Keppra - Will things improve?

[maddie]

Background info - I was diagnosed around the age of 13 with TLE, absences and photosensitive (those darn commodore 64's!) Was put on tegretol it made things worse (no surprise there) then switched to depakote. I struggled with depression throughout my teenage years, it was only when I switched meds when the subject of children came up that I realised that it was the depakote that was doing it. Went back to tegretol for the pregnancies and dealt with the absences/petit mal, switched back to depakote afterwards, then put my foot down and demanded a change.
I was put on to Lamictal. It worked great! no major depression, was controlling things, I wasn't too great on details like what day of the week it was, but hey, I wasn't sitting in a corner crying so that was good! Then after about 6 yrs migraines kicked in big style and the lamictal began to stop working. 2 Grand Mal's later and it's time for a med change again. The doctor suggested keppra starting at 2x500 per day. I've been through enough titrations of various meds (AED and AD's) so I told him no and that I wanted to go slower.

At the start it was weird, almost like being high! I felt good, was giggling over silly stuff. Boy did that soon disappear. As I lowered my lamictal things got worse and worse.
It's been 2 months now since I first started keppra, I've been off lamictal since New Years Eve. Epilepsy wise, things seem good, no seizures. Mentally I'm a train wreck. The anger, the spitefulness, the depression, the tiredness, everything. I'm only on 1000 per day and I'm a monster.

I started B6 vitamins (100mg twice a day) which seemed to help at first, but then my period hit and I descended into another big black hole that I can't seem to get out of. I'm waiting on a delivery of a B complex and a couple of other vitamins I'm hoping might help, but I feel genuinely awful, I hate myself and everyone around me.

Is there any hope with this drug? Will my body adjust? or is this it...? If this is it I need to change, and I'm not entirely sure what to. I'm almost tempted to suggest adding lamictal again in the hope it will lift me a little.

 

[Endless]

Hi, Maddie,

I'm so sorry you are going through a hard time. These drugs do really awful things to our brains sometimes.

I've been on both Lamictal and Keppra, have been taken off of and have gone through withdrawal from both, and am now back on the Lamictal again. I think you may have two different things going on. Everybody is different, but...

The first thing might be depression from going off the Lamictal. It's very difficult withdrawing from Lamictal. It's known as a mood elevator (most of the time), and if you withdraw too quickly it can make you depressed. Like, REALLY DEPRESSED. Very slow and gradual cutting back on the dose is best. I'm talking like 25mg less every couple of weeks, then taking several months to stop the last 50mg, in tiny little increments. Some people even take a year to get off that last 25mg because of withdrawl side effects. It all depends on how sensitive you are. The docs usually hand you a schedule to go off quicker, but that's often not a very good idea for folks. They need to tell the doc they want to go much slower. What was your dose of Lamictal?

The second thing that may be going on are side effects of the Keppra. It turned me into a screaming, green, frothy-mouthed monster, too. I just got so angry, so impatient, so mean. I turned into someone I didn't recognize. B-vitamins helped a little, but not a lot. Some people in here say it gets better over time, so hang in there. I didn't stay on it long enough to find out, so I can't give input on that. I

The important thing is to tell your neurologist how you feel. He can adjust your meds accordingly.

 

[maddie]

I was on 100mg of lamictal (2 x 25mg twice daily) from what you were saying it's possible that I did come off it too fast (25 per week pretty much).

There are 2 distinct things going on, the anger/irritability which I put down to the keppra. My mood swings incredibly, one silly comment can turn me from "I'm doing ok" to being (in my head) a screaming lunatic. Trying to bite my tongue all of the time is exhausting. I find myself saying some pretty scathing things, it's almost as if I want to hurt people (emotionally), that I want them to feel some of what's in my head >.<

Then there's the depression, it comes and goes, but when it's around it's pretty full on. A car I was in (not driving) the other day hit the brakes when another car pulled out in front. There was no "omg I'm going to die" moment, it was just like "yep, ok, that's fine". Other times I think I'm feeling fine but then just burst into tears for no reason whatsoever.

At the minute I'm putting a lot of hope in time/vitamins being able to get me through this, I'm just worried that it won't end and I've dragged myself through months of hell for nothing. I would just like 'me' back :\

It's been almost a month without lamictal now, I'm not sure whether to add a little back in (I still have quite a bit). I'm living abroad at the minute, every neurologist I've found based here has been pretty useless, the one I am seeing now only visits once every 3 months from the states. I email him but he's a little slow to respond (been 6 days since I last emailed him and still no reply).

I went to see a GP a few days ago to ask about hormones since my neuro wasn't answering (if the pill is still effective on keppra, if it could be hormones out of whack causing this insanity etc), but he just kinda got this glazed look and I knew that what I was saying was way out of his league. He gave me a new pill but I got the impression it was just to keep me happy since he couldn't answer any of my questions. I just binned it because I didn't trust him. Last thing I need is a mega dose of hormones causing even more problems.

I've decided to come off the pill for now anyway, it's just another stressor on my body that I don't need.

Blegh

 

[Endless]

If you come off the pill, do you have an alternate form of birth control? Accidental pregnancy while on Keppra could be an issue. It's worth a pause and a think, anyway.

Keppra is listed by the FDA as a "category C" drug, which means it's not a great idea to take it during pregnancy, but the benefits outweigh the risks, OR, no human trials on pregnant women have been done, so they automatically give it a "C".
http://professionals.epilepsy.com/medications/p_keppra_pregnancy.html

But it MIGHT BE risky to the fetus:
http://epilepsy.emedtv.com/keppra/keppra-and-pregnancy.html

Will your body adjust to the mood instability, anger, and depression? Maybe, maybe not. Some people in here have had the side effects fade over time. Some are on anti-depressants to help with the depression. Some go to "talk therapy" to learn techniques to handle the anger, when it happens. Some just grit their teeth and manage to live with it. Some go off the Keppra because of it.

Everyone has a different reaction to different drugs. It's difficult to say what your long term reaction will be.

On finding a doctor. Since you are overseas and not in your own country, you could try contacting a neurologist or epi at a major teaching hospital back home and ask if you can be treated via skype, with supporting blood work done by a doctor where you live. Especially since very little treatment of epilepsy is hands-on. My baby 2nd cousin was initially treated that way until my cousin could get her to a children's hospital where she could be fully diagnosed and treated.

Will you let us know how you are doing?

 

[maddie]

Pregnancy isn't an option, I think he knows I'd hit him with a brick if he came near me right now! :roflmao:

as for a doctor back home, I've been away for a very long time (from the UK) I wouldn't even know where to begin.

I guess it's just going to be a "wait and see game" which sucks. Got another week or so before those vitamins arrive so I'm just going to have to grit my teeth for now.

 

[maddie]

well a quick update

I wrote a letter to both my neuro and the local psychiatrist, same letter.

The Psychiatrist (whom I have never met) wrote me a nice letter explaining the withdrawls of lamictal and saying it was probably that, to hang in there and make an appt with him. Unfortunately the earliest I can get is feb 8th: I'll put the info here as it may be useful to others. If it's against forum policy yell and I'll delete it.

Although there have been very few studies made public regarding withdrawal from Lamictal, it has been documented that this drug has caused scores of extremely harsh withdrawal effects for many people.

The most commonly reported withdrawal symptoms associated with this drug are; irritability with rage and feelings of hostility so strong that the person fears they have lost of control of their emotions; loss of focus and confusion to the degree that their jobs are at risk and their lives are unmanageable; lethargy and exhaustion, and constant, dibilitating migrane type headaches. "Brain flashes" or feelings of being "zapped" in the brain are another difficult symptom. There have also been many accounts of having vivid nightmares, constant dizziness, anxiety, as well as racing and irrational thoughts, which include thoughts of committing suicide. Feelings of worthlessness and severe depression have also been determined as a Lamictal withdrawal symptom.

Some other physical withdrawal effects are dry eyes and the feeling that the head is "lopsided" and exceedingly heavy.

More rarely, ravenous hunger has been described as well as experiencing frightening hallucinations. The most significant and dangerous symptom is that people have had life threatening seizures when withdrawing from Lamictal.

Others demonstrate loss of short term memory while withdrawing from this drug. People have recounted episodes of getting lost in very familiar places, not knowing where they were or what they were supposed to be doing. Reports of being unable to perform their daily duties at work and home due to a feeling of being unstable on their feet, "drunk" and unable to control their bodily movements and thought processes.

Many patients mention that although they have had to withdraw from other drugs, Lamictal appears to cause a harsher withdrawal and they feel that they are "going crazy" and are "standing on the precipice of suicide" because of Lamictal withdrawal symptoms.

Although some patients have reported that their doctor did not think it was necessary to taper off the medication, when stopped abruptly, serious withdrawal effects occur. It is imperative that a person never stop taking Lamictal abruptly mainly because of the possibility of having a life threatening seizure. It is strongly recommended that the person taper off the drug very slowly over many months or even years. Each step down will likely cause sleeplessness, more irritability, crawling skin, jumpy leg muscles and all other above-mentioned withdrawal symptoms until the body becomes accustomed to the new dose. Also, interesting to note is that the final, small doses are the hardest to stop because of feelings of nausea and physical discomfort when there is absolutely no Lamictal in the system. People have remained on very low doses for many months because of these symptoms. It is important that a person be in therapy or connected with a physician that is familiar with this drug in order to decrease the discomfort of withdrawing from Lamictal.

In conclusion, if you are trying to discontinue Lamictal make sure you are connected with a knowledgeable physician or therapist and taper off of the drug very slowly. Be aware of the various withdrawal symptoms so that if they occur, you can take steps immediately to reverse those symptoms. It is also imperative that you try to get some physical exercise, eat nutritiously, and get as much rest as possible while going through the withdrawal process. This will help make your experience as controlled and as comfortable as possible

Excellent info that wold have been useful 2 months ago that describes my life pretty well and matches up perfectly with what you said endless.

The letter from my neuro was a lot less positive:

"I do not know how to handle your case as it sounds very crazy. The only way
is to switch back to lamictal due to side effects of "Keppra"."

Which sounds a lot like "bugger off you crazy cow I don't want to deal with you". Lamictal isn't an option since it doesn't work any more.

I guess I should probably head over to the padded room....

 

[redskins18]

hay bud. you got the same problems i have had. with me it has got so bd i have been taken off keppra, i feel so much better for it. personaly id rather fit and hope to find another way than to live with the sideeffects of keppra.... at the end of the day its your body your life and your wellbeing, so do what ever is right for you

 

[maddie]

redskins, were you coming off another med at the time of switching on to keppra?
How long were you on keppra?

I'm trying to guage the best plan of action now. After doing some research it seems that my lamictal dose may have simply been far too low to work properly... I was on 200mg per day monotherapy for epilepsy which had originally been fine. I started noticing problems when I had the mirena removed and then a few months later I started BCP. I've since found out that fluctutaing hormones can mess with the lamictal, making it less effective. So maybe it didn't stop working..... >.< Maybe I just needed more. Stuff you'd think a neurologist would know, right?

Oh well. At the minute I'm on 1250ish keppra, no lamictal, and no neurologist because I'm not going near him again.

 

[Nakamova]

Hi maddie --

That makes sense -- many seizures can be triggered by too much or fluctuating estrogen, and progesterone (released from the mirena) can help keep estrogen-related seizures in check. I would see if you can find a neurologist familiar with progesterone treatments for catamenial seizures. Did you have any blood tests to check levels while on the Lamictal? Those would have indicated how much Lamictal was in your system. (Note: there is no absolute ideal number for a blood serum level for Lamictal -- mine is very low, but works for me).

 

[Frink]

Hi Maddie,
200MG of lamictal per 24 hours is not quite at maintenance levels. GSK's prescribing info calls for a mono-therapy dose between 225MG and 375MG in 2 divided doses.

If the lamictal worked so well, why did your doctor not increase the dose up to maintenance levels to bring better control?

What is BCP? Birth Control Pills? If yes keep reading.

If you take an estrogen based birth control pill you have to increase your lamictal dose by around 50%.

So, if you take estrogen based birth control your new maintenance dose range would be 337.5MG - 562.5MG per day in 2 divided doses.

The neurologists answer may or may not be a kiss off, it is concise and to the point, maybe the keppra is the trigger and you would be better back on lamictal.

The psych could also be right about lamictal withdrawal, but then again you were not on a high dose of lamictal and a 4 week taper may not have been too abrupt.

 

[Nakamova]

Hi Frink --

GSK's maintenance dose is only a suggested one (I'm on 175mg/day Lamictal monotherapy with no problems) -- which is not to say that a higher dose wouldn't help Maddie out. She should definitely ask her doc about the option. The birth control she was using -- mirena -- is an IUD that releases progesterone, so it wouldn't have affected estrogen levels or affected the lamictal.

 

[redskins18]

haya. it was in conjunction with lamictal. was on minumim (250mg) of keppra for about 2 weeks. in that time i got both depression paranoya and suicidle thorts - 1st time in my life iv ever had that. since they took me off ive been much better (not perfect) but much better! every story is different so dont just go by mine! lisen to what every one seas, then spk to your doc's and go from there! but go with what you feel!!!!!

 

[Frink]

Hi Nakamova,
Yes it's true that this is only GSK's suggested dose range and some will need more and some will need less. I know for me I have to take more of my meds than most because my body metabolizes them very quickly.

I am also familiar with Mirena/ Levonorgestrel (a progestin, not progesterone, especially when it comes to seizure control), and Maddie indicated that the Mirena was removed then later she started BCP, if BCP means birth control and that birth control contains estrogen, estrogen increases the metabolism/clearance rates of lamictal and requires an increase in dose of 50%. This increased clearance would mean that the 200MG/day dose becomes reduced to about 135MG/day, well below maintenance level, well below Maddies former working level and well below your level.

My other point was, why stop taking lamictal, which was working on the seizures and depression for 6 years at 200MG/ day and switch too an unknown (Keppra) without increasing the dose of lamictal into the maintenance zone before declaring the lamictal a failure, and if the BCP contains estrogen why not try the 50% dosage increase of lamictal.

I am very curious and hope none of this comes across as rude or anything.

Update:The estrogen in BCP increases lamictal clearance by 50% and the maintainance dose must be increased up to 200%!!!!

"(1) Taking Estrogen-Containing Oral Contraceptives: For women not taking carbamazepine, phenytoin, phenobarbital, primidone, or other drugs such as rifampin that induce lamotrigine glucuronidation [see DRUG INTERACTIONS, CLINICAL PHARMACOLOGY], the maintenance dose of LAMICTAL will in most cases need to be increased, by as much as 2-fold over the recommended target maintenance dose, in order to maintain a consistent lamotrigine plasma level"

 

[maddie]

That's my point, I now think he switched my needlessly. I'd had breakthrough seizures on the lamictal but from everything I've been reading in the past 2 days this will probably have been down to the hormones making it less effective >.< Possibly the migraines were from levels bouncing around? I dunno. **edit*** clarify, yes I meant birth control pill)

I'd only seen him a few times, and I was surprised at his love for keppra, he seemed to be a real fanboy and basically thought keppra was the answer to everything.

So he made me crazy and then deemed me too crazy to deal with and basically ditched me! I've had nothing from him beyond the 2 sentences I pasted earlier. I can't believe a doctor would a) say something like that and b) just completely not care. It's like I'm too much effort.

My other worry now is if I did decide to go back to lamictal and it's wonderous migraines, what are the odds of the drug being even less effective due to stopping and starting the med? >.< Maybe I should just grit my teeth and bare down, hope that this is lamictal withdrawl and that it goes away soon. (And that the keppra works and that I'm not crazy)

 

[Frink]

Hi Maddie,
What drug you stay on is up to you, it is your body so it is your choice.
Did you have these headaches the whole time you were on lamictal or just toward the end?

If it was all the time it could have been the wonderful lamictal headache, but if it was only toward the end of taking the lamictal, then those headaches could actually be related to mild breakthrough seizure activity.

I get very bad headaches, I would not wish them on anyone.

If your birth control contains estrogen, then your 200MG dose of lamictal could have needed to be raised up to as high as 600MG/day!

The lamictal should work as well as before, very little chance of having a bad reaction to it since you did well with it for 6 years.

Sometime I think DR's just change peoples meds to make themselves feel in charge.

 

[Nakamova]

You could go back on the Lamictal and have it be effective, but ideally you would need to ramp up "low and slow" to avoid any reactions. Increasing in small doses, over a long period of time. (when I went onto Lamictal it was in such tiny increments that I had to razor my 25mg Lamictal tablet in half!)

I know what you mean about doctors "playing favorites" with certain meds. It can make you wonder if they are on the take from the drug companies, or maybe just unfamiliar with how widely varying patient reactions to meds can be.

 

[maddie]

I've had migraines all of the time, but they weren't terribly frequent, maybe one every 1-2 months, and it would last half a day to a day. The last 6-12 months they were a lot more frequent and would last for 2 days (one day of immense pain in bed, one day of dull pain + "migraine hangover") I basically spent 2 days in bed in the end. One sure fire trigger was alcohol, even a tiny amount, which was depressing since it had never bothered me up until last year! xD I only had 2 grand mal's last year *that I know of*. One I figured because I suddenly had a bruise from my waist to my shoulder that appeared out of nowhere, the other I assume because I slept for 2 days.

Maybe it was getting exasperated by the fluctuating lamictal levels in the end. I don't know. Would be nice to know the answer to all of these questions but I know it will probably never happen xD

I'm currently looking for another doctor, with the possibility of travelling to another country if necessary. I need a proper EEG done to see if the keppra is working. Every EEG I've had in the past 20 yrs has been a 2 minute job with no stimulus beyond breathing. They invariably come back "normal" surprise surprise. At the minute it's hard to tell what may be aura/seizure related and what is just me being insane atm. *IF* the keppra is working I may try and work around it (lots of vitamins/maybe an anti-depressant). If it isn't I guess it's back to the lamictal at a much higher dose and hope the headaches don't return.

Just got to find a doctor that gives a damn......

 

[epilal]

Just a quick reply. Keppra can cause suicidal thoughts and you may not be aware of them. I took the stuff for a couple of years and finally figured out why I was thinking these suicidal thoughts. The first ting on the Keppra "warnings" is 'may cause suicidal thoughts!' I'm taking Depakote and Dilantin now. So far, so good.

 

[bluechi286]

MMy experience

I was on Kepra, somewhere in my teens, and it didn't work for me. I actually had more seizures... But I hope it helps you out, maddie.

 

[epilal]

Keppra seems to be the best drug for seizures (from what I've heard) but the side effects can be bad.