Stopping Keppra XR Cold Turkey

[MuayThaiFighter]

This was suppose to be my fifth day in the EEG but the Neuro determined I was not having E. I was fine with that, as long as I could go home and getting this taken care of. I was let go yesterday and felt very bad, I assumed it was because of the Valium, which I take for anxiety and it seemed to decrease the seizures. I was told that stopping Keppra cold turkey will not be a risk, and you cannot have a seizure or a non E seizure(I don't know what to call them now) In the afternoon when I got off the compter and my fiance came back to her place I had some intense seizures. Even after taking the valium at about 3:50 I guess I didn't really come out or respond. This all felt different, I feel like I did right after a big grand mal. Im so confused. This shouldn't be happening, I would think. After being discharged the doctor said no Keppra. And then suggested a neuro psych. Either way I am going down hill and not stabilizing like I thought I would. Could this just be my body reacting badly to not having Keppra in my system and causing this? I just don't seem convinced that cutting out the Keppra right away was a good idea. Sorry this is so long.

 

[momof3boys]

When I was cold turkey'd off of Keppra XR, it took me a good day to start to feel any side effects. But then came the weird feelings.. dizzyness, my stomach felt bad,and within 36 hours of having my last dose, I started to have seizures. I was told by a nurse while I was doing the VEEG that since the Keppra I was on was Keppra XR, it would probably take alittle longer for it to leave my body compared to the regular Keppra. Since Keppra XR leaves the body slower, and does not have the "up and down" affect the Regular Keppra does have.

Did you contact the drs office to let them know of the seizures that occured? The day after I had been released from the VEEG, I had 5 of them back to back in a 30 minute time period. My husband and mother both got very concerned and called the office.

Who told you that stopping Cold Turkey on Keppra XR didnt put you at risk? Was it the dr himself?

 

[MuayThaiFighter]

I remember the second night, feeling sick to my stomach and really dizzy. But that went away real quick. Tomorrow I am calling the Epilepsy nurse, because this is not making sense. Yep, the Dr. told me directly and said that the cut off Keppra would be no issue at all.

 

[momof3boys]

To me, that doesnt seem right at all. To take a person who has been taking Keppra XR for months, and just have them quit, and not put them back on it, is wrong. I think this dr thinks he knows exacly what is going on, and wont consider anything else. But thats the exact impression I got of him myself. If anything, Id be having someone write down everything that has gone on between the time you were released, to the time you phone them. They need to know what is going on. That is just not right what is going on.

 

[jackier]

I agree w/Kristin-this just isn't right. I hope you get to feeling better (sorry-understatement) Stopping anything cold turkey doesn't sound right. In addition to writing all the facts down, I'd request your med records. Good luck MT.

 

[AngelwithDentedHalo]

If you were having the seizures before you ever started Keppra & then the Keppra controlled them and you went cold turkey & started having them, then it sounds like it's not a good idea to stop the Keppra. My Neurologist told me that stopping all at once is dangerous and he even built me up to the dose I'm on now gradually and said if it's stopped all at once, risk of seizures more than doubles. I trust his word, I'd get a second opinion

 

[MuayThaiFighter]

Yeah, after this hellish day. Pretty much blacked out at time. I am not going down this road. I remember when my seizures were way outta control. That became an everyday thing for far to long. They will be receiving a phone call for sure.

 

[jackier]

Hang in there & try not to let all this stress you out.

 

[kathya410]

I had a doctor once that told me go off my meds cold turkey so that he could get an EEG with seizures to record. The result of doing this caused me to end up in a neuro-intensive care unit with status-epilepticus (one grand mal seizure after another). Ever since I came home from that hospital stay, about 20 years ago, my short term memory is horrible. If one of my chidren refers to something we did last year, now they realize I won't remember it. Going off meds cold turkey?? My doctor and yours were both crazy.

 

[MuayThaiFighter]

They took me off my Keppra asap, but I didnt go into status, but I know the feeling. My memory has not been normal from previous uncontrolled incidents. Hopefully if it comes back, that would be awesome.

 

[momof3boys]

I did the same thing. I was taken off Keppra XR and Carbatrol ER cold turkey all at once. Took me 24 hours after my last dose of seizure medications to start having seizures.

I hope your memory gets better! Thats a horriable feeling!

 

[kathya410]

I was told once to go off 3 different meds cold turkey so that the neurologist could record some eeg seizures. Instead I ended up in neurointensive care in status epilepticus(repeated t/c seizures that didn't want to stop.) After that my short term memory is totally ruined. Obviously I have a new doctor!

 

[Gem]

So sorry to hear that. My partner is going to undergo tests soon, which involve decreasing her meds, to induce seizures, so they can test whether she is eligible for surgery to remove effected area of the brain!!! Scary stuff, but after 33 yrs of seizures, she feels she would like to try anything to get off the drugs! Hope yr new doc is more in tune with you.

 

[MuayThaiFighter]

Honestly, doctors must not take enough pharmacology. Then put people on cold turkey for everything. Then they wonder why patients go into comas, strokes, etc. etc.

 

[acpollard2010]

that's crazy man cold turkey my dr. i dont even like him and he is weening me off in a matter of 6weeks and it still sucks i can only imagine cold turkey i have only gone into status twice and both scared the crap out of everybody

 

[darsey]

my son on keppra

my 11 yr old started to seiz in july 2013 we did not put on meds he was having one to two seizers a month duration was 3-4 seconds we decided to try meds (wrong choice) we started him on Keppra low dose due to down syndrome and he has a sensitivity to drug's we started out on 250 mg then upped to 500mg one week later due to seizer he had three seizers in three weeks so they upped it agian another 250 at night talk about rage and anxiety oh my he bit a therapist turned a table over and slammed his fist on table screaming and shaking he's done this at home also on the lower dose so me and my husband decided to taper we told neuroligist she is against it say's it's not the medicine try vitamen b6 with it... since on the meds his seizer activity is more and worse he was with out for 6 months and only had one or two a month now hes having one a week? im done with this junk... we have tried other meds to no help either... anyone else? it's scary to take him off but im sure he will have less seizer's once out of his system im not a doctor but beleive me they dont have all the answers either i know this from experiance with me.. so anybody have insight with this? and how slow we should go?

 

[Dignan]

In my opinion it doesn't matter which drug you take, you should never go off any of the AEDs cold turkey. I had a doc tell me I could taper off of one of my old drugs in a few weeks, and I chose to drag it out over 3 months, going down a small amount and waiting two weeks to adjust, then going down a small amount further, waiting two weeks, and so on..

If you've taken the keppra for this long already, I don't see why extending the taper would be such a big deal in the bigger picture.

Sounds like another doc that doesn't know what he is doing to me.

 

[darsey]

Keppra

we chose not to cold turkey it my son is only on 500mg as of today have you ever heard keppra rage? well my son usaully is calm and happy not on this he aint and so far on all the drugs they have tried on him the reaction is likewise but keppra has been the worse fro rage and anxiety my son is extremely strong for down syndrome until you see him and how he has been on this drug and him off of drugs completely its like night a day. he has been totally out of control on Keppra. but yes doctors dpnt know everything they think they do but reality it's all Practicing Medicine and if you confront them on it some will agree some wont. you just gotta find the right Doctor and so do I rethinking this medicine game and the result's of being everyone's guinea pig. I wish you the best of luck