General questions. still new to this, so I post a lot

[cpuerini]

I'm on a lot, only because after my first seizure I went into status for about a day, and my seizures were uncontrolled for around a week. I had countless TCs and absence and partials, was sedated, and was finally only able to get the seizures under control with these four meds- dilantin, clonazepam, keppra, and vimpat. I saw many neurologists in the hospital, then one in the clinic, so I had many opinions. I ended up seeing a private neurologist, who knew this was a large amount of medications, but wants to get my seizures under control first. He started me on lamictal because he wants to get me off the dilantin, but I'm still having break through seizures. He wants to get these under control before backing me out of anything...

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[qtowngirl]

First off... so many people on here seem so positive, how long did it take you to get there? It seems like every time I start to feel good and like things are looking up, I have another unexplained seizure and it brings me right back down. My meds aren't all under control yet, and from what I hear it takes a bit, but I'm still really down. I'm not working, not I'm school, can't drive... and I was fiercely independent before this.!

it took years, as it does with many of those diagnosed, or, having seizures for years without diagnosis or a misdiagnosis. from the time i finally found out i had epilepsy to the time i started being positive? about nine years. went from a nine-year misdiagnosis to instant grand mals and within the following nine after the proper diagnosis there was no positivity.
2011- found out i had a lesion feb. 14, joined cwe june 26, and i met my epileptologist and heard 'surgery' august 11.
after that it became very real where i was with my seizures, and to get through to the positive side i had friends, cwe, and myself. i'll say now that being here was the best of the three - people giving support in this fashion helps calm fears, supports reality, and most of all helps us change perception somewhat of the life we lead. there is a positive side out there, and alot of it is the collective here

Third, I know I have tonic clonics-those are fairly obvious. But another type of seizure I've had is where I can't speak. I feel fine in my mind, but I can't send the thoughts to my mouth and make them come out. Are those partials?

IF you feel fine in your mind (know where you are, what people are saying, and that you're having a seizure) - but there seems to be a barrier between thoughts and vocalizing them - this is most likely a simple partial. they were a regular part of my life for 19.5 years, and i've researched them endlessly, if you'd like to read for more clarification: http://www.coping-with-epilepsy.com/forums/f22/invaluable-article-simple-partials-auras-13324/

Last.. do seizures ever just become.. normal? The most I've had was two tonic clonics in one night in one week, then this week I couldn't speak two mornings in a row. My neurologist wants to get my seizures more under control, but I'm wondering if some people just end up living like this?

the 'become normal' feeling depends on the person. some of us think/say we're a normal person who has epilepsy, others don't feel normal but constantly seek a way to get there, and others just can't find a way regardless. there is also a vast difference in lives and effects of seizures that will determine which one.
cause of the seizures (if there is one), types of seizures, the level of affect it has on your daily life, how long you've had it, do you have support, do you have a good neuro team, how is your workplace treating you, is it also a financial burden, is it affecting relationships, is there side effects from meds...... there are so many categories that have much determination on how we mentally feel.

the majority of us will tell you that at the end of the day... the one piece that will depict it most... is ourselves. the self-strength gained with having epilepsy is among the top of any disease. the fact that a seizure can hit at any time, sometimes no matter how careful we are, and that the possibility is there of going to bed and not waking up... turns us into (by choice and/or forced) the most amazing people when it comes to what we can handle. yes it usually does take years... but you'll get there.
as long as you do things to the best abilities you have (don't miss meds, don't party, walk away from high-stress situations, go to all doc appts. etc.)... you can live a fairly normal life. and use us!!!!!!!!
the spectrum is a to z on here regarding types and effects of epilepsy, and learning about others does teach us about ourselves and what we'd like to accomplish.
i've had e since i was 15 (now 35), yet gradded before my class, have owned my own company 17 years, owned four houses, am raising stepkids... all added to the fact that i've had many grand mals, lost my license 7 times, and just had brain surgery.
i did the best i could through life by not letting it 'define' me, and through all the devastation i still feel and say i am a normal person.
trust me sweetie, you'll learn at some point just how creative and admired, loving and supportive you can be. self-trust is key... and from reading your stuff i can already tell you you're gonna do great and feel whole again... just give it a bit of time

 

[arnie]

HI urza, I just have a couple of quick responses for you. As for staying positive, which I am at least 85% of the time, part of it is just my nature, but a large part is because of the work I used to do. I worked at Child Protective Services for a couple of years and saw a lot of really horrible stuff that sort of tended to make my problems fade a little in comparison. Then, for about 14 years I worked as a social worker at a kidney dialysis center. I don't know if you know much about chronic kidney failure, but it's not a pretty thing, even in the best of circumstances. I would not trade my level of epilepsy for kidney failure in a million years. I also try to do other things that I enjoy, like playing musical instruments, alone and in groups, acting in a community theater, spending time with my wife, etc. Fortunately my independence really hasn't been compromised, but I can relate to the lots of seizures because I have probably 300 partials a year, and have had since 1982, and possibly long before that, but undiagnosed. I would encourage you to look into vns as an option. I'm 55 and I learned recently that there are not only long-term cumulative effects of partial szs and meds (which I pretty much knew) but that aed side-effects can crop up after years and years of use. VNS may not eliminate meds but it can help you cut down on them. VNS is also indicated for the treatment of depression, so it can help with some of that. It works differently for everyone, which is no surprise, but you should look into it, and read my thread called "my vns experience" if you want to see how it's been working for me since I had it activated on Jan. 20 of this year. Keep on keepin' on!

 

[qtowngirl]

yes arn great timing to reply here - cpuerini arn and i have collectively determined that we're the simple partial team - both have hundreds a year and have for what is together 50 years. ask us anything you want about those feelings you're having, and know that you have two people right here who greatly understand what you're going through.
next time you see your neuro ask about the s.p's and explain to a tee what it feels like, chances are pretty good this will be the case. we're here to help

 

[Cint]

Then, for about 14 years I worked as a social worker at a kidney dialysis center. I don't know if you know much about chronic kidney failure, but it's not a pretty thing, even in the best of circumstances. I would not trade my level of epilepsy for kidney failure in a million years. ............

Fortunately my independence really hasn't been compromised, but I can relate to the lots of seizures because I have probably 300 partials a year, and have had since 1982, and possibly long before that, but undiagnosed. I would encourage you to look into vns as an option......
....
....... but that aed side-effects can crop up after years and years of use. VNS may not eliminate meds but it can help you cut down on them. VNS is also indicated for the treatment of depression, so it can help with some of that.

Hey Arnie,

I know this was directed to urza, but I had to respond after reading everyone's posts. As you and many others on CWE know, I too, had brain surgery which failed, been on many meds and now have the VNS for seizures. I had my first VNS in 1998. It does seem to help with my depression, also. It hasn't stopped my seizures, but it has decreased them. And they are only SP or CP now, no TCs anymore. And I had numerous TC seizures... lost count of how many after brain surgery and many injuries from them.

But the real reason for my posting is that you said you wouldn't trade your level of epilepsy for kidney failure. I wouldn't either, except that I have Type 1 diabetes also. And my father has kidney failure and goes to dialysis 3 days a week. I've gone to the dialysis center with my parents on several occasion and have seen others, younger than myself even, who also have Type 1 Diabetes and are having to do dialysis already. I've also seen those who've lost limbs and were blind, due to diabetes at this dialysis center. My father is there because he had a stroke 15 years ago, and then suffered kidney failure. And no, it isn't pretty. But neither is a TC seizure.

Things are not always as they seem......

 

[cpuerini]

I'm overwhelmed by the responses, and really appreciate them. You've all made me very interested in the VNS, and since its only been fine months I'm sure my neurologist would advise me to give it more time, but I'm definitely going to question about it seeing I'm on so many medications and I actually read that makes for a higher risk of SUDEP :/

I'm on 300 mgs of lamictal, and that has seemed to help with my depression, and clonazepam seems to have helped with anxiety that I didn't even really know I had. I wouldn't say I was very depressed before, but I've definitely felt more do since being diagnosed, and the lamictal has made my mood more stable.

It's really good to hear about everyone having normal lives, sometimes I get into thoughts that my life is over

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[Cint]

I'm on 300 mgs of lamictal, and that has seemed to help with my depression, and clonazepam seems to have helped with anxiety that I didn't even really know I had. I wouldn't say I was very depressed before, but I've definitely felt more do since being diagnosed, and the lamictal has made my mood more stable.

It's really good to hear about everyone having normal lives, sometimes I get into thoughts that my life is over

Lamictal is also used as a mood stabilizer, as are some of the AEDs. If you have Temporal Lobe Epilepsy, mood swings/anxiety often times do go hand in hand.

http://www.epilepsy.com/epilepsy/behavior_personalitychanges
http://www.epilepsy.com/epilepsy/mood_anxiety

 

[cpuerini]

I do have temporal lobe epilepsy, and had also read that about mood swings and anxiety. I'll check out that link, thanks

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[Zolt]

Hey cpuerini,

1) "so many people on here seem so positive"
a) Once you find a way to control your E, through meds, yoga or biofeeback, or whatever, that is half the battle to happiness.

b) Happiness is a state of mind, i'm normally happy until something comes along to change that. Hmm, that sounds like one of the physics laws about motion. Reduction of stress is critical. Meaning don't worry to much, things have a way of working out normally and stress will not help.

c) Sleep one of the other critical things in order to be happy. Normally i get my eight hrs, from 10pm till 6am. Plus it's so refreshing when starting the day out fresh and ready to go, like a feeling of peace where everything is ok with the world. I know we can't all do that, but one must make an effort to get into a good sleeping habit. i hated going to sleep, but knowing the benefits of a good nights sleep helps with that.

d) Plus we have a good stash of drugs to keep us happy. Doh!@#$ At least some are. I don't recommend taking more then 1 tablet at a time, because if u take 4 all at once, who know which one might make you terrible sick or which one actually works. Lot of trial and error on this part. Luckily my Neuro is good with that idea, lets try them one at a time and then go on the drug cocktail mixes.

2) "Second, all but one of my seizures have been while I was sleeping, or right after waking up."

a) Mine were all over the place, morning noon and night, until i started on this new med, Gabapentin, 2 yrs ago. With this new med i have been able to get my seizure to happen in the mornings. 20 out of my last 22 seizure have been right after i wake, within the first hour. So I can't stop my seizures, but at least i can schedule them for the mornings now. This has to do with, someone mentioned that the bran waves are still not as active at that period when one wakes. So that plus the fact that Gabapentin only works for 6hrs, after i take my last pill at 7pm, by the time i wake, i do not have the medicine in me. So after i wake i do not take my pills till 1hr after waking. This will cause my seizures to happen in the mornings. And i am elated for that. This gives me some control of my seizures. Rather get though with it early in the morning then to be in a meeting or driving while it happens in the day.

3) "The most I've had was two tonic clonics in one night in one week, then this week I couldn't speak two mornings in a row"

a) How long could you not talk for? I'm normally alone when my seizures happen, but once a while back, my new boss came to visit the remote site I take care of and i was showing him around and talking about the equipment, well he asked me a question and when i went to answer him, it felt like my mouth was filled with 3-4 packs of bubble gum. I just couldn't talk. I was making the movements in my mouth, but nothing came out. It happened at the worst opportune time. Well luckily my chair was near by, so i sat down and my arms started to flail, not the morning type i'm used to, but a smaller flail. And then it all stop and I returned back to normal. That was the one time i noticed my speech being effected. I still have to try to speak when my auras come, to see if that is always the case. But not sure, because when a seizure comes, it's like the devil coming for a visit. Sometimes he comes with weapons to beat us up. Doh#@!$ I know, bad analogy. So it's hard to think when a seizure starts out, because it's like panic mode. Oh no, not this again. I regularly have seizures like once a month, but lately it's been like once every 2 months.

The best way i deal with it is like my boss once said, "Once we get to that bridge, we will cross it then." Meaning if it's not happening now, don't worry about it. Just go on living your life, to the best you can. I'm not worried about Sudden Unexplained Death type seizure, because when i went in to have my bra in tumor removed, one of my motto then was, "what will be will be" And if God wanted me to die then i will, otherwise i'd come out of it ok. That's another reason i can claim to be happy, few have survived a brain tumor as big as i had, the size of a baseball. But then again, i'm glad few have ever had to deal with something like that. I was 38 when the tumor was removed and now i'm 46, it left me with reoccurring seizures, but i'm still happy.

Cheers,
Zolt

iano: op:

 

[kirsten]

Lindsay, I'm sorry for your troubles also I too feel like I shouldn't feel so bad when other people have it much worse, but also can't help but have some days where I have huge crying fits... I'm trying to tell myself that I could have it much worse, and this should just really show me not to take life for granted..

There's a lot I want to say about your post but I wanted to address this first because I was thinking about this very thing last night. Try this thought experiment: Here is person A, who who has ten tonic clonics a day. (a fake person I made up.) She gets so many seizure injuries she has to go to the ER or the doctor or the dentist three or more times a week to deal with them. She can't work and all her friends and family have abandoned her.

Now here's person B who's dying of the most painful cancer there is. Person B tells person A to quit moaning because things could be much worse--they could be as bad as person B's life.

Now here's person C, a five year old child who has 3rd stage cancer. She's going to have this cancer battle another six times in her life. She tells person B to quit moaning because things could be much worse, that at least person B only got cancer at an old age.

Now here's person D. He's had a severe form of cerebral palsy all his life. He can't feed himself, walk, write, type, work. He's trapped inside his body and has been for 70 years. He tells person C things could be much worse. That at least person C is only sick some of the time.

Well, I could go on with this forever. There is always a 'worse off' situation and it has no bearing on our personal experiences. It doesn't make them easier. It doesn't give us coping skills to know that there are people who are worse off than we are. And in any case, let's take a look at person D: he managed to find true love, and happiness, and career success despite his body. But person A never managed to find any of those things. So you tell me: who is worse off? We can't really tell. And there's no reason to anyway. All our experiences are relevant. Our responses to them are appropriate. We deserve to feel what ever we feel about them.

 

[kirsten]

First off... so many people on here seem so positive, how long did it take you to get there? It seems like every time I start to feel good and like things are looking up, I have another unexplained seizure and it brings me right back down.


Last.. do seizures ever just become.. normal?

When I read these, I smiled because after 20 years of epilepsy, you can still occasionally find me whimpering for up to an hour when my seizures get out of control. In fact, in some ways, the earlier days after diagnosis were easier (in most ways they were harder but in some ways easier) in that I didn't really know what was going on. I knew they had told me I had epilepsy but I wasn't too clued up about what that would mean for my future. I was able to live one day at a time. These days I find that more difficult because I now know that a seizure, for me, is seldom just a seizure. It usually means I'm going down and I will soon find myself at the bottom of a hole. BUT the difference is that after I've had a 'crying fit' for an hour, I can still laugh, and you will find me here a minute later jabbering away as if life is wonderful, which it isn't. Not for me, not now. I've learned to find the joy in life, but that doesn't mean there isn't misery.

Seizures have never become normal for me. What can be normal about suddenly finding an injury has appeared out of nowhere when all I was doing was making breakfast? What can be normal about waking up to find myself wondering around the streets blocks away from my home? What can be normal about broken cheekbones, broken teeth, a stitched up tongue, and having to eat fluids for a month? What's changed, again, is that I can laugh where before I couldn't. When I have that X Ray or those stitches, the doctors can tell a joke and I can laugh about it. Today epilepsy doesn't completely take away my ability to appreciate life. It only erodes it a little. Okay, sometimes a lot. But I generally know that when I'm under water I am completely able to rise to the top for a breather (a laugh break, a dance break, a great telephone conversation, a good meal...what ever) at any point. I no longer have to drown.

 

[kaelieh]

Migraines and epilepsy have rates of comorbidity, but doctors haven't quite figured out how exactly they're related. Someone with epilepsy is more likely to have migraines than someone in the general population but someone with migraines isn't necessarily more likely to have epilepsy. Now, someone with migraines with aura is at a higher risk for stroke.

As far as college goes, I switched majors so many times I probably couldn't even count them all. I even ended up graduating in philosophy. I went back to get a degree in education, had to take a medical leave of absence for mental health reasons and was just working full time, did that for about a year, then got fed up with being "unqualified" and decided to update my financial education background and then decided to what I really wanted to do was study math and than I got kicked in the butt by migraines.

I had stepped down from a full time position to part time when I decided to switch from studying finance and accounting to mathematics because I needed the extra study time and by switching departments at the casino I could actually make a little more money working part time in table games than I was working full time in another department.

i think most people with epilepsy do actually work full time. I had actually stepped down to part time for school, not my epilepsy, but after I had to leave school for the migraines and then all the seizures it's been nice to only be able to be part-time. I'll probably return to full-time in the fall, more for the health insurance than anything else.

My cousin with epilepsy actually has a pretty decent corporate career. She's gotten promoted so many times I've lost track of her job title.. her epilepsy is actually difficult to control but she's had a couple of year periods were she was seizure free. I think for her sine it's been something she's been dealing with since she's a kid, it's something she's never let stop her from doing anything. Her first seizure she was chewing gum while she was pitching during a softball game and almost died, she was on a ventilator for three days in a coma, they said if her dad hadn't been a doctor and been at the softball game there's no way she would have made it. I think after that, she kind of thought it couldn't really get any worse so she never let it keep her from doing anything.

After I first got diagnosed my family definitely hovered around too much and never left me alone. I swear it felt like it I wasn't alone until I'd been seizure free for awhile. Even now that I'm an adult, I pay my own bills, haven't lived with either of my parents in awhile, and I could have easily just not told them what's up, I told my mom that I was having seizures again just so that she would know and I'm getting text messages at least every other day.. You're family will learn to lighten up a bit as they get used to it, but at least take comfort in this, it's only because they care. It's seriously annoying, but it's because they care. They best thing you can do it try talking to them about it and seeing if yall can agree on some new boundaries.

 

[kirsten]

For me, trying to stay employed full time was an exercise in futility that left me feeling I was between a rock and a hard place. I felt discouraged all the time and thought there was no way for me to make a living. I was distraught. I still work full time, although full time workers think I work half time because my schedule is different from theirs. I took a leap and started working for myself and that has made all the difference in the world. I think, for some of us, satisfying someone else in a work situation is impossible BUT for many of us, through self employment we can still satisfy ourselves and we can still earn what we need to make a living and stay independent. For those of us who seem to be facing disability checks, there is little to lose in taking a risk and trying for self employment. It was always the, "Well, what do I have to lose?" in my head that made bigger things possible. And massive amounts of determination.

 

[Krista2882]

Hi cpuerini!
Everyone's experiences with epilepsy are different, but here is my personal experience based on your questions...
(sorry, this will be long)
I've had epilepsy since I was 11 or 12, but I wasn't diagnosed until I was in high school... maybe 16 or so. I get simple-partial motor seizures that originate in my frontal lobe. There was a point in time that they got really intense. I usually get a shaking or "crawling" feeling in my muscles on the right side of the body. Minor ones start in my leg and foot and stay there until they stop. When they get more intense they travel up the whole right side of my body and I even get the sensation in the muscle that moves my ear. I have a syndrome, I don't remember what it's called, but it's basically the simple-partial version of status epilepticus so my seizures can be continuous for hours at a time.
I was diagnosed with epilepsy in high school, but the doctor was basically like, "Ok, you have epilepsy." and sent me on my way. I was surprised there wasn't a medication that I should have been taking or anything. But I figured he's the doctor so he would have told me what to do if there was anything that could help me out.
My seizures would go away for a few months sometimes (at one point I think they stopped for almost a year and I almost forgot about them), but once they came back they kept on getting worse in intensity and frequency, until one night, shortly before I turned 19, I was in bed, hardly able to sleep because they were so intense. Then all of a sudden one kept getting more and more intense until my body was curled up in a tight ball and I couldn't breathe or scream or do anything. The next thing I remember was waking up a half hour later with my tongue all chewed up. So because it started out as a simple-partial and generalized into a tonic clonic, I remember a lot more of it than most people with tonic clonics remember. I went to the doctor the next day and he started me on meds. I went into a depression because I was so terrified it would happen again and I was so haunted by what did happen. It was the holiday break between my first and second college semesters, so at least I got a good month to deal with it all, not only physically as my body was reacting badly to the new medication, but emotionally, too. But it was convenient timing in that the doctor said I couldn't drive for 6 weeks, and I still had about 4 weeks left of my break so it wasn't as if I had to find a ride to and from school 20 miles away every day.

I know yours are different in that they are nocturnal, but keep in the back of your mind that they could change as mine did from simple-partial to a Tonic Clonic.

As for how I can be ok today, it took me a long time to get past the original experience of the TC. It haunted me for months and like I said, I went into a depression for at least a month afterwards. Plus the meds were giving me really bad side effects, and then I started the looooong journey of finding the right combination of medications.
It's been 13 years since the TC so I'm ok about it now. Though it took that long to get my seizures almost completely controlled by meds. That was the only TC I had, but I continued to have pretty intense simple-partials for a while and as the med levels were adjusted, I would get them less frequently but they could still be very inconvenient and annoying.
I was on two meds for a few years with my doctor trying different dosages for each one until my neuro sent me to Yale to get a second opinion. The epileptologist I saw there had me get a video EEG and at the end of the 4-day test she told me that they were able to catch a number of them on the EEG and she could see that they came from my frontal lobe and prescribed a third med (Lamictal). That took a few months to be adjusted but it helped tremendously. I only got seizures occasionally- about once a month (I was able to recognize a pattern that the seizures are related to my monthly cycle). So then a few months ago, since my seizures were almost completely under control, my doctor wanted to try to have me get off of the med I had been taking for the longest (Tegretol). It was the one with the most long-term negative affects, and also the one that is more unsafe to be taking when pregnant and my doctor knows I want kids some day. So it took two months of gradual decrease in dosage until I was totally off. That was about 8 months ago, and now I'm doing great!!
And as for my driver's license, my doctor had reported me to the DMV but said that in his opinion it was ok for me to drive because my consciousness isn't altered during a seizure. But every 6 months I had to have an appointment to he could sign off on the DMV form so that I could keep my license. Then I was so happy to suddenly get a letter in the mail from the DMV saying that since it had been 10 years, they were closing my case!! I didn't expect that and I was so excited!! So now my neuro just wants to see me every 12 months.
So as you can see, my personal experience is a little different than yours because of the type of seizures I have and the fact that they are about 99% under control, but I do know how it feels to be unable to drive, and I do know how it feels to have a really hard time after a TC.
So yes, it will take a while to get the medication dosages right (hopefully not 13 years like it was for me. lol), but we've all been there and I hope my personal story helped you. Sorry it was so long.

 

[Krista2882]

I sort of think that a seizure-free person would not feel a need to be on an epilepsy site. Does that sound right?

I'm almost totally seizure-free, but I still like to come here to help other people out with my own experience. I haven't been here in a while, though.

 

[cpuerini]

I appreciate all the responses so much, I would really yup more of them individually but my laptop just broke so I read/post everything from my phone..

From what I generally see is that this is different, personal and difficult for everyone-but everyone is getting through it one way or another.

I had posted this right after a partial seizure, when I was really upset. It's been four days since my last seizure, which isn't long but it feels like a long time which feels great. I think the lamictal is also keeping my mood up, which really helps.

The tonic clonics are the worst, and it's been almost two weeks since my last one. I usually have one during the week of my menstrual cycle, which is next week, so I'm crossing my fingers. My meds have been increased because of the TC two weeks ago, so hopefully that will take care of it

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[cpuerini]

I would really apply to more of them individually* Swype doesn't make this any easier

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[kaelieh]

I loved lamictal when I took it. I also suffer depression and OCD. So I enjoyed the mood stabilizing effects of lamictal in addition to the seizure control. One thing I can't caution enough, especially if you're taking an SSRI with Lamictal is the value of sunscreen.

Lamictal makes your skin more photosensitive as does SSRIs like Zoloft and Prozac and I already being fair skin was unaware of the fact and got a nasty sunburn at by spending too long at the pool with my sunbathing crazy aunt.

So, even though you should wear sunscreen anyway. Cpuerini, make sure to protect your skin and wear sunscreen since this will be your first spring and summer on lamictal. Don't learn the hard way like me. I was red for a week and I tried everything to feel better including covering myself in peanut butter because I was out of aloe Vera rub.

 

[cpuerini]

What's SSRI? And thanks for the tip, I actually used to go tanning but figured I've had enough bad luck and don't need to add skin cancer to it, but I was gonna wear a low level of Sun screen so I could get some color

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[arnie]

selective seratonin reuptake inhibitor. A class of anti-depressants.