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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

Comments

The Epilepsy Foundation just

Submitted by Patriotrehab on Thu, 2020-06-11 - 21:58
The Epilepsy Foundation just posted an announcement today that they are closing down the forums effective July 1. I hope that you are relieved of these side effects or in the alternative that a different medication will be better for you. I wanted to wish you well before they close the forums because you were one of many that I had connected with, but was still corresponding with in recent days. While I am experiencing some sleep disturbances with my new add-on medication...it’s not intolerable for me at this dosage. It’s probably too soon to know if I’m experiencing seizure control, but I’ve been dealing with this a lot longer than you...so I tend to wait things out longer now than just a few weeks before making adjustments to my medications unless the side effects are absolutely intolerable because often the side effects eventually go away after a month or two. If not, then the doctor and I are usually in agreement that it needs to change because I gave it my best and I have still been having seizures. I hope you will take my advice though, which is to remember the ultimate goal of epilepsy treatment of NO SEIZURES NO SIDE EFFECTS and communicating with your doctor about those issues first. Keep the communication going and if she doesn’t listen or if after two trials of medication or a year into this, you are still having seizures, it’s time for an epilepsy specialist.

Well I was on Keppra and at

Submitted by RacerX35 on Thu, 2020-06-11 - 22:53
Well I was on Keppra and at the same 3,000mg a day as well as 800mg a day of Lamictal and 800mg a day of Vimpat for simple and complex partial seizures to my temporal lobe.  I would have about anywhere from 8 to 19 episodes a day.  Went in for my first surgery in 2008 and the CPs stopped about 90% but I was still having SPs.I stayed at this dosage for the SPs and for what it was worth, I could actually feel the seizures coming on and was able to remove myself from a public space I may have been in or a work meeting I might be in for the few seconds that the episodes lasted.  Funny thing was that when I was referred back to my surgical doctor for observation, Went in for a VEEG and they couldn't find anything but dropped me off the KEPPRA totally and lowered my doses Lamictal and Vimpat while adding a new drug, Briviact to my menu.  Now I was at 400mg of Lamictal, 400mg of Vimpat and 200mg (which is the max dosage) of Briviact.Went to UCSF for M.E.G. and I was never told what was found but stayed at that dosage of my meds, went in for an SEEG and spent 2 weeks under observation with no info passed to me before scheduling me for my next phase and surgery.  Now I have an RNS device in my brain to go along with my meds which have not changed in dosage.  Now the RNS with it's sensitivity set shows the I am having about 322 episodes a day with me only fully aware and experiencing about 4 to 6 in a cluster a day every 1 and half to 2 weeks.So medication down but. pace maker for my brain added with minor changes.  Who knows how all this works out, but as long as we see improvements, that's the best we can hope for.  I was just in a follow up and learned about the 322 a day and am going to another follow up at the end of July.  We will seen what happens then.  Hopefully I won't have any more surgeries unless they are just replacing the battery in the RNS.  Just to go with you also, I am 46 years old.  Good luck on your travels through the meds and finding the best dosage for you and better control.And too bad this will end on July 1st.Later,Racer

Well I was on Keppra and at

Submitted by RacerX35 on Thu, 2020-06-11 - 22:55
Well I was on Keppra and at the same 3,000mg a day as well as 800mg a day of Lamictal and 800mg a day of Vimpat for simple and complex partial seizures to my temporal lobe.  I would have about anywhere from 8 to 19 episodes a day.  Went in for my first surgery in 2008 and the CPs stopped about 90% but I was still having SPs.I stayed at this dosage for the SPs and for what it was worth, I could actually feel the seizures coming on and was able to remove myself from a public space I may have been in or a work meeting I might be in for the few seconds that the episodes lasted.  Funny thing was that when I was referred back to my surgical doctor for observation, Went in for a VEEG and they couldn't find anything but dropped me off the KEPPRA totally and lowered my doses Lamictal and Vimpat while adding a new drug, Briviact to my menu.  Now I was at 400mg of Lamictal, 400mg of Vimpat and 200mg (which is the max dosage) of Briviact.Went to UCSF for M.E.G. and I was never told what was found but stayed at that dosage of my meds, went in for an SEEG and spent 2 weeks under observation with no info passed to me before scheduling me for my next phase and surgery.  Now I have an RNS device in my brain to go along with my meds which have not changed in dosage.  Now the RNS with it's sensitivity set shows the I am having about 322 episodes a day with me only fully aware and experiencing about 4 to 6 in a cluster a day every 1 and half to 2 weeks.So medication down but. pace maker for my brain added with minor changes.  Who knows how all this works out, but as long as we see improvements, that's the best we can hope for.  I was just in a follow up and learned about the 322 a day and am going to another follow up at the end of July.  We will seen what happens then.  Hopefully I won't have any more surgeries unless they are just replacing the battery in the RNS.  Just to go with you also, I am 46 years old.  Good luck on your travels through the meds and finding the best dosage for you and better control.And too bad this will end on July 1st.Later,Racer

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