Weaning off Keppra

daviscy60

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Had 1st seizure after starting birth control pills. After this always seemed like if I had a seizure it was a week to the day before my monthly friend visit. In early 80s asked a neuro if could have to do with it and was told no. After many years of dealing with this determined on my own that it had to and always thought that after going through life change all would stop. In 2012 thru middle of 2013 and after taking Dilantin for 30+ years started having seizures. Neuro switched me to Keppra. 1500 mg/day. Had TC seizure on 7/1/2013 during EEG. Was the last one I have had. Last week had EEG neuro said "it did not show any real seizure activity". Was given instructions on weaning off Keppra. Will be so glad to be off of it but not sure what to expect. Had really bad headache yesterday morn. Dizzy. And a lot more anexity. Just wondering if anyone has gone through this and experience they had.
 

seagull

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I trying wean down lamotrogin and yes I had some thumping head aches I know different drugs but it to same ends.
NEurolgist told me opposite said periods could definatly bring sz on or not unusual for women to sz that time of month even says in e lit it do.
When I started menopause sz was awful so went on hrt top dose when I try lower dose sz activity back so been rather retinet stop hrt
 

Dignan

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I take keppra too, but havent weaned off of it, so no help there. Just wanted to say to keep us informed as to how it is weaning off of keppra, and how you are progressing on the seizure front as well.

BTW, I live in the same general area as you, and I wondered who your neuro was and how you like him/her? If you arent comfortable sharing that info, that is of course fine too.

Good luck!
 
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daviscy60

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Neuro is dr Blue. I respect and trust her judgement greatly. Saw her several years ago prior to 1995. Had to change Drs due to work layoff and insurance change. After returning to work and trouble u had in 2013 decided she would be the one to go back to. Her and her staff are very caring and I highly trust and respect her. I'm sure I'm probably not the prime example of a perfect patient. A little hard headed. Haha
 

marika853

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During the summer of 2015 I consulted with my dr. to wean off generic Keppra. I was only on 750 mgs and thought, "What the heck!" With his approval I started going off by 250 mg increments. On Aug. 8th I had been off for 34 days when I had a seizure in a meeting. Needless to say, back on meds. Now on 1500 daily but I really don't think I need that much. I was doing fine on 750. I am going to try and get back down to that since I was doing fine with it in the first place.
Good Luck!
M
 

Cint

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Had 1st seizure after starting birth control pills. After this always seemed like if I had a seizure it was a week to the day before my monthly friend visit. In early 80s asked a neuro if could have to do with it and was told no.
So you're saying that your neurologist told you that hormones had nothing to do with seizures? Sounds to me like you needed a new dr. back then.
When my seizures started way back in the 80's, they always were during that time of month. Back then the docs didn't think they were related. But now they KNOW they're related. They're called catamenial seizures. Hormones can play a huge role in women with E.

http://www.epilepsy.com/information/women/all-women/hormones-and-epilepsy
Changes in seizure frequency in relation to the menstrual cycle is called "catamenial epilepsy."
In some women, seizures occur most frequently just before menstruation or during the first few days of menstrual bleeding. This is thought to be due to the fast drop in progesterone that occurs before menstruation. Some of these women may find that taking natural progesterone may help seizure control.
Other women have seizures most frequently in the middle of their cycle, at the time of ovulation. This may be due to the rapid increase in estrogen that stimulates ovulation at this time.
Some women have more seizures during the entire second half of their menstrual cycle, from mid-cycle to the onset of menstrual bleeding. This pattern usually is seen in women who may not ovulate and they don't have enough progesterone being produced. It's also possible that the amount of certain seizure medications in the blood stream may decrease before menstruation.

daviscy60 said:
After many years of dealing with this determined on my own that it had to and always thought that after going through life change all would stop. In 2012 thru middle of 2013 and after taking Dilantin for 30+ years started having seizures. Neuro switched me to Keppra. 1500 mg/day. Had TC seizure on 7/1/2013 during EEG. Was the last one I have had. Last week had EEG neuro said "it did not show any real seizure activity". Was given instructions on weaning off Keppra. Will be so glad to be off of it but not sure what to expect. Had really bad headache yesterday morn. Dizzy. And a lot more anexity. Just wondering if anyone has gone through this and experience they had.
Just because you've gone thru the change of life doesn't necessarily mean seizures stop. Hormonal levels change, so it's difficult to know.

Read here for more info on E and menopause:
http://www.epilepsy.com/information/women/menopause-and-epilepsy
 
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daviscy60

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Cint thanks for the info. It does confirm what I have always thought. It all just seems to be guess work and a lot of trial and error. My current neuro is the one who because I haven't had a seizure since 7/1/2013 and after EEG done on March 3rd showed no seizure activity had given me instructions to start by decreasing Keppra and if no problems should be off of it within 4 weeks. Since she is the one that writes the prescription for the med it seems like my choice is to follow what she says or find another neuro. Also if I didn't give it a try I would never know.
 

marika853

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I would just be very careful. Like I said in my story. I was off for 34 days then, Bam! Usually, I would get auras and have a warning but this one came out of the blue. Was supposed to be driving to another county to meet friends. Thank God I was not in the car! My guardian angel Was watching over me.
M
 

daviscy60

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I was surprised when I was told I could stop. But since she did say this I don't know what else to do but to try it.

Was taking 1500mg/day 500 morn 1000 night. Was told to cut back to 2/day for 2 weeks. Last few mornings I have felt awful. Guess it is because cutting back. Headaches dizzy sick stomach feeling. Hopefully will not last long. Am having to work 6 to 7 days a week.

Have a feeling that stopping this is going to be as bad as it was starting it. Just keep reminding myself I will adjust.
 

daviscy60

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I would just be very careful. Like I said in my story. I was off for 34 days then, Bam! Usually, I would get auras and have a warning but this one came out of the blue. Was supposed to be driving to another county to meet friends. Thank God I was not in the car! My guardian angel Was watching over me.

M

marika853 Was just curious... How long did it take you from starting to cut back to actually being off keppra. The schedule I was given will be 4 weeks.
 

marika853

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I was cutting down by 250 mgs. for 2 weeks. 500 -2 weeks, 250 - 2 weeks, then nothing.
During the time I was cutting down I was with family on vacation and was not driving. Thought it would be safer that way. Was too busy to notice any real changes. Then got back to US and 34 days later!!!!
I don't really know why I thought I could get away with it. There is no cure! Now I have to accept the fact that I have to be on meds. Luckily, generic Keppra has always controlled me well.
I Do have to count my blessings.
M
 

daviscy60

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Thanks marika853 for the info. My decrease seems to be the same but in 500 mg increments. I've been on something since I was 19. I am now 55. Lots of stress now on stopping. Not sure if it is side affect or just nervous over it all. 12/2012 in a store had TC. Then at work twice April and May of 2013. Went out thru medical. Lost a job in 2011 and can't loose another because of this. Haven't had any issues since on Keppra but just don't know if it is because of Meds or has what ever caused it gone away. Wish at times I knew for sure what triggered it or caused it. Was always just told they didn't know.

Before was alway told by Dr a seizure disorder. Wasn't until I went out thru medical at wrk that the company Dr wrote Epilepsy on the medical report. So now that she says nothing showed on EEG and to stop Med. this I guess means no E ???
 

marika853

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I was told that if you have had more than 2 seizures than it is Epilepsy. Mine was caused by menopause, stress, lack of sleep. I know this for a fact. I know my body and the drs. can just guess for everyone. There are many similarities to this condition but Every one is slightly different. Only the person can tell. I know my triggers and "try" to avoid them. Sometimes I'm successful, other times not. I think the key is in trying to not dwell on it.
Luckily, I stay very busy with my family, working part time and taking care of disabled relative.
Good Luck! Hang in there!
M
 

Nakamova

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So now that she says nothing showed on EEG and to stop Med.
But the medication was most likely suppressing an any abnormal brainwaves! That's it's job after all! When I was trying a medication taper, I had EEGs done at several points along the way. I started with a negative EEG while on the full therapeutic dose. As the dosage dropped, abnormal brainwaves started to appear on the tests. And eventually once I was off the medication altogether I did have a seizure and went back on.
 

TravisMN

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You can cut Keppra pretty quick. It has a short half-life I want to say 6-8 hours, and normalizes within 24 hours.
I was cut 2000 MG last year (from 4000/day to 2000/day) and this year was cut to 1000/day of it. How a patient reacts to drug reductions does play a factor here a little bit. I **chose** to taper down this year over a 3 day period rather than all at once as I could have. It had been 4 years since I had a seizure (since my surgery) and didn't want to risk anything.

Keep taking notes as you already are to report anything to the doctor. Best of luck!

--Travis
 

seagull

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I on Lamotrigine I cut down from 5mg a day 300 not a clue if going about it properly take 250mg and 100at night cut down 4months so far so good had few dicky times but on the whole ok
 

marika853

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Just be careful. It hit me on the 34th day. Very scary because previously would get an aura but this time nothing.
Good Luck!
M
 

Dignan

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One full week off meds. So far everything going great [emoji4]
Any post-medication effects or weird feelings? When I came off Dilantin years ago, I felt swimmy for months. Curious about coming off of Keppra..
 

daviscy60

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When I first started cutting back had head aches a little dizzy and a lot of anxiety. This week feels much better.
 
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