is keppra my..nightmare?

[costis]

Hi...

it s my first time here so hello to everybody. That is my problem:
i was on tegretol 3x400=1,200mg per day, since november 2006

but 15 months ago my med told me that i should try keppra (levetiracetam), 3,000mg(1,000, then 2,000 and finally 3,000)!!! since that time my -already enough anxiety- became worse (what s for sure, its quality has changed). Panic crisis, terror, strange thoughts etc etc made 2008 my worst year (now im almost 30). So i tried to stopped it all by myself. Today, 1 week since i started taking half of my dose, 500+500+500=1,500mg, my body is more hairy!!
what's funny is that im one of the men with the less hair in the world... the seizures are not worse by the way, and im now considering what i should with my "experiment"...

does anybody have any idea what is happening to me?
u think the combination of 2 "mood stabillizers" has caused me this bad year?

PS In fact, i think that this medecine has psychiatric side-effects on me. U think i should stopped it for good after a month or so, or what?

[RobinN]

Hi Costis -
First I must say I am not a doctor. I am a mom, with some fairly strong motherly instincts.
If my child had an increase in anxiety from a medication, it would be tapered down immediately. I do no see any sense in fixing one problem to acquire other symptoms. You obviously have given it a good trial, and this drug is know for the type of symptoms you are dealing with.
Have you contacted your doctor about your decision to reduce the dose?
3000 mg seems rather high. However it sounds like you are still experiencing seizures, so I do think you should make an attempt to talk to a doctor.

Or do you have anyone that knows you and what you are going through to discuss your "experiment". It is hard for us to make any suggestions for your needs.

Also take a look at the alternatives that are suggested here.
Many find that changing the types of foods that are eaten during the day can help with seizure and anxiety control.

I neglected to say WELCOME

[brain]

Costis!

First of all - Welcome to CWE!

Secondly - I moved your thread to the
foyer so everyone can welcome you and
say HELLO!

Thirdly - I was on KEPPRA myself, and
I had bad side effects, and like you, it
put me into a state of psychosis and
I was on 3,000 mg (1500 x 2) and plus
other side effects as well. The epileptologist had
to take me off of it.

Fourthly - We are NOT MEDICAL
DOCTORS here - although we do have
some members here who are - but we
cannot provide you advisories ...

HOWEVER - I do not encourage anyone
to self-titrate themselves or self-
medicate themselves on any medication
at all! It's too dangerous and too risky.
You should be under the guidance of
your Neurologist or Epileptologist or
Medical Doctor. If you do not like the
one you have, then go and find another
Medical Doctor.

I notice you are from GREECE - I do
understand that some Countries do
not give you the opportunities to be
able to exchange Doctors as one wishes
but if this is the case, at least, TALK
WITH YOUR DOCTOR! Don't try to do
things on your own. You can possibility
endanger your own life.

[Bernard]

Hi Costis, welcome to the forum.

Vitamin B6 supplementation is widely reported to help curb the moody side effects of Keppra. Are you taking any vitamin supplements?

[costis]

no i dont... u think that this would help me? because my symptoms that hurt the most are mainly psychiatric...

in fact, i m thining of coming to USA in order to find a suitable clinic for making me better!!! u think chicago medical center would be a good option?

))

[Bernard]

Vitamin B6 has helped a lot of people taking Keppra. It's cheap enough to try.

I don't know anything about the Chicago medical center, sorry.

[BuckeyeFan]

Welcome to CWE. I hope you find the help and support you are looking for here. I agree with brain (that's kinda scary to say), please do not try to self medicate yourself. Consult your doctor.

I have seen the Chicago mentioned on some other threads. I believe MEETZ has been there. Sorry if I am mistaken.

I take 2000 mg of Keppra. Tough medication to be on, but it has worked for me. I have never heard of it having hair growth as a side effect. That is usually linked to dilantin, which I also take.

Welcome again.

[maureen]

Welcome to the forum!

I too am on Keppra, about 3 months now. I may be a bit more anxious - I don't know if it's a side effect of the drug, frustration about not being able to drive, frustration about the never ending winter here or a combination of all of the above.

Please don't take yourself off the medication without a doctors advice. Work with your doctor. They want only the best for you.

Maureen

[Elaine H]

Hi There
Keppra is pants as they say here in the UK, I have been studying epilepsy with Leeds University here in the UK for the past four years, and there seems to be a common thread of depression, suicidal thoughts, mood swings, strange thoughts, panics, terrors, nightmares running through everyone that I know has taken it. I've been on it for about the last 3 years, since my last lot of brain surgery in London, in 2000, the surgery stopped my seizures until 2005, then they came back again, I'm waiting for more surgery, and I'm on Keppra 1000mg am 1000mg pm. I've got a pretty vivid imagination anyway, but wow, some of the thoughts I have, some of the bad dreams, and I have been so low lately, I was on 1500mg x 2 a day, but I took myself down to 1000mg x 2 when I started reading all these horrible side effects that everyone on it seems to have.
You guys are lucky in the States with the driving thing, we have to wait a year seizure free before we can get our license back, my car is as you can imagine very rusty in the drive.
Would be good to hear back from you, I only just joined this site yesterday, and it's cool to get the American perspective on this so misunderstood condition, I'm writing a book about my experiences in employment, having lost the job 8 times, simply because I have temporal lobe epilepsy.

Cheers
Elaine

[maureen]

Hi Elaine,

Welcome to the group. It has really helped me to know that I'm not alone, that it is not 'all in my head'. I've been on Keppra for 3 months. I don't know if it's the Keppra, hating winter, raging hormones - I'm perimenopausal, a combination of everything or what.

I'm keeping track of my moods, health etc. I just started with a new neurologist that says my epilepsy is a bit harder because it is the result of a head injury I had when I was hit by a car when I was sixteen, not a chemical problem like those that have it from birth.

I have to be patient, not one of my greatest virtues, while we find the right cocktail of drugs for me.

Welcome again,

Maureen

[Elaine H]

Hi Maureen

I think I may have just gone through the menopause aswell, we have so much in common. I wasn't diagnosed with epilepsy until I was 23 in 1986, I'll be 45 on May 4th. I haven't had a period for over a year, my doc says it's young to be menopausal but I guess we are all different eh?
I've read some horrific things about the effects of Keppra just lately, I was on 1500mg x twice daily, and it doesn't work anyway so I took myself down to 1000mg x 2 I still feel really low, but it has been a bad few months, I lost my lovely mum two weeks before Xmas, like you, I hate the winter, and I lost yet another job at the end of February because they just couldn't deal with my epilepsy, I think that's about eight times now I've lost my job because of this damn condition.
I don't do self pity, and I've always said that if this is the only medical problem I ever have I'll be well pleased, but it would be nice if Joe Public were a little more understanding eh? I think some people in the UK think you're stark raving bonkers if you have epilepsy! I've had some pretty crazy and disrespectful things said to me over the last 22 years.
Keep in touch, what part of the states are you in? You wouldn't want to live in the UK, it seems to be constantly raining, we all run into the garden if the sun comes out!! I'm at my happiest when I'm abroad, Malta, Egypt and China are my favourite places, and we're going to New York next Spring to pick up the boat for a Carribean Cruise, acn't wait.
Keep smilin eh, and write again soon.

Cheers

Elaine

[BuckeyeFan]

Costis - I have been on Keppra for 4+ years. Yes, it can have some very nasty side effects, especially at the level you were on previously.

Without knowing the details of your situation, we can only share our experiences with you and offer our unending support. PLEASE see your neurologist before making anymore medication adjustments. The possibility of seizures at the wrong place at the wrong time can be very dangerous.

Control 1st. Deal with side effects 2nd in conjunction with your doctor. It may very well be that you eventually switch to other meds. There is a poll here that asks people how many different anti-epileptic drugs (A E D) thay have used. I was surprised by how many some people have used since I have been fairly controlled with only 2 for over 26 years.

Welcome to CWE!!!

[jkgyuro]

Well, speaking to a labratory rat (I think I've tried all anti seizure medications) when I was on Keppra I itched (Everywhere!) so this medicine seems to have a lot of side effects!!!

[maureen]

Itch? I just thought it was the winter dryness!!! Maybe not....

[busymom]

My son took keppra for about 3mos and he went psychotic to the point that he had to be hositpalized for about 2 wks. He is 15 now but at the times he was 12 and just started middle school with all of that along with epilepsy. WOW!! When the keppra started being decreased here came the seizures again. The choices were be psychotic or have seizures. I took the latter.
BusyMom

[jkgyuro]

That's what I am taking now, it seems to be the only drug that I've tried that I can take without adding another one to it.....

Side effects don't seem to be too bad............

Jil

I hope your son is o.k. now!

[BuckeyeFan]

I think that I am beginning to see a common link with teenagers having a harder time on keppra. Most people have side effects and some have serious ones leading them to other choices.

However, it seems to me from the various forums I have read that teens have an especially hard time with it. I suppose that could be linked with all the other emotional struggles any teen is going through (higher rate of suicide/suicidal thoughts than the adults). There might also be a hormone link with the onset of puberty.

[DAVE1967]

Hi...

it s my first time here so hello to everybody. That is my problem:
i was on tegretol 3x400=1,200mg per day, since november 2006

but 15 months ago my med told me that i should try keppra (levetiracetam), 3,000mg(1,000, then 2,000 and finally 3,000)!!! since that time my -already enough anxiety- became worse (what s for sure, its quality has changed). Panic crisis, terror, strange thoughts etc etc made 2008 my worst year (now im almost 30). So i tried to stopped it all by myself. Today, 1 week since i started taking half of my dose, 500+500+500=1,500mg, my body is more hairy!!
what's funny is that im one of the men with the less hair in the world... the seizures are not worse by the way, and im now considering what i should with my "experiment"...

does anybody have any idea what is happening to me?
u think the combination of 2 "mood stabillizers" has caused me this bad year?

PS In fact, i think that this medecine has psychiatric side-effects on me. U think i should stopped it for good after a month or so, or what?

I Myself am on KEPPERA & have been on it for quite a while . I see no reason why it would hurt you or be a mistake to be on. You wanna know a real mistake that hurt me , I was on TEGRETOL XR400MG & it started to effect my liver so I was taken off of it & now I take GABITRIL 16MG & 4MG . I'M much better now that i've been off of the TEGRETOLXR 400MG Hope this helps you . DAVE

[Loudmouth]

All I can suggest is that if the side effects are impacting on your quality of life,I would go back to your doctor and discuss this with him. I would not advise taking yourself off your medication without your doctors advice. PLEASE go and speak to your doctor,there are LOTS of other anti-epilepsy medications out there,one may be right for you,it's just trial and error,it can take longer to find the right anti-epileptic drug or combination of anti-epileptic drug's in some people than others. It can be hard to be patient,I know,I still have not found the right combination,but there are still a few more anti-epileptic drug'S I can try, and then some people have the option of surgery as well. The best thing is to never give up hope,and maybe to lower expectations a little,and accept that having LESS seizures may be a more realistic goal than being seizure free.

[epileric]

All I can suggest is that if the side effects are impacting on your quality of life,I would go back to your doctor and discuss this with him. I would not advise taking yourself off your medication without your doctors advice. PLEASE go and speak to your doctor,there are LOTS of other anti-epilepsy medications out there,one may be right for you,it's just trial and error,it can take longer to find the right anti-epileptic drug or combination of anti-epileptic drug's in some people than others. It can be hard to be patient,I know,I still have not found the right combination,but there are still a few more anti-epileptic drug'S I can try, and then some people have the option of surgery as well. The best thing is to never give up hope,and maybe to lower expectations a little,and accept that having LESS seizures may be a more realistic goal than being seizure free.

I agree with LM. I am on the exact same dosage of Tegretol & was put on the same dosage of Keppra. I had some pretty bad side-effects, both emotional & physical. I had to get my doctor to take me off of it since I was more functional without Keppra.

That said I got off of it but I had the doctor ween me off of it gradually.