Diary of an Epileptic

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Rae, my inner geek is giddy...actually, so is my outer one:

OnLive Gaming Service Coming in June for Mac & PC

I don't know enough about it yet because they only just started talking about it, but it's possible that Mac and PC users might be able to play together since it's launching for both platforms at the same time :woot:





Yes, I am a nerd. And a geek. I'm good with that ;)
 
I hope you can take a long comfy nap when it's all over.
 
one word...OMG

wow.
Winnipeg has some stupid technicians in the EEG department. I'm not gonna go into detail, as I'd be writing a novel. but lets say, if they would have listened to me in the first place then it would not have taken so long. They could have let chad in the room and it would not have taken me 2 and a half hours to fall asleep.

plu I rolled over and pulled a few wires off. because they had a new guy put them on for training and he didnt do it right. We were there until midnight. I'm beat. I went to work to avoid more frustration of sleeping. argh
 
That sucks Rae. Do you have to go through this whole thing or did they get any useable data?
 
No Idea. They *as only the technicians* couldnt say whether or not. But my guess would be yes. only because if they didnt catch anything, then they would assume it was because of their mistakes.

I did have a pretty big myoclonic episode. probably more shaking out of frustration than anything. but I got so mad! The new technician guy was late. I had to be there earlier to check in before the test, then sat in the waiting room waiting to be called at 4:30. I didnt get called until 5:30 *presumably because they were running behind due to sad new technician.* So I got in there, and they introduced the new guy, and he did the whole usual explainations sorta like a script he was taught to warm up and practice I guess.

he started measuring my head. and I asked if I could video tape it. but the new guy wasnt comfortable. so i'll ask agian next time. so after he finished measuring *which tooka bout 15 mins* he got the lady *the one who did the test for me last time* to check his work. She checked the first measurment and told him because this measurement was wrong, he had to do it again.

After that was done, he started stickign the elctrodes to me. he had to scrape or score the area a bit *not enough for it to bleed* to make sure that the glue would firmly hold while I slept *turns out he didnt even use the stronger glue, so they fell off a few times* this hurt a bit from him pressing hard and gave me a headache. Had alot of simple partials making it very difficult to not snap at their questions or the situation.

I had to do te hyperventilation thing, but my nose is plugged so I had to do it with just my mouth, and it didnt have the same effect as last time so im sure i did it wrong this time. no tingles, no dizziness, no nausea. The resting part was where the myoclonics happened cuz I just was so frustrated. I was clenching my fists in anger and dug my nails in so hard it blistered a bit. not a great sign that I'm having a good time.

Then they told me to sleep. They didnt alllow any music, didnt have a blanket, had a S!**$ pillow and no chad. I was not a happy camper. so they gave me about an hour to "try" but that didnt work, and by then I was super hungry, and had to pee really bad. so they unhooked me, and told me to walk around for an hour and go pee. this is about 7pm now. so we came back at 8, and they were finishing up with someone else. By the time they were done, it was 8:30.

I went back in and they rehooked me up and let me try to sleep again. same thing, but this time as i fell asleep, I instinctivly rolled to face away from them *as usual for me, even if chad is in bed. I dont like breahting on my face and I like to be spooned* but when I did this, the wires pulled tight on that side and pulled off. 3 bloddy times! so now it was like 10:00 before they realized that this wastn going to work well. *I really wished they would have bene okay with me going home to reschedual, but at the same time I was frustrated on having to do this agian*

So they let chad in and I slept for the 2 hours and then did the flashing lights and went home to shower. lather, rinsed and reapeated 5 times, and then slept. woke up at 7am to come to woek.

I have the sniffles, simple aprtials, a headache, tired and grumpy. the guys at work better not mess with me today if they want to continue to be "the Men" at work.
 
So, I have had hiccups off and on all day. the longest relapse lasting 2 hours. It was getting so bad it hurt. The guys tried to scare me by yelling, but loud noises dont make me jump. they tried making me drink water in numerous ways. putting a MOUTHFUL of sugar in my mouth and trying to swallow it. I ended up hiccuping emense amounts of water and still powdery sugar all over my desk.

They held me upside down, they plugged my nose. they made me do jumping jacks. I played along because I was bored and it was slightly amusing despite how tired I am. it gave them a kick.

But the one who won the grand prize by ridding them was my controller Elsa. I have an EXTREME phobia of styrofoam. don't ask me what about it bugs me as I logically know its a silly fear. but I wont touch it. and i dont like the sound it makes either, or how it static sticks to you.

So she went to the ladies room/board room behind me and I thought nothing of it. as she is allowed to pee and thats where our bathroom is located *in the board room* so this is a normal occurance. But when she came back she picked up something from the printer directly behind me. Then I felt this strange feeling on my arm, and looked down and screamed bloody murder, and launched myself out of my chair and al the way across the room. She dropped a styrofoam cup down my shoulder and into my lap.

*thinking about this now makes me wanna panic and cry.* But it cured my hiccups. took me so long to catch my breath.

I think I will do another video sometime this weekend. not sure when exactly.
 
Hiccups can be a seizure symptom too. Related to the vagus nerve.

I hope you can have a relaxing weekend Rae. You've been through the wringer.
 
What an awful day you had. I can't believe it took so long to get the test done. It's frustrating when they don't listen. BOO on the EEG techs.

Partner gets the hiccups too and they always last a while. I get him to regulate his breath by doing a slow belly inhale to a slow count of 6, hold for a count of one, and then slow exhale to the count of six, hold for a count of one. Three rounds of that usually get rid of them.
 
I actually use popsicles to get rid of the hiccups. My dad used to get them horribly and they were uncontrollable - when he got spinal cancer that went to his brain, they got even worse and the hosptial staff was at a loss too until finally one day one of the older nurses told us to try popsicles. We thought the lady was about half crazy until we tried it and it worked. I have no idea why? Maybe the shock of the really cold plus the having something in your mouth that forces you to control your breathing? No idea why, but I know that whrn I get them and they are really bad and nothing else works, a popsicle will usually put a stop to them.

Anyway, hope you can get some rest and are feeling better.
 
So would that mean that a VNS implant would make hiccups worse or better?
 
In theory, the VNS implant would help. But as you know, VNS implants are not 100% successful...
 
Off to the hospital. My lips aren't frostbite. Woke up with them swollen and I'm covered in a rash. Itchy*burning feeling again. Cheeks swollen too. Little hard to swollow.

I'm in the car right now. Yay for data phones. I'll update you when I can.
 
This was supposed to be your weekend to recover from the EEG. So cut this ER stuff out!

Sounds like an allergic reaction, hope they figure it out ASAP.
 
I know. I'm still in the waiting room. Busy busy busy here. Can't speak at all and I am having lots of strong auras. Haven't eaten yet today because I can't open my mouth or even swallow spit. I'm so swollen its a little hard to breathe. So I haven't been able p take my meds yet either.

They gave me Benydryl so far and its done nothing to help. Not sue how much they have me though.
 
Seems pretty clear (to me) that this is the Lamictal allergy and that you need to get switched onto a different AED. Now.
 
Im loading a video relply. WAY too tired to type much. Just got home, and long story short, things escalted fast.
 
Back
Top Bottom