Epilepsy Work-Ups--- EEGS

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I was diagnosed with complex partial seizures as a child. I am now an adult (26 years old, 2 small children of my own) and am currently in the process of having an epilepsy work up again but with a different neurologist. Back in December, I had a what appeared to be a stroke, but they just said it was a migraine with aura. Since I have a history of complex partial seizures and I am not quite sure of when my last actual seizure was, the new neurologist ordered an EEG and a MRI. I am waiting on my results and my follow up won't be until the middle of May. Here lies my question: I know am still very much sensitive to strobe lights. After my EEG last Friday, it gave me a that postictal feel that I would normally get from a seizure: tiredness (feeling like I could sleep for days), bursts of sadness, confusion, disorientation (co-worker thought I was doped up on drugs actually). I do not remember any of my many childhood EEGs and how I felt afterwards. So I was wanting to know if this is a common occurrence for ANYONE who has an EEG, or is it just common for someone with Epilepsy/history of Epilepsy (I haven't considered myself "epileptic" in years) I asked my neurologist's nurse this question, and she just gave me the vaguest answer possible and I haven't been able to find anything online about it. It's just something that I am curious about. Thank you!

Comments

there are a lot of different

Submitted by Amy Jo on Tue, 2017-04-04 - 16:35

there are a lot of different forms of epilepsy that probably don't have a reaction, e.g. our child isn't photosensitive so never has an issue with strobe light portion of EEGs.

I can't even watch firework

Submitted by KME7139 on Wed, 2017-04-05 - 14:47

I can't even watch firework shows without being out of it for days.... my kids want to go to 4th of july shows and I'm like nope sorry...mama can't handle it :(

I think in the EEG they are

Submitted by Roald on Wed, 2017-04-12 - 10:31

I think in the EEG they are"trying" to make you have a seizure or simulate an abnormal brain response from the strobe lights and hyperventilating etc, and any abnormal response from your brain is going to have the side effects of being tired, feeling emotional and physical pain, and memory issues even if you do don't have a "seizure." The test itself involves stress, and getting those electrodes glued to your head is generally not enjoyable in any way and the glues and solvents they use have extremely powerful odors which can be a trigger for me. I've had many "regular" EEG tests most of which came back normal but one showed some abnormal activity. In those instances you are only being recorded for 30-60min and they "hope" to see anything abnormal in that little amount of time. I also did the Video EEG twice. The 1st time I went through 5 days with nothing but last week after going to the ER again after seizures clustering they hooked me up to the VEEG again . This time I had 2 focal seizures recorded. I feel very different this time after having the actual seizures "captured" and recorded while on the VEEG. It has been a week. I sometimes still feel connected to the VEEG, not just physically but I mentally feel like I am still being "recorded." I also feel the effects of these seizures lingering much longer than usual like the EEG didn't let the seizures all the way out of my brain and more of the side effects got stuck in there making the healing a slower process. (Also on a new Rx so it could likely be that too). Seizures and abnormal brain activity injure your brain and that is what I feel after the fact from these tests sometimes, sometimes nothing. In the EEG tests I've "passed" without showing abnormal activity or seizures, I have often felt like I just barely made it through the test and had they flashed the strobe a little faster/longer I would have had a seizure response. So even getting through an EEG without any abnormal activity can stress your brain and make you feel certain effects from the test similar to a seizure response and it's side effects. I also have a vague memory of them glueing the electrodes on for the 2nd VEEG but otherwise I remember nothing for the next 24 hours during when I had 2 focal temporal seizures progress to tonic clonic generalized seizures on recording. At least 5 witnessed seizures in 24 hours at that point which probably started in my sleep unwitnessed. It seems strange to basically have no memory of the VEEG but still feel connected. I can't say if someone without epilepsy would feel this same way from an EEG but I sure do... But I have epilepsy. I'd think that blasting someone directly in the eyes with a strobe light can cause a headache or other pain and side effects even if someone isn't that sensitive to light or a diagnosed epileptic. So just because the test makes you feel bad and pain effects similar to a seizure, it doesn't mean you are epileptic. Unfortunately, just because you pass a EEG or VEEG test with flying colors and show nothing abnormal... It doesn't mean you are not an epileptic either, just that everything was normal during the time of that recording... which for me would maybe only be an hour when I have seizure events between 1-3 months apart so it is a roll of the dice depending how you feel that day or what triggers have been stressing your brain up to that point. I think an EEG can prove you have epilepsy, but it can't prove that you don't?

I think in the EEG they are"trying" to make you have a seizure or simulate an abnormal brain response from the strobe lights and hyperventilating etc, and any abnormal response from your brain is going to have the side effects of being tired, feeling emotional and physical pain, and memory issues even if you do don't have a "seizure." The test itself involves stress, and getting those electrodes glued to your head is generally not enjoyable in any way and the glues and solvents they use have extremely powerful odors which can be a trigger for me.  I've had many "regular" EEG tests most of which came back normal but one showed some abnormal activity. In those instances you are only being recorded for 30-60min and they "hope" to see anything abnormal in that little amount of time.  I also did the Video EEG twice. The 1st time I went through 5 days with nothing but last week after going to the ER again after seizures clustering they hooked me up to the VEEG again . This time I had 2 focal seizures recorded. I feel very different this time after having the actual seizures "captured" and recorded while on the VEEG. It has been a week. I sometimes still feel connected to the VEEG, not just physically but I mentally feel like I am still being "recorded." I also feel the effects of these seizures lingering much longer than usual like the EEG didn't let the seizures all the way out of my brain and more of the side effects got stuck in there making the healing a slower process. (Also on a new Rx so it could likely be that too). Seizures and abnormal brain activity injure your brain and that is what I feel after the fact from these tests sometimes, sometimes nothing. In the EEG tests I've "passed" without showing abnormal activity or seizures, I have often felt like I just barely made it through the test and had they flashed the strobe a little faster/longer I would have had a seizure response. So even getting through an EEG without any abnormal activity can stress your brain and make you feel certain effects from the test similar to a seizure response and it's side effects. I also have a vague memory of them glueing the electrodes on for the 2nd VEEG but otherwise I remember nothing for the next 24 hours during when I had 2 focal temporal seizures progress to tonic clonic generalized seizures on recording. At least 5 witnessed seizures in 24 hours at that point which probably started in my sleep unwitnessed. It seems strange to basically have no memory of the VEEG but still feel connected. I can't say if someone without epilepsy would feel this same way from an EEG but I sure do... But I have epilepsy. I'd think that blasting someone directly in the eyes with a strobe light can cause a headache or other pain and side effects even if someone isn't that sensitive to light or a diagnosed epileptic. So just because the test makes you feel bad and pain effects similar to a seizure, it doesn't mean you are epileptic. Unfortunately, just because you pass a EEG or VEEG test with flying colors and show nothing abnormal... It doesn't mean you are not an epileptic either, just that everything was normal during the time of that recording... which for me would maybe only be an hour when I have seizure events between 1-3 months apart so it is a roll of the dice depending how you feel that day or what triggers have been stressing your brain up to that point. I think an EEG can prove you have epilepsy, but it can't prove that you don't?

I think in the EEG they are"trying" to make you have a seizure or simulate an abnormal brain response from the strobe lights and hyperventilating etc, and any abnormal response from your brain is going to have the side effects of being tired, feeling emotional and physical pain, and memory issues even if you do don't have a "seizure." The test itself involves stress, and getting those electrodes glued to your head is generally not enjoyable in any way and the glues and solvents they use have extremely powerful odors which can be a trigger for me. I've had many "regular" EEG tests most of which came back normal but one showed some abnormal activity. In those instances you are only being recorded for 30-60min and they "hope" to see anything abnormal in that little amount of time. I also did the Video EEG twice. The 1st time I went through 5 days with nothing but last week after going to the ER again after seizures clustering they hooked me up to the VEEG again . This time I had 2 focal seizures recorded. I feel very different this time after having the actual seizures "captured" and recorded while on the VEEG. It has been a week. I sometimes still feel connected to the VEEG, not just physically but I mentally feel like I am still being "recorded." I also feel the effects of these seizures lingering much longer than usual like the EEG didn't let the seizures all the way out of my brain and more of the side effects got stuck in there making the healing a slower process. (Also on a new Rx so it could likely be that too). Seizures and abnormal brain activity injure your brain and that is what I feel after the fact from these tests sometimes, sometimes nothing. In the EEG tests I've "passed" without showing abnormal activity or seizures, I have often felt like I just barely made it through the test and had they flashed the strobe a little faster/longer I would have had a seizure response. So even getting through an EEG without any abnormal activity can stress your brain and make you feel certain effects from the test similar to a seizure response and it's side effects. I also have a vague memory of them glueing the electrodes on for the 2nd VEEG but otherwise I remember nothing for the next 24 hours during when I had 2 focal temporal seizures progress to tonic clonic generalized seizures on recording. At least 5 witnessed seizures in 24 hours at that point which probably started in my sleep unwitnessed. It seems strange to basically have no memory of the VEEG but still feel connected. I can't say if someone without epilepsy would feel this same way from an EEG but I sure do... But I have epilepsy. I'd think that blasting someone directly in the eyes with a strobe light can cause a headache or other pain and side effects even if someone isn't that sensitive to light or a diagnosed epileptic. So just because the test makes you feel bad and pain effects similar to a seizure, it doesn't mean you are epileptic. Unfortunately, just because you pass a EEG or VEEG test with flying colors and show nothing abnormal... It doesn't mean you are not an epileptic either, just that everything was normal during the time of that recording... which for me would maybe only be an hour when I have seizure events between 1-3 months apart so it is a roll of the dice depending how you feel that day or what triggers have been stressing your brain up to that point. I think an EEG can prove you have epilepsy, but it can't prove that you don't?