ChelseaMomof2
10-12-2005, 05:08 PM
I am currently doing research on a bunch of different anti-seizure meds so I can go in to see my neuro on the 18th armed with information since I may be going off my Topamax (due to significant hair loss). I have simple-partial seizures. I do not lose consciousness and they have been fully controlled with 200 mg of Topamax daily.
I would like to try Trileptal because I have read that it has a low amount of side effects compared with a lot of the other meds (including it's sister drug, Tegretol). Has anyone found this to be true? I would like to hear from anyone who has tried this drug. I would like to hear about the side effects.
Thank you very much.
I would like to try Trileptal because I have read that it has a low amount of side effects compared with a lot of the other meds (including it's sister drug, Tegretol). Has anyone found this to be true? I would like to hear from anyone who has tried this drug. I would like to hear about the side effects.
Thank you very much.
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Nella985
10-12-2005, 05:37 PM
I take 1200 mg/day of Trileptal and my neuro says my levels are on the low side of normal but I am usually able to control my seizures with low doses as well.
My side effects have been dizziness, thirst and slightly blurred vision. Nothing compared to the side effects that I expreienced on Lamictal. I had severe hair loss and swollen glands that have both disappeard since taking Trileptal.
I don't see very much information here on Trileptal very often but so far I have felt ok. I did have a breakthrough GM Seizure a few weeks ago but my neuro only had me on 900 mg/day then and she told me that it may happen on such a low dose so it wasn't too unexpected. You do have to watch your sodium levels on this, mine were a little low in May and that may have been a factor too. One side effect that my kids LOVED was the hiccups - I would have hiccups for about an hour after taking my pills twice a day. That only lasted for the first week or so though - kind of miss them now ;)
I understand the hair loss, I am only 28 and my kids are so young! I just didn't want to lose my hair if it wasn't necessary, it's a real blow to your self image. I wish you the best of luck! Come back and leave a note if you do end up on Trileptal. I am interested to know what you find out about this stuff!
My side effects have been dizziness, thirst and slightly blurred vision. Nothing compared to the side effects that I expreienced on Lamictal. I had severe hair loss and swollen glands that have both disappeard since taking Trileptal.
I don't see very much information here on Trileptal very often but so far I have felt ok. I did have a breakthrough GM Seizure a few weeks ago but my neuro only had me on 900 mg/day then and she told me that it may happen on such a low dose so it wasn't too unexpected. You do have to watch your sodium levels on this, mine were a little low in May and that may have been a factor too. One side effect that my kids LOVED was the hiccups - I would have hiccups for about an hour after taking my pills twice a day. That only lasted for the first week or so though - kind of miss them now ;)
I understand the hair loss, I am only 28 and my kids are so young! I just didn't want to lose my hair if it wasn't necessary, it's a real blow to your self image. I wish you the best of luck! Come back and leave a note if you do end up on Trileptal. I am interested to know what you find out about this stuff!
ChelseaMomof2
10-12-2005, 06:36 PM
Thanks for the quick reply. Can I ask how long you've been on Trileptal? I'm wondering if the side effects that you mentioned might go away if you haven't been on it for that long. I know that I had a lot of wicked side effects when I first started Topamax, but most of them went away with time.
Yes, I read about the low sodium thing. I guess I would just have to have my blood tested regularly for that.
Oh, the hair loss. It's just awful. Right now we aren't sure if I have a thyroid problem or if it's the Topamax (I'm seeing an endocrinologist in Nov.), but I have strong suspicions that it's the Topamax. I don't lose a lot during the day, but in the shower and when I comb it out afterwards, I lose ALOT. It's kind of scary. I am a 34 year old mom of 2 (my boys are 7 and 9).
Thanks so much for the info. on Trileptal. If I end up quitting Topamax, I am going to request Trileptal.
Yes, I read about the low sodium thing. I guess I would just have to have my blood tested regularly for that.
Oh, the hair loss. It's just awful. Right now we aren't sure if I have a thyroid problem or if it's the Topamax (I'm seeing an endocrinologist in Nov.), but I have strong suspicions that it's the Topamax. I don't lose a lot during the day, but in the shower and when I comb it out afterwards, I lose ALOT. It's kind of scary. I am a 34 year old mom of 2 (my boys are 7 and 9).
Thanks so much for the info. on Trileptal. If I end up quitting Topamax, I am going to request Trileptal.
EthanF
10-12-2005, 07:54 PM
I used to be on trileptol. I stopped though because for a couple hours after i took it each time i felt dizzy as if I had been spinning in circles for hours. The only way I could stop these feelings was by laying down. Since I was in college at the time it was a real bad thing. Sorry Im in a rush but if you want more details drop me a reply.
Best of luck to you
Ethan
Best of luck to you
Ethan
Nella985
10-12-2005, 08:30 PM
I have only been on it since the beginning of the year. It took some time to come down slowly from the Lamictal but it doesn't take long to work up on Trileptal which is nice (25 mg a week for Lamictal takes forever!)
I am hoping that the side effects will go away. I can't drive again after the GM until the end of December and the dizziness is getting more manageable now so I'm not really worried about it for the time being but I can see how it might have been very difficult for Ethan to try to manage that while in college. I guess that with these meds it's trading one side effect for another but I would rather be thirsty than bald if you know what I mean! :D
As far as the blurred vision, it's actually better than it was on the Lamictal, I only noticed it when I increased my dose. It's more like reading black on pure white that bothers me most. Could be bad eyes I guess but I like to blame the meds for as much as I can, it makes me feel like I'm semi-normal. :angel:
The hair loss that you have sounds just like mine. I was on Lamictal ( not known for hair loss ) for about 3 years before I had any problems and it happened really fast. All of the glands in my face and neck swelled up overnight. My hair started to fall out in clumps and I started to have some issues with memory. I went to another DR while waiting for my neuro appt and they did a full blood/urine work up and couldn't find anything wrong. We decided to change meds and within about 2 weeks of lowering the dose of Lamictal I noticed an improvement with the memory and glands and after about a month on only Trileptal my hair loss slowed dramatically, it's not a problem for me now at all. I recommend taking Centrum Silver, it has extra Zinc and Selenium (SP?) they don't cause stomach upset for me and I seem to be sensitive to multivitamins.
Let me know how you are doing, I know that it scares me to have to mess with meds. I'm sure you are going to do great but it's nice to have a place to feel understood.
Good luck!
I am hoping that the side effects will go away. I can't drive again after the GM until the end of December and the dizziness is getting more manageable now so I'm not really worried about it for the time being but I can see how it might have been very difficult for Ethan to try to manage that while in college. I guess that with these meds it's trading one side effect for another but I would rather be thirsty than bald if you know what I mean! :D
As far as the blurred vision, it's actually better than it was on the Lamictal, I only noticed it when I increased my dose. It's more like reading black on pure white that bothers me most. Could be bad eyes I guess but I like to blame the meds for as much as I can, it makes me feel like I'm semi-normal. :angel:
The hair loss that you have sounds just like mine. I was on Lamictal ( not known for hair loss ) for about 3 years before I had any problems and it happened really fast. All of the glands in my face and neck swelled up overnight. My hair started to fall out in clumps and I started to have some issues with memory. I went to another DR while waiting for my neuro appt and they did a full blood/urine work up and couldn't find anything wrong. We decided to change meds and within about 2 weeks of lowering the dose of Lamictal I noticed an improvement with the memory and glands and after about a month on only Trileptal my hair loss slowed dramatically, it's not a problem for me now at all. I recommend taking Centrum Silver, it has extra Zinc and Selenium (SP?) they don't cause stomach upset for me and I seem to be sensitive to multivitamins.
Let me know how you are doing, I know that it scares me to have to mess with meds. I'm sure you are going to do great but it's nice to have a place to feel understood.
Good luck!
EthanF
10-12-2005, 09:12 PM
I heard someone once tell me that some of the side effects of trileptal feel like being drunk accept with the bad breath and without the hangover. I do remember the dizzy feeling but I can't tell you if it felt like being drunk cause I have never been drunk before.
ChelseaMomof2
10-13-2005, 07:00 AM
Ethan, I certainly wouldn't like feeling drunk all the time, that's for sure, because I DO know what it feels like! :-)
Nella, wow, that's so weird how you didn't start losing your hair from Lamictal for years and then it suddenly happened. That's what happened with me with Topamax, except I didn't take it for so long. It's so strange how that happens. You would think that if it's going to make your hair fall out, it would happen in the beginning.
I was told to take Zinc and selenium, so I am taking an actual vitamin of both zinc and selenium instead of a multi-vitamin (like you had suggested). I have only been taking it for about 5 days. Haven't noticed any difference yet.
Someone on another board told me that they didn't lose any hair while taking Topamax, but once they started Trileptal, they started losing hair!!! I guess everyone's body is different and you just have to try different drugs to see what works for you. But it sucks because starting and stopping these drugs is so hard.
Thanks again and I'll keep you posted. I don't see the endocrinologist for my thyroid until Nov. 1st so I won't be making any drastic changes until he/she rules out any thyroid problems causing hair loss. I do see my neuro next week, though, to discuss a possible change.
Thanks for all your help.
Nella, wow, that's so weird how you didn't start losing your hair from Lamictal for years and then it suddenly happened. That's what happened with me with Topamax, except I didn't take it for so long. It's so strange how that happens. You would think that if it's going to make your hair fall out, it would happen in the beginning.
I was told to take Zinc and selenium, so I am taking an actual vitamin of both zinc and selenium instead of a multi-vitamin (like you had suggested). I have only been taking it for about 5 days. Haven't noticed any difference yet.
Someone on another board told me that they didn't lose any hair while taking Topamax, but once they started Trileptal, they started losing hair!!! I guess everyone's body is different and you just have to try different drugs to see what works for you. But it sucks because starting and stopping these drugs is so hard.
Thanks again and I'll keep you posted. I don't see the endocrinologist for my thyroid until Nov. 1st so I won't be making any drastic changes until he/she rules out any thyroid problems causing hair loss. I do see my neuro next week, though, to discuss a possible change.
Thanks for all your help.
debvid
10-13-2005, 02:16 PM
Hi
My daughter, Bonnie, is 15 years old. She has been on trileptal for 2 years. We are trying to get her off now. We are switching her to lamictal.
I do not like her on trileptal. Lots of side effects: blurred vision, memory, balance, COGNITIVE, BEHAVIOR etc.
When we took her off quickly to do a veeg, she had GM's in the hospital every 2 hours, I know this is the idea, to have seizures during the veeg, but she had never had GM's before. She has had seizures since at least 6 years old, probably before. At first we thought it was eye problems. Later when we tried to take her off slowly she started with the GM's again. We have been decreasing the dose slowly and putting her on lamictal for the past year. So far no problems. We are down to 75mg morn and 75mg night. It's past time to decrease again, but I am really scared to do the next decrease. That will mean no trileptal in the morn and 75mg at night! With the past history of taking her off trileptal I am really nervous. I will probably wait until Thanksgiving holidays, but then she has a cheerleading competion so I don't know. It seems that it is very hard for her to come off of trileptal. We haven't had this problem with other drugs. I don't want her to have anymore GM's.
Since we have the lamictal dose up she hasn't had any seizures, that I know about. She was acting a little strange last week at tumbling, I hope it wasn't the beginning of seizures. She won't tell me when she has one so if I don't catch her having one I might not know.
I'm not sure about the hair loss. She has very thick hair and it is thinner now. I do find hair in the tub, but I'm not sure if it is hers or her sister's.
On less trileptal: Cognitive skills and memory seem better, Behavior is way better, vision is better. She does have problems sleeping, don't know if it is the lamictal or just the seizures. She takes melatonin for that and it helps. The neuro put her on adderall to counter the side effects from the trileptal and lamictal, and that helps.
The neuro has stressed to Bonnie that she can NOT drink! Unfortunately this summer she did try drinking :nono: . We had to go to the hospital! Anyway, I tell her she is always on a natural drunk from her meds and condition! :dizzy:
Is the zinc and selenium for hair loss? I try to get Bonnie to take vitamins, especially b's. It's a fight to get her to take them. I don't understand, I get the pills for her hand her the water and she just doesn't want to take them.
I know different meds effect people differently. For us trileptal was a nightmare, Lamictal has been much better. Carbatrol controlled hers for years with very few noticable side effects, before it stopped working (puberty). That was one option, to try it again, if the lamictal didn't control them.
Good luck
Debbie
My daughter, Bonnie, is 15 years old. She has been on trileptal for 2 years. We are trying to get her off now. We are switching her to lamictal.
I do not like her on trileptal. Lots of side effects: blurred vision, memory, balance, COGNITIVE, BEHAVIOR etc.
When we took her off quickly to do a veeg, she had GM's in the hospital every 2 hours, I know this is the idea, to have seizures during the veeg, but she had never had GM's before. She has had seizures since at least 6 years old, probably before. At first we thought it was eye problems. Later when we tried to take her off slowly she started with the GM's again. We have been decreasing the dose slowly and putting her on lamictal for the past year. So far no problems. We are down to 75mg morn and 75mg night. It's past time to decrease again, but I am really scared to do the next decrease. That will mean no trileptal in the morn and 75mg at night! With the past history of taking her off trileptal I am really nervous. I will probably wait until Thanksgiving holidays, but then she has a cheerleading competion so I don't know. It seems that it is very hard for her to come off of trileptal. We haven't had this problem with other drugs. I don't want her to have anymore GM's.
Since we have the lamictal dose up she hasn't had any seizures, that I know about. She was acting a little strange last week at tumbling, I hope it wasn't the beginning of seizures. She won't tell me when she has one so if I don't catch her having one I might not know.
I'm not sure about the hair loss. She has very thick hair and it is thinner now. I do find hair in the tub, but I'm not sure if it is hers or her sister's.
On less trileptal: Cognitive skills and memory seem better, Behavior is way better, vision is better. She does have problems sleeping, don't know if it is the lamictal or just the seizures. She takes melatonin for that and it helps. The neuro put her on adderall to counter the side effects from the trileptal and lamictal, and that helps.
The neuro has stressed to Bonnie that she can NOT drink! Unfortunately this summer she did try drinking :nono: . We had to go to the hospital! Anyway, I tell her she is always on a natural drunk from her meds and condition! :dizzy:
Is the zinc and selenium for hair loss? I try to get Bonnie to take vitamins, especially b's. It's a fight to get her to take them. I don't understand, I get the pills for her hand her the water and she just doesn't want to take them.
I know different meds effect people differently. For us trileptal was a nightmare, Lamictal has been much better. Carbatrol controlled hers for years with very few noticable side effects, before it stopped working (puberty). That was one option, to try it again, if the lamictal didn't control them.
Good luck
Debbie
Nella985
10-13-2005, 04:08 PM
The drunk description is right on but it only lasts a few minutes. I take my pills at about 7:00am and get giddy by about 7:30 then wake up my kids about 7:45 and it's gone. If I have to take my evening dose while we are out I try to make sure I'm in the car with DH or with someone who will understand that I may be loopy for a few minutes.
One thing that I forgot to mention until reading Debbie's note about her daughter's behavior is that I do think that Trileptal has made my "monthly mood swings" more severe. Not terrible, but I never had problems with PMS that I had noticed before. I now make notes right on my kitchen calendar on grumpy days and try to count to 10 more often. My kids don't seem to mind me but they might just be scared to say so! ;)
Debbie, the Zinc and Selenium is for the hair loss, I have also noticed that my hair looks and feels better since taking the vitamins. If she hasn't noticed her hair falling out more than usual I guess it's nothing to worry about but if she is interested I can say that it has helped me. Lamictal was WONDERFUL for the first 3 years. I read somewhere that your levels can get toxic and I had major weight shifts after having my son so that may have attributed to the problems I had with it but my neuro isn't sure. I did have insomnia for a while but that faded. Good luck to you and your daughter, i'm sure everything will be fine.
One thing that I forgot to mention until reading Debbie's note about her daughter's behavior is that I do think that Trileptal has made my "monthly mood swings" more severe. Not terrible, but I never had problems with PMS that I had noticed before. I now make notes right on my kitchen calendar on grumpy days and try to count to 10 more often. My kids don't seem to mind me but they might just be scared to say so! ;)
Debbie, the Zinc and Selenium is for the hair loss, I have also noticed that my hair looks and feels better since taking the vitamins. If she hasn't noticed her hair falling out more than usual I guess it's nothing to worry about but if she is interested I can say that it has helped me. Lamictal was WONDERFUL for the first 3 years. I read somewhere that your levels can get toxic and I had major weight shifts after having my son so that may have attributed to the problems I had with it but my neuro isn't sure. I did have insomnia for a while but that faded. Good luck to you and your daughter, i'm sure everything will be fine.