General questions. still new to this, so I post a lot
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With the meds that I'm on now the only one I have a problem with (I guess you can call it that) is Keppra. I can get angry VERY EASY, people call it keprage. There are so many places that I've gone off on people for the simplest things. My family usually has to stop me before I punch someone in the face. I've told my neuro that I'd like to get off of it but he's a little hesitant to do so because my seizures are a lot better than they used to be.
Many of my meds, not sure which ones, make me tired. If I don't get enough sleep, epically for days in a row, I'm almost sure to have a seizure.
Stress is something else that will bring on seizures. My grandfather who is in his 80's and I'm very close with recently fractured his back. He can barely move with any help and sometimes that doesn't even work. He's on pain meds that comply dope him up. He barely knows his left foot from his right hand and has a hard time remembering people and things. I just know a seizure is on it's way. I try to keep myself calm and not worked up about things but that's easier said than done sometimes.
When I was first diagnosed at the age of 26 I was treated like the biggest child. I'm surprised that the family didn't get one of those child leashes for me so I couldn't be out of their sight. They didn't want me doing anything. If I went in the shower someone usually sat in the bathroom with me to make sure I didn't have a seizure when I was in there. I can keep going on with the list but it would take too long to type.... Finally after awhile they did calm down about things but there are things that they still don't want me to do.
I don't know how long it took me to get positive about my life but if you work on it, it will happen.
Many of my meds, not sure which ones, make me tired. If I don't get enough sleep, epically for days in a row, I'm almost sure to have a seizure.
Stress is something else that will bring on seizures. My grandfather who is in his 80's and I'm very close with recently fractured his back. He can barely move with any help and sometimes that doesn't even work. He's on pain meds that comply dope him up. He barely knows his left foot from his right hand and has a hard time remembering people and things. I just know a seizure is on it's way. I try to keep myself calm and not worked up about things but that's easier said than done sometimes.
When I was first diagnosed at the age of 26 I was treated like the biggest child. I'm surprised that the family didn't get one of those child leashes for me so I couldn't be out of their sight. They didn't want me doing anything. If I went in the shower someone usually sat in the bathroom with me to make sure I didn't have a seizure when I was in there. I can keep going on with the list but it would take too long to type.... Finally after awhile they did calm down about things but there are things that they still don't want me to do.
I don't know how long it took me to get positive about my life but if you work on it, it will happen.
Valeriedl I was living with my grandmother but she was so bad I had to move back in with my mom, it was so embarrassing she was saying she wanted my boyfriend to shower with me so I wouldn't be alone. Awkward. My mom won't leave me in the house alone, but she's not that bad. I think they're nervous because I was in status for so long, so hopefully after enough time goes by that I don't go back into status they'll ease up
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I can relate to EVERYTHING you just posted!!!!!!
My family pretty much treats me like a normal person and lets me go shopping, in the same store, by myself. It did take a few years though. I was actually surprised once when I went to the mall (which is pretty small) with my dad. He told me to go ahead and do my shopping, he'd be in Sears if I needed him. He did call me on my cell every so often, half hour maybe, to check in with me. I can't tell you how much of a 'big girl' I felt after that!
My husband on the other hand still doesn't want me out of his sight when we go out and it drives me crazy! I'm surprised that he doesn't come in dressing rooms with me when I try on clothes!
The aunt I was sunbathing with has bipolar disorder and she swears sunbathing and the tanning beds help her moods, so if they make you feel better than use the tanning bed just try to bed safe about it, not too frequent , not too long, and don't use tanning lotion use sunscreen.
There's some science to back it suggesting that vitamin D can help improve mood and sun rays do produce vitamin D.
I had stopped taking Lamictal because I had been seizure free long enough to try weaning off it if I wanted to back in 2009. I was still in college and living on campus so it was a good time to give it a try because if I did have a seizure there wasn't anywhere I had to drive since I walked to class. I was seizure free for awhile until recently.
After I started having seizures again I almost asked her about going back to the Lamictal since it worked for me before the only thing that stopped me is Topamax has a better know record with migraines and I've had fewer migraines with it and if I could take one medication for both it could be worth trying. Now, if once I get to a therapeutic dose with Topamax I'm still having seizures it would probably be worth bringing up going back to the Lamictal.
Lamictal is considered the best one to take is your going to get pregnant which I thought I was a couple of years from but now I think it's going to be a bit further down the road than that, but it would be the one I'd like to be one when I was pregnant if I decided to have a child.
So that I can work and get back to school I definitely need something for the migraines. At this point we 're in the tinkering medication phase so I might end up back on it.
If I do decide I want to get pregnant I'll probably try to get off everything but Lamictal and Prozac and just not work if the migraines get too bad, migraines don't pose a danger to the baby they 're just unpleasant for me, but if I do have a baby it will be the most planned pregnancy ever. I'm getting my IUD in the next few weeks. I was really apprehensive about it at first, but seizures are the surprises I need for now.
There's some science to back it suggesting that vitamin D can help improve mood and sun rays do produce vitamin D.
I had stopped taking Lamictal because I had been seizure free long enough to try weaning off it if I wanted to back in 2009. I was still in college and living on campus so it was a good time to give it a try because if I did have a seizure there wasn't anywhere I had to drive since I walked to class. I was seizure free for awhile until recently.
After I started having seizures again I almost asked her about going back to the Lamictal since it worked for me before the only thing that stopped me is Topamax has a better know record with migraines and I've had fewer migraines with it and if I could take one medication for both it could be worth trying. Now, if once I get to a therapeutic dose with Topamax I'm still having seizures it would probably be worth bringing up going back to the Lamictal.
Lamictal is considered the best one to take is your going to get pregnant which I thought I was a couple of years from but now I think it's going to be a bit further down the road than that, but it would be the one I'd like to be one when I was pregnant if I decided to have a child.
So that I can work and get back to school I definitely need something for the migraines. At this point we 're in the tinkering medication phase so I might end up back on it.
If I do decide I want to get pregnant I'll probably try to get off everything but Lamictal and Prozac and just not work if the migraines get too bad, migraines don't pose a danger to the baby they 're just unpleasant for me, but if I do have a baby it will be the most planned pregnancy ever. I'm getting my IUD in the next few weeks. I was really apprehensive about it at first, but seizures are the surprises I need for now.
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I hear you on that cpuerini!
I haven't been able to drive for 11 years now. I live in the country so it's hard to just go for a walk because there really isn't any place to unless I walk through the corn fields. I used to go to the park with my cousin, he drove, and walk for exercise. I started to have back problems a few years ago and it hurt to bad to walk so I had to stop. He started doing other types of exercise so didn't want to walk any more. I've put on a ton of weight since I can't get out and do it.
I'd love to join a gym or just go back to the park and walk but I can't because I can't get there.
I've wanted to run out to the store and get a gallon of milk so many times but can't and have to wait till someone can pick it up or take me. I've wanted to punch a wall so many times because of this. I actually don't know how I've managed to not punch the wall as many times as I do. I guess if I did there pretty much wouldn't be any walls left in my house!
Kaelieh, I'm glad you mentioned the IUD- I'm on the pill right now, which I know isn't doing much because of the other meds I'm on, but it helps with me with migraines and cramps. I considered getting an IUD for the birth control effect, but my neurologist said it wouldn't work because it partly works on hormones too. Someone on another thread told me he was wrong, but maybe it's just the certain meds I'm on?
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On the alone note, I'm kind of surprised by the how much my boyfriend does leave me alone.. I don't think he really knows that much about epilepsy. I'm not complaining though, I like my me time and I know what precautions to take while I'm not controlled. I think my family would flip out on them if they knew though... But to some extent I think the hovering does more harm than good.. I.e. Drives us crazies and makes us want to take risks we should because we're never let be.
Valeriedl ugh lol when I lived with my grandmother I was in the city, now that I'm with my mom I'm in the middle of nowhere. But I'd still like to go for a walk just for the exercise and to be alone for a bit. I wish I still lived in the city, I'm hoping I'll be able to drive again soon. I want to eventually go back to school and work, and the nearest bus stop is over a mile away. Ugh.
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I don't know if I said that I was on Depo-Provera before and after I had epilepsy. The main reason I went on it was because I had unregular periods, spotting and horrible cramps even when I was on the pill.
I didn't have to have make any changes with the Depo-Provera, or with any of my other meds after I was diagnosed. Both my gyno and neuro said it was ok to take. Everyone is different so how you may react with it could be different than me.
I did have a hysterectomy because I didn't want to have children, mainly because of having epilepsy, and didn't want the chance of becoming pregnant.
I didn't have to have make any changes with the Depo-Provera, or with any of my other meds after I was diagnosed. Both my gyno and neuro said it was ok to take. Everyone is different so how you may react with it could be different than me.
I did have a hysterectomy because I didn't want to have children, mainly because of having epilepsy, and didn't want the chance of becoming pregnant.
About going for a walk, you could go all Garden State and where a helmet and not go too far.. I think that would be safe, plus like you said most if your are nocturnal or right after waking. You should be fine for a short walk.
I had to get off the pill because I get migraine with aura and that makes my stroke risk higher. I also work in a casino, so even though I don't smoke I'm exposed to it, so it was definitely advised.
There's 3 IUDs on the market. Paraguard (spelling?) is copper and contains no hormones so AEDs don't effect it, my cousin w/E uses this one, there's Minera that's plastic with progestin that's released on in the uterus so they don't think AEDs effect it and it's really the physical shape of the device that's preventing pregnancy. The copper or the hormones is kind of like a back up method.. So you should be able to use either.
Best advice is consult with an OB/GYN who is used to treating women with epilepsy they know more about birth control than neurologists do.
The third IUD that just came out is called Sklya it 'a smaller than the other two, is plastic and was designed to be used in women who have never given birth, it does have a lower dose of hormones than Minera, so unless the OB-GYN has trouble placing minera, I would still start with that one.
One other birth control option would be Depo-Provera, the shot, women with epilepsy can usually use the shot with no problems other than having to get it every ten weeks instead of 12.
Now, if you ever do get fully controlled on just Lamictal, Lamictal doesn't make the pill less effective, but with the pill you often need a higher dose of Lamictal.
I had to get off the pill because I get migraine with aura and that makes my stroke risk higher. I also work in a casino, so even though I don't smoke I'm exposed to it, so it was definitely advised.
There's 3 IUDs on the market. Paraguard (spelling?) is copper and contains no hormones so AEDs don't effect it, my cousin w/E uses this one, there's Minera that's plastic with progestin that's released on in the uterus so they don't think AEDs effect it and it's really the physical shape of the device that's preventing pregnancy. The copper or the hormones is kind of like a back up method.. So you should be able to use either.
Best advice is consult with an OB/GYN who is used to treating women with epilepsy they know more about birth control than neurologists do.
The third IUD that just came out is called Sklya it 'a smaller than the other two, is plastic and was designed to be used in women who have never given birth, it does have a lower dose of hormones than Minera, so unless the OB-GYN has trouble placing minera, I would still start with that one.
One other birth control option would be Depo-Provera, the shot, women with epilepsy can usually use the shot with no problems other than having to get it every ten weeks instead of 12.
Now, if you ever do get fully controlled on just Lamictal, Lamictal doesn't make the pill less effective, but with the pill you often need a higher dose of Lamictal.
Kaelieh, I should be fine for a walk, but my family isn't ok with it.
I'll definitely look into the Paraguard, thanks for the tip. I'm not sure who I would go to for a different OBGYN, but maybe my neurologist can suggest one. I'm already on 300mgs of lamictal... but I'll mention it to my Dr
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I'll definitely look into the Paraguard, thanks for the tip. I'm not sure who I would go to for a different OBGYN, but maybe my neurologist can suggest one. I'm already on 300mgs of lamictal... but I'll mention it to my Dr
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It also stops your periods so you don't have any. This was one of the main reasons I went on it because of all the problems I was having when I was on the pill.