Officially diagnosed today and given Keppra. Any experience? (lots of anxiety)

[girlwithadog]

So as I've been repeatedly posting, I'm new to all of this. Really new. Like in the last two years and I'm 26 years old.

I was diagnosed with Epilepsy today. Officially. Ugh. I was really hoping it wouldn't be, I have bad anxiety and the thought of having seizures for the rest of my life scares me. Makes me sad.

So I was given 500mg of Keppra to take two times a day. She said she will eventually start me on Depakote but Keppra works faster so she wants me on Keppra for now. I'm scared to take it. I don't know if I can.

I guess by taking it I'm admitting the diagnosis, agreeing with it, it makes it more real seeming. I know it's real and will only get worse without medication but I don't like medication to begin with! I get migraines frequently and B-A-D. But I have not taken one medication since the beginning of the summer besides an antibiotic that I couldn't finish because it caused anxiety.

Now I'm told I'll be on this med or med like it for the rest of my life. Makes me really nervous. I don't know if I'm brave enough to take the medication because I know I have to commit to sticking with it if I start it, if I don't things could get worse. Which scares me.

I'm handling the news fairly well right now. Apart from the medication and the news I got about future pregnancies. She said if I stop taking the meds when I get pregnant it greatly increases the risk of miscarriage if I have just one seizure, but if I take the medication it greatly increases the change of deformity? Is that true? I can't accept that, I didn't like hearing that.

I'm also concerned and curious to see how much my life changes, possibly for the better. I've always had "spells" and "auras" as the neuro said. And I get them most days multiple times a day. She said these were partial something? It was a long appointment. She said the THINKS they are those mini seizures. But I've had them so much all my life they just seem normal to me now. So I'm wondering what it will be like if they stop. It's worrisome and exciting all in one.

Is Keppra a good medication? Anything I should look out for? Is missing just one dose that big a deal? If I did miss a dose would it make it more likely to have seizure? Would they possibly be the tonic clonic ones I had?

 

[qtowngirl]

welcome girlwithadog.
okay, there are thousands of people with you right now. i remember the day clearly, diagnosis and all that comes with it is very hard, no way around that. however...

don't be too scared to take it. the alternative is more scary, so just breathe, knowing you have to start sometime, and go for it. putting something that's inevitable off will only cause you more grief, trust me. if the med doesn't work for you or you're not caring for the side effects (if there is any, many times there's none), then you can ask to try something else. they can't say no. your comfort level is EVERYTHING with epilepsy.
and no, by taking it you're not 'agreeing to the diagnosis.' the diagnosis is already in place regardless of the decisions you make. that's why instead of trying to push the idea away it's best to just say 'fuck it, this is happening' and start with your medication.

okaaayyy, pregnancy. def not a good idea to go OFF your seizure meds, for anything. not only does that put you at risk for having seizures, but esp. during labour when your body is under stress, something can happen to you AND the baby. not an option as far as i'm concerned. however, when she says 'deformity' that's very unprofessional of her. if she was a proper doc (this is a neuro right?) she would explain that some drugs 'can' cause things like cleft palate etc., but that there are lots of choices that don't too, and when you're ready to start thinking about a family, different drug options can be discussed then and she can wean you off/on to something more pregnant-safe. been through this part myself so i get your fear.

actually i just read this again, and if she 'thinks' these are 'partial something' this can't be a neuro. there are simple partials and complex partials, complex being the worse of the two. simples are the same as auras (interchangeable name).

keppra is not one of the more loved drugs (better known as kepprage as it can cause mood swings and anger, however, some people love it, it just depends on you, and there's no way of knowing until you try).

it doesn't matter WHAT epilepsy medication you're on, don't miss a dose. some people can swing it one time, others it puts them in the hospital, and the idea is to not find out what you can 'play' with. just set the right time for you to take your meds and take them as best to your ability, as yes, missing a dose does up your chances of having a seizure.

if you need anything hun just send a private message, always here to help

 

[girlwithadog]

Thank you! Everyone is telling me it will all be alright and I'm doing so much better than I thought but no one I know has gone through this so they don't know if it will be alright, so hearing it from everyone on here has helped so much.

The woman I saw today was not my neurologist, he's out for the week, she was a practitioner nurse type thing who followed doctors orders, which makes sense why I didn't get many answers. I asked a lot of questions but she didn't give me many answers. I didn't know she was a nurse practitioner until I saw on the scrip slip it said something like A.N.P next to her name, next to my neuro it said M.D.

So knowing she's not a neuro also worries me about the medication but I believe she's discussed this with my neuro. She also wanted me to go back to her next month to try the medication. She was super nice but I'd rather see the neuro I've been seeing, he answered all the questions I had and didn't confuse me quite as much.

Thank you for the pep talk in taking my medication as well, you're right and I really hope it makes me feel better, I've had these episodes my whole life. It's strange to think about my life without them, I've just gotten so used to them

 

[qtowngirl]

i had them too for nine years before diagnosis, it's okay, it's happened to MANY of us. once you're on here awhile you won't believe how common that is.
and not to worry, a nurse can't prescribe meds, so yes she would have gotten that from the neuro. they do lots over the phone and email these days. hell, my doc and pharmacist are a floor away from each other in the same building and she 'calls' my prescriptions in

 

[kayla]

girlwithdog i remember the first day i had a seizure. not the seizure its self. any way, i was a true hippy in high school no meds unless it was herbal or a vitamin. so i completely refused to take my meds. but i have always been one of those people who could cut off their leg and be like "its just a flesh wound". so after i had a few really bad ones it finally sunk in that yeah maybe there was something wrong with me. you said in your post "i dont know if i can" dont think that! you HAVE TO. maybe there isn't cure for this but staying positive , keeping in contact with your dr. and taking your meds, in your own way can help you beat it! dont let depression get to you either. i let it get me and after a long time i am starting to come out of that dark place. it is one of the scariest things that will ever happen to you. but not taking your meds will make that worse.

 

[AngelwithDentedHalo]

I've been taking the generic of Keppra, Levetiracetam for 2years and three months now. I've had no problems with it. I had a Grand Mal January 4th 2011 and I haven't had any side effects. Everyone is different because one person could be allergic to a medicine and the other not. My doctor told me that Keppra is the most tolerable in his experience and I haven't had problems.

It's natural to be hesitant of a medicine you have never taken before but I'd be more worried about what happens if I don't take it. If Keppra doesn't work for you, your doctor will find one that does but it's important to take the meds.

Just keep a diary of things that might happen while on the medication and how often and if it's controlling your seizures. Even though I haven't had seizures since 2011, there are days when I feel off and wonder about it but usually nothing happens. Write down whatever symptoms you might get when you take it but you should be fine. Good luck.

 

[girlwithadog]

Thank you all for the encouragement and support. Yesterday I was handling this much better than I am today. I woke up 30 minutes ago and have already had to fight off a panic attack about this.

I am afraid to take the medication. And I am afraid to drive. My neuro and the nurse practitioner said that I would be able to start driving again when the medication starts to work (the nurse practitioner gave me 3 month time frame). I'm afraid to drive. What if it happens while I'm driving and my daughter is in the car with me? I'd never had a seizure while I was driving BUT I had one in May when my fiance was driving and since I have the "spells" in the car often as well. I'm afraid to drive, but afraid to never be able to drive again. For those who can drive, how do you get past the fear?

I'm trying to handle this well, and let it effect me only a little at a time. If I let the greif take over, it will take over with force, it did after the tonic clonic last year. I'm only now starting to feel like myself slowly, if I let this upset me I don't know when I will come out of it. But I woke up this morning and that's all I could think about. I have my medication right in front of me but I'm too afraid to take it right now. I am going to try to convince myself to start taking it tomorrow.

I have 7 quizzes and a midterm due today, I gotta get my head out of this and in the books, and I need to take it when there isnt so much pressure for school since I don't know how I will react to it (drowsiness, lightheadedness etc)

We were also discussing a medical ID bracelet since I may be driving soon. I'm not sure though if I should go ahead and get one now or wait to see if the Keppra works or if we need to switch it since I haven't even started it yet. I don't want everyone in the world to know I have a medical issue, only the people close (like parents and my maid of honor for my wedding and siblings) know about this, I want to keep it that way. I don't want pitty. And the ID bracelets are like a "Look at me" thing. So I'm thinking of getting a charm bracelet with about 4 other charms and putting a medical charm on it. Would that work?

 

[Hand of Blood]

I think the side effects on these tabs arnt noticeable it took me about 6 months or mre to notice anything, other people may notice it more than u, but they are a good drug for stopping sezures they stopped mine! hope they will work for you!

 

[momof3boys]

I cant relate to how you're feeling when you first were told, becuase I was just an infant when my parents were told I had epilepsy. I was 18 months when I had my first grand mal seizure and was rushed to the hospital by ambulance for testing. I was started out on Phenobarbatrol as my first anti seizure medication. I was told the same thing growing up, that I would be on anti seizure medications the rest of my life. Ive been on the Keppra since the age of 17, and Im about to turn 32 next month. Its something we all have to come to accept. But for the most part, if it wasnt for the anti seizure medications, I wouldnt feel like a normal person. Ive had break throughs and been switched to different medications in the past and I felt horriable. Seizures can come on whenever and it doesnt do anything but make your life worse. I know its scary to start something new, but just give it a try. Were all here for you!

 

[Cint]

I am afraid to take the medication. And I am afraid to drive. My neuro and the nurse practitioner said that I would be able to start driving again when the medication starts to work (the nurse practitioner gave me 3 month time frame). I'm afraid to drive. What if it happens while I'm driving and my daughter is in the car with me? I'd never had a seizure while I was driving BUT I had one in May when my fiance was driving and since I have the "spells" in the car often as well. I'm afraid to drive, but afraid to never be able to drive again. For those who can drive, how do you get past the fear?

Well, think of it this way. What would you do if you had a seizure while driving and plowed into another car and the other family was killed and you survived? That incident did happen several years ago here in the Denver area. And for me, I was finally able to drive again, and out of the blue had a CP and ran into a tree, totaled my car and now cannot drive again for a long, long time. Fortunately no one was injured or killed. The only car that was involved was mine. I've lived with E for over 30 years now and had plenty of falls and hospital visits due to seizures, but I don't think I will ever get past the fear of driving now. That was a first for me.

We were also discussing a medical ID bracelet since I may be driving soon. I'm not sure though if I should go ahead and get one now or wait to see if the Keppra works or if we need to switch it since I haven't even started it yet. I don't want everyone in the world to know I have a medical issue, only the people close (like parents and my maid of honor for my wedding and siblings) know about this, I want to keep it that way. I don't want pitty. And the ID bracelets are like a "Look at me" thing. So I'm thinking of getting a charm bracelet with about 4 other charms and putting a medical charm on it. Would that work?

I wear a medic alert bracelet. No big deal for me. It just list my medical issues and docs. I wear it because I also have diabetes and thyroid issues, so incidents like the car accident, the paramedics could see my other problems and right away tested my glucose levels.

 

[Nakamova]

It's normal to feel anxious about all the "what-ifs". But it can be very helpful to focus on the potential positive outcomes -- not just the potential negative ones. And it can be even more helpful to focus on what you can control and do right now. You know that you can try the Keppra and see if it helps. If it helps without problematic side effects -- hooray! Once you get a sense of how you feel on it, you can make a decision about driving. If your symptoms are completely controlled, then you may feel comfortable driving in a few months. If you don't feel you're ready yet -- for whatever reason --that's okay too. Give yourself as much time as you need to get comfortable with the idea.

If you don't like the Keppra, or it doesn't control your symptoms, then you know there's the Depakote to consider (and other meds as well). The trial-and-error process with meds is not a lot of fun, but it's nice to know that there are other choices out there if the first thing doesn't work. We are all different in our responses and approaches to medication, but I think it helps to start a new med or treatment with a realistic -- but positive -- attitude. Hope for the best, but be smart about about tracking how you feel and letting the doc know as well.

 

[qtowngirl]

And I am afraid to drive. My neuro and the nurse practitioner said that I would be able to start driving again when the medication starts to work (the nurse practitioner gave me 3 month time frame). I'm afraid to drive. What if it happens while I'm driving and my daughter is in the car with me? I'd never had a seizure while I was driving BUT I had one in May when my fiance was driving and since I have the "spells" in the car often as well. I'm afraid to drive, but afraid to never be able to drive again. For those who can drive, how do you get past the fear?

i'm not sure about this. they said 'you'll be able to drive when the meds start to work?' mind if i ask where you live? if you have seizures that actually have caused you to lose your license there is a LEGAL limit to when you can have it back, and providing you don't have any more in the meantime. some states are 3 mos, some 6, some a year. canada is usually 6 mos or a year, and some countries are even two years (eek).
being afraid to drive is normal, and unfortunately it does happen. as cint said, and i as well have put my car in the ditch. low ditch tho, and i was the only one involved and not really hurt either. scary as hell to wake up to tho. have lost my license five times, and am actually starting to drive again soon. lack of independence is an awful part of epilepsy but it just is.
maybe ask yourself what is more important to you. if you really can't imagine not driving again then maybe those pills aren't as scary as you think. with luck they will help control your seizures and in time you will feel comfortable behind the wheel. because trust me, if you're not on meds you have no right to be on the road, just a fact. so, drive or meds? i don't want to sound mean but it's one of many choices we have to make with this condition, and know now it's not one of the harder ones, by a long shot.

hugs hun, we know every feeling you're going through and we're here.

 

[girlwithadog]

In my state it's 1 year until you can get your license back. May 2nd will be one year since my last noticeable seizure. However the doctor and nurse practitioner believe I'm having the partial seizures or something like that. They also mentioned auras. But the last time I lost consciousness was May 2nd 2012 so I'm due back for my license in just a few weeks. But I have a 5 year old daughter that would be in the car with me. I can't imagine getting into an accident with her in the car with me. I don't think I will ever be able to drive on the interstate again, or anywhere with a speed limit over 45 really. It's scary to think about. I used to drive across the country ALL the time, and everything was fine. My unconscious episodes only happen every year to two or even sometimes three years so I guess I lucked out with all the driving I did. But when I had my last seizure I was the passenger in the car.

I want to be able to drive, but I don't want to drive. I will get my license back when I'm controlled on medication but I wont use it for anything more than in town errands, I just dont feel safe.

It's another day and I decided I would start taking the medication today but every time I look at the bottle it causes anxiety.

I really appreciate all of the wonderful caring support on here, it's been wonderful. I just want it to go away. My fiance keeps saying how great I'm handling all of this,, but I'm not, I'm just keeping it in, the fear and sadness of it all.

 

[qtowngirl]

okay, first step, that's great. grab a glass of water and set the pills beside it. look at it for a sec to get a mental picture of what your dose looks like, then grab them and down the hatch! trust me once you start the anxiety will start to lessen and it just becomes part of your day. like i said before, the alternative of not taking them is the worse of the two by far. hugs and best of luck you can totally do this

 

[Nakamova]

I agree with qt, take the first step if you can, and things will get easier. As you do so, close your eyes and visualize all the good things that will happen -- how much better you will feel, and how great it will feel to be in control.

It also doesn't hurt to have an incentive: Reward yourself afterwards! Maybe with a nice meal or a fun walk or a new movie -- whatever works.

 

[girlwithadog]

OK this may be my over analyzing or my anxiety or what not but I can't help but wonder if I should get a second opinion before taking the meds. I met with a nurse practitioner not my neurologist (he was out for the week) maybe I should at least talk to him before taking the meds, maybe I can talk to him over the phone?

My concern now is if I do take the medication, what if it isn't epilepsy but is something else causing the seizures, or just something else in general. I left this out on the forum because I didn't think it would matter, the neurologist nor the nurse practitioner saw a issue but I did take one small hit of marijuana the morning before the EEG (about 3 hours before). I didn't mention I'd taken a hit because I do that regularly. I don't get high but I use it to calm my anxiety and I use it for energy reasons, I haven't had energy at all since the last major seizure so it helps me feel energized. The feeling of being "high" reminds me too much of the "aura" so I never try to get high and stick it to a small hit every once in a while. So I'm wondering if this would have effected the EEG. From my medical records the neuro and the nurse practitioner knew that I was smoking marijuana during the last seizure, it was in my hospital records, no one ever said it had anything to do with the seizure at all so I didn't figure it would effect the EEG

But now I'm wondering if the EEG was abnormal because I'd taken a small hit earlier in the day. I don't know what will happen if I take the medication and it's not epilepsy, would it still worsen the seizures if I stopped?

I asked the nurse practitioner "Are you sure it's epilepsy, could it be anything else?" and she says "don't go reaching for something that's not there, you have it and you need medication". Maybe I'm reaching but I want to know before I become dependant on a medication.

Maybe if I just talked to my neurologist I would feel more comfortable in taking the medication, but I keep wondering the "what if"s and I know I'm annoying and pathetic and chicken and way over thinking things and I'm sorry... It's just a big deal to me to start a medication and never be able to come off that type of medication for the rest of my life. Especially when it's a medication that effects my brain.

 

[Mungie]

If you don't feel safe DON'T DRIVE. I have been in 2 major accidents (totaled my cars) and they only involved me and another solid object...last one was a tree, about 3 weeks before my wedding! I will never drive again (even if I could) just because I don't feel safe, and I don't want anyone else to get hurt either. Not that my state would ever give me a license again (I have 10-12 simple and complex-partial seizures every month!) Quick ones...only about 1-2 minutes. And NEVER settle for info given to you by someone you don't trust! My first neuro told me that my simple-partials were a problem with my eyes, and that I needed to see an eye doctor. HE told me to do "EYE PUSH-UPS!" Guess when my first accident was? Now I see an epileptologist who is an AWESOME doctor.

Seriously, epilepsy is scary...and I am a very very high-strung, anxious person so I kinda know how you feel. I was diagnosed at 18y...36 years old now. Even after 18 years it's still scary. But all we can do is support our friends and take each day as it comes (easier said than done!) And MedicAlert is a great idea...they have some really neat looking stuff too! Pendants too...if you want to tuck it underneath your shirt or something. A VERY good idea!

That said, if you want to talk sometime just shoot me an email or private message. I'll share anything with you. I've tried almost ALL of the meds available, and can give you an opinion on what I've tried.

So many people are afraid to talk about epilepsy...don't be afraid! Sometimes laughter is the best medicine. I would really love to help anyone who needs it. Anytime! :brain:

 

[Nakamova]

My concern now is if I do take the medication, what if it isn't epilepsy but is something else causing the seizures, or just something else in general. I left this out on the forum because I didn't think it would matter, the neurologist nor the nurse practitioner saw a issue but I did take one small hit of marijuana the morning before the EEG (about 3 hours before). I didn't mention I'd taken a hit because I do that regularly. I don't get high but I use it to calm my anxiety and I use it for energy reasons, I haven't had energy at all since the last major seizure so it helps me feel energized. The feeling of being "high" reminds me too much of the "aura" so I never try to get high and stick it to a small hit every once in a while. So I'm wondering if this would have effected the EEG. From my medical records the neurologist and the nurse practitioner knew that I was smoking marijuana during the last seizure, it was in my hospital records, no one ever said it had anything to do with the seizure at all so I didn't figure it would effect the EEG

But now I'm wondering if the EEG was abnormal because I'd taken a small hit earlier in the day. I don't know what will happen if I take the medication and it's not epilepsy, would it still worsen the seizures if I stopped?

N,o a hit of marijuana wouldn't produce the abnormal brainwaves characteristic of epilepsy. In fact, if you'd taken the hit a bit closer to the actual EEG, it might have suppressed the abnormal brainwaves, since marijuana can sometimes have a anti-seizure properties.

Some people find that marijuana helps control their seizures (if you search you'll see several threads on the topic here at CWE), but it can be risky. As with the meds, everyone reacts differently, and stopping and starting too abruptly can sometimes have a triggering effect.

Don't be afraid of trying the meds. Remember, many people take pills every day for all sorts of ordinary reasons (birth control, allergies, heart health). Some people have to check their blood sugar every day, several times a day. The meds can be a relatively tiny aspect of your life. (They are for me.)

Ultimately it's your choice whether or not to take them -- no one can force you. Just make sure you're comfortable with the potential consequences of whichever choice you make.

 

[qtowngirl]

OK this may be my over analyzing or my anxiety or what not but I can't help but wonder if I should get a second opinion before taking the meds. I met with a nurse practitioner not my neurologist (he was out for the week) maybe I should at least talk to him before taking the meds, maybe I can talk to him over the phone?

like we talked before, it would have been the neuro anyway that gave the diagnosis and wrote the prescription, the convo with her isn't of much significance when it comes to your new condition. neuros are specialists, that's where it's at. now, yes, misdiagnosis do happen, but you're quite far from even seeing that as an issue. and i'd be surprised if the neuro would have a ph convo with you, if so, consider yourself lucky, usually it's 'book an appt.'

My concern now is if I do take the medication, what if it isn't epilepsy but is something else causing the seizures, or just something else in general.

regardless, they are anti-seizure medication. and again, you've been diagnosed.

I asked the nurse practitioner "Are you sure it's epilepsy, could it be anything else?" and she says "don't go reaching for something that's not there, you have it and you need medication".

good point.

It's just a big deal to me to start a medication and never be able to come off that type of medication for the rest of my life. Especially when it's a medication that effects my brain.

where did you get the idea that if you start one you're stuck on it for life? there are many types of anti-seizure meds, the idea is to find the right one that helps you not have seizures.

 

[Jilian]

I'm just like you, the thought of being on medication scares me a lot. I also like to know the details of what is causing the seizures. I went from being pretty healthy to a crazy seizure last week and I'm still dumbfounded. I was very afraid to start meds, but I knew it was most important to stop the seizures. I started keppra this past Wednesday and by today I realized it wasn't working so I went to the ER and got my meds switched. Nothing is set in stone. From what I hear, it's typical to go through some trial and error until you find the right meds. So give the keppra a try and if its really awful then try another one. But stop the seizures, then you can work on getting to the bottom of the cause (if one can be found). And once the seizures are stopped you can work on a plan for one day coming off the meds. Baby steps.