hello to everyone.. Im new to this forum and I would like to introduce myself. My name is Alma. Im 25 yrs old going on 26. Ive been dealing with myoclonic seizures since middle school but I wasnt diagnosed with myoclonic seizures until 2009. In 2008 I suffered a grand mal seizure while at work. I had gone out the night before and drank alot of alcohol. I was also sleep deprived so when I went to work at 11 am the next day I was twitching so bad that I kept tripping and falling down. I dont even know how I managed to drive to work. While at work I suffered my first grand mal seizure. I was taken to the hospital and referred to a neurologist who Ive been going to for the past 3 years. I was first started on Lamictal but I had terrible side effects. I do believe though that my birth control might have contributed to my side effects. I eventually got taken off lamictal and put on carbatrol. I suffered from nausea and extremely bad headaches and so my gynecologist suggested Id get off the pill. Which eventually fixed my headaches. I have to say that ever since I started on seizure medicine I feel like my health and body have deteriorated alot. Im always tired and I get really moody or depressed when Im having some twitching. I have a 4 yrs old son and it has been a bit stressful dealing with seizures, taking care of my son, working full time and attending school part time. I honestly dont know if I can handle this any longer. I was in denial for a very long time. Ive always been very independent and I feel like I have to depend on medication in order to be order. But slowly Ive accepted it and realized that it could be worse. At least thats what alot of people tell me. I just went to the neuro today because my twitching has gotten really bad even after taking the prescribed dosage a day. He told me to start taking three pills a day now. My memory has been horrible lately and it worries me alot. The other day I found myself in the middle of the street and I cannot recall how I got there. Thank God I didnt have my son. Id hate to put his life at risk because of me. Coping with this disorder has been the hardest thing Ive had to do. There are days when Im soooo happy and there are days I just want to stay locked in my apartment. I dont know if thats side effects or just me.
Hello!!! :)
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Hi Alma1986, welcome to CWE!
Carbatrol might not be the best med for you. It's not recommended for myoclonic seizures and can even make them worse! The following is from the standard infosheet on Carbatrol:
You might also want to have your Calcium/D levels checked since deficiencies of those nutrients have also associated with myoclonic seizures.
Best,
Nakamova
Carbatrol might not be the best med for you. It's not recommended for myoclonic seizures and can even make them worse! The following is from the standard infosheet on Carbatrol:
Upping your dose won't help things. I would definitely ask your neuro about other options (or find a different neuro who is more familiar with AEDs!).
You might also want to have your Calcium/D levels checked since deficiencies of those nutrients have also associated with myoclonic seizures.
Best,
Nakamova
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Hello Alma1986!
I've had epilepsy since 2003 and I've been on so many different meds and dosages that I've lost count. I've had so many different side effects with them too. Some made me so tired that I didn't want to get out of bed, some made me not want to eat and others made me want to eat everything in sight. Some made me really angry and crabby, ready to bite just about everyone's head off, that is from the Keppra that I'm on though I think.
I was on Depo Provara, the shot, for birthcontrol and never had any problems with it. That might be something that you might want too look into if you want to keep taking birthcontrol.
You'll find alot of help on this web site and see that there are alot of people who are going through the same things that you are, so you know you aren't alone in all this.
It took a while to figure out what meds and dosages was right for me, even now the neuro will still adjust them from time to time.
I've had epilepsy since 2003 and I've been on so many different meds and dosages that I've lost count. I've had so many different side effects with them too. Some made me so tired that I didn't want to get out of bed, some made me not want to eat and others made me want to eat everything in sight. Some made me really angry and crabby, ready to bite just about everyone's head off, that is from the Keppra that I'm on though I think.
I was on Depo Provara, the shot, for birthcontrol and never had any problems with it. That might be something that you might want too look into if you want to keep taking birthcontrol.
You'll find alot of help on this web site and see that there are alot of people who are going through the same things that you are, so you know you aren't alone in all this.
It took a while to figure out what meds and dosages was right for me, even now the neuro will still adjust them from time to time.
OMG all this time I kept thinking to myself this medicine is getting me sicker. I just know it. I literally feel like its deteriorating me and Im only 25 :/ Im definitely going to go see a different neurologist. As a matter of fact the neurologist that prescribed me carbatrol never diagnosed me with anything. I went to a second neurologist for a second opinion and he was the one that diagnosed me with myoclonic seizures. But for some reason I just went back to my first neurologist. well Im so glad I came accross this website and thank you guys for this info. I will definitely schedule an appt with another neurologist. And the depo shot is also something i will look into as well. thank you guys I will keep you updated on what the neuro tells me.