Help me I am being weaned from Carbatrol to Keppra

[Eve]

Eve
Hi Everyone! You all were such a great help before I hope you can help me out now. I take seizure med for partial seizures in my sleep.

It all started a few weeks ago when my gastironologist said the my liver bloodtests were abnormal . After doing an ultrasound and all she decided that my seizure med was causing the problem.

I have been taking Carbatrol for over 10 years. I was taking 200mg in AM and 400mg in PM. The neurologist decided to switch me over to Keppra because of my liver blood tests.

He told me to keep taking the usual dosage of Carbatrol and then add 500mg twice a day of Keppra. So I am taking 200mg of Carbatrol 3x a day and 500mg of Keppra 2x a day. Lat night I started on the Keppra 500mg and took the usual Carbatrol of 400 mg. As soon as I took it I felt wasted I could barely walk to the bed.

Well today I could hardly get out of bed.My head felt like it weighed a million pounds. I felt drunk when I got out of bed this morning. I have not been able to walk in a straight line all day and my head still feels heavy.

This afternoon one of my sons called me from College saying he needed me to sign and have notarized and fax some papers over to him. I couldn't get it together to do that. I can't even drive a car I feel like my head weighs a ton and I feel drunk. Also my head hurts because it feels so heavy.

I tried to call my DR. But it said there was a recording saying to call 911 if you have an emergency and otherwise he would be open on Monday.

Today is Saturday. I called the pharmacist and they told me to call the neurologist The pharmacist said that I need to speak with my Dr. Well today is Sat and I wont be able to get ahold of him until MOnday.

Meanwhile me head still feels very heavy. And I still feel drunk. What do I do???????

Thanks for your jhelp.

 

[Cint]

Hi Eve,

Sorry to hear you're having a horrible time with those miserable meds. If it were me, I would back off the Keppra, just take 1/2 the 500 mg 1 x a day until you can talk to your neurologist or go to the ER and talk with a neuro on call.

Feel better!

 

[Eve]

Thanks Cindy.

I just got up from a long nap. I think some of the Keppra effects have worn off.
Although my head still feels very heavy. I dont think this drug is going to work for me. I think tomorrow I will take my Carbatrol (tegretol) and then Monday morning I will call the Doc and ask for a different medicine. Now if I could ust get rrid of this heaviness feeling in my head. My weekend is already shot and all because I started on a new seizure med. 500mg 2 x a day of Kepra.

I think I will ask the doc for a different med. I have to go off the Tegretol because my liver blood enzyme test is off.:e:

 

[RobinN]

I am curious.. the doctor had you START at 1000 mg per day? If so, I am shocked! I have heard of 100mg or 200mg to begin with but.... 1000mg? YIKES - nothing like jumping into the deep end not knowing if you will sink or swim.

I too would back off. No different than if you were putting something toxic into your system.

 

[Eve]

Yes the doctor had me start at 1000mg a day. I am really annoyed with him.
And I cant even call him because he does not have an "on Call " number.

I feel like I am coming off anethesia. I just want the heaviness in my head to go away. I still dont feel sober enough to drive a car. I cannot walk in a straight line. The head pain is insane.
What was this Dr thinking????????

I am not taking any more Keppa, Monday AM I will call this doctor. This keppra messed up my whole weekend. My husband said I look and walk drunk, and when one of my kids called from College for me to fax some paperwork I couldn't even get it together to do that. My otherr son looked at me and told me that I looked like I need to join a womens club. I looked at myself in the mirro and my eyelids are droopy.

When I was in to see my DR. he mentioned something about going through a divorce. Maybe he decided he hates all women and decided to take it all out on me..

Thanks for all your help nobody seems to understand my problems .:e:

 

[Eve]

The pharmacist had asked me to call back and let her know how I was doing but she said of course she is not a dr and cannot advise me. Bust she did say I should find another neurologist to call and ask what to do, WHere am I going to find another nerologist to call on a Sat afternoon???

 

[epileric]

Try calling the hospital, maybe the neurology department.

 

[RobinN]

We do have a neurologist on our forum.

I personally would drink a lot of water. Maybe even take an Epsom Salt bath, to help draw the toxins out. I wouldn't think about the weekend that you ruined, just remember what you learned. Now you know a little bit more, and as my sig line says "Knowledge is Power". I remember one weekend Rebecca and I had been invited to the beach for the weekend. The place was literally on the sand, and she had just started a new med that week. She was lifeless, ached all over, and couldn't even lift her head. She is an athlete, and this was really not normal for her. We learned a good lesson that weekend.

Also lemon in the water, helps the liver to clear toxins from its pathways. I have been told that watermelon is good too for this. So go enjoy yourself.

 

[Eve]

The hospital was reluctant to advise me and said that I need to contact the Dr or come into the ER. I am not going to the ER and then I'll have to wait in the waiting room for an hour and it;s a half hr drive from here and someone would have to drive me and the lights are bright in the waiting room and I dont feel like being in bright lights.

Thanks I think I will try to drink LOTS of water with lemon to wash put the Keppra poison. Never again will I take Keppra, My head is still heavy and I still cant drive and the last time I took a Keppra was at 10 am 500 mg. Drinking lots of water with lemon sound harmless. Dont have any epsom salt though.

Robin sorry to hear about your experience with Rebecca. That has got to be tough. Sounds like you have been down a long road and made it through. I would go nuts if it were one of my kids.

I talked to the pharmacist and she said it would be a good idea if I had more than one neurologist.
My family DR said he doesn't want to get involved with a seizure problem,.

You guys here have helped me more than you know. Most people just have no idea..........................................................:e:

 

[Meetz1064]

Oy. I

HATE Keppra. It did such WEIRD things to me. And yes, having a heavy head was one of them.


I vote with Cindy. Since you just started it, stop it, and call the neuro first thing Monday morning, then see about getting either a 2d opinion or possibly a new neuro.

Good luck, Eve. We'll be thinking of you.....

Meetz
:rock:

 

[brainwavez]

Aaahhhhhhh bllaaaaggggghhhhh mnnmnmuuuuahhgh

I am afraid to recomend Keppra to ANYONE! That stuff made me such a jerk to everyone in my life. From cashiers to my bestfriend and serious girlfriend. One night my girl had to do everything in her power to stop me from committing suicide (NOT COOL).

It was giving me something that had been talked about extensively on this forum: Kepprage!

It is Bad News Bears! I was a jerk all day long, and then, around 6pm every day almost on the dot; it would hit the supercharge button, and I would become a TOTAL A$$ HOLE to everyone around. I didnt want to play with the kids or go out with my girl. It was bad. She stopped me and called the doctor while keeping me trapped in the master bedroom; to tell him what was going on.

She geve the Phone for a n=zzzzzzzzzzzzzzzzzzzlf ok, i will u[pdate later
I am falling aslee[p at the lAT[PTOP.

TOOD NIGHT TO YOUALL
-TONY

P.S. i WAS GOING TO PUT THE LITTLE 2 C3NTS EMOTICON THING. BUT THERE IS NOT A 1 CENT FOR THOSE OF US WHO NEVER FINISH THINGS HAHA

 

[Eve]

Well made it through the night. Just like Robin advised me to do I drank water with lemon all night to wash that Keppra out of my system. It took 2 and a half days for that heaviness in my head to go away. I felt like I had been under anesthesia . I finally feel sober and normal again, thank god and today (Sunday) is the first day I have been sober enough to drive since Friday.:clap:
Today I will stick with my old seizure med cabatrol (tegretol). And the Keppra is going into the trash............................$70 down the drain. I think that doctor stated me off with too high of a dosage 1000 mg along with the 600mg of tegretol.

I will call the Dr in the morning and give him a piece of my mind. There is one better doc in town and I called last week and they insisted he is booked till August. SO for now I will have to deal with this 2nd rate doctor, I just hope he doesn't give me more grief when I talk to him tomorrow.onder:

After reading Tony and Meetz comments I am more convinced than ever that that $70 worth of Keppra belongs in the trash. Thanks guys for understanding.:e:

 

[RobinN]

August might seem far away, but when you really think about it, it is right around the corner. Do get a second opinion... that's my opinion.

 

[epileric]

August might seem far away, but when you really think about it, it is right around the corner. Do get a second opinion... that's my opinion.

:agree: I've had neurologists with the same attitude. They want their clients to fit their preferences & keep their lives easy rather than accommodate the needs of the client.

 

[tripletdad]

Keppra

I do not like to post blanket statements here about what we all go through, especially Meds as ramping up or down or both on Meds is a delicate balance and EVERYONE reacts differently. I hope that there is not a tendency to think that one's reaction to certain meds is ubiquitous for everyone here so PLEASE be careful and consult your doctor asap, or go to the local hospital where you will get some immediate attention.

That being said, I am on 3000 mg of keppra and I started on 500mg for 2 days then 1000mg for a week and then to 1500 for a month, then to 2000mg for a month, then 2500mg for a month and then 3000mg for a month. and it was rough, very rough at first. I was out of it for a few days, "drunk" as you put it, but it eventually faded. My ramp up to 3000mg took several months and it took me about 7 to 8 months to get a handle on the drug, but I am very happy with it now. I still have problems with the drug at times, but it has kept me tonic clonic free and that it worth a lot to me.

I hope this helps and good luck.

 

[weimerluvr]

Been there...

Hi Eve,

I know what you're going through. In March, I was put on Keppra - 500 mg 2 times a day starting off - while I was still on dilantin. After the first dose, I took a 5 hour nap and by the third dose, it gave me vertigo. I was switched from dilantin to carbatrol (same dose as you) since the keppra "didn't work". I recently found and saw an epilepsy specialist and was put back on keppra. When I told him what happened the last time I was on it, he was shocked - shocked that a doc would start anyone out at 1000 mg of keppra. I've started with 250 mg of keppra in the am for a week & slowly adding half a dose every week until I get to the dosage I need - all while still on the carbatrol. I've had no problems with the change in meds so far but I have noticed that I've started to feel like the old me again.

I wish you the best of luck with this, and if you have any questions, please feel free to ask

 

[Meetz1064]

I should

clarify the WEIRD things that Keppra did to me, besides the heavy head routine: turning into the Energizer Bunny on Speed AND seeing things in triplicate WHILE they were rotating.

Sorry I didn't make myself more clear.

 

[knothing]

My nuero put me on Keppra with a schedule of:
500mg twice a day for 2 weeks
1000mg twice a day for two weeks
1500mg twice a day
He made sure I would not be at work for the second dose which when increased or just starting always knocked me on my rear for at least 1 1/2 weeks. Recently I had the evening dose upped another 750mg. Put me on my rear for two weeks and increased the deja vous kind of seizures for 3 weeks. I still have good and bad evenings. It seems to be a hard drug to adjust to but once you adjust it is not as bad.
That is not a recommendation to anyone to use or not use Keppra. I would be curious to see how those using the new once a day Keppra do with the side effects. I would say no matter how good my Nuero is that he did not prepare me for all the side effects at the beginning. It would have been nice to know the room would be spinning in the evenings!
Good luck in getting this straighted out.

 

[Eve]

Well guys I called the DR this AM. They didnt seem too upset that I was feeling like I was dizzy, drunk and incoherent for 3 days. onder:

They did ask me if I by any chance gotten the generic Keppra by mistake. I assured them I did not take the generic Keppra and that I had taken the real Keppra. onder:

Well now they prescribed me a 250 mg Keppra to take twice a day along with my 400 mg Carbatrol. So I am going to try tonight taking a 250mg of Keppra and a 200mg Carbatrol. I am scared. They told me to call back in 2 and a half days . We will see ........................................................., I am really scared to try it again.

But the last time I tred it which was on Fiday I had been started off with 1000 mg of Keppra along with 600 mg of Carbatrol. What a nightmare the weekend was my head hadn't hurt like that ever.

Koothing, sounds like you had a thoughtful Neuro just like mine. I received NO warnings about the possible effects. Not only could I not drive for 3 days but I unable to get it together to have notarized and fax over some importnt papers for my oldest son in college.

Meetz, gee I guess it didn't work for you and what are you taking now? I just hope that what I take tonight does not give me the heavy head feeling .

Weimer the way you statred off with the 250mg sounded like the way to go.

I actually like the Carbatrol and would rather stay on it, the only reason I am being switched is because the DR said my gastionologist said that my liver blood test was off and they are worried that the Carbatrol might be doing it. The DR said that Keppra is easier on the liver than the Carbatrol.

Triplet I am glad to hear that the Keppra finally worked for you. Maybe I need to be patient??? I dont know.

When I started on Carbatrol I was tired but not dizzy and drunk. Topomax didnt bother me too much just made me loose wait and make me loose a little focus..

This keppra has been the worst seizure drug I have ever started on.

Epileric and Robin if I dont work this out by Aug 11 I will go and see that other better nerologist. I think the nero I have now is playing head games with me.

I will try my 250mg of Keppra tonite with the Carbatrol and I will keep you posted. Am I scared......................you betcha. :e:

 

[Meetz1064]

Mmmm

I am on 600 mg Carbatrol 2x/day, 50 mg Lamictal 2x/day, .5 Clonazepam 2x/day & 100 mg Topamax 2x/day.

However, we'll see what the neuro says tomorrow......

For me, the Energizer Bunny reaction was starting out on 500 mg BID. URG. I stopped that cold in its tracks after 7 doses. OMG. Then the triplicate reaction was done on 250 mg once a day, in the evening after 9 days. Very WEIRD. Neuro didn't know what to think, but to shake his head.

I hope it works out well for you, Eve. I really do. I understand the being scared feeling. I am ALWAYS terrified when I start a new med........