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Hi everyone,

I'm a 24 year old female (diagnosed at 16), and currently on a set doseage of Keppra, Lamotrigine, and Carbamazepine. I have been taking the same medication for almost 2 years now and have since been seizure-free. My concern is the effect taking these 11 pills every single day will have on me in my future. Does anyone have much information on this? I'm having a hard time finding any.

Also, I'm wondering if it's possible that I have out-grown Epilepsy. As I said I've been 2 years seizure free and had completely no auras. Is that possible?
Right now I have the oppurtunity to go into the "Seizure Investigation Unit" in Vancouver, Canada but I'm terrified. As I haven't had one in so long I'm really scared for them to try to make me have them in order to track where in my brain they may be coming from (I've had 2 MRI's done and they've seen nothing on the scans). Any thoughts on what I should do?

Thank you,

- A scared, defeated, sad woman.
 
First of all, I also was in the SIU at VGH, and the staff there is AMAZING. You will be extremely well looked after, and they honestly care about you. You are not out of their sight for any period of time (yes, annoying at times), but it is for these reasons you should not fear potentially having a seizure. It may be that with a day or two of 24/7 recordings that they will get the information they need, and significant reduction in medication may not be necessary.

As for potentially having outgrown the seizures because you have been seizure free for 2 years is very difficult to say, because you have been medicated for those two years :) It may just mean the medication is doing its job.
 
Thank you so much for responding!
Having been there yourself I have so many questions I'm hoping you can answer!

- Are you allowed to use a laptop/phone?

- What sort of things do they do to provoke seizures? How often do they try these things vs leaving you alone?

- How many seizures do they try to get you to have? (I feel like it's going to take a lot to get one out of me. Even before all the med changes I was only having them say 1 time every 6 months.)

- Does having seizures not scare you? I remember the feeling and I'm terrified of losing that control. I feel my head do this weird twitchy thing, my arm go up, then I completely black out
 
Thank you so much for responding!
Having been there yourself I have so many questions I'm hoping you can answer!

- Are you allowed to use a laptop/phone?

Cell-phones are permitted, and they have land-line phones in the rooms as well. Sometimes reception on the cell-phone was not very good so I would generally text or make a brief call to someone, and they would then call back on the land-line.

Lap-tops are permitted, but the facility does not have internet access. Expensive items are discouraged, because there are times (at least when I was there) that I was taken out of the room for a test and there would be no one around to watch my belongings.

- What sort of things do they do to provoke seizures? How often do they try these things vs leaving you alone?

I was taken off all medications cold turkey the second day. Sleep deprivation is frequently used to trigger seizures (so definitely rent a television lol; the nights can be long), and sometimes the strobe light is used. They also have an exercise bike. Unless you have a friend or family member with you, you will be "alone" much of the time but you will be under the constant eye of the nursing staff and video camera. The door to the room must remain open at all times. There are two patient rooms for this procedure, and they are large private rooms.

- How many seizures do they try to get you to have? (I feel like it's going to take a lot to get one out of me. Even before all the med changes I was only having them say 1 time every 6 months.)

I think they hope to have at least 2 seizures to pin-point a seizure focus, but sometimes more are needed :( Very much depends on information gathered via the EEG and video from all the recordings.

- Does having seizures not scare you? I remember the feeling and I'm terrified of losing that control. I feel my head do this weird twitchy thing, my arm go up, then I completely black out

I was fearful of having a seizure, but just my luck I didn't have a significant one. The diagnosis of frontal lobe, however, was confirmed based on video recordings (it is often difficult to obtain an abnormal EEG from the frontal lobe area with surface electrodes).

Also note that you can have someone stay with you; cots are available. This may be preferred by the doctors as the spouse/parent/friend may be alert to a pre-seizure warning, aura, or an actual seizure when the patient is not. You will be given a button to press any time you notice an aura or seizure.

Feel free to ask me more questions if you would like!
 
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Thank you so much for all your answers! I'm incredibly nervous/scared to head into this thing and the day keeps getting moved around (I was supposed to go in today then now they're saying "in a day or two") which isn't helping my confidence in all of this.

I know you're being watched and all, but is it wise to be completely taken off all meds? Being on 3 myself, that seems.. drastic? I could see maybe taking away 1 of them or lowering them but I can't imagine not being on any.

In regards to the sleep deprivation, how do they do that exactly? I'm no good at really keeping myself up - tv or not. I think I'd fall asleep unintentionally.

Any advice on what I might expect when I first get there? I feel like it will be awkward almost but I tend to overthink things. Obviously they attach the electrodes but do you just lay in bed and start entertaining yourself or how does that all go? I know it may be different but I just need some sort of general idea on how this is going to go. I'm a planner and I like to be in control so this whole thing has just been..overwhelming to say the least.
 
Thank you so much for all your answers! I'm incredibly nervous/scared to head into this thing and the day keeps getting moved around (I was supposed to go in today then now they're saying "in a day or two") which isn't helping my confidence in all of this.
-This happened to me, too, and the tables were turned in the sense that I ended up being their 4 days longer than initially planned so someone else's stay was put off for a few more days lol. This happens for two main reasons: they need to stabilize someone before sending them home, or they are close to identifying the seizure focus and want to try to get another seizure.

I know you're being watched and all, but is it wise to be completely taken off all meds? Being on 3 myself, that seems.. drastic? I could see maybe taking away 1 of them or lowering them but I can't imagine not being on any.
-This all depends on the patient. In my case it seemed the medications weren't working well anyway.

In regards to the sleep deprivation, how do they do that exactly? I'm no good at really keeping myself up - tv or not. I think I'd fall asleep unintentionally.
-Lol: Don't worry - if the nurses see you fall asleep, they will be right in to wake you up very soon. Plus, the readings on the EEG show when someone is in a sleep state so that will send out an alert as well. You would be allowed caffeine to help yourself stay awake, loud music through earphones, plus the nursing staff is roaming around and you can get someone to come in and chat for a short while if you feel yourself getting too sleepy. Because I was in bed doing absolutely nothing (ie. no reason to be tired) staying up was not too difficult; the nights were just very long. The most difficult time was between 2 and 4 AM I found.

Any advice on what I might expect when I first get there? I feel like it will be awkward almost but I tend to overthink things. Obviously they attach the electrodes but do you just lay in bed and start entertaining yourself or how does that all go? I know it may be different but I just need some sort of general idea on how this is going to go. I'm a planner and I like to be in control so this whole thing has just been..overwhelming to say the least.
-First off you will be taken to your room and given some time to put your things away. Go to the bathroom and get all that sort of stuff done!! Order the tv and phone. Plan where you put things so that what you will want is within easy reach from bed. Then very soon you will meet the EEG tech for the day and he/she will wire you up. Then you will be told to get into bed (or at least lie back on the bed) and they put the rails up. And then, yes, you pretty much start entertaining yourself after that. In my case I had blood drawn, met about 3 nurses and 3 doctors, had to speak with the dietitian because of special dietary requirements . . . not much down-time. People watching is interesting, as your door will be open and you see everything that goes on in the halls. Remember you are in a neurology ward and, well, interesting things can go on day and night!
-Oh, and bring eye shades and earplugs :)

Ask more questions if you have any, but if not I look forward to hearing about the people you meet - the techs, doctors, nurses, cleaning staff, etc. (refer to the doctors by the first letter of their last name in the interest of confidentiality for them, eg. Dr. H., as I will know who you mean since none of their last names start with the same letter).
Keep me posted!
 
I'm really hoping I'm not there too much longer than a week. I can't really afford to, so here's hoping it all works out rather quickly!

I guess that's the confusion in my situation. Seeing as how I've been seizure-free for 2 years I like to think that they're working pretty well. Really all of this is because I want to get surgery. I'm by no means a candidate that needs help right away and I would expect to be put at the bottom of the list for such a thing if I did qualify, but my reason is that I don't want to be taking 11 pills a day for the rest of my life, and also my family doctor had in so many words told me I wouldn't be able to carry my own child. Or that it would be really dangerous to. I'm not sure I want children as I'm in no place to even consider it, but I'd like to at least know that if I decided I wanted to, I could.

"Because I was in bed doing absolutely nothing (ie. no reason to be tired) staying up was not too difficult; the nights were just very long." In response to this, that still wouldn't stop me. I like to think it's from all my pills (or I don't know what else it would be) but I feel like I'm constantly tired. No matter how much sleep I get I'm so tired and it sucks :(

Good to know! I'll make sure to bring a mask and earplugs.

As far as clothing goes, I know to bring button up/zipper things. BUT how many should I be bringing? My plan was literally to just wear sweatpants and a sweater everyday. Is that plausible?
 
I'm really hoping I'm not there too much longer than a week. I can't really afford to, so here's hoping it all works out rather quickly!
-I was there for 2 weeks, and until they get seizure activity they will allow someone to stay as long as 3 weeks. On the other hand, they have had people only need 3-4 days.

Really all of this is because I want to get surgery.
-This is the most frequent reason for doing the VEEG; the second is to confirm the presence of epilepsy


"Because I was in bed doing absolutely nothing (ie. no reason to be tired) staying up was not too difficult; the nights were just very long." In response to this, that still wouldn't stop me. I like to think it's from all my pills (or I don't know what else it would be) but I feel like I'm constantly tired. No matter how much sleep I get I'm so tired and it sucks :(
-being off my medication, which also made me sleepy, suddenly made me very awake, and I found it difficult to sleep. This may happen to you as well when some of the medication is withdrawn (if it is). You may want to have a friend or family member stay up with you on the night(s) you are sleep deprived to play games, etc.

Good to know! I'll make sure to bring a mask and earplugs.

As far as clothing goes, I know to bring button up/zipper things. BUT how many should I be bringing? My plan was literally to just wear sweatpants and a sweater everyday. Is that plausible?
-don't bother bringing your own clothes beyond underwear, as then you will just have to have your family going back and forth to do your laundry and bring fresh clothes. Just wear the 2-piece hospital pyjamas and you will get a clean pair everyday, or even twice a day if you are a candidate for riding the bike (which, by the way, can also be used to keep you awake when undergoing sleep deprivation). But if you really want your own clothes, you will be far too hot in a sweater, and make sure the sweat pants are not too thick.

-also bring a pair of slippers with a rubber or other non-stick sole for going back and forth to the bathroom. You may also want to bring your own pillow, although their pillows weren't too bad.
 
I'm hoping for the 3-4 days! Though granted I suppose that means quite a few back to back which would be.. unfortunate in ways.

Does it make me a bad person to think that if I DO get approved for surgery, I worry about my hair? Obviously the most important thing is getting it in the first place, but I think about them shaving a portion of my head. I'm an extremely insecure person and the type to hide behind my hair so it'll feel like a lot.

Maybe I'll have to convince someone to come stay with me those times then - that'd probably be helpful to stay awake

Thanks for the clothing advice! I feel like I haven't really been informed as to what I'm supposed to be doing with all this. It's just been like - Okay you'll be coming in soon.

When was it that you had yours done?
 
Don't get too far ahead with things by thinking about your hair being shaved :) Even at that they do not necessarily shave the whole head and remaining hair can be combed and tied to hide it, or as the person in the other room did she decided to get a wig.

I had mine done just over a year ago. Don't be afraid to phone the epilepsy nurse if you have specific questions related to medication stoppage in your particular case. If one of your regular neurologists is someone who works in that clinic, as was the case for me, she may be able to answer this for you.
 
Thank you so much for all the helpful information!

I just got a call from Dr. T and long story short, J was wrong for telling me 1 to 2 days so I'm a little frustrated/mad. Dr. T had explained that there were 2 people with a worse situation she wanted to get in first (which I completely 100% understand and am on board with), but I wish J hadn't told me 1-2 days. I've been an emotional wreck being so worried and now I'll have to feel it all over again in a months time :( Also, since I don't live terribly close to the hospital, I've felt bad having my dad be anxiously awaiting my call that we need to go and now it doesn't matter for another month.

Again, I understand, but I'm frustrated and wish there was maybe more communication between the two, but I can imagine how busy it all is.
 
Dr T is my doctor as well! How long have you been a patient of hers? FANTASTIC doctor in case you haven't seen her yet: empathetic, kind, a good listener and takes concerns seriously.

I had some frustrations with J as well and I completely understand what you are going through, but when I was in the SIU I developed a whole new respect for J and her amount of work and responsibilities, both for the SIU and outpatients. Our frustrations, though, just show the department could use another J, at least part-time.

Worrying is normal. But honestly, you feel so well taken care of when you are there that you soon realize that the worry and concern you had before-hand was more than needed :) You will have an IV block put into your wrist for injection of ativan/lorazepam should you have a seizure that goes on for too long.

Where do you live? I am right in Vancouver, so feel very fortunate to have quick access to the hospital and doctors if I need it.
 
I've actually seen Dr. T about 3 times. She's definitely a good listener and takes concerns seriously for sure. I found her a little bit.. I don't know if 'stiff' is the right word, but based on all the Dr's I've seen so far, that's nothing out of the ordinary.

To my surprise J did actually put my mind a little at ease (before I found out I wouldn't actually be going in today or tomorrow), so that was appreciated though I'm sure come the end of the month my mind will be all crazy again. She mentioned the IV block. Yuck. I have no problem getting needles, they don't hurt and that doesn't bug me, it's totally a mental thing. I hate the idea that something may like go into my body that isn't supposed to be there. I'm sure the logic is faulty in that, but that's all I can think about so it'll be a little difficult having it stuck in there the whole time haha.

I'm actually in Langley so it's a bit of a drive but not terribly far. That's part of the reason why I don't really want anyone to come visit - it's quite out of the way (though obviously could be worse)
 
I'm in New Westminster - I often just say Vancouver because I find those who are not from the lower mainland haven't heard of New West lol. I was alone as well when I was in the SIU although my brother visited a couple of times, a neighbour came once and a group of friends another time. Otherwise I was left to entertain myself.

I took a rug-hooking kit with me. This isn't a usual hobby for me, but it is easy to do and you can see your progress fairly quickly. Something about the mindlessness of doing something so repetitious was almost relaxing. It was very difficult to read because of so many distractions whether they were in my room or just attention-getting things going on in the hall. I would suggest loading up your cell phone with a good data plan (even if you just added a couple of weeks of extra data) so you can access your network and play games.
 
Haha yeah same reason I never say Langley lol. If I'm being honest, I don't want people there because I'm embarrassed. My whole family has seen me have one except for my boyfriend. They all know the situation and none of them act weird about it, but I just don't want anyone to see me seizing if I can avoid it.

Maybe that's something I should look for then! I was planning on reading for one of my classes so that's too bad..may bring it just in case though
 
Hi there,

So I just finished my time at the Seizure Investigation Unit and now find myself with a problem. So for 7 days I was completely off all my medications, and then the night before I was leaving they gave all of them back to me at once. Now, 2 days later, I am extremely dizzy. Walking is a challenge without tripping over myself. Could this be because of the medicine? I tried calling the office but my Dr is at a conference and won't be back until Monday. Did anyone else have this problem?

Thank you!

- Stephanie
 
Did they ramp you back up to the full doses all at once? If so, that could definitely make you dizzy. (Did you experience dizziness the first time you went on any of the meds?) Hopefully it's just a temporary side effect, but you should call your neuro's office to doublecheck the ramp-up procedure and let them know how you are feeling -- there should be someone they can refer you to if your doctor is unavailable.
 
Yep they put me back on all at once. I never noticed any dizziness when I first went on the meds. I called them but the Dr's are all at some conference for this upcoming week, so I ended up seeing my regular GP and she seems to think it's Vertigo from the adjustment of all the pills and getting back to a regular sleep pattern. It's an awful feeling, I can tell you that much.
 
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