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

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

Sounds like communication is

Sounds like communication is improving somewhat with your neurologist, Derrick, especially in the realm of seizure control and medication side effects, which is ultimately the goal of epilepsy treatment. I’m happy for you. I hope that your side effects go away and that you still experience full seizure control so that you can get your independence back. Even if she has to try another medication, don’t give up hope. I’m on my 10th one and it’s a combination of two and while I’ve only been on it for a short time...I think this might be the right one combination. It took twenty years to find it with the right doctor, so never give up hope. 

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I have been learning a lot

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! 

The Epilepsy Foundation just

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

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

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

Oh!  And my first surgery was

Oh!  And my first surgery was a temporal lobe resection, 2nd was SEEG with the probes implanted into my brain for 2 weeks and the last as I said was the implant of the RNS.Later again,Racer

I am sorry to hear they are

I am sorry to hear they are closing down the forums.  Thank you, for all the support you have given me, there is so much to learn when first adjusting to epilepsy, your advice has been incredibly helpful to me.  Things are getting better with my doctor, thanks for the advice on that front too.  I am starting to understand how long to wait before asking for adjustments in dosages - it is strange how the intensity of side-effects can reduce after weeks at a dosage level.  I will be talking to my doctor again in a week to review where I am at.  I am sorry you are having sleep issues - I am understanding that lack of sleep can be a seizure trigger.  I hope that gets better soon.  Thanks for sharing some of your side-effects issues with me, sometimes people without epilepsy seem to hear (or maybe I am projecting): 'So you're tired, so what.'  But its so much more than that.Thank you again Gianna!- Derrick

Racer,Jeez, what a crazy ride

Racer,Jeez, what a crazy ride you have been on!  Sorry you have had to go thru this!  I am so at the other end of the spectrum - rather than many seizures, I had one cluster, but they were general and continuous, no recovery between with complete loss of consciousness.  Will I have any more?  Will they be general?  Could that be it for me?  These are the things I think about.  Its great that you have been able to work - I still am having trouble focusing and concentrating, and I get suddenly exhausted.I share some of your experience with healthcare providers - they are not very forthcoming with info, I need to know the questions to ask so I can make sure I get the information I need.  Where did the seizure occur in the brain?  Why did it become general?  Will all future seizures be general?  Will I get any warning?  Will I lose consciousness again?  Should I have a seizure action plan?  Should I have rescue medications prescribed and with me at all times?  Many doctors seem to define their responsibility in my care fairly narrowly, which is fine, I get that one person can't do everything.  But I am still learning to ask what that they feel their area of responsibility is, so I can understand what they providing and what I need to look elsewhere for.  Good luck with your treatment program, I hope it provides you the relief and control over this condition that allows you to live a fulfilling and enjoyable life.  And thank you for sharing your experiences with me - though our conditions are very different, it's very helpful to understand the treatment alternatives that are out there, and the variations in the conditions of epilepsy.Sincerely,- Derrick

I am sorry to hear they are

I am sorry to hear they are closing down the forums.  Thank you, for all the support you have given me, there is so much to learn when first adjusting to epilepsy, your advice has been incredibly helpful to me.  Things are getting better with my doctor, thanks for the advice on that front too.  I am starting to understand how long to wait before asking for adjustments in dosages - it is strange how the intensity of side-effects can reduce after weeks at a dosage level.  I will be talking to my doctor again in a week to review where I am at.  I am sorry you are having sleep issues - I am understanding that lack of sleep can be a seizure trigger.  I hope that gets better soon.  Thanks for sharing some of your side-effects issues with me, sometimes people without epilepsy seem to hear (or maybe I am projecting): 'So you're tired, so what.'  But its so much more than that.Thank you again Gianna!- Derrick

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