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Does this sound familiar to anyone? PLEASE HELP!!!

Hello everyone... My name is Rob, and I'm 28 years old. I've been having complex partial seizures for a few years now, which at first were thought to be panic attacks and no big deal, and I had my first tonic clonic seizure and was diagnosed with epilepsy in September, 2001. This happened while I was stopped at a red light, behind the wheel of my car, which caused me to roll into a telephone pole and hit my head. ( I of course have no memory of this... It's what the person who was next to me told the police and paramedics). I only remember waking up strapped to a gurney, an oxygen mask on my face, two paramedics staring over me and mumbling, A LOT of noise, and being scared out of my mind. When I finally calmed down and snapped out of it, and they told me what happened, I didn't believe them. I thought I was having a nightmare. If it was a bad dream, I still haven't woken up. This is where I'm hoping to find some help... Since that day, I've had a bout of seizures, (mostly complex partial: only once in a while progressing to grand mal), strike me each and every month without fail. OK- At first, when this all started before the car accident, I'd experience the following symptoms once in a while. I'd usually wake up feeling very tired on that day, and once in a while I'd just get this rush of fear sweeping over me. My hair would stand up, I'd get the goosebumps, I'd get the chills and get hot at the same time, and I'd get a very strange feeling, (which I was later able to realize as deja-vu). I'd usually sleep the day away, and I'd wake up feeling great the next day. It didn't happen on any pattern, or too often, so it was really no big deal. I guess I thought it was the stress of everyday life getting to me. Since I had the first "real" seizure in Sept. 2001 though, the symptoms have gotten worse and worse, and it happens more and more frequently, until this point where I'm finding it difficult to face reality each day. First, I was given a catscan and an eeg, (and a bit later, an mri), where nothing strange was found. Last march I stayed in the hospital for 7 days for long term video eeg monitering, where I did have a seizure, and I was told that they couldn't pinpoint the location of the origin. I've been on a few medications, Phenytoin and Depakote, which I couldn't keep in my bloodstream, (even at the maximum dosages), and did nothing for me. Now I'm on 3000mg of Keppra each day, and I'm still experiencing crippling seizures, as well as a slew of side effects. I apologize for this being so long, and I appreciate anyone taking the time to read it and respond. I feel like I need to give as much detail as possible, and I don't know where else to turn. I'm VERY scared and I feel VERY alone. So, since 2001, I've had seizures of varying severity, and with varying fore and after effects every single month. Sometimes it appears to be happening on a time scale or schedule, and sometimes it jumps out of the shadows and sneaks up on me when I'm not expecting it. Either way, this is usually how it goes: I'll usually start having trouble falling and staying asleep a few days beforehand, as well as rise very early, (5:00 am!!!). I'm always overtired, but sleep does not come easy. I notice, (and my wonderful girlfriend REALLY notices), a change in my mood, and not a pleasant one. I start feeling very dark, gloomy, depressed, and nervous. I'm often overly irritable, and just plain grumpy. I become extremely emotional, and sometimes cry at things that wouldn't make me flinch otherwise. Then, the seizures hit... It's been happening in the middle of the night and early in the morning a lot lately, so I'll explain that first. When it does happen at these times, I have no memory of it. My girlfriend tells me that I wake her up usually, and she can tell right away that it's happening. I've got the old "deer in the headlights" look on my face, and I usually run out of the room. I've gone and stared out the front window, started going through things like I'm looking for something, and even ran out into the driveway in my underwear and tried to climb into my girlfriend's car. I'm usually mumbling, drooling, smacking my lips, and talking nonsense. I ask my girlfriend ridiculous questions, and say even more ridiculous things to her. Then, I usually fall back asleep until the next one hits. This usually happens 2 or 3 times before I wake up for the day. I also usually have 2 to 4 while I'm awake that day too. Sometimes I can feel those coming on, and if I remember anything it's that: the first few seconds of the aura. Those are just, I get the chills, I sweat profusely, I get the spacy deja-vu feeling, and I get the taste and smell of salt in my mouth and nose. That's all I ever remember. My girlfriend and my ex-coworkers tell me that I often would let them know that it's about to happen. They say that they can see my goosebumps, they can see the sweat pouring off of me, and they can see th change in my face. Now, as far as the seizures that I have when I'm awake... This is the worst part. I've lost my job and humilliated myself more times than I can tell you. I worked and had a very supportive boss up until September of this year. Why did I lose my job? Because besides the fact that I had to call in sick for a week at a time each month, I kept on having seizures at work. I did things during them like bite my tounge and spit blood all over the wall, floor, and desk, almost beat up a 70 year old man for looking at me, run off for 10 minutes and come back with no shirt on, tried to kiss my boss, screamed gibberish and really nasty things at the people around me, and so on. My boss had to let me go, as I became a danger to myself and everyone else around me, a liability. Since then, I've been at home. I continue to have the seizures, except now my girlfriend and my dog are the only ones that feel the wrath. I've even gotten violent with them during my seizures. After the brunt of the seizures is over, I feel very powerful after effects for up to ten days. First and foremost, my head is usually pounding with pain for a few days. My body and mind feel like they've been in a trainwreck. At first, I have no urge to eat and my senses of taste and smell are pretty much non-existent. As the days go by, I do get hungry and my senses do ccome back to me, but they are not at all normal. Everything tastes and smells awful to me. I don't know how to put the sensation into words, but my senses are way off. I generally lose 10-15 lbs. each time that it happens, in just a matter of days due to my inability to eat. I also feel such a strange, hazy, fog. I'm so depressed and all that I can think about are difficult things. I usually feel like I'm dreaming, or I'm disconnected from reality, or filled with some strange darkness. It's very hard to put any of these feelings into words so that someone else can understand them. For the 7-10 days after the seizures, I'm exhausted, but I can't sleep. I can't fall asleep at nigt, I can't stay asleep once I do, and I'm wide awake way before the sun comes up. I can't fall asleep for a nap either. These symptoms slowly subside, until I feel ok again, but knowing that I've only got 2-3 weeks before it hits again, (if I'm lucky). I remember almost nothing of these days, even the recovery time. Now, I'm on this keppra, and I've lost about 15 lbs. since I started. I only weighrd 150 lbs. to begin with! Add that to the 10-15 that I lose from the seizures, and you can imagine what I look like. People have even been asking me if I've lost weight, and telling me that I need to eat. I've noticed since changing to Keppra, that I don't feel nearly as hungry nearly as often, and that I can only eat a certain amount, (smaller portions than before), at meals. I've also been VERY depressed... I don't know if it's just the reality of having this disease, not being able to drive, not having a job, not having ANY money, waiting and waiting on a disability claim, being afraid of leaving the house because I may have a seizure (and losing most of my friends because of that), being afraid and embarassed of what I might do during my next bout of seizures, etc., or if it's this damn medicine. I really feel that in the past few months, everyday life has become very tough for me to deal with, much less my real problems. I've even been at peace with the idea of ending my own life to stop the pain, and I've always had a healthy fear of death. My girlfriend says that she's watched me sink deeper into this funk over the past few months also, and I've been on the Keppra for a little over two months now. I just feel at my lowest, loneliest point right now. I am going to see my specialist on 1/21/04, with the past six months' activities recorded in a journal, numerous seizures captured on audio tape, and a girlfriend who wants to tell him herself what she's seen me turn into. Does anyone else here share any of these experiences? Does anyone share my symptoms, or take Keppra and feel side effects? Is yor story similar to mine? How do you cope? what have you been told by your doctors? What can I expect, and what can I hope for? What's happening to you, and what's going to happen to me? Can anyone give any advice to my beautiful girlfriend, who is now my provider, babysitter, driver, nurse, and bodygaurd? Can anybody help me? I will be checking back often, and I really appreciate any effort to help. Thank you.

Comments

RE: Does this sound familiar to anyone? PLEASE HELP!!!

Well, I just wanted to reply and give you some support. My son has E and I won't use Keppra, although it has been recommended, because of the behaviorial side effects. I imagine it could do the same in adults. However, there has been so much good press on the stuff lately, the docs think it is the next best thing since sliced bread. But one thing is obvious, it's not working... is it? I would look over your options when you go to the doctor, it seems as if you have given it long enough. In the meantime, I have heard that adding B6 to keppra can help with the side effects. You have to be careful with the dose of that, not too much, so you would need to ask the doctor about that too.

RE: Does this sound familiar to anyone? PLEASE HELP!!!

Hi Rob,Yes, I can relate. I had complex partial seizures misdiagnosed as panic attacks for 5 years before my first tonic-clonic (at age 25). Boy, was that a shock! I woke to see 3 firemen standing in my bedroom, next to my crying husband. I sat up with a scream, and promptly fell back into bed to fall asleep again. They immediately urged me to wake up and literally pulled me out of bed. At the hospital, they did blood tests, a CAT scan, but couldn't find anything. I was scheduled for an EEG in a couple of days. I was absolutely blown away, I couldn't believe that I'd had a seizure (it took a few more weeks to realize that my "panic attacks" were actually complex partials)! After my EEG, my doctor called (which happened to be my 26th birthday) to tell me that I had epilepsy and that I needed to stop driving immediately. I no longer had a driver's license. I had stopped working a year before, due to my "panic attacks", I was terrified. The one thing I did do was go to school. Dilantin didn't work for me. A combo of Dilantin and Depakote did the trick for a couple of years, until long-term side effects popped up. Dilantin made me lose feeling in my fingers and toes. I told my neurologist, but he didn't believe me. He said that only 1% of people on Dilantin experience this side effect, and that's usually after 50 years of being on the med...blah, blah, blah. After the sensation loss travelled to my entire feet, I demanded to be taken off the Dilantin. The bozo neurologist said that he was sure that wasn't the cause, but OKAY. Within a few weeks, I regained feeling. Imagine that! It wasn't until later that I found out if I weren't taken off the med in time, the loss of sensation would have been permanent! (what a jerk!) I stayed on just Depakote for a while, and felt pretty good. After a routine bloodtest, during senior college finals, my neurologist calls to tell me to get off Depakote immediately (due to a super-low WBC count). I told him that I felt fine and asked if we could wait a week (until my finals were over) since switching meds is very tough. He insisted that I switch meds now, and said that I didn't have a choice. "Your finals aren't as important as your life." Finals were absolute he** for me, I had to tell my professors what was happening so I could take the tests once I got over the switch. Up until that point, no one at college knew that I had epilepsy. I didn't want them to know. I didn't want people to look down upon me, and think that I was some sort of dummy or freak. Thankfully, my professors were very understanding and so were the few friends I shared with. I switched to phenobarbital, and have been on it ever since (3-4 years now). I've done pretty well on this med, with a few bumps here and there. In the last 2 years, I've had several seizures (a couple of which progressed to tonic-clonic) due to major changes in my life. Sleep deprivation and stress bring on seizures. So, after I had a baby, the physical stress brought on a few in the hospital and I've since had a few more here and there (when dealing with colic, nursing, and now toddler-hood). Thankfully, I have a new neurologist who is willing to work with me. He listens to what I have to say, throws in his opinion, and lets me make the final judgement. He didn't report my seizures to DMV (my other neurologist most certainly would have!) because of my tendency to have them in bed, where I'm not a danger to anyone. I did go on Keppra for 2 months, after I stopped nursing, due to a bad outbreak of hives. We thought that the hives might have been caused by the phenobarbital. The hives continued, and I had a couple of seizures. I decided to switch back to phenobarbital, where I had better seizure control and didn't have to worry about behavioral changes like you've experienced. I would recommend calling your doctor, ASAP, and telling him/her what you are going through. If your seizures weren't like this before, chances are good it's a side effect of the Keppra (and you want to get off it now). If you take one thing from my story, let it be this: get a good neurologist. Someone who will listen to you. I wish you the best of luck. I know it isn't easy. Thankfully, your girlfriend is understanding and is willing to help you through this. My husband has been there with me from the very beginning (13 years ago, when I was 20 and had my first "panic attack"). He's been wonderful, very supportive, and that's helped more than anything else. Someone who I can share my fears with...what a relief! Other coping mechanisms include learning all that I can about seizure disorders and various available treatments. Learning makes me feel strong, and empowered, like I'm not a dummy. And that makes me feel better about myself and my condition. You may never have total seizure control...you never know. Your body changes throughout the years, and your need for this or that med goes up and down. This is why it's so important to have a a neurologist who will work with you, one who respects you enough to listen to you and let you make some decisions on your care. Good luck! Heather

RE: Does this sound familiar to anyone? PLEASE HELP!!!

It sounds to me like you may need a new specialist! If your appointment today doesn't get you a change of medication, I think you should immediately seek another neuro; prefereably someone with a lot of experience in Epilepsy. I have had two Docs in two days tell me two entirely different things regarding my case. I will be restored to driving soon and are not as affected as you are, but have tried dilantin and was switched to Tegretol xr. Believe me that "I wanna new Drug" song is my theme! The differences are significant and there are a dozen different drugs available for you. Try for some different options. I wish you luck with your doc, but if he doesn't take action to make you feel better, seek another practicioner! This is definately only a practice and some docs are better than others!

RE: Does this sound familiar to anyone? PLEASE HELP!!!

Well, thanks for the support. I saw my neurologist yesterday and he thought it best to take me off of the Keppra right away. He said the same thing that I've been thinking, which is, " Well, it's obviously not working, seeing as you're still having insane seizures, and with all of these side effects, it's just not worth it ". So now, he's weaning me off of the Keppra and slowly replacing it with Trileptal. He also mentioned that since we've already tried so many medications, I may want to start considering surgery. Now that, scares me to death. I just hate the idea of having my skull cut open, and having somebody fidgeting around in there. UUUGGGHHH!!! That's really terrifying to me. I have done some reading about the subject, and I watched a TV show on the Discovery channel about it. The doctor told me also that there are no gaurantees, and there's a chance that I could end up worse than I started. How do I weigh that out? Even the testing that I would have to undergo beforehand, (which I understand involves removing a piece of the skull, attaching a grid of electrodes directly on the brain, and inducing seizures to pinpoint the location of the origin), scares me beyond imagination. Much less the surgery after that? OK- Here are two new questions... Does anyone have any experience with Trileptal, and has anyone faced, (or had to consider facing), surgery? Ironically, I also forgot... A third question- Does anyone else suffer from severe memory loss? I don't just mean during seizures, but short and long term memory loss due to epilepsy? A lot of my life has become a blur...

RE: Does this sound familiar to anyone? PLEASE HELP!!!

I hope you will read the information on epilepsy.com about Trileptal and epilepsy surgery. For information on Trileptal, start at http://www.epilepsy.com/medications/i_trileptal_intro.html and look at the various topics listed in the right-hand column. To read about Surgery, click on Treatment in the left-hand column of the epilepsy.com homepage. You also may want to use Search to find more pages of information, including accounts by people who have had epilepsy surgery and tell about their experiences. Most of them are now doing very well. Surgical techniques are constantly improving and trends are moving towards less invasive evaluation techniques.Many people with epilepsy do experience memory loss. Often it will improve if you stop having seizures, but the sooner that happens, the better the outlook, in general. You can read more on epilepsy.com about memory loss and other effects of seizures and medications.

RE: I have been diagnosed a week ago

I have gone to every web site i can find to learn all that I can. But I haven't even started on meds yet. Tomorrow I have an appt with my doctor about my eeg results. I had a grand mol seizure three weeks ago. I have had them for years but blew them off as, oh i had too much to drink, or the shrimp cocktail I ate was bad and caused me to pass out. But now that I am educated on Epilepsy a little more I realize I have had seizures since I was about 15, and they have progressively gotten worse. I am 39 on Sat. I am scared and anxious about my appt tomorrow but after reading your story, I need to start researching the drugs used for treatment and all the side effects. If your not happy with the drugs they are giving you, keep going back until they get it right. Too many people live normal lives with Epilepsy and you shouldn't be left out. I hope your appt. you mentioned you had brought about some positive changes.