EMU for a week maybe soon. Can anyone tell me anything about it?

[MaeDae]

Anyone want to share their experience in a EMU? I am scheduled to have a inpatient EEG in a few weeks, that's if my insurance agrees. I'm not scared as a matter of fact I need a little vacation. If I read the instructions correctly, they even will allow me to smoke? That can't be true, I better go back and re-read that page. I was wondering how effective is this type of testing? Is it better than doing a 3 day EEG at home? Are they looking for something that can't be picked up on a home EEG? What should I prepare for? What item (other than normal stuff) is a must take or anything else you may want to share with me about an inpatient E'EG in a EMU at the hospital.
I'm hoping for positive results, meaning that if I am having seizures that it decides to peek its little head out during my stay, but at the same time, hoping that it's not (so that I can stop taking the meds). But I worry about the fact that they can be Pseudioseizures (Psychogenic). Then I need a new help. I am worried either way, but am so ready to find out. Its been three years now since my first episode. I don't, haven't had tonic-clonic episodes. My first neuro doc described my episodes as simple partial and complex.

 

[Nakamova]

Hi MaeDae,

I haven't done an inpatient EEG myself, but other CWE members should have tips to share. Here are few CWE threads that might help:
http://www.coping-with-epilepsy.com/forums/f23/eeg-advice-11384/
http://www.coping-with-epilepsy.com/forums/f23/ambulatory-eeg-10060/
http://www.coping-with-epilepsy.com/forums/f23/5day-eeg-help-16175/
http://www.coping-with-epilepsy.com/forums/f23/72-hour-eeg-10837/
http://www.coping-with-epilepsy.com/forums/f23/5-day-video-eeg-maybe-no-seizures-9855/

 

[qtowngirl]

-no smoking
-no touching electricity. if you bring a laptop or cel and need to charge it a nurse (or if someone comes with you) will have to do the plugging in/out.
-room door to stay open at all times
-not allowed to go into bathroom alone (a nurse will stand outside it when you're in there)
-off meds is most likely and good, you WANT to have a seizure, as many as you can actually. i had to stay 17 days and have simple partials and three g.m's before they were satisfied (were already confident i was a candidate so wanted me to stay until it was a go-ahead)
-electrodes come off every three or four days, and that's when you're allowed to have a shower
-you 'might' be allowed to run outside and have a smoke before they put the 'trodes back on, but i wouldn't get too excited about that yet

must take is just stuff like:
-very comfy jammies (and ur own pillows are good too)
-lots to read and keep your mind active such as crosswords (esp. for the nights they want you awake all night).
-dvd movies that will hold your interest, or a marathon dvd set of tv series
-comfort foods (as was suggested to me before i went in - chocolate!!!!)

curious re: you stopping taking the meds. you mean after the unit? whether you turn out to be a surgery candidate or not it doesn't get rid of meds. depending on what they find it could be upping the dosage or switching altogether.
if you end up having surgery, there's no going off meds for a minimum of two years, and that's only if you don't have a sz in that time. bleh.
i'm staying on my main med for life b/c i've had thousands of szs over 20 years (way too much damage), even tho i'm almost at a year sz-free since surg. as my epi calls it, 'safer than sorry.'

GOOD LUCK!!!

 

[MaeDae]

qtowngirl,

thank you so very much for your response. I found all the information you provided very helpful but... answering your question Im not sure, the instructions she sent me home with last Thursday only say what they will be doing and what I should bring. Im having an office EEG this Wednesday and was told not to stop taking meds. They didn't say rather to stop taking meds before checking into the EMU in 3 weeks. She said a nurse would contact me the evening before with additional instructions and to confirm my spot is till available and the hospital. Would they perform surgery for simple partial complex seizures? and you mentioned that even if they find nothing I will have to keep taking meds, what if they're considered Psychogenic? Will they still have me taking the anti seizure meds?

 

[Matthew74]

MaeDae: QTownGirl is spot on. I haven't been in to have seizures on purpose, but I was in the EMU for several days after getting sick.

I wasn't off meds, but it was good to take a walk around the building if I could get someone to take me.

Ditto on Dvds and comfort food. If there is anything you eat everyday that the hospital might not have, you can take a bunch to make. A friend of mine brought the Star Wars trilogy, got movie popcorn from the movie theatre, and we had a movie marathon.

Take stuff like you are taking a trip somewhere, so you can be as self-sufficient as possible. It just makes it easter to have your stuff, because you are used to it, and so you don't have to ask for it. Take real slip-on shoes with rubber soles.

I prefer to get dressed everyday if at all possible. They had these really cool scrubs/pajama pants that I wore. I wished that I had a good belt pouch for my EEG/EKG box. Instead of having my EKG lines coming out of my collar, I made them come out the bottom of my shirt. My EEG "hat" always got wrecked at night. Next time, I will probably tell them to put it on tighter or something.

If you sleep on your right side you might want to ask them to put the IV in your left arm, or wherever is most comfortable for you.

Figure out all the light switches, how the bed works, intercom, tv, climate control, etc. when you get there, so you feel more at home. It doesn't hurt to ask them about turning the air up/down, closing the door, etc. Take a sweater or something in case. If they keep the door open, you might be able to have them pull a drape or something so people can't see in. When you first arrive, it might be good to take a walk around the floor, just to get the lay of the place, so you feel more comfortable.

The first night was the worst. I got woken up every hour or so so they could check my vitals. They will come to draw blood everyday at crack-o-dawn-thirty. Then, while you are still sleeping all the doctors will come by (perhaps with droves of medical students), to wake you up and "talk" to you before you can figure out what your name is.

 

[qtowngirl]

qtowngirl,

thank you so very much for your response. I found all the information you provided very helpful but... answering your question Im not sure, the instructions she sent me home with last Thursday only say what they will be doing and what I should bring. Im having an office EEG this Wednesday and was told not to stop taking meds. They didn't say rather to stop taking meds before checking into the EMU in 3 weeks. She said a nurse would contact me the evening before with additional instructions and to confirm my spot is till available and the hospital. Would they perform surgery for simple partial complex seizures? and you mentioned that even if they find nothing I will have to keep taking meds, what if they're considered Psychogenic? Will they still have me taking the anti seizure meds?

anytime, ask away

yeah we don't go off meds on our own, it's something they do under close supervision once you're in there (some docs do it right away and others wait a few days to ramp down, depends on them/what they're looking for/how long you're scheduled to stay).
tho there is a few reasons one gets a trip to the unit, the main reason is to see if they're a surgery candidate.

.....Would they perform surgery for simple partial complex seizures?
can you explain a bit more on this? do you have simple partials, complex partials, or both?
and yes, they might. being a surgery candidate isn't based solely on one thing; first off they have to be sure-
1. the seizures are coming from one area ie: a focal point (which is where simples and complex are based),
2. they're true epileptic seizures,
3. focal point isn't too deep or include necessary function areas such as language,
4. the benefits will outweigh the risks (if in a particular case it appears seizure reduction would be less than 50%, it's less likely one is a candidate)... and a host of other factors that an epilepsy team bases it on. don't worry about it too much yet, baby steps and low stress are important i know it's all alot to take in. hugs.

.....and you mentioned that even if they find nothing I will have to keep taking meds, what if they're considered Psychogenic?
were you told they may be psychogenic or is it just something you're worried about? it says your first neuro told you they were true seizures, so he was the one that diagnosed you? if you have an actual e diagnosis i wouldn't 2nd guess it. unless this is the entire reason they want you in the unit, to define if they're true epileptic seizures...?

.....Will they still have me taking the anti-seizure meds?
that i'm not sure of; i don't focus too much on the non-epileptic end of things as (lol pardon the pun) my head is full enough of issues and research of epilepsy. they have lots to figure out so like i say don't be too worried, and keep reminding yourself how fortunate you are many with epilepsy never get this opportunity, or wait years and years to get there. it's a chance at changing life and getting better, focus on that and the rest will fall into place. plus, these are REAL specialists, most trained help we can get... better x a million than a standard neurologist.

good luck, nat.

 

[Nakamova]

They didn't say rather to stop taking meds before checking into the EMU in 3 weeks. She said a nurse would contact me the evening before with additional instructions and to confirm my spot is till available and the hospital. Would they perform surgery for simple partial complex seizures? and you mentioned that even if they find nothing I will have to keep taking meds, what if they're considered Psychogenic? Will they still have me taking the anti seizure meds?

All excellent questions for your neurologist. Write them down, and call NOW to get some answers. Don't be afraid to be persistent. This is important stuff. In particular, you should be told whether you'll be going off meds or not.

Would they perform surgery for simple partial complex seizures?

Surgery is usually considered a last step after other treatments have proved unsuccessful. Even then, not everyone is considered a good candidate.

even if they find nothing I will have to keep taking meds, what if they're considered Psychogenic? Will they still have me taking the anti-seizure meds?

A positive EEG can help rule in a seizure disorder, but a negative EEG can't rule one out. Partial seizures can be especially tricky to catch on the EEG. Some kinds of seizure activity are too transient or occur too deep in the brain to register. For some people it can take three or more EEGS before one comes up positive. And some folks with epilepsy never have a positive EEG. For all these reasons, a good neurologist will often make an epilepsy diagnosis based on the clinical information alone (i.e. your actual symptoms).

More importantly, a negative EEG is not proof of psychogenic non-epileptic seizures. If your neuro does think this is a potential diagnosis, he should discuss in detail why, as well as what the next steps would be. Treatment for psychogenic seizures might involve a referral to a psychotherapist, as well as the possibility of tapering off the anti-seizure meds to see how well you do.

 

[qtowngirl]

Surgery is usually considered a last step after other treatments have proved unsuccessful. Even then, not everyone is considered a good candidate.

this is true, but depends where you live in the sense that not all states/provinces/countries go through the same steps.
i'm in bc/canada and 2ndchances is in ontario and we both went from the unit to the surg table, no mention of other treatments. my team never brought up the vns or deep nerve stimulator etc.
and depends on the type of seizures, how long you've had epilepsy, what damage they find, on and on. sometimes you'd be a candidate if the seizure focus wasn't too deep. that means everything else is then tried.

Treatment for psychogenic seizures might involve a referral to a psychotherapist, as well as the possibility of tapering off the anti-seizure meds to see how well you do.

very true, and good to note maedae that one can have both true and non-epileptic seizures at the same time in life.

 

[qtowngirl]

MaeDae: QTownGirl is spot on. I haven't been in to have seizures on purpose, but I was in the EMU for several days after getting sick.
Then, while you are still sleeping all the doctors will come by (perhaps with droves of medical students), to wake you up and "talk" to you before you can figure out what your name is.

ditto to everything matt said, except really be careful when it comes to anything plugged in or a power source, such as turning lights on and off. it's up to them, but most places don't want you touching any power, i myself wasn't allowed to turn lights on and off either.

and haha yes! docs are there very early and you just look at them like 'wtf is going on here, i can't even understand what they're saying.'
yeah, lack of sleep and off meds can be fun!

 

[MaeDae]

Mathew74, thank you for those tips.

I am usually up at the crack of dawn. I however am not a morning person. I will pack 2 suitcases full of stuff and this hospital "Cleveland Clinic" is a diet soda only hospital, so snacks and sweet drinks will be a must. Wow, you guys have told me some good stuff. I planned on bringing lap top and cell phone, but now, I will pack all the tear jerking movies I can. Since I don't know how to laugh to myself, I wont take the funny stuff, I might get too loud. I am looking forward to this... I need a vacation bad.

 

[MaeDae]

Ok, Nakamova, qtowngirl and Mathew74,

I went back and read over my 1st neuro doc notes. He stated that although eegs were normal he suspected that the symptoms I described susjested that there might be simple partial seizure and complex seizure. That's when he first prescribed keppra. It was the same pretty much every visit except for the first few. I seemed to improve over time after taking Depakote as keppra was didn't work for me. Now that I have a new neuro doc, I guess and can only assume she wants proof but her diagnosis also says seizures. The information each of you have provided has made me very comfortable and I won't worry about the whole thing. Tomorrow I start the trileptol (spelling) from 150mg 2x's a day to 300mg 2x's a day. I have just one more question. Ive been having extreme trouble reading and focusing on what I am reading. I find myself reading the same paragraph over and over and then all of a sudden it just pops. It looks like mumble jumble and I can't keep my eyes focused on one line at a time. I've been reading at the end of a sentence then the beginning? Don't know what this is and its pretty scary you know. Is this or could this be seizure activity? It doesn't last too long. When I find myself doing this I just put whatever I am reading down for a half hour or so and then go back and read it and I have no problem at all.

Further reading the packet that they gave me for the week long eeg, I found the section pertaining to what to bring, It didn't say what to expect regarding treatment etc and Regarding the smoking, it said, to inform the nurse that I smoke prior to coming to hospital and not to wait til I get there to tell them that I smoke. So I guess they will make accomodations for my bad habit or provide a patch. Now for tomorrow eeg, I was told to avoid caffine and to deprive myself of 2 to 3 hours of sleep the night before, but to take my meds as normal.

I appreciate you all for helping me. My stomach doesn't hurt as much thinking about it. Especially the psychogenic stuff. I already feel crazy and I think at this point if it was confirmed I'd would lose my mind. I know what is happening to me and though I am creative I could never imagine or think of the things that my body has been experiencing for the last 3 years since my brain aneurysm.

Thanks again, starting to get fingers tied up trying to type.

 

[masterjen]

I am looking forward to this... I need a vacation bad.

Um, not so sure I'd call it a vacation. My experience wasn't bad, but was a long ways from being "vacation-like". I was there for almost 3 weeks; I'm sure a shorter time will be much more tolerable.
It was a pain having to ring the bell just to use the bathroom, not being able to shower when I wanted, medical staff trooping in and out all the time, and except for the bathroom being confined to bed 24/7. Despite taking things to do, there are times of extreme boredom. And not to mention the frustration of not having a seizure when in a more normal kind of day-to-day life they would probably occur.

 

[Nakamova]

I find myself reading the same paragraph over and over and then all of a sudden it just pops. It looks like mumble jumble and I can't keep my eyes focused on one line at a time. I've been reading at the end of a sentence then the beginning?

MaeDae, it could be a medication side effect or also a seizure- or migraine-related symptom, or something else entirely. Does it happen all the time, or just at specific times of day?

 

[MaeDae]

Um, not so sure I'd call it a vacation. My experience wasn't bad, but was a long ways from being "vacation-like". I was there for almost 3 weeks; .

OMG three weeks. I was told only 5days. I'm not sure if insurance would approve 3 days let alone 5. Did you know this prior to being admitted? Did they tell you it would be 3 weeks? OMG, I would lose my job and am pushing it just taking 1 week?

 

[MaeDae]

MaeDae, it could be a medication side effect or also a seizure- or migraine-related symptom, or something else entirely. Does it happen all the time, or just at specific times of day?

I've been noticing it more over the last month or so, its been happening often. I have not paid attention to time of day, but I would have to say yes, between 9am and 12noon while Im at work, but I have noticed it in the evenings for instant, like when I read some of the things here at CWE. I think I can understand my eyes not staying focused, but not being able to understand what I am reading is scary. I told the EEG tech about it today when I had a 180min EEG done she just nodded her head and continued writing. They did the strobe light and hoped that I would fall asleep for at least an hour.. I didn't get to see a doctor. She did say someone would contact me regarding my results and that if there was any evidence of abnormal brain activity I would not need to do the week long test. I also noted that she didn't put probes all over my head, only on the base/side of my neck and the middle to the front of my head, she said 25 total.

 

[Matthew74]

FYI: When I started taking Keppra I got left and right mixed up, and became somewhat dyslexic. The first thing I noticed (immediately) was that my left hand was typing when I wanted my right to and vice versa. The letters got all out of order. Then, I sat down at the piano and my right and left hand were all mixed up. After that, I began having problems misreading words and sentences. I would mix up the letters of a word in my head and read it as another word, or I would mix up the order of words in a sentence to make it say something different. Finally, I began to loose the ability to tell if a word was misspelled, or how it was misspelled. I could look at it over and over and still not know if a letter was missing. My vowels also got confused, like "e" and "i". I developed problems getting numbers mixed up, like thinking 123 is 132. I started having problems reading a ruler. I would think that 1 1/4" was 1 3/4", and things like that.

Moving my right hand when I wanted to move my left hand went away. I don't get words in sentences mixed up when I read anymore. I still have the spelling problem, and I often type letters in the wrong order. I still have the number problem, but not as bad. I never had any of those problems growing up or as an adult, until I started Keppra.

 

[qtowngirl]

OMG three weeks. I was told only 5days. I'm not sure if insurance would approve 3 days let alone 5. Did you know this prior to being admitted? Did they tell you it would be 3 weeks? OMG, I would lose my job and am pushing it just taking 1 week?

from anything i've read on the subject, the US and canada are quite different in this area. as you know we don't pay for it or need insurance, simply take time off which is no big deal either as many people have sick days paid through their employment.
jen and i live in the same province, and i was in the unit (could have been the same bed, there's only two ) for 2.5 weeks, obviously a canadian thing. it's too bad down there a patient only stays for a week at best, hugs out to you guys b/c that is simply unfair/unrealistic.

like we said just get the least amount of sleep possible while you're there... usually a great trigger.
nat.

 

[masterjen]

OMG three weeks. I was told only 5days. I'm not sure if insurance would approve 3 days let alone 5. Did you know this prior to being admitted? Did they tell you it would be 3 weeks? OMG, I would lose my job and am pushing it just taking 1 week?

I knew going in that it would be a minimum of 1 week and that I would "have" the bed for up to 3 weeks as needed. I agree with Nat that those who live in the US are in an unfortunate situation, as seizures don't always cooperate and may not necessarily occur in the same cycle as they would when one is at home and living their every-day lives. That was the case for me: at home I was having strong seizures every 5-6 days, but my seizures seem to be a least partially associated with being excessively physically active and very busy - not exactly going to be that way lying in a hospital bed lol!
It seems in the US patients generally do not have to wait as long for a bed (I had to wait almost 2 years), but scheduling of the beds in BC seems to allow for longer admissions when needed in order to allow doctors to get the info. they need.
Any word yet when your admission will be, MaeDae?

 

[MaeDae]

Yes it will be this Sunday 7/20/2014. It was initially 8/4/2014. I had an in office EEG done yesterday (Wednesday) and I was told today that it was normal. But prior to the nurse calling me and telling me it was normal, I got a phone call earlier from the Epilepsy Unit asking me if I could come in on Sunday 7/20 instead of 8/4. I had already asked my boss for 8/4 week off and I needed to be sure it was approved by insurance. She told me that it was approved by insurance so I said yes but I didn't ask why, she said they had a room available and if I wanted it. I didn't think anything of it at first but when I got off the phone I thought it was odd since I was just in their office yesterday.
I immediately thought something was wrong because during the EEG I'm sure I stopped breathing while trying to sleep, not unusual for me because I have sleep apnea as well. But during the entire study, my heart was beating hard tho I felt relaxed I kept trying to make my heart beat slow down. So, I am going in on Sunday.
I did ask how long I would be there and she said maybe 3 to f5 days but I felt she wasn't sure because she hesitated. A few hours later I got the call that the EEG taken yesterday was normal. I still think something was wrong with heart rythem and they didn't like it so they are calling me in early. I got this feeling that this will be the focus during my stay. I have an ascending aneurysm of the aorta and mitral/aortic regurgitation.
Also regarding the reading issue, I am also having great difficulty talking. I want words to come out but they wont. I hear myself saying the words but never vocalize them. I don't have a stutter but for the last month or so, I've been stuttering badly and I've been taking the trileptol since August of 2013, about a year. Can side effects from a med take that long to surface?

 

[thecatcameback]

I'm not sure what you mean by an EMU, but I had a 5 day inpatient Video EEG a couple weeks ago. They captured a seizure thank God. This was my 4th time going through this. I had to come off my meds to uber low doses. I was going through horrific withdrawal symptoms, especially from the Lamictal. They got what they wanted though. I have seizures where they thought and I'm a good probable candidate for surgery. I'm working on having a positive feeling about being operated on. Getting scheduled for a battery of tests, I'm like a deer in the headlights.