I will try to cover as much as I possibly can, but keep in mind - I didn't plan on many events to take place that would end up in my having an experience not quite as pleasant as I had expected.
I arrived at the Hospital around 8:00am, I had to pre-register the night before and then complete registration when I arrived (it's coded as a surgery-type of thing). At around 8:30am I was guided to my room and soon had my first staff guest. I am sure this varies by hospital, however, this is how mine went.
Two Nurses: One is your primary nurse who gives you pills, flushes your IV, etc. The other is an aide who will escort you to the restroom, and pretty much do anything possible to annoy you.
One Case Manager: I don't know what she does short of dropping off a business card.
Two VEEG Readers: You will constantly have two people near your room who will be viewing you via video camera (typically 2-3 camera watching you from various angles). There is also an audio box they can hear everything you can and speak to you, as well.
One on-call Epileptologist (probably your doctor or another one on staff).
Once you meet the 'staff' your electrode application begins. This takes around 30-45 minutes. They measure each location for placement, mark it with a 'china pen' (red ink) and then being placement. This hurts, this isn't like an EEG since they want them to stick. They scrub, apply paste, electrode, more paste and then tape. Once they do this, they apply gauze to your entire head, and then tape it, then they apply "Grass" (a net) atop that and cut out ear holes.
This is so uncomfortable and painful. I want to add, if you have Trigeminal Neuralgia - they do not do anything for that unless you freak out. I lasted as long as I could. They cannot pick up waves from your frontal lobe without the electrode placed in the primary trigger point for TN. I have TN and this was the worst pain I have ever felt. I'd rather be in labor.
Below is the finished product after application, this is me and my whopper.
And another shot...(my mouth was full)
Back to the story...
Your two readers and your main nurse all will have pagers, should you push your "Seizure Button" they will all come running into your room and give you a 'test'.
They will ask you your full name, where you are, etc. They will test your motor skills, vitals and say three words. Once they finish, you will be asked to recall the three words mentioned (small words or numbers).
The impression I was under, they were the ones watching but you are expected to push this button upon any suspected symptom. When you have symptoms like mine, I am fully coherent most of the time. So one 'shock' I had to push the button and go through 15 minutes of questions. It grew annoying after the 3rd push.
I'd personally like to see some changes set forth regarding this type of a thing because people get button shy. They will tell you if something did or did not show up and if nothing showed up, you feel kinda stupid for going through all of that.
Each day they do standard testing to induce seizures (similar to the EEGs). You will have the photo stimulation, hyperventilation, and then what they call a baseline. The baseline is this: They make you relax and shut your eyes and remain still/relaxed for five minutes. They will also put you on an exercise bike for 15 minutes or longer.
If all else fails, they try various methods to trigger a seizure, like having you drink alcohol, coffee, etc. May be the first hospital I was in where my doctor wanted me to get drunk ( I declined, I don't drink).
No matter your seizure type, you will be marked as a high risk for falls and will not be allowed to get up without supervision. This can be an 'issue' when you have to use the restroom. I am sure out there happens to be better nurses than mine who felt the need to open my door as soon as I flushed thus ticking me off. I ended up with 'potty stage fright' and didn't "go" until I got home.
The wires from your head (electrodes) to the stand are about the length of an IV. You have to cart this with you when you use the restroom or want to move around your room. The only downside is you cannot leave your bed without ringing for a nurse for assistance. Every movement you make has to be with a nurse present, this is so annoying I have no words to explain how awful it was.
From my understanding, the first day you stay on your normal medicine. The first night you will be sleep deprived, normally staying up until 3:00am. The second day, they decrease your meds by half and you are not sleep deprived. The third day, your meds are all taken away and you are sleep deprived again. They seem to sleep deprive you every other night. Before allowing you to leave, you have to be put back on your meds.
I am on Keppra, which is now available via IV - so I was able to get my full dosage before going home (I was actually kind of high, which was semi-fun).
The hardest part is not being able to deliver what they want which is a grand mal seizure. I have one maybe once a year, but several smaller focal seizures or complex partials every day. I felt like I failed, and my reader also had Epilepsy so she did comfort me that while I may not have a drop seizure, they are getting great information when I sleep.
When you sleep, your EEG is easier to read. Keeping in mind, while you are awake your EEG picks up everything. All movements from muscles, even eye blinking, and so on. You cannot chew gum either.
Bathing is pretty much out of the question, you have a small portion of your face you can wash and my nurse rushed me so much that sponge bathing in the restroom wasn't very fun with someone talking to me the whole time.
I am home now, and my head hurts bad. I lost a LOT of my hair from the paste and the tape. I have large knots on my head and red spots from the tape that peeled off layers of my skin on my back, chest, arms and face (from the IV site, EKG monitors and EEG tape).
I really hope this helps people out, because this is probably what they don't tell you. I'd have been better prepared had I known this. I had all of my crafts ready to keep me entertained, my computer and movies - and found myself so depressed I didn't want to do anything but cry and sleep.
Some things you can do, is ask them to face the monitor towards you. If you lay very still, you can watch your brain waves which is pretty neat. I really enjoyed it, to see spikes when I felt 'weird'. You can also see how bad it must stink for them to filter movements, you can blink or chew to see what a drastic change in spikes it causes. It's rather fascinating.
I wouldn't suggest doing this without a friend or someone who can stay with you. I am one of those spur of the moment 'potty goers' and when I have to go, then ring a nurse and wait five minutes - I get annoyed. You can have a friend with you and go then and there. As long as you have a guest.
I can only assume most Epilepsy Centers are properly staffed, this one was kind of slow - but my floor had surgery patients too and several codes going off, so the staff was always busy.
I have to wait two weeks for my results since I did not have a GM seizure and they have to read through everything. It was an experience to open my eyes and I can only applaud parents who have done this with kids and all adults who have done this, too. It was very hard to go through, but I did a lot of this alone with my guests staying a maximum of 30 minutes.
If I ever have to do it again, I won't do it alone.
I hope this helps someone, I will edit this later and add anything I had forgotten.
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I think the main complaint I have is if they are keeping things on people for a long duration, no matter how time consuming it is - they need to clean the areas and reapply. Many people have seen my pictures to know a general idea of before and afters. I took these pictures about 30 minutes ago once I finished my bath.
These are from the electrodes that they say 'do not touch your skin'.
This image below is from the EKG monitor, when they removed it, it ripped the skin off of my back - literally.
The next three images are from the left side of my face, one further back, one zoomed in more and one a close-up. The last picture was actually bleeding until I put ointment on it.
Image 1
Image 2
Image 3
This is from behind my ear (both sides are the same)
This is from on top of my head (I can't take pics well at this angle, hehe. It's hiding under my wet hair)
I wanted to show these because parents may take their kids to have this done, and may hear them cry and say it hurts and there may be a nurse saying "It's just not comfy" or "It probably itches". Chances are, it's hurting because the skin is being rubbed off by the electrode. Or even if one of you has this done, if you feel like it's raw - it probably is, make them take it off and put more gooey stuff on.
I have no clue what to do about my face, but I look like I have a serious skin disease now.
You all have me in the flesh, but here I am - looking funky, and reporting news. I sure love you guys and gals. The pink spots are actually red, but my flash keeps turning them pink and if I don't use a flash you can't see. Bleh.
PS: Never share these pictures!! :eek:
I have around 20 spots like this all over my head, and taking a bath wasn't as pleasant as I had hoped it was. I'm sure you have all taken a bath or shower when you had sunburn at one point in your life. That's how it felt.
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