Keppra

Posted by Ryman @ryman, Aug 29, 2017

I have been prescribed Keppra for seizures. I have never actually had a seizure but the neurologist says that some of the weird things going on with me are related to seizures. I really don’t get on well with meds and am concerned about this one. Has anyone else taken it? Thank you.

Has anyone male or female had any sexual dysfunctions since taking this medication or any other AED for that matter?

Have you ever checked your Vitamin D level? If low supplemental D might help with side effects and your health in general.

@robertjr

ryman,what do you get that related to seizures,as for the keppra not gonna brag about it ,three grnd mals in a month but atleast no bad migranes after the seizure so far small head aches.The was one of main things withdilantin,badheadaches lasted for days.

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@ryman
Your visual and smelling things could be focal seizures.

@robertjr

ryman,hope youget on something soon,i have been on some type ofmed for grandmals since i was 5 Had a lot of sides through the years,but a few side s area better thanthe g.randmal seizure and migranes and memory loss and all theother stuff from a seizure,convultion so strong still have trouble walking a week later.

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@robertjr
Are you taking Dilantin (Phenytoin) by chance? It can cause Ataxia which could explain your balance issues. Did you have problems walking prior to seizure?

@ahernandez

Hi, I’m 34yrs old and had my first seizure last March. I am also on Keppra. But also on a couple other meds. I was diagnosed with Autoimmune Epilepsy in Sept after many tests. I definitely understand “the blues” feeling. Some days are good and some I just want to stay in bed all day. And before my diagnosis the not knowing really effected me. Just take it one day at a time ( hard to do I know). Since being diagnosed I still have a hard time with “if or when will I have a seizure again”. Its very scary and if you ever want to talk you can PM too. Hope you find answers.
Amanda

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@ahernandez
Hi there, I’m just curious about your Epilepsy, would you mind answering some questions. Do you have an inflammatory disease or did you have an infection prior to your seizure? Have you ever been diagnosed with Encephalitis? Did you have a spinal tap and or pet scan? How did your doctor diagnose your Epilepsy? Are taking any immunosuppressive drugs? Hope you don’t mind the interrogation but I’ve had Epilepsy for 51 years and I’m interested in all types and manifestations of the condition. Thank you in advance for your assistance.

@ahernandez

Hi, I’m 34yrs old and had my first seizure last March. I am also on Keppra. But also on a couple other meds. I was diagnosed with Autoimmune Epilepsy in Sept after many tests. I definitely understand “the blues” feeling. Some days are good and some I just want to stay in bed all day. And before my diagnosis the not knowing really effected me. Just take it one day at a time ( hard to do I know). Since being diagnosed I still have a hard time with “if or when will I have a seizure again”. Its very scary and if you ever want to talk you can PM too. Hope you find answers.
Amanda

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I haven’t been told I actually have epilepsy. I passed out during a sleep study and my heartbeat went to 20. They sent me to a neurologist and she said the hallucinations are a symptom of seizures in the brain. I just see forms and lights but have for years. I had Lyme disease that went undiagnosed for over a year. I also have had Fibromyalgia for years. Other than the Keppra I have not been prescribed and the antibiotic I took for Lyme, I haven’t been prescribed anything like that. I had my thyroid removed years ago and lately am having trouble getting the thyroxine right. I have had all kinds of scans and a spinal tap. Presently, I have iron deficiency anemia and am taking iron infusions for that. Don’t know if that helps but I don’t mind questions.

@jakedduck1

Have you ever checked your Vitamin D level? If low supplemental D might help with side effects and your health in general.

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My blood was checked pretty thoroughly recently and I was not told the D is low. I have taken Calcium and Vitamin D for years due to osteoporosis.

I have been on keppra for years and l was told long time ago l had seizures since l had encephalitis. Then l went to a new neurologist because l kept falling out and like you l hallicuated several times. Then l did my research because l was told l had anemia, and autoimmune disease.but know clear diagnosis because the new neurologist said l had noneptilect seizure. Then l had encephalopathy. After l did my research l found out l had autoimmune encephalitis and encephalopathy and the one of the symptoms are seizures. So now l take 2 seizure meds because the neurologist said we will keep you on keppra for a little while and then take you off. It's been 4yrs and l am still taking it. So l would look up autoimmune encephalitis and the mayo clinic has stories of people who has encephalitis and all the new articles because they are trying to get the word out to doctors about autoimmune encephalitis also you can read a book about a person who went through it. It's called Brain on Fire. You have to be your own advocate and don't stop until you get the answers you want. God Luck and God blessing to you.

@robertjr

ryman,hope youget on something soon,i have been on some type ofmed for grandmals since i was 5 Had a lot of sides through the years,but a few side s area better thanthe g.randmal seizure and migranes and memory loss and all theother stuff from a seizure,convultion so strong still have trouble walking a week later.

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@robertjr l was taking lamictal and l guess l should be still taking it but since l know it from my liver and if my ammonia level are high but l haven't had a seizure since last year. And now l dont see a neurologist anymore. I only see my general practice doctor , hematologist, pulmonologist , rheumatologist and of course my opthamologist. But no l didn't have any prior seizure since my encephalitis and my first neurologist diagnosed me and l trust him but now my doctors are seeing he was correct. Because when had them l couldn't remember anything and they thought it was psychiatric but if you look at autoimmune encephalitis th azad t is one of the symptoms. I was.told on this sight about an attorney who had autoimmune encephalitis and his wife was a nurse and they thought the same thing it was psychotic but she kept pushing them to believe them and he got the help he needed and he doing okay but he still has some memory problems.

I have been diagnosed by Mayo Clinic as having Amyloidosis. I am now experiencing numerous falls. I just started taking Keppra yesterday to see if there is some relationship with seizures or to see if Keppra will minimize the falls. The falls seem to result from tremors in the hands, arms and legs in that order. Has anyone else had a similar experience and have you had any success with medication?

Be careful with Keppra, don’t count on it as a cure all. It can cause problems too. It can cause weakness and problems walking along with Dizziness, numbness, generalized weakness and tiredness all of which can lead to falls as can all Anticonvulsants.

@jakedduck1

Have you ever checked your Vitamin D level? If low supplemental D might help with side effects and your health in general.

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@ryman
I don’t know how old you are I’m just say the following just in case you are older, like me lol. The newest research is showing taking calcium and vitamin D doesn’t help build your bones stronger. Although they say to continue with it if your already taking it. Vitamin D helps get calcium into the bones and has many other benefits too. Not yet sure what I think of the latest news yet. Will have to go to use the computers at university medical libraries.

@bensondexter

I have been diagnosed by Mayo Clinic as having Amyloidosis. I am now experiencing numerous falls. I just started taking Keppra yesterday to see if there is some relationship with seizures or to see if Keppra will minimize the falls. The falls seem to result from tremors in the hands, arms and legs in that order. Has anyone else had a similar experience and have you had any success with medication?

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Welcome to Connect, @bensondexter
I'm confident that you will get response about Keppra from members sharing in this discussion. I also wanted to let you know that members are talking about amyloidosis in the Blood Cancers & Disorders group https://connect.mayoclinic.org/group/blood-cancers-disorders/

– Current diagnosis is Amyloidosis and multiple myeloma https://connect.mayoclinic.org/discussion/what-a-shocker/
– Diagnosed with AL Amyloidosis. What can I expect? https://connect.mayoclinic.org/discussion/diagnosed-with-al-amyloidosis-would-like-to-hear-from-someone-about-what/

I'd like to clarify the timeline of your symptoms. Were you having falls before starting Keppra, and were prescribed Keppra in order to reduce the frequency of falls? Are the seizures a recent development related to amyloidosis?

@techi

Yes l have taken keppra, l had several diagnoses about seizure with the last one non-epileptic seizure. I was passing out and have been unconscious for seconds to as long as days unconscious the doctors don’t know the cause so l said to myself if they don’t think it’s seizures l might have well stop taking all these drugs. I had another seizure medicine and l took myself off that one also. Now maybe that’s not what you should do but that’s me so don’t do the same but l found out l am thinking clearly and not as tired. Now l was.on 8 prescribed medicines, 3 natural meds and 1 eye drop, and 1 liquid med. I feel l was a drug addict. So if l was you l would ask my doctor why you are taking it if you.dont need it. Because sometimes it will affect another part of your body. You are your own advocate and sometimes we are taking meds we don’t need. God luck

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I continue to take Gabapentin. I had the auto immune NMDAR encephalitis after a HSV encephalitis. I went through a half dozen anti seizure medicines (being allergic to Lamictal/trileptal). My pain neurologist Dr. Sandroni (Minnesota clinic) had started me on Gabapentin to help me sleep at night & for nerve pain. After having to keep changing anti seizure meds at local ER visits my mother had found out the anti seizure capabilities of Gabapentin I have just been on that successfully since 2014. Technically I am non epileptic but because of the damaged regions I have to take anti seizure medicine. Also having tested non epileptic but having frequent terrible seizures, they were diagnosed as "behavioral spells". However, this was before it was known, even at Mayo Clinic I was suffering from active autoimmune encephalitis which had been active for 7 months before trying a trial IVIG protocol, which once started was the end of those shaking/seizure spells. I always bring up the autoimmune encephalitis because it presents and is diagnosed differently.

I was put on Keppra and after about a month I had another petit mal seizure, so he upped my Keppra from 500 mg in the am/pm to 1000 mg am/pm. After 58 days I had 1 seizure on one day, then another the next, so he added Vimpat to it. So far so good. Over 80 days now seizure free. Keep in mind that Keppra can’t just be stopped. It takes a while to build up in your body to work and when changing, I was told I’d have to wean off of it for about 9 weeks while building up another med. I went through 2 pairs of glasses with changes in my vision, and it’s now stabilized… but I itch wherever there’s a crease in my body and where sweat can build up, sometimes to the point of wanting to scratch my skin off, but even that is better than having a seizure.

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