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New onset of epilepsy
My 20 yr old daughter has always been healthy, but in 2024 she had shingles, two ovarian cists, and then had her first seizure in Dec. Since then, she has had a seizure every month. With the first few seizures she bit her tongue so very bad then with the next several seizures she chattered her teeth to the point I thought they were going to break and now she hyperventilates. The doctor diagnosed her with epilepsy and started her on 3000mg on Keppra and provided us with very minimal care. We have now gone to a second dr. who told us that she absolutely did not need to be on that high dose of Keppra and so he has lowered the dosage, but still hasn't done any tests to maybe provide some answers for the rapid onset of this condition. My daughter is trying to deal with this and is in nursing school and it's just breaking my heart to see her have to go through this. Can anyone give me some advice or a recommendation?
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Same...I had my first tonic clonic seizure at 69yrs old and I second less severe one about a year later. I have been on keppra. But now, a year later, no seizures at all and I am weening off the Keppra. Down to 125mg once a day. So, for your case, it doesn't follow that you will continue to have seizures, you may or you may not. Doctors have no clue, they can't do some kind of test and know exactly what is causing your seizures or not. All they can do is push a pill in your direction and hope for the best. Some people just keep taking the pills for years or life, seizures or not. For me, I understand that there is a poison in every pill (something positive and something negative). So for me, with no seizure in a year, I want OFF these pills. My decision, my body. Good luck to you and God Bless.
ray hippele
Like others here, most having epilepsy, I have sincere empathy for your daughter and you. I've also bitten my tongue, so I know what she's experienced. As for advice, I've been on 3000 mg Keppra for about 12 years, with no side effects. Her doctor is correct in that the 3000mg is high. I was told by my doctor that 3000mg was the max suggested by the medication company. I take Lamictal along with Keppra. Adjusting my lifestyle regarding excercise routine and with the Lamictal & Keppra each day, my seizures have been limited to 2 or 3 per year. You may want to ask whatever neuro she will use about Keppra working in combination with Lamictal. My best to you and your daughter. The world needs to formally know what we go through.
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4 ReactionsI forgot to mention. It wasn't until my current neurologist, now working with him for 16 years, was I directed to have any tests. When we first met, he demanded I have an MRI. We found the issue immediately with the 1st MRI. I suggest speaking to her doctor about an MRI. There is one test that is done in hospitals where the patient is taken off of all medication, typically resulting in the patient having a seizure. This test allows the neuro to find more detail about wherefrom the seizures originate and other factors. He/she then can make better recommendations regarding surgery. I hope this helps.
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3 ReactionsGreetings from South Africa. I am male and 75 years old when I had a seizure. At the hospital the doctor could not ID the seizure and I just want to say reading the comments here is opening new world to me. Thanks guys.
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3 ReactionsWelcome to Mayo Clinic Connect, @krokodilkos. You mentioned the doctor could not identify the seizure you had. Are you looking to go see another doctor for an opinion? Will you share more about what you remember from the seizure?
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2 Reactionscomment: You are on a huge amount of Keppra and you say seizures are limited to 2 or 3 per year. How do you know if you were on a lower dose or no dose at all if you would still only have 2 or 3 seizures per year? Answer: you don't!
The standard procedure when you have your first seizure (like myself) is to do the standard tests to RULE OUT obvious causes such as a brain tumor, bleeding on the brain, stroke etc with tests such as the MRI & EEG etc. Once those are ruled out, doctors have no clue and again will only give you a pill and hope for the best. There is a tremendous amount unknown about the causes of seizures. Maybe in a 100yrs it will be better understood. God Bless.
ray hippele
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1 ReactionI do not remember a thing.Time..early morning before wakeup. I had the shakes and no cotrol over my bladder and bit trough my tongue. Further tight upperbody. I came to my sences imn hospital. The event must havd lasted
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1 ReactionBe welcome to our group. Nice to have a member from South Africa! I believe we have no other members yet coming from South Africa; you are the first as far as I can remember. I like your username very much, it will be easy to remember you. I am from São Paulo, Brazil.
Is there anything we could lend a helpful hand with in your epilepsy journey?
Chris (@santosha)
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2 Reactions@vijena01 Good Afternoon
Be very welcome to our group!
Like @methel, I also was not sure what you meant by natural medication. CBD (Epidiolex) for example is a natural medication, but it is a prescription medication.
I was diagnosed with epilepsy in 2019 at the age of 48. The cause of my epilepsy was not found straight away. It took some time to know the cause of my epilepsy through a neurologist specialized in epilepsy (epileptologist).
What kind of doctor is treating your epilepsy?
Chris (@santosha)
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