Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Screaming during a seizure???
Wed, 01/12/2005 - 16:02Comments
Re: Screaming
Submitted by suebear on Wed, 2008-07-09 - 16:19
Hi jajamom,
I understand how it can be hard trying to sort it all out. I was thinking about this last night and trying to recall some of the issues I went through as a child. A little sketchy but I remember bits and pieces.
Let's see, when I was very young the grand mals started from the DTP shot because it caused the high fever to occur. I was born in '68 and I to be honest, I really don't know what age I was when that vaccine was given to me as I don't have kids myself. Anyway. What I am aware of is the vaccine issue at the time was causing a big problem because of how it was given because it had to be given in three shots instead of one; apparently it was something the FDA did at the time to try and speed up the process of "making the vaccinations better" but actually it made them worse. They were fixed quickly after that but at any rate, the high fever which caused the scar is in turn what started the epilepsy rolling.
I recall my Mom speaking of the few times while I was at that infant stage she knew something was wrong because I would make a noise and it was different. I've always heard the saying, mother's know the tone of their children's voices when something is wrong. I suppose she was aware when something was about to happen. I grew up with grand mals into the age of about 10 I think. Doctors said nothing came back on the chart, I was a healthy child faking and wanted attention. That was the first time I saw Mom go into a rage. WOW!
I can't remember who all I was sent to but I know there were a few of them. I think that one of them was even a psychiatrist because they tried saying it was all in my head. Well yes, epilepsy is in your head. The doctor realized what he was dealing with when I had a seizure in his office and said he couldn't treat me. *sigh* Onto another one. We finally managed to find a neurologist from a particular childrens hospital that took the case. With his knowledge and science, the grand mals turn into fewer complex partials.
Yes, there were issues of triggers such as the need of sleep and eating correctly. At that time, if I had too much sugar it could be a problem so we had limits with it. In my younger pre-teen days, the flickering lights did cause issues so that was something we had to always watch.
As I grew into a teenager, the lights started to not become so much of a problem. I do know that heat and humidity were always an enemy to me. If I got a bit overheated, that could cause something so I stayed in an air conditioned room or by a fan more for security than for comfort. Dressing in loose clothing in summer was always the key as well.
As for testing? I had an EEG, a CAT Scan, an MRI, and video monitoring done as well. It all depends on what is needed. In my experience the EEG does not always show and it required something more intense to see what is happening like an MRI. If you ever do need to go through something like this, they do have MRIs that can be done openly instead of closed if your child fears closed areas.
I wish you the best at finding the cause for this. Will keep you both in my thoughts!
Sue
Hi jajamom,
I understand how it can be hard trying to sort it all out. I was thinking about this last night and trying to recall some of the issues I went through as a child. A little sketchy but I remember bits and pieces.
Let's see, when I was very young the grand mals started from the DTP shot because it caused the high fever to occur. I was born in '68 and I to be honest, I really don't know what age I was when that vaccine was given to me as I don't have kids myself. Anyway. What I am aware of is the vaccine issue at the time was causing a big problem because of how it was given because it had to be given in three shots instead of one; apparently it was something the FDA did at the time to try and speed up the process of "making the vaccinations better" but actually it made them worse. They were fixed quickly after that but at any rate, the high fever which caused the scar is in turn what started the epilepsy rolling.
I recall my Mom speaking of the few times while I was at that infant stage she knew something was wrong because I would make a noise and it was different. I've always heard the saying, mother's know the tone of their children's voices when something is wrong. I suppose she was aware when something was about to happen. I grew up with grand mals into the age of about 10 I think. Doctors said nothing came back on the chart, I was a healthy child faking and wanted attention. That was the first time I saw Mom go into a rage. WOW!
I can't remember who all I was sent to but I know there were a few of them. I think that one of them was even a psychiatrist because they tried saying it was all in my head. Well yes, epilepsy is in your head. The doctor realized what he was dealing with when I had a seizure in his office and said he couldn't treat me. *sigh* Onto another one. We finally managed to find a neurologist from a particular childrens hospital that took the case. With his knowledge and science, the grand mals turn into fewer complex partials.
Yes, there were issues of triggers such as the need of sleep and eating correctly. At that time, if I had too much sugar it could be a problem so we had limits with it. In my younger pre-teen days, the flickering lights did cause issues so that was something we had to always watch.
As I grew into a teenager, the lights started to not become so much of a problem. I do know that heat and humidity were always an enemy to me. If I got a bit overheated, that could cause something so I stayed in an air conditioned room or by a fan more for security than for comfort. Dressing in loose clothing in summer was always the key as well.
As for testing? I had an EEG, a CAT Scan, an MRI, and video monitoring done as well. It all depends on what is needed. In my experience the EEG does not always show and it required something more intense to see what is happening like an MRI. If you ever do need to go through something like this, they do have MRIs that can be done openly instead of closed if your child fears closed areas.
I wish you the best at finding the cause for this. Will keep you both in my thoughts!
Sue
Re: Screaming
Submitted by jajamom on Wed, 2008-07-09 - 13:58
Thanks for the note. We are seeing a nuerologist on Monday. What kind of testing allowed for a diagnosis? We had an EEG a few months ago and it was normal and then our ped. ruled out seizures.
Wondering if you dont mind elaborating a littlemore about your infancy grand mal seizures? Our son seems to wake up in a high pitched blood blood curdeling screetch, while stiff and eyes rolled back in his head. This lasts a few minutes and then he cries for about 30 -45 minutes before falling back to sleep.
Do you notice if you have any triggers? Dehydration? Overstimulation? Low glucose??
Just trying to sort all of this out and I really appreciate any insight - since you have been living it for so long.
Thanks.
Thanks for the note. We are seeing a nuerologist on Monday. What kind of testing allowed for a diagnosis? We had an EEG a few months ago and it was normal and then our ped. ruled out seizures.
Wondering if you dont mind elaborating a littlemore about your infancy grand mal seizures? Our son seems to wake up in a high pitched blood blood curdeling screetch, while stiff and eyes rolled back in his head. This lasts a few minutes and then he cries for about 30 -45 minutes before falling back to sleep.
Do you notice if you have any triggers? Dehydration? Overstimulation? Low glucose??
Just trying to sort all of this out and I really appreciate any insight - since you have been living it for so long.
Thanks.