EEG in the Morning

XxBlaqkxX

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Staying up late so I can make sure I am sleep deprived, but the staying up late for me part is awesome. The waking up and being sleep deprived while my husband drives me and the kids 2 hours away so I can get the test done...sooooo hard. For the EEG's I've had in the past, my mom has always been in the room with me and my dad was either in the lobby with my siblings or my own kids. This is the first time that my parents won't be able to come with me. I think one time for an EEG they asked my mom to wait in the lobby because it was a smaller room without additional seating and that made me nervous, but I slept and everything was fine. Last time I had an EEG a year or so ago, my mom was with me. I dunno, I don't like being alone in a hospital setting if I can help it. I like for someone to be able to advocate for me if something goes wrong.

Bit nervous about being alone in the room while my husband finds some way to entertain the two kids that probably won't be able to wait in the hospital lobby because of COVID protocols. I'm also nervous about walking in alone and being so tired I can't get to check in or something. The instructions I got for an address were, "It's right across the street from here." and I asked the scheduler if it was a sleep deprived EEG and they said, "Yes," so I asked, "What time do I need to go to bed or how many hours am I allowed to sleep?" and they're just like, "However you need to do it..." like...wow, her literal answer...didn't give me much confidence so I'm just going to go to bed in a few here and sleep for 3-4 hours like they usually make me do. I hate being tired, I never deal with it well...but I guess a lot of people don't.

I'll try to think of it like taking a nap without the kids...I'll try...
 

CathyAnn31

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With my sleep apnea and riding in the car for awhile I don't know if I'd stay awake. Maybe a lot of coffee and bathroom breaks..hahah.

How did everything go?
 

N Sperlo

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Last visit I had that included being wired up was a sleep study. The poor nurse spent about 20 minutes talking to me about sleep apnea before I finally explained to him that that wasn't exactly why I was there. I remember going in sleep deprived and ready for a nap. The wife was a flight attendant at the time, so she was god knows where... Results were negative. I slept like a baby. Later we found out my sleep was being interrupted by seizure behavior.

Anyway, how did yours go?
 

XxBlaqkxX

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As exhausting as it was to stay awake while my husband took me and the kids up the 2 hours there, I got there a bit early because it's kind of hard to predict what traffic is going to be like on the highway. Got there at like 7 because I was told my appointment was at 7:30 a.m. but perhaps the lady meant check in was at 7:30 a.m. on the phone. When I walked in and signed in, got all set up by the receptionist, she told me no one gets there to do EEG's until 8 a.m. Thankfully they had good communication and took me over at 7:35 a.m. to the other lobby to wait and at about 7:40 a.m., they were getting me into a room. Poor lady walked to me with a tear running down her face because she said she nearly choked to death on her apple - that must've been an awful start to her morning and she didn't bother to finish eating. I hope she wasn't rushing to get me in >_<

Anyway, the lady was sweet, got me all hooked up and everything - the pen on my head drives me insane, but at least it was more like a marker this time so no problem. I've had people doing those tests using ball point pens on me and that doesn't feel nice at all. Anyway, it took a while to get set up and she talked a bit, but I know I was probably awfully quiet because I was so tired. She went into her other room to start recording everything and I don't know if I feel asleep or not...it's weird, because I simply don't know. I think I must have for a while, though, because it seemed like she went into the other room and I was trying to relax and fall asleep, next thing I know she walks in, turns the light on, while saying, "Okay, you're all done!" She seemed rather excited about this lol. Either way, as tired as I was when she walked in and that she surprised me, I figured I must've fallen asleep for at least a few minutes. Although, it wasn't the best EEG, but I don't know what COVID protocols are for all that because I had to leave my mask on the entire time...hard to sleep like that. I wasn't offered a blanket, usually they have one - I felt like I was freezing on my legs, I'm glad I brought my big, bulky winter coat and kept it on when I was told to lay on the bed. That pillow roll is so super uncomfortable, too - it's hard as a rock. There was this nice soft pillow on my bed glancing over at me like, "I'm softer!" but was never offered so I didn't take it - sometimes I know with all the electrodes it can be tricky, but I'm sure there was a lady that gave me a more comfortable pillow before after she hooked me up from a different EEG.

I don't know the results yet, but with Thanksgiving and everything, I figure I may not get them until next week or so. I'm also having trouble with their portal because it seems my husband also has a portal on the same thing and used the same e-mail I did so it's causing problems and I might have to call and get that sorted out.
 

Nakamova

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I hope you had a nice relaxing Thanksgiving. It sounds like you did fall asleep, but even if you didn't, being "merely" exhausted can also produce epileptogenic brainwaves -- the kinds that can confirm an epilepsy diagnosis, and help show which parts of the brain are misfiring.

I've also wondered about why it's always freezing for hospital procedures! When I was in the pre-op for my shoulder surgery I kept asking for extra blankets. The nurses and doctors must just get used to it being cold...
 

XxBlaqkxX

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I hope you had a nice relaxing Thanksgiving. It sounds like you did fall asleep, but even if you didn't, being "merely" exhausted can also produce epileptogenic brainwaves -- the kinds that can confirm an epilepsy diagnosis, and help show which parts of the brain are misfiring.

I've also wondered about why it's always freezing for hospital procedures! When I was in the pre-op for my shoulder surgery I kept asking for extra blankets. The nurses and doctors must just get used to it being cold...
I did have a great Thanksgiving - thanks! :D I hope you did as well!

I think I probably fell asleep as well. It was probably such a light "drifting off" kind of sleep, more than likely. I hope it will all be as accurate as possible for the neurologist. I sure hope they update the results in my patient portal, but I understand it's been the holidays and may be a bit of extra time. I guess I'll find out in February either way at my next appointment.

Yeah, I don't even know. I wonder if the workers perhaps get a bit warm with the running around they tend to do or if it keeps viruses down. The lady didn't have a jacket or anything on and she came in to the room I was on and said, "Whew! It's warm in here!" So, I wonder if the heat got turned on or something? I still felt cold even in my big jacket, at least on my legs.

The times I've been in the hospital, blankets are always so nice.
 

XxBlaqkxX

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Just got my results - generalized epilepsy (some abnormalities). Drat. Oh well, I guess.

It does say "awake and asleep" on the paper so I'm glad I fell asleep so they could get the most accurate readings.
 

Army Vet

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Finding out it's official stinks since that means you have it (confirmed). However, I went about 10 years before I could FINALLY get something on paper to verify (PROVE!) that I had it. I was actually (sounds crazy) uplifted when they FINALLY confirmed what was going on and could focus where it was happening etc. What's worse than having a condition? Not being able to confirm what it is (and therefore focus closer on it). Hard to heal the patient when you don't know "exactly" what he/she has.

Plus this helped my case that much more that I was disabled and makes it harder for me to be employed. I ended up biting the bullet and got a lawyer, but I think I made her case much, much easier to prove once I got that abnormal EEG. Well he "CLAIMS" that he has epilepsy, but he has nothing but normal EEGs... denied...

Again, stinks that you have it, but at least you can feel more comfortable knowing what you're dealing with.

If you don't mind sharing, what are some of your symptoms? Auras? "Weird" feelings? Fear? Complex/partial/grand mal?

I usually start feeling like I’m there, but I can't really respond. Then I blank out mentally and stop talking and/or start laughing (small soft chuckle). Then go into a blank stare and come out of it within 60 seconds. Then I come out of it a little lightheaded with a hangover from the weird feeling. Not much memory of my actions during the time. I mainly know I've had one when I get that feeling. 99% of the time I can confirm it with my mom. Occasionally I'll have a complex seizure where all of this happens, but then I'll also get up and start walking around for no reason. I spent many hours trying to research these conditions, but it was VERY hard to describe in Google without getting 100 advertisements about helping with other things. I finally found this site after epilepsy sounding like the closest thing to my descriptions. Before that I didn't even know how to spell epilepsy not to mention the different types of seizures lol.
 

XxBlaqkxX

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Now we can teach you the secret handshake...
Well, I mean - I've had seizures for a bit over 20 years. It's nothing new to me, it just bites. I hate it so much...and to think I had a normal EEG once upon a time, was okay for 15 months without medications, and then COVID...awesome. -_-
 

XxBlaqkxX

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Finding out it's official stinks since that means you have it (confirmed). However, I went about 10 years before I could FINALLY get something on paper to verify (PROVE!) that I had it. I was actually (sounds crazy) uplifted when they FINALLY confirmed what was going on and could focus where it was happening etc. What's worse than having a condition? Not being able to confirm what it is (and therefore focus closer on it). Hard to heal the patient when you don't know "exactly" what he/she has.

Plus this helped my case that much more that I was disabled and makes it harder for me to be employed. I ended up biting the bullet and got a lawyer, but I think I made her case much, much easier to prove once I got that abnormal EEG. Well he "CLAIMS" that he has epilepsy, but he has nothing but normal EEGs... denied...

Again, stinks that you have it, but at least you can feel more comfortable knowing what you're dealing with.

If you don't mind sharing, what are some of your symptoms? Auras? "Weird" feelings? Fear? Complex/partial/grand mal?

I usually start feeling like I’m there, but I can't really respond. Then I blank out mentally and stop talking and/or start laughing (small soft chuckle). Then go into a blank stare and come out of it within 60 seconds. Then I come out of it a little lightheaded with a hangover from the weird feeling. Not much memory of my actions during the time. I mainly know I've had one when I get that feeling. 99% of the time I can confirm it with my mom. Occasionally I'll have a complex seizure where all of this happens, but then I'll also get up and start walking around for no reason. I spent many hours trying to research these conditions, but it was VERY hard to describe in Google without getting 100 advertisements about helping with other things. I finally found this site after epilepsy sounding like the closest thing to my descriptions. Before that I didn't even know how to spell epilepsy not to mention the different types of seizures lol.
It's been official for over 20 years...perhaps my post didn't sound so much that way. I just don't like doing the tests, getting the results, it never helps my hopes of anything much...except for the one time I actually had a normal EEG and didn't have to be on medications and then COVID...

I was diagnosed in about a year when I was a child because the teacher at school was seeing this go on and my parents had set aside times to talk to my teacher, record down what was going on in class so they could tell the doctor. My teacher was cooperative on that part and then the first EEG I ever had - abnormal, so perhaps that is why it was dignosed as quickly as it was. Perhaps the pediatrician was knowing what to look for, too.

I remember my mom begging to homeschool me, but all I wanted to do was be with my friends. Thinking back on it, if I had a do-over, I would've been homeschooled. It probably would've saved myself so much humiliation in the long run.

The word "aura" is kind of foreign to me because I don't generally hadn't recognized any specific auras throughout my lifetime. I felt like I had no warnings as I would usually wake up out of it and then the onset was slower so it would get worse in the day and that "being out of it" state could last all day long and then I'd suddenly snap out of it (usually after I got home from school and then didn't know how to do my homework because I didn't remember the lectures and how much of a fool I made out of myself).

Since having COVID, I notice a few more aura-like things - waves of nausea, extreme dizziness, eyes start losing focus (seeing double, feel like I'm looking through a fish bowl), pins/needles type feelings in my hands (I have caught myself grabbing one hand and the other as if I'm massaging them. Almost like I can't help it, or I'm trying to soothe the pins and needles type feeling). The only fear/sense of doom thing I have had was like a month before I got COVID and had seizures that were one after the next and weren't stopping. It was a miserable time almost a year ago now (it's been hard with the approaching holidays to cope with all the recalls of that time).

When I was a kid, they were saying it was grand mal problems - just out of it and super confused with what was going on - forgetting super basic info and things like that. During my first week of high school, I had epilepsy at school and it happened many times during freshman year. During the first month of school, I was playing catch up on all of my assignments, dealing with teachers that apparently didn't want to give me all the time I needed per school policy, and all of that. Worst year of high school. From then on, I was diagnosed with generalized epilepsy and it's still the diagnosis today. Although, it seems I'll wake up, feel super out of it, or before I go to bed, feel out of it, and then that progresses and ends up in epilepsy.

I think only once did I have slurred speech. I knew what I wanted to say, but my parents couldn't understand. Talk about frustrating. One time my body temperature fell too low.

The sad thing for me is that when I recover, the memories all flood back. Of course if I was unconscious, I won't remember those points, but if I was awake and acting like an idiot because of my lack of awareness in that time, I'll remember it. It was always a hassle to felt like I had to apologize to people the next day at school - friends and such. The nurse would notify my teacher and I would start crying or getting angry because I knew the school year wasn't going to be the same. Some teachers I couldn't ask a question without them asking, "Are you okay?!" So I stopped asking questions to those teachers, it was embarrassing...

I think there was one teacher that stood out to me. If I said, "I wasn't feeling...right...in class yesterday. I don't remember the assignment." He'd just say, "No problem at all. Don't worry about that assignment. Just focus on what we did in class today." I mean, he'd lower my stress instead of increase it. Such a wonderful teacher, I was so happy that I had him for 2 years for English class in high school. If I wasn't all there, I think he could kind of tell, but wouldn't call it out in front of the class. If I was lost with where we were at in my text book, he'd be lecturing while turning the pages in my book to the right place. I wish more teachers were honestly like that when it came to students with seizures...

Sorry to hear that it took so long to reach your diagnosis. In the medical world, it can be like that, and sometimes EEG's don't come back indicative of any problem. I'm glad you eventually got the diagnosis you needed, though.
 
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