I'm new to the forum. Diagnosed in 2002, I've had a full tonic-clonic about every 3 years plus lots of intermittent activity in between. I am currently transitioning from Dilantin to Keppra due to bone density issues. The initial adjustment to Dilantin was awful, and I thought I was pretty much a poster child for it once I got used to it and was getting on with my life pretty well, but I feel like I'm starting all over again with Keppra. There's a lot of info on this site that didn't exist when I was diagnosed nine years ago. I'm seeing people writing things that are exactly like my own experiences (Who knew my spike and drop in temperature was part of the epilepsy?). Still, t's hard to accept that this is really part of who I am and that the "E-Word" applies to me just as much as it does to little kids who have uncontrolled seizures. I am grateful, though, that this forum exists. Clearly I have a lot to learn .... again.
New Here and Grateful
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Hi Holin:hello:
Welcome to CWE!
The people here are really nice and helpful, plus, as you've discovered already, there's lots of good information. Actually, you've found something that sounds interesting to me that I haven't come across: spikes and drops in temperature? I need to look into that
Anyway, I was on Dilantin for a while at first, but it didn't work well for me and so I switched to Keppra. I was on 1000 mg/day at first which worked great with no side effects. Unfortunately, I started having little breakthroughs and had to up to 1500 mg/day. That came about the time that I had other issues to deal with, so the fatigue I felt may have been the Keppra or all the other stuff. I've gone back down to 1000 mg/day and so far so good seizure-wise, but not much change in energy. But we'll see. Sorry, I got a little rambly
, the point I meant to make was that Keppra works pretty well for me with low energy, fatigue being the only side-effects, and that may be due to other things instead of the Keppra.
Again, welcome!
Welcome to CWE!
The people here are really nice and helpful, plus, as you've discovered already, there's lots of good information. Actually, you've found something that sounds interesting to me that I haven't come across: spikes and drops in temperature? I need to look into that
Anyway, I was on Dilantin for a while at first, but it didn't work well for me and so I switched to Keppra. I was on 1000 mg/day at first which worked great with no side effects. Unfortunately, I started having little breakthroughs and had to up to 1500 mg/day. That came about the time that I had other issues to deal with, so the fatigue I felt may have been the Keppra or all the other stuff. I've gone back down to 1000 mg/day and so far so good seizure-wise, but not much change in energy. But we'll see. Sorry, I got a little rambly
, the point I meant to make was that Keppra works pretty well for me with low energy, fatigue being the only side-effects, and that may be due to other things instead of the Keppra. Again, welcome!
Hi there, Holin
We're glad to have you here at CWE. I'm glad you like it here....there's plenty of information, and plenty of friends to make. And the dinner party atmosphere just can't be beat. LOL. So kick up your feet, and hang out.
Hopefully, one of the guys will bring around some GOOD coffee or something--I burnt it AGAIN--but hey, you might want to join in the barbeque, too. Check that out under the Wedding joke thread. Hehehe.
Seriously though, I was on Dilantin for 35 years. I understand the bone loss issues. They're finally beginning to seriously haunt me, though I haven't broken any bones lately, I have broken a fair number of them over the years (arms 6 times, and I forget how many times the rest of my various body parts. Oh, that sounds bad!)
I was taken off about 10 years ago, I think, but the damage has been done. My biggest problem from the Dilantin though, is the bleeding gums. They still bleed to this day if I try to floss them.
And if I do it on a daily basis, wellll.......YUK. They're not puffy and overgrown, which is a problem that many Dilantin users suffer, though.
I also used Keppra, and only lasted 9 doses, (or was it days?) on it. That was the most horrible experience I'd ever had on a drug, but that was just me. In some ways, looking back, it was truly funny. In others--NOT. I wish you the best of luck with it, though. Keep in mind, that if you start having issues with emotional swings, some good Bvitamins, particularly B6, will help.
Anyway, I've got to go, but I thought I'd stop by and say hi. We ARE a friendly bunch here, and if you EVER need anything, feel free to let one of us know. We're just a PM (private message) away.
Meetz
:rock:
We're glad to have you here at CWE.
I'm glad you like it here....there's plenty of information, and plenty of friends to make. And the dinner party atmosphere just can't be beat. LOL. So kick up your feet, and hang out.Hopefully, one of the guys will bring around some GOOD coffee or something--I burnt it AGAIN--but hey, you might want to join in the barbeque, too. Check that out under the Wedding joke thread. Hehehe.
Seriously though, I was on Dilantin for 35 years. I understand the bone loss issues. They're finally beginning to seriously haunt me, though I haven't broken any bones lately, I have broken a fair number of them over the years (arms 6 times, and I forget how many times the rest of my various body parts. Oh, that sounds bad!)
I was taken off about 10 years ago, I think, but the damage has been done. My biggest problem from the Dilantin though, is the bleeding gums. They still bleed to this day if I try to floss them.
And if I do it on a daily basis, wellll.......YUK. They're not puffy and overgrown, which is a problem that many Dilantin users suffer, though.I also used Keppra, and only lasted 9 doses, (or was it days?) on it. That was the most horrible experience I'd ever had on a drug, but that was just me. In some ways, looking back, it was truly funny. In others--NOT. I wish you the best of luck with it, though. Keep in mind, that if you start having issues with emotional swings, some good Bvitamins, particularly B6, will help.
Anyway, I've got to go, but I thought I'd stop by and say hi. We ARE a friendly bunch here, and if you EVER need anything, feel free to let one of us know. We're just a PM (private message) away.
Meetz
:rock:
Many Thanks
Thanks so much for the replies. Seeing two posts first thing this morning gave me a real lift.
I woke up this morning feeling much better. Maybe(?) I've gotten over a hump here. Much less anxiety. Whew!
I started on the Keppra just about four weeks ago. I felt so awake on 1000 mg of Keppra compared to the Dilantin. Funny, I hadn't known the Dilantin had affected me so much. I started tapering off the Dilantin two weeks ago, after taking two weeks to reach goal dose on Keppra, and last Friday morning, I had some sort of partial seizure/myclonic jerk from hell thing, and the doc decided to increase the Keppra on Friday from 1000 mg to 1500 mg. That's when I started to feel the emotional side effects of Keppra. Yikes!
I'm a small person in general, but I've dropped from 108 lbs to 100 in four weeks - no interest in food, and what I do eat fills me up fast - and I have trouble sleeping. My doctor is incredible, and his nurse, who is just as great told me that people transitioning off Dilantin often experience insomnia for a while.
I didn't get to bed any earlier last night, but I slept a bit more deeply and didn't rocket awake at 5:15 a.m. like I have been doing. I woke up a bit before 6:00 but I was able to just rest a bit longer. I don't feel so muzzy-headed or panicky either. I think I'll know better around noon-ish which is when the morning dose should really be kicking in and the same time of day when I kind of crashed yesterday. I think I may take a day or two off work as well, to let me try to adjust some more without having to deal with clients (I'm a senior law advocate).
I really want Keppra to work for me. When I was diagnosed in 2002, it was available but hideously expensive, and since I was doing fine (I thought) on the Dilantin, I didn't see any reason to switch. I never developed any major dental problems on Dilantin, and it wasn't until the bone density scan showed bone loss and I went to a new doctor that changing to Keppra was suggested. I'm taking the generic version of Keppra, which is even less expensive than Dilantin, I do like this alert feeling with Keppra, and the weight loss isn't a bad thing since I like being trim and I dance, but I can see I'm going to have to make sure I eat purposefully since whatever I do put in is going to have to be good stuff.
I'd love it if the aphasia I've had to deal with under Dilantin would go away,too. Hated that. Imagine being in a hearing with a judge or writing a brief, and you get halfway through a sentence and the word you need just isn't there. I fake it pretty well, but it's not fun. Although it can be funny - a few weeks ago, I was talking to someone and needed to say "aircraft carrier." Couldn't find the word to save my soul. All I could do was use my hands to describe a sort of ship shape in the air and say, "you know, the big boat that planes take off and land on." Big boat??? WTF is that? Glad I wasn't doing anything like speaking in front of Congress. They would have thought I'd gone mad. Anyway, that's what it's been like on Dilantin.
My challenge, apart from the meds change, is going to be accepting that this is really real. I have epilepsy. That's just the way it is, and that means that sometimes things are not going to be "normal." I don't have to have a seizure every week in order to understand that this is part of my life (in fact, the partial seizure the other night made that abundantly clear), and I'm not faking it or making it up. I function really well. I can drive (though I wasn't allowed to drive for three months when I was first diagnosed) and hold down a mentally demanding job. So, again, I am grateful that I have not been as severely limited as other folks.
Anyway, thanks for the support. I can make decent coffee (Starbucks, anyone?), but I make a better cup of tea - milk, no sugar. I do make a pretty good Turkish coffee, though.
Thanks so much for the replies. Seeing two posts first thing this morning gave me a real lift.
I woke up this morning feeling much better. Maybe(?) I've gotten over a hump here. Much less anxiety. Whew!
I started on the Keppra just about four weeks ago. I felt so awake on 1000 mg of Keppra compared to the Dilantin. Funny, I hadn't known the Dilantin had affected me so much. I started tapering off the Dilantin two weeks ago, after taking two weeks to reach goal dose on Keppra, and last Friday morning, I had some sort of partial seizure/myclonic jerk from hell thing, and the doc decided to increase the Keppra on Friday from 1000 mg to 1500 mg. That's when I started to feel the emotional side effects of Keppra. Yikes!
I'm a small person in general, but I've dropped from 108 lbs to 100 in four weeks - no interest in food, and what I do eat fills me up fast - and I have trouble sleeping. My doctor is incredible, and his nurse, who is just as great told me that people transitioning off Dilantin often experience insomnia for a while.
I didn't get to bed any earlier last night, but I slept a bit more deeply and didn't rocket awake at 5:15 a.m. like I have been doing. I woke up a bit before 6:00 but I was able to just rest a bit longer. I don't feel so muzzy-headed or panicky either. I think I'll know better around noon-ish which is when the morning dose should really be kicking in and the same time of day when I kind of crashed yesterday. I think I may take a day or two off work as well, to let me try to adjust some more without having to deal with clients (I'm a senior law advocate).
I really want Keppra to work for me. When I was diagnosed in 2002, it was available but hideously expensive, and since I was doing fine (I thought) on the Dilantin, I didn't see any reason to switch. I never developed any major dental problems on Dilantin, and it wasn't until the bone density scan showed bone loss and I went to a new doctor that changing to Keppra was suggested. I'm taking the generic version of Keppra, which is even less expensive than Dilantin, I do like this alert feeling with Keppra, and the weight loss isn't a bad thing since I like being trim and I dance, but I can see I'm going to have to make sure I eat purposefully since whatever I do put in is going to have to be good stuff.
I'd love it if the aphasia I've had to deal with under Dilantin would go away,too. Hated that. Imagine being in a hearing with a judge or writing a brief, and you get halfway through a sentence and the word you need just isn't there. I fake it pretty well, but it's not fun. Although it can be funny - a few weeks ago, I was talking to someone and needed to say "aircraft carrier." Couldn't find the word to save my soul. All I could do was use my hands to describe a sort of ship shape in the air and say, "you know, the big boat that planes take off and land on." Big boat??? WTF is that? Glad I wasn't doing anything like speaking in front of Congress. They would have thought I'd gone mad. Anyway, that's what it's been like on Dilantin.
My challenge, apart from the meds change, is going to be accepting that this is really real. I have epilepsy. That's just the way it is, and that means that sometimes things are not going to be "normal." I don't have to have a seizure every week in order to understand that this is part of my life (in fact, the partial seizure the other night made that abundantly clear), and I'm not faking it or making it up. I function really well. I can drive (though I wasn't allowed to drive for three months when I was first diagnosed) and hold down a mentally demanding job. So, again, I am grateful that I have not been as severely limited as other folks.
Anyway, thanks for the support. I can make decent coffee (Starbucks, anyone?), but I make a better cup of tea - milk, no sugar. I do make a pretty good Turkish coffee, though.
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Hi Holin, welcome!
I agree, the adjustment to having a chronic ailment is not an easy one. I'm over a decade into my diagnosis. Sometimes I manage to forget I have E; other times it's front and center. But like you I have it "easy" -- many folks here have more difficult struggles and have to fight more courageous battles, and I'm humbled and inspired to read their stories.
I'll take a cup of Turkish coffee as long as you're offering...
Best,
Nakamova
I agree, the adjustment to having a chronic ailment is not an easy one. I'm over a decade into my diagnosis. Sometimes I manage to forget I have E; other times it's front and center. But like you I have it "easy" -- many folks here have more difficult struggles and have to fight more courageous battles, and I'm humbled and inspired to read their stories.
I'll take a cup of Turkish coffee as long as you're offering...
Best,
Nakamova
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Welcome Holin,
Having epilepsy or any chronic ailment is difficult to accept initially, but hopefully you're treatment will work long-term.
Not only do little kids have refractory seizures, some of us adults on this site do also. Yes the "E" word does apply.
Having epilepsy or any chronic ailment is difficult to accept initially, but hopefully you're treatment will work long-term.
Not only do little kids have refractory seizures, some of us adults on this site do also. Yes the "E" word does apply.
I am actually in the opposite boat. I am weening off Keppra back to Dilantin.
I was originally put on Dilantin 10yrs ago when I had my first & second seizure (with in an hour of each other). I was on Dilantin until I wanted to get pregnant with child #3 and I was switched to Keppra, as it was suppose to have less side effects for the baby. I have been on Keppra for 4 yrs now and I just can no longer take the "kepprage" that comes along with it. So along with that and having a seizure 2 months ago after only missing 1 day of medicine we are going to try and go back on Dilantin. However, I don't know how long that will last as it is already bothering my gums. I also started getting cavities after being on Dilantin for a while before. I never knew that Dilantin could affect the teeth so much until I kept telling the dentist that I never get cavities....
I actually gained weight while being on Keppra :-(
Also for me the generic Dilantin is cheaper than generic Keppra ($10 a month vs $26).
I just don't know what medication I should take since they all come with side effects.
I was originally put on Dilantin 10yrs ago when I had my first & second seizure (with in an hour of each other). I was on Dilantin until I wanted to get pregnant with child #3 and I was switched to Keppra, as it was suppose to have less side effects for the baby. I have been on Keppra for 4 yrs now and I just can no longer take the "kepprage" that comes along with it. So along with that and having a seizure 2 months ago after only missing 1 day of medicine we are going to try and go back on Dilantin. However, I don't know how long that will last as it is already bothering my gums. I also started getting cavities after being on Dilantin for a while before. I never knew that Dilantin could affect the teeth so much until I kept telling the dentist that I never get cavities....
I actually gained weight while being on Keppra :-(
Also for me the generic Dilantin is cheaper than generic Keppra ($10 a month vs $26).
I just don't know what medication I should take since they all come with side effects.
Jenniferinva
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Stuff/Hello
Hi there,
I too have just joined this site and I am finding that it is very helpful! I think I thought this was going away but it likes to remind me every now and than and even more frequently these days. I am trying to be very positive and remember how very blessed I am. It honestly stinks knowing I can never have a drink on the beach, heck...I can't even be the designated driver at this point. The Keppra did cause weight gain in me over the last three years but it was gradual, but the topamax that has been added has destroyed any appetite I had. I am trying to remain very active with nice long walks, bicycle rides (maybe not the best but a girls gotta live a little), and time to rest as well. I work full time as an RN (Manager at present) so I pray the memory issues don't interfere with my ability to practice. I find that I am talking aloud more and more to keep myself organized and my staff find humor in that as they know what I am up to at all times. It keeps me organized. I am getting good at lists. I thought I had it all together this morning but I did go off and leave the laptop at home. UGH! I didn't have the heart to ask my husband to go back home and get it. You see, he takes my 16 year old to school, drives me across town to work, then went back across town to hop on his Harley, to drive 30 minutes to work. Talk about going out of your way to get your wife to work! The man needs to ride! He has picked his wife up enough if you know what I mean! Warm thoughts to you all and enjoy your eve, Jennifer:e:
Hi there,
I too have just joined this site and I am finding that it is very helpful! I think I thought this was going away but it likes to remind me every now and than and even more frequently these days. I am trying to be very positive and remember how very blessed I am. It honestly stinks knowing I can never have a drink on the beach, heck...I can't even be the designated driver at this point. The Keppra did cause weight gain in me over the last three years but it was gradual, but the topamax that has been added has destroyed any appetite I had. I am trying to remain very active with nice long walks, bicycle rides (maybe not the best but a girls gotta live a little), and time to rest as well. I work full time as an RN (Manager at present) so I pray the memory issues don't interfere with my ability to practice. I find that I am talking aloud more and more to keep myself organized and my staff find humor in that as they know what I am up to at all times. It keeps me organized. I am getting good at lists. I thought I had it all together this morning but I did go off and leave the laptop at home. UGH! I didn't have the heart to ask my husband to go back home and get it. You see, he takes my 16 year old to school, drives me across town to work, then went back across town to hop on his Harley, to drive 30 minutes to work. Talk about going out of your way to get your wife to work! The man needs to ride! He has picked his wife up enough if you know what I mean! Warm thoughts to you all and enjoy your eve, Jennifer:e:
i read the post and think me too...
I did my best to function at work over the past couple years. I had migraines every day and started noticing I had to use post it notes to remind myself to do things, even take my breaks. People would look at me weird when I would stop talking mid-sentence and I would laugh it off "oh, brain fart" lol
The only medication that seems to work for me is Lamictal. The doses have been adjusted more times than I can count, but currently I'm on 500mg a day, along with 200 mg of Zonisamide. I've been on keppra but had to get off that because I slept for 14 hours a day.
I'm very grateful to my husband who has been patient with me over the past couple of years because I know that I am no longer the woman he married. In the beginning all I kept saying is "I want my old life back, tell me how to fix it." So acceptance was a big struggle for me.
I did my best to function at work over the past couple years. I had migraines every day and started noticing I had to use post it notes to remind myself to do things, even take my breaks. People would look at me weird when I would stop talking mid-sentence and I would laugh it off "oh, brain fart" lol
The only medication that seems to work for me is Lamictal. The doses have been adjusted more times than I can count, but currently I'm on 500mg a day, along with 200 mg of Zonisamide. I've been on keppra but had to get off that because I slept for 14 hours a day.
I'm very grateful to my husband who has been patient with me over the past couple of years because I know that I am no longer the woman he married. In the beginning all I kept saying is "I want my old life back, tell me how to fix it." So acceptance was a big struggle for me.
RobinN
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Holin - Welcome to CWE
it is very difficult to comes to grips with how this disorder will change your life.
My daughters quality of life began to spiral out of control when she was put on medication. After four attempts and multiple symptoms, I just knew there had to be a better answer for her.
We made nutritional changes, and she did neurofeedback and now med free we are hopeful that she will remain seizure free. She still is extremely sensitive at certain times of the month, and when she is not careful with her dietary choices. But she remains med free and seizure free.
There are ways to raise your seizure threshold. It does take commitment to finding what works for you.
it is very difficult to comes to grips with how this disorder will change your life.
My daughters quality of life began to spiral out of control when she was put on medication. After four attempts and multiple symptoms, I just knew there had to be a better answer for her.
We made nutritional changes, and she did neurofeedback and now med free we are hopeful that she will remain seizure free. She still is extremely sensitive at certain times of the month, and when she is not careful with her dietary choices. But she remains med free and seizure free.
There are ways to raise your seizure threshold. It does take commitment to finding what works for you.
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I'm alot like you seizure wise. Every few years I have a full out TC. In between, usually about 3 times a month or so, I have every other type of seizure known to man. I think if you can name the siezue I've probably had it.
Different meds work different on all people. I've been on a ton of them too, and I've had to change either the meds or the dosages because of the side effects. So far so good with the side effects of the ones that I'm on now. The only thing that I notice is being on keppra is that I have keprage and it doesn't take too much to set me off.
I also wonder why my husband stays with me at times. I think I'm partially lucky because I already had epilepsy when I met him so he sort of knew what he was getting himself into, but I know I've changed alot since we first met.
I know you'll find alot of help and support from the people on this site. There's always someone who can relate to you and give you great answers. People will even research things for you. I've even gotten help with things that aren't epilepsy related too.
Great to meet you, hope you find this site great and useful to you!
Different meds work different on all people. I've been on a ton of them too, and I've had to change either the meds or the dosages because of the side effects. So far so good with the side effects of the ones that I'm on now. The only thing that I notice is being on keppra is that I have keprage and it doesn't take too much to set me off.
I also wonder why my husband stays with me at times. I think I'm partially lucky because I already had epilepsy when I met him so he sort of knew what he was getting himself into, but I know I've changed alot since we first met.
I know you'll find alot of help and support from the people on this site. There's always someone who can relate to you and give you great answers. People will even research things for you. I've even gotten help with things that aren't epilepsy related too.
Great to meet you, hope you find this site great and useful to you!