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

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

C

cpuerini

New
Messages
91
Reaction score
0
Points
0
So I was just diagnosed in October, and have been researching and learning as much as I can because I want to know as much as I can-though it is so different for everyone, it really helps to hear any information from anyone with any experience.

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.

Second, all but one of my seizures have been while I was sleeping, or right after waking up. Anyone have experience with these nocturnal seizures? One thing I saw that I liked was that people are more likely able to drive with these, but a scary thing was that my boyfriend told me that one night I turned over onto my pillow. My seizures don't usually last longer than thirty seconds, but that still scared me.

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?

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.. oh and one more, SUDEP. I know it's rare, but did everyone go to sleep with the fear of not waking up at first? :/

Thanks so much for any advice, I'm so glad I found this website.

(Also, sorry if there's any spelling/grammatical mistakes in here. My laptop broke, so I'm posting from my stupid android phone with Swype. Hope this is all understandable!)
 
cpuerini,
there is nothing wrong with posting.It's good that your trying to learn as much as you can, I think it's great.
Don't worry about your spelling and grammar.I know my grammar is terrible.

I know it's hard not being able to drive I've never driven in my life actually, I've only worked a few jobs because of my seizures.
SUDEP is rare but it can happen .Seizures can change at any time I have about 6 different types of sz's myself.
I had brain surgery in 1982 got a VNS in 2001 and I've taken a lot of different meds.
 
cpuerini said:
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.
!)
Click to expand...

I wanted to say I understand how you feel here. I can't get mine under control and feel like every time I think I'm making progress I have a big setback and feel like I'm slammed to the mat again, wonder what this will mean to my whole life, and then feel bad about it because I could have it so much worse than I do, and than so many other kind people on here do. On this part, I will say that maybe we need to go easy, and honor where we are in the process. It sucks to feel bad about it (I've had a major crying day today after my second opinion and it feels like crap), but maybe there is wisdom in 'the only way to the other side is through." I want to work on realizing that just because I have a health issue does not mean I cannot be happy and whole, but maybe it helps also to realize that it does us no good to beat ourselves up further for being sad and frustrated by setbacks. (((Hugs))))
 
Belinda5000 said:
cpuerini,
there is nothing wrong with posting.It's good that your trying to learn as much as you can, I think it's great.
Don't worry about your spelling and grammar.I know my grammar is terrible.

I know it's hard not being able to drive I've never driven in my life actually, I've only worked a few jobs because of my seizures.
SUDEP is rare but it can happen .Seizures can change at any time I have about 6 different types of sz's myself.
I had brain surgery in 1982 got a VNS in 2001 and I've taken a lot of different meds.
Click to expand...




I'm curious about the VNS, can you tell me about that?

Sent from my SCH-I535 using Tapatalk
 
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..
 
Quality of life is important to us all. Please don't feel you have to belittle your condition because others may have it worse- we're all here because our lives have been affected by E- regardless of type/frequency/intensity of seizures, whether we're controlled or not, whether we've got a VNS or had surgery, whether we're a carer etc.

Hell, there have been a few posts from pet owners worried about their companions!

The loss of independence can be a big kick to the sack, especially at first- it certainly was to me. I've never driven either, but at least in the UK i can get from North to Sorth in a day :) I've lived on my own pretty much all my adult life, and tbh I'm glad I don't have to pay the exorbitant road tax for a car ;)

There is an excellent thread on here- stating the *positive* effects of E (think it's in the Lemonade Stand- a really super-positive place :) I'll add it to this post in a min).

Oh, and yes, the no-speach/locked-in feeling does sound very much like a partial- I have that exact feeling before my t-c. Your seizures may well change as you stabilize on your meds, or change them, or simply over time- E can be a transitory condition.

Keep your chin up, and feel free to come back here for support any time- that's what we're all here for ;)
 
Last edited:
Hi cpuerini. In general, I think you do get used to your epilepsy, but it always makes itself known in your life. Some people have it much worse than others, but it's definitely a permanent part of your life. I've had 5 tonic-clonic seizures in the last 32 years (4 when I was first diagnosed and one just over a year ago) and probably 10,000 simple and cmplex partial seizures. If you google those terms you will find lots of info on them.
If you want to know more about vns, you can go to the cyberonics website (cyberonics.com. They are the company that makes the device). I've had one implanted since january 8th of this year, and I have a thread here called "my vns experience" if you want to read about that. There are others here, too, who have the device. As with most things, some people like it, some don't, and "individual results may vary". In my understanding, insurance companies usually won't authorize coverage for the device unless you have failed at 4 or 5 meds. Keep learning, get lots of opinions and do a lot of your own research so you can make good decisions and be an active part of your treatment. Knowledge is power!
 
Arnie I've really appreciated your thread on your VNS Experience and have read every post--I really hope it becomes the answer you have been looking for!
 
Slim blue, thanks for the super positive reply :) and I'll definitely check out that post.

Arnie, I'm actually already on five meds because when I was first diagnosed I went into status for about a day, and I've had countless tonic clonics..

Sent from my SCH-I535 using Tapatalk
 
Sorry cpuerini- I didn't look at your post count, but hey- it's a great link to spread round whether you've just joined or not :)

(Made me cry the first time I read it, so have some Kleenex handy)
 
Last edited:
Oh boy lol ok good thing I still have them next to my bed from the last seizure

Sent from my SCH-I535 using Tapatalk
 
Just remember - Your have epilepsy, epilepsy doesn't have you! This is how you keep a positive attitude.

After a good bit of my seizures we get a good laugh about the things that I've done during them. I tried to put a pillow in a pillow case on my foot like a sock once. My husband tried to take it off of me several time but finally let me go because I just wouldn't give it up. Once during one I saw a dog and just kept saying 'dog dog' repeatedly until I came out of it. I could go on with the list. We usually laugh after the seizures and not cry.

I was diagnosed 11 years ago when I was 26 and haven't been able to drive since. It's hard to get around but I have family and friends that help with that.

When I was first diagnosed it took a few years to figure out what meds and dosages to be on before my seizures reduced. I was probably having at least 20 a month, and that was a good month. In 2007 my neuro suggested getting a VNS, which has helped me a good bit. It took at least a year to figure out what settings and meds I needed to be on. Even after doing all of this I'm still having seizures but not as many or as bad. Since you've only had epilepsy for 5 months it's probably going to take a while longer to figure out what's going to be right for you.

I've had many seizures where I know what's going on, what I'm saying or doing. How ever what I think is going on isn't what really is. I'm not exactly sure if those are considered semi or complex partials, but they are partials. During many of my seizures I completely blank out and don't know what's going on at all.

My very first seizure was a tonic colonic in my sleep. I don't know if I have them in my sleep now though, my husband and I sleep in separate bedrooms for many reasons. I know many people have nocturnal seizures though, and that's the only type they may have.

After finding this web site it's helped me a ton with dealing with my epilepsy. It's nice to know that there are other people going through the same things that I am and how they deal with them. It makes me feel like I'm not all alone out there doing these things.

Hope this helped you out some.

(don't worry about your spelling. I've seen worse on here and I think mine is one of them!)

I've never been afraid about not coming out of a seizure but I know my family is. When I had my very first seizure I had to be put into a coma to stop the seizures. I lost a ton of memory when I finally did come out. There are a ton of people I didn't, and still don't, know. My husband is scared to death that this is going to happen to him after one of my seizures.

I really can't give you any advice about seizures becoming normal. Mine have gone from being as bad or not as often. However I may go 3 weeks with out a seizure then have three in one week, normally their spread out over the month though. I usually have one tonic colonic a year and that's how it's always been no matter what meds I've been on and with having the VNS.
 
I try to say that quote to myself a lot, but I'm still getting used to it.

My boyfriend is good at making me laugh about anything, he's in Florida for the week though so I'm a bit more down than usual

There's so many different types of seizures, I've never heard of one like you described.. so, can they do just about anything? I guess if they can go anywhere in your brain, that might make sense?

I had to be sedated when I had my first seizure too, because they couldn't control my seizures and I had gone into status. I lost a ton of memory too, I really don't even know how much but there's period I don't know also. I'm so glad I remembered my boyfriend, and like your husband I'm scared to death I'll lose my memory again and forget my boyfriend. He jokes around and relates it to the Adam Sandler fifty first dates, but I don't find it so funny..

By normal I meant, like, part of your life. My neurologist is trying to control them, and I was wondering if sometimes they just can't really be controlled

Sent from my SCH-I535 using Tapatalk
 
My daughter has epilepsy, but she is pretty much 100% controlled on a minimal dose of trileptal. Her seizures started after she had her first child, but now she has to stay on meds or she has them again. I don't know of anyone on here who is completely controlled. I sort of think that a seizure-free person would not feel a need to be on an epilepsy site. Does that sound right? As I said before, though, epilepsy has been a constant part of my life since I was diagnosed in 1982. My seizures (simple and complex partial) have never been well controlled.
 
I was still in college after I was first diagnosed, I just moved on campus to make it easier for me to get to class. This time around I took a leave of absence from school because I had starting getting migraines and they were more disabling than my seizures in a way because they would last from 36-72 hours. Even when they started getting better, with the emotional rollercoaster I've been on since my seizures have become more frequent I'm grateful I'm not in school (I was going back to study mathematics so it was a stressful curriculum), I can do with out the extra stress.

I do work part-time and for now that's enough for me. My body is not under my control right now and I actually feel really lucky to still have my job. I work in a casino in table games as a dealer and I'm really surprised that I haven't been asked to move to a position off the floor because of my seizures. Of course, than I'd be in trouble because I wouldn't be making enough to get by on.

Getting diagnosed at 18 was way easy than having, I feel like relapse isn't the right word but I'm not really sure how else to put it, at 25 (I'll be 26 in July). I was fairly independent for 18, but still enough of a kid that I didn't mind not driving I wasn't worried about AEDs causing birth defects or seizures and pregnancy (I wasn't even dating, I wasn't even remotely interested in dating - I blame the Zoloft for that though because it makes me seem less weird)... Now, my boyfriend and I were talking about moving to a new city for his career (lateral move for me) in the next year, I was getting to the point where I was ready to start thinking about kids but I kind of had the feeling he wasn't and I'm not in a rush and we're not married yet and I was back in so school, so not no rush... talk about how things have changed.

For our household I pretty much ran all of the errands, I'm kind of not sure if he even really realized what all I used to do to take care of this place and our dogs, so I think it's kind of in for an awaking on that one. I'm really getting off topic here, what I mean to say is: the feeling about the loss of independence is normal. You did lose the level of independence that you were used to and it's going to require a period of adjustment, it's gets better though and you learn new ways of coping with it and getting around.

If you are having just nocturnal seizures or if you get to the point where the only seizures you're still experiencing are nocturnal that is good news for driving. Laws very by states, but in quite a few all you need is a doctor's clearance and if you only seizure while sleeping you can usually be cleared to drive. I will tell you though, not being able to drive does suck, but as some who's lost their license more than once it's really not the end of the world.

Specifically, to your question about not being about to speak after a seizure. It could be a seizure or it could be something called Todd's Paralysis that can occur after a partial seizure which can sometimes include aphasia. I've had after a complex partial and it actually gave way my seizure, if you get all the symptoms it can be freaky because if you don't know what it is it's similar to the symptoms of a stroke. After a seizure it involves weakness on either the left or right side of the body and it can effect speech and/or vision. After a seizure I get it on my right side and I lose fine motor control in my right hand and I can't talk. My usually doesn't last long at all, but it can last up to 48 hours. From what I've seen on forums though people that have it though it doesn't last that long though. It really freaked my out the first time.

About SUDEP, I've never worried about it with myself or any of my family members that have epilepsy. However, I did lose a coworker and a friend to SUDEP this past year actually. But like Belinda5000 said it is extremely rare and very unlikely. He was middle aged so there was some speculation that when he went into the seizure his heart couldn't take it, but the cause of death was ruled SUDEP. He was alone when it happened and no one checked on him until he didn't show up for work, you don't live alone and you don't sleep alone so if you were to start seizing it would probably wake your boyfriend up. SUDEP is kind of like SIDS, it's rare, there's no known cause, there's no way to prevent it, there's no way to know if it's going to happen, try not to worry too much about it.

I guess seizures become normal in away that you do get used to it being part of your life. But the experience of a seizure is hardly ever never normal. The only caveat to I will say is if you have amnesia of the seizure, if you can't remember it, it doesn't feel abnormal. I don't remember any of my generalized seizures so for me it's kind of like they didn't really happen even though I know they did.

I think it's like 20% of cases of epilepsy are refractory, as in they are resistant to treatment. You've just started treatment so unfortunately it might be awhile before your neurologist wants to make that call.
 
I didn't even think to ask about college or a career, so I'm glad you mentioned that. I was in the beginning of a semester when diagnosed, and had to resign. I haven't been able to go back yet, and the time away actually made me think about changing majors (again). I've seen a lot of people mention migraines, is that a symptom of epilepsy? I use to get them every once and a while, but the birth control I'm on got rid of them.

When it comes to work, I'm worried about that too... is it even possible to work full time? I absolutely hated the last job I had, and it caused me a ridiculous amount of stress, which I know wouldn't be good for me now. I don't have a degree yet, and really am not sure what I want to do, and I think going back into customer service might cause me stress again..

When it comes to driving I am hoping that I'll be able to again. But we live with my mom for now, and no one in my family wants me to be alone- I'm 24, so I feel like I'm being treated like a kid. I guess I can kind of understand because they're just worried, this is still knew and not under control. But once they do start being ok with me being alone, including walking on my own, she lives in a very rural area. The nearest bus stop is over a mile away, and the nearest plaza with just a market and convenience store is even further.

Sent from my SCH-I535 using Tapatalk
 
Lots of us with epilepsy work full time, and do everything else that people without epilepsy do. Since I was diagnosed in 1982 I have completed a Bachelors and Masters degree, my wife and I have raised 3 kids, I had a 15-year career as a social worker, and for the last 14 years I have owned and run my own business. I can drive, I had a motorcycle for about 7 years (which my wife finally convinced me to sell because she was afraid I would have a seizure on it), and I'm active in lots of ways. If there are things I've done to accommodate epilepsy I'm not even sure what they are any more because it's been such a constant. In a sense, my epilepsy is a background to everything I do in my life. It's like white noise of a fan or something. Sometimes louder and more intrusive, sometimes quieter, but always there. I can still do pretty much everything I want to, though. Don't give up!
 
I don't think seizures would ever become "normal". I think people just become complacent.

As for positivity, some people, like me, are just positive. Others it may take time. If you can love life regardless, learn to laugh a lot at the things you wouldn't have before, and don't let the little things bug you, you'll be more positive. Think positively and positivity will follow you.

As for the work and school; I have a two year degree and work three jobs. I'm working on testing for a fourth job.
 
Arnie I have to agree with your wife, this happened to me because of a head injury on a motorcycle.I'm not a fan of them.. but it's good to hear how much you've accomplished, very inspiring. And you to nsperio, it's good to hear how much you're able to work.

Thanks everyone for the positivity, it really helps :)

Sent from my SCH-I535 using Tapatalk
 
Hey there welcome to the forums. We are glad you are here
I am a 27 y/o male and I have had E all my life.
First off... so many people on here seem so positive, how long did it take you to get there?
Does anyone really ever get there? Every day presents its own struggles and joy’s. Most days for me tend to be more like a 3 on a 1-10 scale of happiness. I don’t smile that much anymore even when I am doing the things I love. I think it’s a life long struggle really. And the meds can make that struggle much more difficult at times along with the extra challenges epilepsy provides. You just gotta do the best you can every day and surround yourself with people who make you happy and are supportive. And when that doesn’t work come on here and rant.
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.
I have dealt with this all my life too. It sucks. And sometimes it’s not even a seizure that is the cause of bringing us back down but the challenges of everyday life. My pattern seems to be every 4 – 5 days I have a string of 4 -5 partials. But it’s really inconsistent.

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.
Again I can totally relate to that. I can’t drive but I am working but I am going to be leaving my job soon because of the transportation issues. I am starting school in August again that is about 7 months away now and even 3 months can be a lifetime when you are living day to day. I think the losing the independence thing really affects my quality of life even more than the epilepsy itself and limits my ability to cope with other stressors. It’s a hard thing for people to understand who maybe have not been independent their lives or have had access to good public transit.

Second, all but one of my seizures have been while I was sleeping, or right after waking up. Anyone have experience with these nocturnal seizures?
My seizure pattern for my first 22 years of my life were all nocturnal seizures. It was because of this that I was allowed to obtain a license and become independent when I was a teenager. But then my pattern changed and I had several seizures behind the wheel and totaled 4 cars over 9 years and 5 serious accidents. Now since my last resection my pattern has changed again to mostly all partials but I still can’t drive because they happen when I’m awake.

One thing I saw that I liked was that people are more likely able to drive with these, but a scary thing was that my boyfriend told me that one night I turned over onto my pillow. My seizures don't usually last longer than thirty seconds, but that still scared me.
Mine typically lasted between 2 – 4 minutes when they were strictly nocturnal and I had the full body jerks and everything and would always wake up with a splitting headache and chew marks in my cheeks and tounge when I would have one so I always knew.

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?
Yes than can be partials but a neuro would be able to help you diagnose those the best. As long as you maintain consciousness they are considered simple partials but if you lose it then they become complex partials.

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.
I don’t know what you mean by normal. But they tend to fall into a pattern and by writing down when you had them and what you were doing you might be able to identify triggers that will help you avoid having them.

My neurologist wants to get my seizures more under control, but I'm wondering if some people just end up living like this.. oh and one more, Sudden Unexplained Death in Epilepsy. I know it's rare, but did everyone go to sleep with the fear of not waking up at first? :/
No I don’t think anyone just ends up living with nocturnal tonic cloncs. There are some people who I have read about that do end up just living with simple partials because their severity is more of a nuisance than a real danger to themselves.
And yes when my TC’s were only in my sleep I was afraid of going to bed every night and would stay up as long as I could just so I wouldn’t have to have a seizure. At the same time I was glad because I never had to deal with having Tc’s in public or endangering myself to greatly and the stress from the E was easier to handle when they just happened in my sleep.
What meds are you currently taking if any just curious?
 
You must log in or register to reply here.
Back
Top Bottom