First seizure.

Thank you for the info.
It’s so weird that they can’t figure out what causes the seizures. I had all the tests and nothing showed up. I have had all my records sent to Mayo for review. Since I have had 2 open heart surgeries there in Rochester, I am praying to get an appointment with a neurologist soon
Were you allowed to drive?

@hippele
Hi Ray, Good Morning
Thank you so much for sharing your experiences with us. I have been on Keppra since last December because I went into a status epilepticus, starting at 500 mg twice a day and currently being at 125 mg in the morning and 150 mg in the evening. I also face joint and muscle pains. Interesting you have shared this with us!
Last week, I was having more intense body pains and feeling very weak and tired with headaches all the time. So, my doctor has asked me to do exams for dengue (we are currently facing a new dengue epidemic here in Brazil), influenza and Covid. All came out negative. I was prescribed 500 mg Novalgina (Dipyrone, which I know is not available in the States) and my muscle and joint pains, fatigue and headaches have been relieved a lot. My doctor believes I am having a certain inflammation and recommended I see an immunologist, with whom I have an appointment this week. This inflammatory state has already happened with me while taking another AED (Vimpat) in the past, it affected my immune system.
Besides those joint and muscle pains, are you having other side-effects with Keppra such as fatigue, abdominal pains (especially after eating and/or taking Keppra), headaches and others?
Thank you and wishing you a nice day!
Chris (@santosha)

Doctors do the tests to rule out the obvious things like a brain tumor, stroke, meningitis, bleeding on the brain etc. Those are the easy things and then they treat for that. Once all those tests are negative, science at this time has no clue as to what starts or causes seizures. Like I said in an earlier post, all they do then is throw some pills at you and hope something sticks. Again, not very reassuring. And yes, I have been driving with no issues, thank God!
God Bless
ray hippele

Chris.......We know Keppra affects joint health as it is in the literature. Whether it is the Keppra or just older age for me is unknown but it seems odd that in the last year and a half since my first seizure, my joints have been giving me alot of problems is questionable. The only other side effect I had with Keppra is diarrhea or very soft stools pretty much every day.
And I always question whether a certain pill or medication actually helped or would the issue have gone away by itself.....as you were speaking about pains, fatigue and headaches. In a normal state, the body cures itself so we are never sure it was helped by the "pills"!! God Bless
ray hippele

Hi Ray, Good Evening
Thank you so much for sharing this information. In a certain study I have just read, it says the following:
"In Japan, the Pharmaceuticals and Medical Devices Agency reported cases of rhabdomyolysis between 2013 and 2015. The pharmaceutical manufacturing company recommends the discontinuation of levetiracetam if patients experience muscle pain, weakness, and elevations in serum creatine kinase (CK) and myoglobin levels. "
I will certainly discuss that more with my doctor in my next appointment with him.
All my best to you and have a nice evening.
Chris (@santosha)

Ray, Hi again
I just read that rhabdomyolysis is more common in Japanese people. Just wanted to add that.
Lovely evening!
Chris (@santosha)

Hello,
I am new to epilepsy and am scared of its rapid progression. Mone tend to start behind my left eye with twitching then progress down my face for 2-3 minutes. Had 4 in April, 9 in May, 20 in June and almost daily in July. Went to neurologist in June and have had EEG and brain scan which look normal. He just increased my Keppra dose from 1,000 to 2.500 two days ago. Too early to see if this does anything, but it does make me a bit tired and nauseous. I’m wondering if I should seek another opinion at this point. He is not sure what rype of seizure this is but I am fully vaccinated aware and have videos of many of them.

Hi @lmojackson
Welcome to our group!
I completely understand how overwhelming it can be to receive such a diagnosis later in life - it truly is life-changing. I was diagnosed with epilepsy at 48 in 2019, though I'd been having seizures for much longer before they were properly recognized.
You mentioned that your seizures felt similar to panic attacks. Would you feel comfortable sharing a bit more about what you experienced during those episodes? Did you stay conscious throughout? Were there any physical symptoms - things like muscle tension or involuntary movements?
You also mentioned that the medication prescribed last year is controlling your seizures well. It's such encouraging news, as finding the right treatment can take time. What medication have you been taking, if you don't mind sharing?
Please know that you're not alone in this journey. Here in the Epilepsy & Seizures group, you'll find people who truly understand what you're going through.
Chris

Welcome to Mayo Clinic Connect, @jafar. So that you can talk to members such as @baa @santosha @lmojackson and others, you will note I moved your post here to join this discussion:

- Seizures https://connect.mayoclinic.org/discussion/seizures/

You mentioned a possible second opinion. Are you considering an epileptologist to diagnose the exact type of seizures you've experienced? How are you doing today with side effects from the levetiracetam (Keppra) new dosage?

Hello @jafar,
Welcome to our group as well!
Getting an epilepsy diagnosis is never easy to process, especially when there's rapid progression like you're experiencing.
Your situation reminds me of my own journey - my epilepsy was misdiagnosed for decades, and all my EEGs came back normal until 2019. That's when I learned that many people with epilepsy have normal EEG results, simply because no seizure activity happens to occur during the test. Here's a helpful resource from the Epilepsy Foundation about normal EEG results:
What if my EEG was normal?
https://www.epilepsy.com/diagnosis/eeg/what-if-its-normal
I've been on Keppra since last December (after trying 5 other anti-epileptic drugs) and I've been seizure-free since then, thankfully. I experienced similar side effects initially; the fatigue and nausea you're describing are very common. It does take time for the body to adjust, and with careful dose adjustments from my doctor, those symptoms became much more manageable.
You might find this group discussion about Keppra experiences helpful:
https://connect.mayoclinic.org/discussion/does-anyone-know-if-intense-keppra-side-effects-are-normal/
Regarding your question about seeking a second opinion. I had similar thoughts when I first started treatment in 2019 because of the side effects of the medication (Lamictal at that time). Finding the right medication and dosage can take time. The key questions might be: Does your doctor treat you with compassion and understanding? Is he or she addressing your side effects proactively and offering solutions? Does he or she take time to explain things clearly and address your concerns?
The beginning of treatment can be challenging for many of us. For me, support from family and friends, and sharing experiences with others who have epilepsy were essential for moving forward.
Chris