EEG experience

CDC funded page

Not a CDC funded Page

Greetings! I am brand new here, and I am not even sure if I belong here! Haha. I mean, I have not been diagnosed with epilepsy, and I don't necessarily expect to get that diagnosis either. Having said that, I might be wrong. My neurologist had me do an EEG test yesterday, and it was a bit different than I expected. Before I get into that though, some brief background... In 2009 I had a traumatic brain injury that has apparently been causing issues with my pituitary gland. In the spring I had several hormone tests done which revealed that I had low testosterone (caused by pituitary), low Anti-Diuretic Hormone (caused by pituitary) and high cortisol (probably but not definitely caused by pituitary). The high cortisol in particular has been problematic to my health, and might be behind the issues I have had recently. The thing that triggered me getting an EEG was that I had a crazy reaction to a strobe light while at Disneyland. When I saw the strobe I became very nauseous and felt dizzy as well. But when I closed my eyes, I felt normal again immediately. But when I re-opened my eyes I started feeling the nausea and vertigo again. It was pretty strange, but I didn't think much of it. Also relevant is that I went to a haunted house last Halloween that had strobe lights, but I had no issue at that time. So it seems like something has changed, and that is what caused my neurologist to order the EEG test. For my part, I was glad to be tested, but I also assumed that the whole thing would be a false alarm and that I'd do totally fine with it all. I was a bit unsure how the strobe light part would go, but even that I assumed was probably just a fluke thing at Disney. When I did the EEG yesterday, the strobe portion did make me nauseous again, and it took all that I had to ward off throwing up. But I made it through that part, and I started to feel better almost immediately after it was over. After that part, they had me do some heavy breathing, hyperventilation stuff. I used to run cross country, so breathing a little bit heavy seemed like it would be easy and have zero effect on me. For the first 2 minutes of breathing, I felt great and nothing was wrong at all. But during the last minute, things began to change. About halfway through the last minute I had trouble breathing in the same pattern as before. I kept trying to correct it, but I just couldn't make myself breath in the way I had been breathing. Also I began to feel nauseous again, and it was a close call with throwing up again. After that section finished, it took much longer for the nausea to pass, but it did eventually pass. But right after the hyperventilation section I noticed that I had developed a fairly strong headache that is still with me almost 24 hours later! Although it isn't as bad now. The rest of the EEG was mostly just laying there doing nothing, and I had no issue with that. So that was the EEG. According to me, I had no seizures, but I am hardly an expert. Also part of the story is that after driving home, I continued to feel kind of nauseous and I even threw up a little when I got home. I suppose I should also mention that I have been throwing up randomly over the last couple of months. I assume it is related to my hormone imbalances and not the EEG, but it's hard to tell. Anyway, I felt very spent and just all around bad, so I went to sleep after eating some. When I woke up today I was pretty shocked to find out that I was very sore! Not everywhere, but definitely in my back and shoulders. It was the kind of soreness you feel when you go to the gym after having not been in a long time. But I had not done anything active yesterday, except maybe the EEG itself! But as I reflected back, I could not think of a time during the EEG where I tensed up my back muscles. I can think of no good reason why my back would be sore like it is, so it's a total mystery to me. Also, I am so totally spent today, it is nuts! I feel like that EEG totally killed me, even though most of it was just laying down in a dark room! How could this be?? I will of course be following up with my neurologist to review the results, but I am impatient! Haha. I have become fascinated with it all, and for sure curious to know if I did in fact have a seizure and not realize it. My guess is still that I did not have a seizure, but something strange happened! If I had done that EEG a year ago, I almost guarantee that NOTHING would have happened. No nausea, no headaches, no soreness the next day, nothing! But they did happen this time, some what changed? The most obvious suspect is my out of balance hormones, especially the cortisol. But I guess I don't really know. Ok, here are some of my questions. 1. Is it possible that something would make me feel nauseated and have a headache OTHER than a seizure? 2. Is it possible that I did have a seizure that made my back tense up and yet I didn't even realize it? 3. Is it possible that all of this is just in my head? Like maybe I started thinking about seizures and wondering about seizures so much that the power of suggestion caused me to have a response that wasn't actually a seizure, but was similar to one? It's hard for me to believe that one, but is it possible? Anyway, thanks in advance!

Comments

Hi mccallumjoe@yahoo.com,

Submitted by Anonymous on Mon, 2019-09-16 - 09:37

Hi mccallumjoe@yahoo.com, Thanks so much for posting, we understand this can be very scary and confusing to experience. We cannot determine if you’ve had seizures, or not. It's very important that you continue to follow-up with your healthcare team to describe these episodes you’ve been experiencing and to get the results of your EEG. Additionally, it’s important that you discuss any changes in symptoms, behaviors, sides effects & moods to determine what individual treatment plan is best for you. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf Our new to Epilepsy & Seizure tool kit is a great resource and starting point for learning about what epilepsy is, what resources are available, how to make the most of doctors' visits, and how to take control of seizures.Learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsy Seizures can take on many different forms and affect different people in different ways. Learn more about seizures and the various types of seizures here: https://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizure https://www.epilepsy.com/learn/types-seizures For additional information about seizures & diagnosing epilepsy please visit these links: https://www.epilepsy.com/learn/about-epilepsy-basics/facts-about-seizures-and-epilepsyhttps://www.epilepsy.com/learn/diagnosing-epilepsy For more information about EEG readings, please visit: https://www.epilepsy.com/learn/diagnosis/eeg/video-eeg https://www.epilepsy.com/learn/diagnosis/eeg/how-read-eeg Additionally, you may contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org, where a trained information specialist can connect you to resources,provide referrals and additional support.epilepsy.com/helpline

Hello, at 20 months old, my

Submitted by Yislem24 on Thu, 2019-10-31 - 00:47

Hello, at 20 months old, my daughter shortly after waking up I was preparing her breakfast started to turn pale her lips were white and she became very weak I called 911 and they arrived after 7 mins by the time they got to see her she was back to normal. Her colors were coming back. I still took her in to emergency and every test came back negative blood work. But she had a urine infection so they assume it was from that. Six months after (Thanksgiving 2017) it happens again morning, before breakfast and pale and she looks like she’s passing out her eyes are trying to close and she was Sweating but her hands were cold. Again, the hospital said another urine infection but this time, i wanted her a neurologist and cardiologist and we did after and eeg sleep and Awake was normal and cardiologist testing as well. Nothing happen again until now June of 2019 after nothing for 2 years. This time she was older, we were shopping at a furniture store and she whined and when I looked at her I saw the pale face and the weak symptoms i grabbed her and people there helped me by calling 911. She was responsive the whole time just acting like she was gonna pass out while pale and sweating cold. I told my husband this is something else happening. I wanna throw in there that I at the age of 7 till around 10 I would pass out of the blue (vagal episodes) it wouldn't happen often. So back to my story . I took her to children’s hospital and I explained everything to them and they mentioned to admitted her and do an eeg video for 24hrs. Next day they came back and told her on the eeg the saw some epilepticform discharge and they wanted to do an MRI shortly after that the came and said they thought she also had cortical displasia and that was maybe causing seizures. I was confused and sad terrified but always trusting god and them as doctors. We got send home and They put her on medicine Keppra which I hated the fact that my 3 yr old was now diagnosed with epilepsy and taking medication twice a day and I knew in my heart she wasn’t epileptic nor sick. After a week I thought I need a second opinion, I google the best neurologist in Florida and lead me to Boston children’s hospital. While we were waiting for her appt at Boston on Sept 2 she told me one morning my stomach hurts and right after she got stiff and her eyes turned to one side only. That was the first seizure she had!! When we got to the hospital I explained everything and they suggested That the medicine dosage wasn’t enough. I stated that I had my daughter had never had a seizure before, that this time it was a seizure and to me It was cause by Keppra the medicine I was giving her. They wanted to give her there a loading dosages which I refused. I told them that medicine had made her have a seizure I was sure of that. After that sept 17 we flew to Boston, There I took her and they did a eeg with lights and awake and asleep and hyperventilation. I spoke to doctor and she told me she saw spikes on her eeg while she was dosing off to sleep. That she was also thinking it was epilepsy but not 100% sure because the explanation of the episodes, i told her I didn’t want to give her any more medicine, that I knew it was that, that I had vagal episodes as a kid and that is what she is having. And she agreed to start weeing her off meds. And it’s been two months with out any medicine and she is back to her normal self. She doesn’t have any epilepsy she didn’t need any medication. I never write on boards and I actually created this account on here to tell parents and anyone that always follow your gut instincts, your mother or father instincts, never settle for one diagnose never never listen completely to there diagnosis. Sadly doctors quickly prescribe medication to children that are drugs and his so harmful to them . I hope this helps someone out there that’s going through something similar. God bless you all And always trust out father god !

Hello, at 20 months old, my daughter shortly after waking up I was preparing her breakfast started to turn pale her lips were white and she became very weak I called 911 and they arrived after 7 mins by the time they got to see her she was back to normal. Her colors were coming back. I still took her in to emergency and every test came back negative blood work. But she had a urine infection so they assume it was from that. Six months after (Thanksgiving 2017) it happens again morning, before breakfast and pale and she looks like she’s passing out her eyes are trying to close and she was Sweating  but her hands were cold. Again, the hospital said another urine infection but this time, i wanted her a neurologist and cardiologist and we did after and eeg sleep and Awake was normal and cardiologist testing as well. Nothing happen again until now June of 2019 after nothing for 2 years. This time she was older, we were shopping at a furniture store and she whined and when I looked at her I saw the pale face and the weak symptoms i grabbed her and people there helped me by calling 911. She was responsive the whole time just acting like she was gonna pass out while pale and sweating cold. I told my husband this is something else happening. I wanna throw in there that I at the age of 7 till around 10 I would pass out of the blue (vagal  episodes) it wouldn't happen often. So back to my story . I took her to children’s hospital and I explained everything to them and they mentioned to admitted her and do an eeg video for 24hrs. Next day they came back and told her on the eeg the saw some epilepticform discharge and they wanted to do an MRI shortly after that the came and said they thought she also had cortical displasia and that was maybe causing seizures. I was confused and sad terrified but always trusting god and them as doctors. We got send home and They put her on medicine Keppra which I hated the fact that my 3 yr old was now diagnosed with epilepsy and taking medication twice a day and I knew in my heart she wasn’t epileptic nor sick.  After a week I thought I need a second opinion, I google the best neurologist in Florida and lead me to Boston children’s hospital. While we were waiting for her appt at Boston on Sept 2 she told me one morning my stomach hurts and right after she got stiff and her eyes turned to one side only. That was the first seizure she had!!  When we got to the hospital I explained everything and they suggested That the medicine dosage wasn’t enough. I stated that I had my daughter had never had a seizure before, that this time it was a seizure and to me It was cause by Keppra the medicine I was giving her. They wanted to give her there a loading dosages which I refused. I told them that medicine had made her have a seizure I was sure of that. After that sept 17 we flew to Boston, There I took her and they did a eeg with lights and awake and asleep and hyperventilation. I spoke to doctor and she told me she saw spikes on her eeg while she was dosing off to sleep. That she was also thinking it was epilepsy but not 100% sure because the explanation of the episodes, i told her I didn’t want to give her any more medicine, that I knew it was that, that I had vagal episodes as a kid and that is what she is having. And she agreed to start weeing her off meds. And it’s been two months with out any medicine and she is back to her normal self. She doesn’t have any epilepsy she didn’t need any medication. I never write on boards and I actually created this account on here to tell parents and anyone that always follow your gut instincts, your mother or father instincts, never settle for one diagnose never never listen completely to there diagnosis. Sadly doctors quickly prescribe medication to children that are drugs and his so harmful to them . I hope this helps someone out there that’s going through something similar. God bless you all And always trust out father god !

Hello, at 20 months old, my daughter shortly after waking up I was preparing her breakfast started to turn pale her lips were white and she became very weak I called 911 and they arrived after 7 mins by the time they got to see her she was back to normal. Her colors were coming back. I still took her in to emergency and every test came back negative blood work. But she had a urine infection so they assume it was from that. Six months after (Thanksgiving 2017) it happens again morning, before breakfast and pale and she looks like she’s passing out her eyes are trying to close and she was Sweating but her hands were cold. Again, the hospital said another urine infection but this time, i wanted her a neurologist and cardiologist and we did after and eeg sleep and Awake was normal and cardiologist testing as well. Nothing happen again until now June of 2019 after nothing for 2 years. This time she was older, we were shopping at a furniture store and she whined and when I looked at her I saw the pale face and the weak symptoms i grabbed her and people there helped me by calling 911. She was responsive the whole time just acting like she was gonna pass out while pale and sweating cold. I told my husband this is something else happening. I wanna throw in there that I at the age of 7 till around 10 I would pass out of the blue (vagal episodes) it wouldn't happen often. So back to my story . I took her to children’s hospital and I explained everything to them and they mentioned to admitted her and do an eeg video for 24hrs. Next day they came back and told her on the eeg the saw some epilepticform discharge and they wanted to do an MRI shortly after that the came and said they thought she also had cortical displasia and that was maybe causing seizures. I was confused and sad terrified but always trusting god and them as doctors. We got send home and They put her on medicine Keppra which I hated the fact that my 3 yr old was now diagnosed with epilepsy and taking medication twice a day and I knew in my heart she wasn’t epileptic nor sick. After a week I thought I need a second opinion, I google the best neurologist in Florida and lead me to Boston children’s hospital. While we were waiting for her appt at Boston on Sept 2 she told me one morning my stomach hurts and right after she got stiff and her eyes turned to one side only. That was the first seizure she had!! When we got to the hospital I explained everything and they suggested That the medicine dosage wasn’t enough. I stated that I had my daughter had never had a seizure before, that this time it was a seizure and to me It was cause by Keppra the medicine I was giving her. They wanted to give her there a loading dosages which I refused. I told them that medicine had made her have a seizure I was sure of that. After that sept 17 we flew to Boston, There I took her and they did a eeg with lights and awake and asleep and hyperventilation. I spoke to doctor and she told me she saw spikes on her eeg while she was dosing off to sleep. That she was also thinking it was epilepsy but not 100% sure because the explanation of the episodes, i told her I didn’t want to give her any more medicine, that I knew it was that, that I had vagal episodes as a kid and that is what she is having. And she agreed to start weeing her off meds. And it’s been two months with out any medicine and she is back to her normal self. She doesn’t have any epilepsy she didn’t need any medication. I never write on boards and I actually created this account on here to tell parents and anyone that always follow your gut instincts, your mother or father instincts, never settle for one diagnose never never listen completely to there diagnosis. Sadly doctors quickly prescribe medication to children that are drugs and his so harmful to them . I hope this helps someone out there that’s going through something similar. God bless you all And always trust out father god !