it went away for about a full year and then now he has had it about 3 times in 3 month. At first our Dr. wanted to know if anything was wrong at home. HA ! As if he was making it up! She drew bloodwork and insisted he was fine until another one happened and I insisted on an EEG. Is there anything that triggers your experiences? I could not think of anything yet but i did read how someone has found that white noise like a fan has triggered theirs. We recently decided no more ceiling fan. It's worth a try. Did your physician prescribe any medication?? I dont think we will have to get on anything unless it gets more frequent or more intense and he cant deal with it. How long have you been experiencing it? Since childhood? We have another EEG at a better and bigger hospital on Feb. 28th so I will be in contact as soon as the results are in. I know it sounds silly but I can truely say I hope it is epilepsy. Because my fear is the other option of it being a tumor!! Perhaps he will outgrow this but I would rather be informed and prepared for anything! Thank you again for your response and hope to keep in touch! Melody

Re: sensory seizures??

Hey Melody My seizures began in my early teens. First as simple seizures and partial seizures. I had them every few months but now daily for months then go months with no seizures at all.  Yes, there are triggers like the tick tock of a clock or flashing light but I already have to be in a seizure mode. The trigger alone doesn't do it unless my brain is in one of it's moods. And triggers are different for us all.  I take Carbamazepine and Topamax and it greatly helps. There are side effects to all meds but they do provide relief too. Do know it took several EEGs to find any abnormality in me. And my cousins with the same epilepsy I have have normal EEGs. Have you looked up physcic seizures and tonic seizures? Emotions are a big part of the weirdness your child is feeling. And if he's having nocturnal seizures, he could well be tonic. Tonic doesn't have to be extrem either. Mine started very subtlely. Please let me know how he's doing. And if you don't like the answers this doc gives you, keep looking, I had to do it before I found help. Never hesitate to write either.   Melissa D

Re: sensory seizures??

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Re: sensory seizures??

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!