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sensory seizures??
Wed, 02/13/2008 - 12:09Comments
Re: sensory seizures??
Submitted by mcclendon on Wed, 2008-02-13 - 16:57
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
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??
Submitted by mally hoo on Wed, 2008-02-13 - 14:40
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