:banana: Hi everyone im new to this and decided to join after visiting my epilepsy nurse today, i think i need help although i have epilesy since i was 13 years old i have been on different medications throughout, i am currently on keppra and epilim, after seeing the nurse today she has decided that she is worried about my weight since starting on the epilim i have gained weight and from what she says dont stand a great chance of losing it whilst on the drugs! her options for me were these i come off the epilim and start taking clonazepam and topiramate which she says will help with the weight issue but i read through other side affects of the topiramate and wasnt quite sure. Has anyone else been on this? and what do you think?. Sorry to dive straight in with a question just right now i dont know what to do for the best and from tomorrow i am supposed to start coming off the epilim thanku in advance xxx
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Hi and welcome to CWE,
I think you find this forum to be FULL of information that will help you.
I was. put on Keppra, I couldn't take it. Others on here, take Keppra with no problems.
I'm on Dilantin and clonazepam. Was put on Clonazepam. back in 2004.
I think you find this forum to be FULL of information that will help you.
I was. put on Keppra, I couldn't take it. Others on here, take Keppra with no problems.
I'm on Dilantin and clonazepam. Was put on Clonazepam. back in 2004.
MaeDae
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Welcome to CWE
I have no advice for you, but would like to wish you the best. I hope someone will respond soon. I have not be diagnosed as having seizure even tho my dr thinks simple/complex partial ones. I have taken keppra (only one 500mg tablet and it wiped me out) and am not currently taking any meds for the episodes. Again, welcome to CWE, here's a big HUG for you and I wish you the best, Welcome! : )
I have no advice for you, but would like to wish you the best. I hope someone will respond soon. I have not be diagnosed as having seizure even tho my dr thinks simple/complex partial ones. I have taken keppra (only one 500mg tablet and it wiped me out) and am not currently taking any meds for the episodes. Again, welcome to CWE, here's a big HUG for you and I wish you the best, Welcome! : )
Thanku for your replies the keppra i take controls the grand mal fits but didnt control the myoclonic seizures which is why i was put on the epilim, well im willing to risk the myoclonic at the moment in order to find something more suitable ie the clonazepam as im really struggling with the epilim. Thanku both for your welcomes and replies its much appreciated xx
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Hi Jeniann, welcome to CWE!
All the meds have side effects, and all the meds affect people differently. So it can be a bit of a crapshoot trying new meds. Sounds like it will be worth the effort of making the switch. I haven't tried Topirimate (also called Topomax), but you should be able to find useful info in these CWE threads:
http://www.coping-with-epilepsy.com/forums/f23/topamax-experience-16961/
http://www.coping-with-epilepsy.com/forums/f20/topamax-17481/
http://www.coping-with-epilepsy.com/forums/f20/going-back-topamax-15757/
http://www.coping-with-epilepsy.com/forums/f23/topamax-side-effects-17355/
http://www.coping-with-epilepsy.com/forums/f23/so-any-good-stories-about-topamax-14649/
and also here: http://www.askapatient.com/viewrating.asp?drug=20505&name=TOPAMAX
Best,
Nakamova
All the meds have side effects, and all the meds affect people differently. So it can be a bit of a crapshoot trying new meds. Sounds like it will be worth the effort of making the switch. I haven't tried Topirimate (also called Topomax), but you should be able to find useful info in these CWE threads:
http://www.coping-with-epilepsy.com/forums/f23/topamax-experience-16961/
http://www.coping-with-epilepsy.com/forums/f20/topamax-17481/
http://www.coping-with-epilepsy.com/forums/f20/going-back-topamax-15757/
http://www.coping-with-epilepsy.com/forums/f23/topamax-side-effects-17355/
http://www.coping-with-epilepsy.com/forums/f23/so-any-good-stories-about-topamax-14649/
and also here: http://www.askapatient.com/viewrating.asp?drug=20505&name=TOPAMAX
Best,
Nakamova
CQ:)
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Hi Jeniann,
Welcome to CWE.
I was on Topomax from 2006 - 2008 & the main side effect I found while on the Topomax was that I only had a small appetite. This wasn't a bad thing for me as when my neurologist 1st put me on the Topomax I was overweight (think I was approx 85kg) & ended up losing a lot of weight (got down to 70 kg).
My neurologist eventually replaced the Topomax with Keppra which hasn't given me too many side effects. I am currently on Tegretol & Keppra.
As Nakamova said side effects from the meds do affect everyone differently.
Good luck with the med change.
Welcome to CWE.
I was on Topomax from 2006 - 2008 & the main side effect I found while on the Topomax was that I only had a small appetite. This wasn't a bad thing for me as when my neurologist 1st put me on the Topomax I was overweight (think I was approx 85kg) & ended up losing a lot of weight (got down to 70 kg).
My neurologist eventually replaced the Topomax with Keppra which hasn't given me too many side effects. I am currently on Tegretol & Keppra.
As Nakamova said side effects from the meds do affect everyone differently.
Good luck with the med change.
Hello Jennjann
My 7 year old daughter is on Topamax and Keppra. She is only 41 pounds and I would love to put more weight on her. I can't tell if it is the Topamax or not. The only thing about Topamax is that it controls her seizures just not her aura's. So she on Keppra for aura's and Topamax for seizures. One positive about Topamax is that there are hardly no side effects. My daughter takes to it very well. No moody, tiredness, etc. Keppra has her moody and tired.
Hope this helps.
My 7 year old daughter is on Topamax and Keppra. She is only 41 pounds and I would love to put more weight on her. I can't tell if it is the Topamax or not. The only thing about Topamax is that it controls her seizures just not her aura's. So she on Keppra for aura's and Topamax for seizures. One positive about Topamax is that there are hardly no side effects. My daughter takes to it very well. No moody, tiredness, etc. Keppra has her moody and tired.
Hope this helps.
kirsty1327
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I stopped taking keppra because it made me so angry and depressed and have been taking topamax for 6 months now.It's stopped my seizures but not my auras so I'll be having another med added next week.It's definitely the best med I've tried so far but I have lost a lot of weight.the first 6 weeks were extremely hard-coming off the keppra and increasing the topamax.I felt stoned,was seeing things that weren't there,I didn't want to continue but now it's good.
I couldn't take Keppra also. I was seeming things that were not there. the Neour. that I was seening would not listen to me. I took myself off the mess.
I found another Neour. asked to be put back on Dilantin. This was after diff. Neur. tried all the meds. I wouldn't take any of them.
It has always taken 2 diff. meds. to control my seizures.
I found another Neour. asked to be put back on Dilantin. This was after diff. Neur. tried all the meds. I wouldn't take any of them.
It has always taken 2 diff. meds. to control my seizures.
thank you everyone for your advice and sharing your experiances with me i have decided i am going to try the two drugs recommended by the epilepsy nurse topiramate and clonazepam and see where we go from there as of today iam off the epilim and hopefully will get some answer from the doctor today as to when i can start the two xx
MaeDae
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I'm horrified of meds too. I took lyrica and it really seemed to help, however, not in a generic form yet, so too expensive for me. I've had lamotrigine & lamictal which was the last prescription I recieved, the side effect alone scared the baheba-jeba's out of me, and no, I never took it and yes, the episodes are still happening, I not only need neuro help, but psych help as well, they don't seem to be listening.
Have you thought of going to a diff. Neur.
I won't stay with a Neur. that won't listen to me, or least take the time to explain his reason for making a change.
I am seeing a Psychiatrist that my Neur. wanted to see, saying they know what meds. work together. I take Dilantin and Prozac causes Dilantin levels to raise.
WELLLL he presc. me Prozac (which was on the list of meds. I can not take.) He disagree with me, then looked in up in his BOOK, and saw this to be true. I requested a Compound of Prozac to try to see if this would work for me, It works great.
I made I don't how many calls to my other Dr., Neur, both said they would not, write this presc. because they don't know how to write a presc. for compound presc.
Finally my OB/GYN agreed to take care of this for me.
,
I won't stay with a Neur. that won't listen to me, or least take the time to explain his reason for making a change.
I am seeing a Psychiatrist that my Neur. wanted to see, saying they know what meds. work together. I take Dilantin and Prozac causes Dilantin levels to raise.
WELLLL he presc. me Prozac (which was on the list of meds. I can not take.) He disagree with me, then looked in up in his BOOK, and saw this to be true. I requested a Compound of Prozac to try to see if this would work for me, It works great.
I made I don't how many calls to my other Dr., Neur, both said they would not, write this presc. because they don't know how to write a presc. for compound presc.
Finally my OB/GYN agreed to take care of this for me.
,
MaeDae
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my insurance does not allow me to go outside of primary care dr and select specialist on my own. I must get a referral from my pmc dr. Here's my delima, im sure that the pmc dr is sharing with new specialist my background, which makes perfect sense, but it works against me, because they all ready a conclusion or prognosis? as to what may be wrong with me. If I could get a dr outside of my pmc dr's network, I may stand a better chance you know....but I don't forsee that happening. My insurance company contacted me a few months ago to tell my that I qualify for an anxiety program that they just started to "better assit their clients" and that based on my billing I was a perfect candidate. I learned that although I have some rights, I am coming across as non-compliant and not following thru with the treatment nor advise of my dr's. I dont want to do t hat, but agree strongly that a new neuro dr may be best for me. I biding time and waiting for either a tonic-clonic episode or the neuro dr. to say, "Ok I quit!
Of course I'm hoping for the last one... : )
Of course I'm hoping for the last one... : )
MaeDae
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I can get a new dr within the network, but the other dr in the network tells the new dr in the network about me. Before I even get a chance to say whats wrong, they're already telling me whats not.
kirsty1327
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I hope the topiramate works for you jeniann.It's funny but I just had epilim added to my topiramate this week to try and control my seizures better and add some weight to me as I'm skin and bones since starting on topiramate (hopefully it will help you out there too!!!) goodluck
Hi jeniann,
I am new to this forum as well but wanted to add my two cents. I have been on Lamictal (generic is lamotrigine) for 5 years, since an olfactory meningioma caused me to have a massive tonic clonic seizure. 10 days after the seizure, I had a bifrontal craniotomy to remove the lemon-sized tumor. The medication has worked very well for me, with virtually zero side effects. In fact, it has worked so well, that I managed to convince myself that I did not have a seizure disorder. Well, 11 days after reducing my daily dosage from 600mgs to 500mgs, I had a nocturnal seizure. I am back on the 600mgs and have been feeling much better ever since, with no evidence of any new seizure activity. I have not taken either of the medications you mentioned in your post, but I was on Dilantin for about 2 months after my surgery, which I found to have terrible side effects, including wearing the enamel off my teeth which caused them to turn brown. I could not help but wonder, if this is what it's doing to my teeth, what is it doing to the rest of my body? Additionally, with the Dilantin, I had terrible olfactory hallucinations (I have been anosmic since my surgery), which subsided substantially after starting the Lamictal. One issue I have had with the med, however, is that I found I could not take hormonal birth control, as it decreased the effectiveness of the Lamictal and caused me to have headaches and a return of the olfactory hallucinations. I hope that the medication you have been prescribed works for you; if it doesn't, I'd recommend asking your doctor about Lamictal.
Good luck to you!
SarahD
I am new to this forum as well but wanted to add my two cents. I have been on Lamictal (generic is lamotrigine) for 5 years, since an olfactory meningioma caused me to have a massive tonic clonic seizure. 10 days after the seizure, I had a bifrontal craniotomy to remove the lemon-sized tumor. The medication has worked very well for me, with virtually zero side effects. In fact, it has worked so well, that I managed to convince myself that I did not have a seizure disorder. Well, 11 days after reducing my daily dosage from 600mgs to 500mgs, I had a nocturnal seizure. I am back on the 600mgs and have been feeling much better ever since, with no evidence of any new seizure activity. I have not taken either of the medications you mentioned in your post, but I was on Dilantin for about 2 months after my surgery, which I found to have terrible side effects, including wearing the enamel off my teeth which caused them to turn brown. I could not help but wonder, if this is what it's doing to my teeth, what is it doing to the rest of my body? Additionally, with the Dilantin, I had terrible olfactory hallucinations (I have been anosmic since my surgery), which subsided substantially after starting the Lamictal. One issue I have had with the med, however, is that I found I could not take hormonal birth control, as it decreased the effectiveness of the Lamictal and caused me to have headaches and a return of the olfactory hallucinations. I hope that the medication you have been prescribed works for you; if it doesn't, I'd recommend asking your doctor about Lamictal.
Good luck to you!
SarahD