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Sharing my experience with the anti-seizure medication Keppra (levetiracetam)

Fri, 06/05/2020 - 15:23
I just wanted to share my experience with the anti-seizure medication Keppra. I am not a doctor and you may have a very different experience with the drug, but I wanted to share my experience incase it is helpful to anyone out there. I had brain surgery on August 15, 2019 to remove a meningioma - a tumor in the lining of the brain cavity, not the actual brain tissue. The surgery went well, I was on a steroid and anti-seizure meds for a couple of weeks after surgery, then seemed to fully recover. However, on April 16, 2020 I had multiple general (tonic-clonic) seizures. I was taken to the hospital where the general seizures continued without recovery in between, so I was sedated and intubated (put on a respirator) for the next 36 hours. I spent a total of 3 days in the hospital where I was prescribed 3000mg/day of Keppra to prevent more seizures. I stayed on this level of Keppra for a month, I didn't experience any seizures, but I had the following side-effects: Dizziness Fatigue Depression After a month, I spoke with my neurologist and we decided to reduce the dosage of Keppra from 3000mg/day to 2500mg/day. She said she has prescribed in a range from 2000mg/day to 5000mg/day of Keppra for patients. Everyone is different, the causes and locations of their seizures are different and their physiology is different - so it is generally a matter of adjusting the dosage to fit the patient, and if a level that stops the seizures while minimizing side-effects to acceptable levels can't be found, then its time to consider other medications. She said roughly 2/3 of patients have success with their first medication, but again everyone is different and its a matter of experimentation to find what works for you. The other thing she told me is (and Gianna on here on the forums also said this) - you need to give plenty of time at a dosage as the body will adjust over time, at least two weeks before you consider any further changes to a dosage. At 2500mg/day, at first I felt a lot better: much reduced dizziness (still there, but less), less fatigue and the depression was completely gone. One note about the depression - I had never experienced significant depression before - i've had my ups and downs like anyone, but I didn't realize just how seriously depressed I was until that feeling went away. That's definitely something for me to be on the lookout in the future! After 2 weeks, the fatigue and dizziness started coming back - not as intense as at 3000mg/day, but pretty close. After another week (3 weeks since the last dosage adjustment) my doctor reviewed my experience and decided that a further adjustment down to 2000mg/day was something we should try to further reduce the side-effects. She felt that the first positive reaction to to the 3000 to 2500mg/day dosage was a good sign - i am responding to changes (apparently that doesn't always happen). And she feels that, for me, 2000mg/day should still provide significant protection from seizures - of course there is no way to know that for sure, this is just based on her past experience and what we have seen so far. She reminded me this is an adjustment phase, it could easily take 3-4 months to zero in on the right dosage for me (again, Gianna said the same thing). Just as another datapoint, I am 61 years old, male, 5'6", 140 pounds. This isn't intended as a recommendation on dosage, it will very for everyone, I just wanted to share my experience. I will post how I am doing in a few weeks. thanks! - Derrick

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I have been learning a lot

Submitted by Dnedzel on Tue, 2020-06-09 - 10:28
I have been learning a lot about how to communicate how I feel, which seems weird, but its something I needed to figure out how to describe the side-effects.  It's not just dizziness, sort of disoriented feeling, almost like there's kind of a delay between when I sense something and when it registers in my brain - very strange.  I have been at 2000mg/day and so far, no change in the side-effects, but I am giving it more time.  Thanks again for your support and advice! 

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