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

[kirsten]

Something that has not been mentioned yet is the consequence of having seizures and not taking medication for them. People who have two or three seizures are extremely likely to have more. Those who are medicated for those seizures are more likely to get remission and be able to go off those meds eventually without suffering further seizures. Those who have a few seizures and do not take anticonvulsants in good time afterwards are more likely to end up with seizure disorders that last their whole lives.

Seizures are self-perpetuating. One is more likely to lead to another, and each one increases the likelihood of more. It can be extremely difficult to break that cycle--it took me years and once I did start taking my anticonvulsants properly, it took a year for me to start looking and feeling absolutely healthy. At the end of that year, people barely recognised me. The difference to my health was dramatically evident on the outside. Before, I'd looked like an absolute train wreck.

 

[qtowngirl]

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.

ouch jilian, a seizure med's ability in your system can't be decided in five days. you need to ramp up, let it settle and see how your brain takes to it. unless a person's seizures get dramatically worse in five days (and even then you should talk to your doc about cutting the initial doseage in half etc.), it can't be decided that fast.
and i must ask, the ER? an ER doc knows next to nothing about epilepsy and has zero right to make the call of switching your meds, they don't have your file, your history, and as they're not a seizure or seizure med specialist they have to tell you to make an appt with your neuro. that is very bad practice.

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.

true, but that is not up to the patient and an ER doc to do.

And once the seizures are stopped you can work on a plan for one day coming off the meds. Baby steps.

ummm... how do you know? not if it's for adult-onset epilepsy. even if you go years without a seizure you stay on them. it's not baby steps, this condition is for life. imo you should become more informed before giving advice so that you don't give someone the wrong idea.

 

[girlwithadog]

@Nakamova: Thank you for your reply. I've been smoking marijuana for 11 years on and off. I was a somewhat (at least for my age) heavy smoker in my early teens. From 14-16. Then I smoked on and off (sometimes going a year or more without) until I was 22. At 22 I started smoking more than ever. It really helped me with many things. I would probably smoke 8-15 times a day and more than a hit. I did this until this past June when I stopped all together until about a month ago. The "high" feeling reminds me of auras a little too much. So now for the last month I only get the high quality type and take a hit every so often. I've made the mistake of taking two every once in a while and I get paranoid because the feeling is too much the same. So now I use it for the relaxation part and since these seizures have started I got depressed. When I stopped smoking the depression got worse and I even gained 40 pounds. It's amazing but it helps with the depression a LOT. I hear though that you have to get the marijuana higher in CBC and lower THC to avoid the "high" so I think I will start looking into that. I guess I was just stretching for the marijuana effecting the EEG. Right now I'm relaxed about the epilepsy, surprisingly. But I took a small hit a little bit ago. Hopefully I will relax and be able to take it tomorrow. I'm just afraid.
______________________________________________________________________________________________________________________________________________
It's just so hard to believe that I have it. Granted part of me is afraid to believe it but it really is hard to fathom. I've spent 26 years being told "You have dissociative blackouts" (to be more detailed I was diagnosed with Multiple Personality Disorder (now known as DID) 11 years ago and a few doctors had the theory of epilepsy and not MPD. But so many doctors were sure it was MPD so I spent years believing I had this out of this world mental disorder, only to now find out that years and years of therapy to try and stop the blackouts was useless because it's medication I need instead. To go so long without being diagnosed, with no new symptoms (apart from them getting worse like the tonic clonic and the drop seizure) is hard to believe. If I hadn't had those two seizures last year I never would have believed it.

But going back to those seizures, my tonic clonic was provoked. Big time. I was an I-D-I-O-T and thought I'd try "magic mushrooms" for the first time. I'm not a druggy, please believe me. I would never touch the addictive drugs and was just going through an experiment phase for a year (and it wasn't often. I tried acid once, ecstacy twice and then the mushrooms this one time) Not even an hour after I ate the mushrooms the seizure happened. I just walked down the hallway and everything went black but somehow I made it to the couch. Next thing I know the coffee table is across the living room and everyone is standing over me, I'm on the floor, my fiance is crying and screaming and everyone is freaking out (keep in mind we all took the mushrooms) apparently I'd had a tonic clonic seizure, collapse, tensed (and body twisted), collapsed again, started shaking then collapsed one more time before coming out of it. Instant vomiting and I got so tired. Luckily I'd had my valium and I took one. We went to a paramedics and I went to the hospital three days later after I had a couple mini blackouts (where my eyes would just dart around the car) they said it was all because of the mushrooms and would never happen again. I swore off all drugs (apart from marijuanna) and so did my fiance and our friends. So something good came out of it.

So in May when the other seizure happened I'd smoked a lot that morning and drank a lot of caffeine. I was also working mixed up shifts where I would get off work 11-12 pm and have to be back at work for 7am-3pm shift. So when I had the second seizure I figured it was the caffeine cigarettes and lack of sleep that caused the seizure. My neurologist said those three would not cause a seizure without something else (like having epilepsy). But my point is, my first confirmed seizure was not an epileptic seizure but a reaction to the drug. I'm incredibly blessed to have made it that far with the stupidity of the other drugs I'd tried. But blaming it on the mushrooms made me think there was no way I could have had epilepsy, that it was just the mushrooms.

But when I thought about it I would remember all the similar blackouts. Often started with tingling. That would lead to a panic attack and before I knew it I was getting blind spots. Like when I "fainted" at work. When I came to everyone was standing over me and sounded like charlie brown. I had to run to the bathroom to throw up and still couldn't understand anyone. I was really confused and went home. On the way home I threw up everywhere and was so tired. I got home and changed clothes. I was too tired to go to the hospital so I took a nap. Then I got up and went to the hospital. A lot of my big blackouts happen this way. When I got my concussion it happened that way.

But the thing with the concussion, I went to the hospital. But they never said anything. I kept blacking out and would come to for a few seconds every so often. In between I was throwing up and dry heaving. I ended up hitting my head on the bathroom counter when I was vomiting.

But the thing is, apparently I kept talking during it all. But apparently I just kept saying "I'm going to die" Not each time but a few of the episodes. Even at the hospital I was out for the majority of it. I did come to when I heard a nurse say "I've got the cathadir let's get it in" and I shook my head and said no. I don't know why they would use a cathadir if I was conscious and able to talk. So I don't know if that was a seizure or not and I tried to get the hospital records but it's taking a long time. I don't remember going home that night so I have no clue what the hospital said. My neurologist thinks that was a seizure, or could have been multiple seizures, I just don't know why they wouldn't have known, unless they did but I never found out what they'd said.

I know I'm typing a LOT but I feel like I've got to talk about it, I've been non stop talking about seizures since it started with my fiance but I don't want to keep bringing him down, I know it upsets him and he's a good light hearted man, we're only 12 days away from our wedding, I want him to enjoy this. His bachelor party is Friday. I can talk to him and do but it's been a year and a half with complaining about these seizures, I don't want to keep it up so close to the wedding especially.

OK back to my replies

@qtowngirl: You're right and I'll remind myself of all of that and take the medication. I'm just being rediculous about this and I know it. I am having a hard time accepting it and I just need to do it already. Thank you for your comment, I'll re read it when I'm getting worked up about taking the medicine in the morning.

@Jillian: I'm sorry you're going through this and new too. It sucks that you have been having crazy seizures, I do feel very lucky to only have the bad ones one to two times every year or two. I'm not necessarily afraid of being on Keppra forever, it's the thought of being on antiepileptic drugs forever that worries me, and I really hope to be able to be seizure free without the medication at some point but my neuro told me "I want to be sure it's epilepsy before I put you on the medication, once you're on it you will be on it for life" that was before the EEG confirmed the activity.

Now I just have to I guess stop taking that one hit of marijuana every now and then, I'm trying to get a journal started about all those feelings but the marijuana mixes me up, since it's not the CBC marijuana it does give me head fuz sometimes and the head fuz I mix up with seizures. Maybe because I was really high during the may seizure but it still makes me paranoid. Speaking of the journal though, yesterday (before I'd smoked) I was sitting in bed sewing and my head got heavy and my eyes rolled into the back of my head but then it just stopped and went back to normal. Wondering if I should write this, it only lasted 3-5 seconds but I'm wondering if it's note worthy.

Been typing this for 30 minutes I think I'll stop for the night and get in bed, 1am here and I need some sleep. Good thing my 5 year old likes to sleep in, and my fiance has tomorrow off work, I think I'll sleep in tomorrow.

 

[girlwithadog]

@Kirsten: You're right, I do think about the consequences of not taking the medication, especially since it's coming up to a year since the last. Often the major blackouts happen everyone 1-2 years (although the last two were 9 months apart) sometimes I'll have a couple big blackouts in a short time frame but they are usually spaced out. So now that I'm approaching the year mark I keep worrying if another will happen soon. And with the wedding only 12 days away and our honeymoon cruise in 13 days, I don't want this to effect our wedding.

I'll suck it up and take my first one when I wake up tomorrow. I'll come on here in the morning and re read the comments to get motivated to take it.

 

[Sandie]

I was officially diagnosed in Dec. and I am 53 years old and I was scared like you but I have come to terms with the fact that although things aren't perfect, they are a lot better than if I wasn't on medication. Just take it slowly. Sometimes it will take a while for you to find the meds that work for you but don't expect miracles overnight. I still get depressed and upset some days but my new friends on this forum are always there with a good word and encouragement. Good luck and take care.

 

[kirsten]

I'm curious to know why you are so afraid of taking epilepsy meds when you've had no problem taking acid, ecstasy and magic mushrooms? The main difference between the two groups is that anticonvulsants have been put through randomized double blind trails, have demonstrated their efficacy in controlling seizures and have been declared safe. Acid, ecstasy and the like have not been put through such extensive trials and they are not substances that are rigorously controlled in a clinical environment--you can never be entirely sure what you're going to get or how much. On top of that, the effects of magic mushrooms on epilepsy are, I would guess, not exactly risk free, yet you are saying that you fear seizures.

Fears that aren't to do with self preservation are often irrational, and it helps to get a grip on the fact that they don't make logical sense. What I'm seeing is that your fear is controlling your life entirely, to the extent that it is damaging your lifestyle and your health. Your emotions appear to have gotten stuck--you don't seem to be processing them in a healthy way. If you do not move through your emotions by feeling them to their end, they tend to do this and you end up feeling like an emotional wreck for ages. In my experience, the best way to become unstuck is to sit with those emotions until they pass naturally and, if necessary, talk through them with a professional. Mood/mind altering drugs prevent you from being able to process and feel your emotions. They make you become stuck and you cannot move past your responses into healthier ways of thinking. However much or little pot and/or other drugs you're using are probably not doing you much good in terms of helping you to respond rationally to this crisis.

You are so terrified of having seizures, getting out of bed and driving and yet you don't want to take the only thing that can take those seizures away.

You are terrified of properly tested medication yet not of untested uncontrolled chemicals. Your behaviour is stating that you would rather have seizures than take safe and controlled chemicals, that you don't want to have seizures yet you are willing to take uncontrolled chemicals that may cause seizures. I'm sorry if this sounds harsh but in my experience, seeing things the way they really are has been helpful. I'm not a person who judges people for using drugs, but in your case, it seems as though you are in dire need of a long period of clear thinking to get you past this tangle you're in.

 

[girlwithadog]

@ Kirsten: I used to be unafraid of medication. I was on the mirena, would take medication whenever needed and all but when the thing with the mushrooms happened it made me kind of wake up and realize I needed to watch what I was putting into my body. I am terrified of mushrooms acid and all of that more so than medication, but the fear of medication is still there and it is irrational and it does effect me. My fear is so much better than it was after May, but it's still got a long way to go. From May to September I had a constant anxiety attack, I would wake up all night long shaking uncontrollably. I was seeing a therapist who helped significantly with the anxiety but he was one of the doctors who kept saying "it's not epilepsy, it's Dissociative Identity Disorder" and for a while I almost believed him. But he kept pressing the issue and made me uncomfortable so I stopped.

I'd also stopped smoking marijuana while I was seeing him and he kept telling me all the positive effects of marijuana and that I didn't need to stop because it was useful in anxiety as well. But at the time I didn't feel comfortable using it so I didn't.

I do know I'm being irrational in my fears and take no offense to your comment. I've never had anxiety like this before, never had episodes like this. I've had panic attacks for years but never had one long panic attack that effected everything I did. The seizures kind of really shook me up.

Back in May I was afraid of everything. I was afraid to be alone but I was also afraid to be around people. I was afraid to sleep but I was afraid to not sleep, I was afraid to shower (so much so that I would have my fiance come in the bathroom with me and sit on the toilet while I showered) I was afraid to walk on concrete, I was even afraid to hold my daughter. Luckily the fear is better but it's far from perfect.

I've considered going back to my therapist but I don't think they would see me. It's an income based clinic and when I called them at first and told them I was referred by the emergency room (I went into the emergency room twice in a week after the May seizure, my anxiety was so bad I was constantly vomiting, couldn't eat or sleep, every time I took a bite of anything it would make me run to the toilet vomiting) and they said they couldn't help me with the anxiety from the seizure, when I told them about my previous diagnosis' though they agreed to see me.

I'll give them a call though and see what they say, maybe they will see me again.

 

[Jilian]

Qtown, the ER doc contacted my neurologist about the switch. Keppra was affecting my mood in a big way. I couldn't stop crying, felt like I was going nuts and couldn't stand for long periods of time without feeling faint. Since this was only on 1000 mg the neuro switched me because he didn't think I should be doing so rough on such a low dose. It was his choice, not the ER doctor's.

The comments about eventually coming off the meds came directly from my neuro's office. That is what they told me when I started. Sorry if this is misinformation. You are right, I need to learn more. I'm still new to this. I was just trying to lend support by sharing my experience.

ouch jilian, a seizure med's ability in your system can't be decided in five days. you need to ramp up, let it settle and see how your brain takes to it. unless a person's seizures get dramatically worse in five days (and even then you should talk to your doc about cutting the initial doseage in half etc.), it can't be decided that fast.
and i must ask, the ER? an ER doc knows next to nothing about epilepsy and has zero right to make the call of switching your meds, they don't have your file, your history, and as they're not a seizure or seizure med specialist they have to tell you to make an appt with your neuro. that is very bad practice.



true, but that is not up to the patient and an ER doc to do.



ummm... how do you know? not if it's for adult-onset epilepsy. even if you go years without a seizure you stay on them. it's not baby steps, this condition is for life. imo you should become more informed before giving advice so that you don't give someone the wrong idea.

 

[qtowngirl]

Qtown, the ER doc contacted my neurologist about the switch. Keppra was affecting my mood in a big way. I couldn't stop crying, felt like I was going nuts and couldn't stand for long periods of time without feeling faint. Since this was only on 1000 mg the neuro switched me because he didn't think I should be doing so rough on such a low dose. It was his choice, not the ER doctor's.

The comments about eventually coming off the meds came directly from my neuro's office. That is what they told me when I started. Sorry if this is misinformation. You are right, I need to learn more. I'm still new to this. I was just trying to lend support by sharing my experience.

i'd keep a close eye on your neuro then. you've known him for a week or two? unfortunately there is unable ones out there, my first was one so i know, and lots of members will concur. most of what i say/learn comes from an epileptologist and epilepsy clinic, and this is their specialty. a neurologist is not trained in epilepsy, simply neurological disorders.
twice now i have asked my epidoc about drugs that i didn't like at the beginning (mood etc.) and both times she asked that i stick with it, once cut the dose to next to nothing so i had way more time to adapt, and it turned out fine. second med we just ramped up a lot slower, upping every two weeks rather than one. meds are a slow process but it's all about seizure control, and whether it makes you moody or not (we all have to deal with this it's a part of E), the drug needs time to settle in. five days is not enough, and this comes straight from an epileptologist. i do realize keppra is a prob for moods, but like any med it needs to be given a chance to work properly.
and about coming off the meds in baby steps? that comment is a red flag. you were JUST diagnosed, and he's already telling you that you can eventually work on coming off them? how the hell does he know? your brain is brand new to him, and he has no idea the journey epilepsy is going to take you on. it doesn't matter who you are, as i said, if you have adult-onset E you have E for life!! going off meds at some point b/c you've gone a long time seizure-free is possible, but it's also asking for a seizure. ask around you'll see. most docs will lower your med(s) to see what you can tolerate over a period of time, but that's it.
pls be careful jilian, and know up front not to rely on everything you're told. unfortunately when you have E many times a person's best doc is themselves.

 

[girlwithadog]

OK so new question about the medication (I haven't take it but I'm warming up to the idea now... Well as warm as can get given the circumstances)

I'm getting married next Saturday. We are having the bachelorette party on Friday or Saturday night this week. Next Friday there will be drinking for the rehearsal dinner. Our reception will be at the church but we will be leaving on a 4 day cruise immediately after the wedding.

Now I'm a drinker, always have been. And only had two episodes since I started drinking and I got wasted when I had those, like super wasted. But recently I've come closer to my faith and don't want to get drunk any more. But I do like wine and will ocassionally have 3-4 beers, but I only drink once a month if that. But the bachelorette party, reheardal dinner and cruise I will want to drink some wine at least. Not get drunk but get I guess you would call it "tipsy" but basically just really relaxed. No slurred speech or anything but probably 3-4 glasses of wine per night.

Alcohol doesn't make me blackout or anything unless it's way too much. I've yet to have a (knock on wood) seizure while drinking moderately. And for a while I was drinking a glass or two per night. So Anyways, you get the hint. The two drunkest nights of my life I had episodes, other than that none.

But I'm wondering, does being on medication make it more likely to have a seizure when you are drinking? Would it negate the effect of the epileptic drug if I were to drink a few glasses of wine?

 

[kirsten]

If alcohol has caused seizures before it will most likely cause them again. Since there are only 12 days till your wedding, your anticonvulsants will not have begun working properly and you will thus respond as negatively to alcohol as you have in the past.

 

[qtowngirl]

seizures are most likely occur when the body is withdrawing from alchol, opposed to right when you're drinking. a neuro told me that and i fully agree, if i drink i usually have a partial within a day or two.

and regardless of what stage you're at on your meds, yes, alcohol will lower not only your seizure threshold but also the meds' ability to work properly.

 

[Jilian]

My tonic clonic that led to my diagnosis was likely triggered by the glass of wine and bad sleep I had the night before. I wouldn't chance it if I were you. TBH, since starting meds I have zero desire to drink at all, I feel loopy enough without booze.

 

[Nakamova]

Alcohol and seizure meds reinforce one another: The meds allow the alcohol to be absorbed faster, so you will may feel tipsy quicker than you may be used to. And the alcohol magnifies the sedative effect of the meds, so you may feel tired more quickly than you would otherwise.

So I recommend that you proceed with caution. If you are determined to drink (and I completely understand you're wanting to do so), do so minimally, small sips over a long time, make sure there's plenty of food in your stomach, and drink plenty of water too.

 

[girlwithadog]

Thank you all for your responses. I will drink but only to the point of relaxation. A glass of wine or two slowly at the bachelorette party and rehearsal dinner and a beer or two on Thursday. It's my moms 50th birthday and we are bringing her to a concert, it's a band she and I have been listening to since I was a young child so she's really excited since it's on her birthday and she's a drinker. My fiance isn't drinking because he's driving so I know she wont want to drink alone.

I've said this every day since I got the medication but I will try to take it tomorrow. My fiances first day back to work since the weekend so I'm nervous of being alone after taking the medication but I will be fine. I'm thinking to take one at 10am and one at 10pm since I have to take two a day. I read online that even taking them "late" can cause a seizure so I'm thinking possibly get one of the watches that beep to remind you to take the meds? Since I will hopefully be driving in a couple months and I'm going back to the gym and such and am alone quite often I got a ID tag, I put it on my charm bracelet. My daughter asked me today "Did you get that from petsmart momma?" I laughed but when I read it again and it said "Call husband 555-555-5555" it made me feel like an animal that can't take care of themself.

I've been away from they gym for a while with all the issues keeping me cooped up. I feel like I need to get back to the gym to get out of this funk. I want to get into cardio exercises. I just want to be in shape and be able to run. I've never been able to run (I'm guessing this is because my mom always smoked inside our home) and have never had the lungs for it. I want to eventually be able to run a marathon, it's something I've always wanted to do. So I want to get back into the gym and start working on getting in shape. My fiance agreed to stop smoking with me on May2nd. Exactly one year since my seizure I went to the hospital for. I didn't realize until I just looked to see what day it was (we agreed one week after we came back from the honeymoon) so hopefully I will be able to get in shape when I quit smoking.

Anyways, reason for me saying this, just wondering if exercising on this medication and such would be alright? I don't do the weights but I like cardio. I don't have episodes in the gym, only occassional light headedness and such, the blind spot effect etc. But no like super spacey feelings so I think it would be alright, right?

 

[kirsten]

I'm baffled as to why you are so concerned with whether minor lifestyle choices will affect your epilepsy when you are taking the one action that will almost certainly lead to seizures. Not taking your anticonvulsants will probably lead to seizures, no matter what you drink/don't drink/what exercise you do/don't do. If you are concerned about having seizures, take your medication. It is that simple. Once you have begun a primary care regime, you can start thinking about lifestyle choices. It's unhelpful to continue discussing how you will respond to day to day activities when you are not taking your meds.

 

[Nakamova]

My fiance isn't drinking because he's driving so I know she wont want to drink alone.

Keep in mind, it's not about what she wants, it's about you feeling safe.

Please do give the medication a shot. Whatever it takes to keep you on track with them, the better. Keppra has a relatively short half-life, so it's important not to miss a dose. I hope it works well for you, but if for some reason it doesn't there are plenty of meds out there to try.

Just wondering if exercising on this medication and such would be alright? I don't do the weights but I like cardio. I don't have episodes in the gym, only occassional light headedness and such, the blind spot effect etc. But no like super spacey feelings so I think it would be alright, right?

Everyone's triggers and sensitivities are different, and they can also change. We can't tell what will or won't be safe for you. The safest starting point is having your seizures controlled by meds. That's the case for me, and I can do anything (though I might draw the line at scuba diving and bungee jumping). Until you're sure of your level of control, it's best to take baby steps and avoid extremes. Be proactive and moderate: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/