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I hate keppra and I don't think i need to be!!!

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Epilepsy
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rwheeler125
New Member
Joined : Jul 2011
Posts : 1
Posted 7/22/2011 12:27 PM (GMT -7)
So, my medical history is long but I'll try toshorten it up for you. I had a brain tumor when I was four (it was a craniopharyngioma). Since then I’ve been on full hormone replacement because my pituitary gland died during that procedure. Anyway, It came back twice as a cyst in the same part of my brain. Those cysts where treated using radioactive phosphorus and went away on their own. However I had my first seizure in 1999 one random morning as I was getting ready to go to school. I had an EEG done and my neurologist put me on Depakote and I gained about 50 to 60 pounds because of the side effects. then in 2000 I had a brain tumor wrap itself around my optic nerve and partially blinded me in my right eye. When I went to see my Neurologist and he heard about the tumor he did another EEG and I had normal results (so he took me off the Depakote). Anyway, I had another tumor in 2001 in the same place near my optic nerve which made me completely blind in my right eye. Anyway, since then I have been seeing my Neuro-ophthalmologist and getting MRI’s every year (so I see one Dr. every 6 months) just because the last tumor came up really fast and did some damage. Anyway, at the beginning of the year, I had another grand mal seizure out of the blue one morning. It was just like my last one where I afterword’s I had no Idea what had happened, and I didn’t even remember getting out of bed that morning. So I got rushed to the hospital and put in the Neuroscience ICU for the night and got an MRI in the process. The reason for this is that my step-father is a Neurosurgeon (the one who did my first operations) and he thought I might have another tumor so he wanted me ready to go into surgery if I did. Anyway, the MRI was clean as a whistle with no tumors, cysts, or anything else out of the usual (except for a dilated artery that I’ve had since my very first surgery). So now I see a new Neurologist who put me on Keppra 750MG twice a day because my latest EEG I had showed “blips” on the right side of my brain.
So, now that that's out of the, I can get to what I wanted to talk about to start out with. I HATE my Keppra with a passion, I still take it and what not, but the side effects are killing me (figuratively). I just finished my last year of college and I know I could have done better the last semester if it weren’t for the Keppra side effects. I just feel like I’m living in a dream, I don’t sleep well at night, and, after being on it for over 7 months, I still get dizzy and trip all the time. To top it off, I really don’t think I need the meds to start out with, I don’t and have never had any electric shock sensations, confusion, or any other side effects of Epilepsy. The only thing that I can think of that may be pertinent is that right after I had my Lap Band surgery in 2010 I feel lightheaded and dizzy when I stand up too quickly, but I just attributed that I to having lower blood sugar / lower blood pressure from not eating all the junk I used to. Personally, I kinda wish that I did have a small tumor that caused it so that they could go in there and cut it out so I wouldn’t have to take Keppra anymore… Anyway, I would love any suggestions as to what you think I should do; I already plan to talk to my neurologist about switching to Keppra XR so I won’t have to take it at night (because I struggle with remembering to take that pill every night 12 hours from when I took it in the morning). Thanks in advance,
Richard!
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mr.green
New Member
Joined : Nov 2011
Posts : 2
Posted 11/5/2011 3:53 AM (GMT -7)
well im sorry to hear that.in fact i was going out to buy keppra and chamge from carbamazepine because i think its giving me arthritis.its a pain to walk.i cant believe there isnt a forum we can just talk about the drugs.we a re being kept in the dark about alotr of these side effects and the doctors just prescibe pain killers like diclofenac that destroy ur liver or kidney or both.im real confused and pissed off.i hope this note finds u feeling better than i do.jem
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jenlea26
New Member
Joined : Nov 2011
Posts : 1
Posted 11/17/2011 2:02 PM (GMT -7)
hey richard- I understand your frustration! you have been through a lot in your life! Thank God you are still with us! I want you to put your emotions and frustrations aside for a minute. I was diagnosed with Epilepsy in the third grade so I have done a LOT of research over the years on the causes and on what is seizure is and I have been to my neurologist hundreds of times. EEG's are my life! I see where you are and understand your feelings completely. This medication is ruining my body! I cannot see straight because I have double vision. Not only is it a symptom of Epilepsy to have a lack of concentration but also if my medication?! ***! Right? Have I got you loud and clear? Did you know that if you have had more than one seizure you are considered to have Epilepsy. I have had seizures for 30 years and have never felt the electric shock sensations in my own brain... What causes seizures Richard? Genetics, brain trauma, and brain tumors. If you have one of these you are at high risk. You are young. You are about the same age I was when I went through a phase of thinking I didn't need this stupid medication anymore... Try it Richard. I promise you dizziness and lightheadedness are so much better then seizures....that can cause more brain damage...or Status-Epilepticus which can cause death. So this is the thing... we kinda have a rotten apple in one hand and a rotten orange in the other. We can say our doctors don't know anything... and to be fair... they don't experience what we do... but they have a lot more knowledge about our bodies than we do. Ask lots of questions Richard. If you are angry about your situation talk to someone now because it won't get better. All medications have side-effects. Depakote is a witch isn't it? I gained but stayed on it and after 10 years my organs started shutting down. Lithium!!!
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mercyme
Regular Member
Joined : Feb 2005
Posts : 310
Posted 11/29/2011 7:09 PM (GMT -7)
Hi Richard. My heart goes out to you. I totally understand what you mean. life has a way of throwing us curve balls and we have to make the best of what we have. I was diagnosed with epilepsy when I was just 11, I actually think I was much younger when the seizures started but my parents didn't recognized the symptoms. I dealt with complex partial seizures for over 25 years of my life. In 2002 I underwent brain surgery to remove scar tissue that had been causing my seizures for all of those years! I was angry at first that why in the world did the doctor not know that I had all that scar tissue and not send me to a neuro surgeon! But today I am happy to say I am seizure free for the most part. I have had a few auras but no full blown seizures. I deal with chronic daily migraines and have tried almost every medication my neurologist knows to give me. I went today to the pharmacy to find out the neurologist had called in frova a triptan migraine med which I can not take. All the triptans like maxalt, relpax, imitrex, zomig, cause my chest to get tight and my throat feel like it's closing in. I am so frustrated just like I was when I was dealing with all those seizures, but I know there is hope and that's what I hold on too! Right now I take lamictal for seizure control and klopian, zanaflex, toradol and phengran to help with these terrible migraines. I think there may be a nerve being compressed in my head due to the way the skull healed. Doctor thinks maybe more scar tissue has formed and to beat it all my insurance has turned down the surgery to remove the scar tissue that may be causing me all these migraines. But know that I feel your frustration and will say a prayer for you!!

God Bless,

Mercyme :)
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Shawnna
New Member
Joined : Feb 2012
Posts : 11
Posted 2/2/2012 2:08 AM (GMT -7)
My son takes Keppra and has not had any side affects.

Find a neurologist you trust and explain the impact Keppra is having on you. There are many medications for treating Epilepsy.

Best wishes to you!
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