Weaning off keppra protocol?

Posted by shheppner @shheppner, Sep 22, 2023

I had one seizure in my sleep 9 months ago. Mmr, Ct scan, eeg (2) were all normal. I underwent sleep study tests and it was determined that I have sleep apnea. After discussing this with a couple medical doctors the thought is I probably stopped breathing for too long and had a seizure. I was put on keppra 500 mg 2x a day (500 morning 500 at night) my family noticed very odd behavior from me for months after the meds (notable side affects) , so I was decreased to 500 mg at night.

I faithfully use my cpap machine and have had no other seizures.

I want very much to be done with this drug altogether. Weaning protocol?
500 mg every other day? or 250 mg each night for a week? (2 weeks)
I’ve been told slower is better. What just want OFF of it.

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Profile picture for Leonard @jakedduck1

@ysv12345
Just curious if you're having any withdrawal effects.
I would taper slower than you are. But if your not having any issues I’d continue as you are. Of course we all seem affected differently by these drugs.
I’d recommend lowering your taper the lower your dose gets.
Best of luck to you.
Jake

Jump to this post

I have been taking 500mg daily for about 20 days; I noticed that I felt dizzy for last two days. I do not know if this is a side effect or not?

REPLY
Profile picture for Leonard @jakedduck1

@ysv12345
Possibly a withdrawal effect from tapering too quickly.
Dizziness can be a side effect of Keppra, but you should've noticed that before you started tapering.
Are you taking Keppra for seizures or something else?
Take care,
Jake

Jump to this post

Yes, i am taking keppra for seizure

REPLY
Profile picture for ysv12345 @ysv12345

I reduced the Keppra medicine from 750 to 500mg and I felt dizziness. Is that a side effect

Jump to this post

I think Keppra has to many side effects. That being said it works for others. Make sure it is titrated according to your physician. Hope that helps.

REPLY

After 50 years on the meds, I'm better now and decided to ween off the meds. VERY slowly. I've been tapering down for 2 years! Am down from 1800 mgs of epilepsy meds daily, to 60 mg (6ml) per day. Have never felt better. The Keppra held on tight and wouldn't let me off of my 500s. Even after I cut them in half to 250. Dogs and cats can get 100 mgs at Chewey for $1 per. I'm not looking for the highest pet prices I can find. Doc finally prescribed me 100mg liquid form at a very reasonable (human) price. After I got used to the extra work I love it. Now I can ween all the way down. Next week I'll go down to 50mg(5ml), etc. The thing with me was that I don't need the meds anymore. That's why I've worked so hard to ween off them.

REPLY
Profile picture for r0bert @r0bert

After 50 years on the meds, I'm better now and decided to ween off the meds. VERY slowly. I've been tapering down for 2 years! Am down from 1800 mgs of epilepsy meds daily, to 60 mg (6ml) per day. Have never felt better. The Keppra held on tight and wouldn't let me off of my 500s. Even after I cut them in half to 250. Dogs and cats can get 100 mgs at Chewey for $1 per. I'm not looking for the highest pet prices I can find. Doc finally prescribed me 100mg liquid form at a very reasonable (human) price. After I got used to the extra work I love it. Now I can ween all the way down. Next week I'll go down to 50mg(5ml), etc. The thing with me was that I don't need the meds anymore. That's why I've worked so hard to ween off them.

Jump to this post

Hi, @r0bert and welcome to Mayo Clinic Connect. That is a very long time to have been on your meds! Good to hear you've never felt better.

You mentioned weaning off over 2 years. Sounds like perhaps your doctor gave you this protocol for weaning? You mentioned levetiracetam (Keppra) held on tight and wouldn't let you off of your 500s. What happened when you tried to do this?

REPLY

Remember all.....Keppra is meant to work over a 12hr period so if you are only taking 1 pill at night, you are only protected during the evening. Awhile back, I forgot to take one of my Keppra pills and I had a seizure that night. That was awhile back and currently I have weened off the Keppra gradually and I have been seizure free for almost 3 months now. Keeping my fingers crossed.
God Bless....
ray hippele

REPLY

I've been on Keppra for years at the highest dose I'm told is allowed; e.g. 3000 mgs per day. The dosage has helped me dramitically. I have no other side effects. I do have issues with sleeping and I wonder if the Keppra contributes to that. Any comments would be appreciated.

REPLY

Hello @royanthony
I'm very sorry to hear you're having sleep troubles with Keppra. I've experienced similar issues with other AEDs (though not Keppra specifically), and I know how exhausting and frustrating this can be. Sleep disturbances and insomnia are, unfortunately, quite common side effects of many AEDs.
As my doctor always reminds me, every person's body responds differently to medications, so what works well for one person might cause problems for another. I checked the Mayo Clinic information on Keppra, and sleep issues are indeed listed among the potential side effects: https://www.mayoclinic.org/drugs-supplements/levetiracetam-oral-route/description/drg-20068010
I remember you mentioning some time ago that you were taking Zolpidem to help with sleep. Has that stopped being effective, or have things changed with your sleep routine?
Chris

REPLY
Please sign in or register to post a reply.