Keppra - Alone or Adjunct

[Sandee]

Pam,
Thank you for the information and kind words. Some times I feel like I want to jump out of my skin. It's been 4 months. I will keep your son in my prayers for continued sucess with the Keppra. As the epileptic I have seen how hard it is for my mom. I can only imagine what your thoughts and concerns are. I believe this is as hard on the epileptic as those around them.
Hugs,
Sandee

[BuckeyeFan]

Sandee and Pam,

Keep giving the Keppra a chance. It can cause many side effects, though I don't think many of them are long term damage to the body like dilantin can be. It does work for many people. Just remember, everyone will be different.

The one seizure you mentioned after weaning off the dilantin 'could' have been induced with the drug removal. That may explain why it was different.

CQ

Good luck with the med change. I am on 2000 mg of keppra and for the most part doing OK. I do have side effects, but I think I am handling them better than when I started. Easing into the dosage is highly reccommended.

Good Luck to all - This has been really interesting to see the people who are taking the keppra by itself. When it first came out, I was told and read that it was an adjunct only, not a stand alone med. I guess this may also depend on your seizure type.

[Sandee]

Sandee and Pam,

The one seizure you mentioned after weaning off the dilantin 'could' have been induced with the drug removal. That may explain why it was different.

I thought the Keppra might have been the difference but you bring up an interesting point. It has been amazing to see how people care about each other in these forums. Makes me want to do the happy dance!I think I was starting to go down a path of depression but y'all are helping me avoid it. Bless you all!!!

Sandee

[cool1984]

i dont take the drug but i heard a lot about it.

[gspiteri1]

I would like to know if there is anyone who having been on Keppra at what rate was it reduced whereby it became safe to go off it altogether, and how long did that take. Also are there side effects in reducing Keppra completely? No one seems to be able to tell me.

I have spoken with my neurologist on at least two occasions about the matter, and not received a proper hearing. My neurologist persists in telling me to stay on the Keppra presumably because it is one of the newer drugs and does not appreciate the impact it is having on my quality of life. The side effects of Keppra are absolutely awful and I have felt like a zombie as well as irritable, touchy and unhappy over the past three months whilst taking a reduced dosage of Dilantin (360 mg per day) plus 3000 mg of Keppra per day.

For many years my epilepsy was well stabilised taking just the Dilantin 400-500 mg per day. Dilantin is not ideal because of it's potential interaction with other drugs and medications, but it has been good for me in the main, despite some seizures very very occasionally. Dilantin blood levels have to be monitored closely and for me toxic levels of Dilantin are par for the course due to a "protein binding" problem.

I have found Neurologists have their own agenda, feed me with limited information about my condition, document everything said with a slant in favour of their own interpretation. I am not a happy chappie right now.

Hi I am hoping to go off keppra too as the side effects are terrible EG psyhcosis and auraus without seizures. I too was on Dillantin for 8 years, only taking 100mg at nightand it worked for 8 years then stress from trying to own our own home caused seizures and increase dosage was to high. I know its the keppra causing these side effects as I was reading sharons thread and she is now fine after going off the keppra. The dillantin however did make me put on weight and rot 2 of my front teeth and made my gums bleed. However I was on a very low dosage and had none of what is happening with the keppra that I have now been on for 7months. They take you off them gradually while they introduce another drug. I cannot be operated on as they say I have like a little blood vessel on the right hand side of my head but its right near where the optical vision nerve is so they said its a bit too risky andd I could lose my sight in one eye. At the moment I still have the partial seizures with the eyes. Every now and then and they won't let me drive until it stops but I am not continueing on the keppra with the side effects its having and they told me it hardly has any side effects at all. Anyway i better stop gas bagging just thought I would drop you a line as both drugs you are on r the same as me. See ya.

[super]

Hi gspiteri1

Since my earlier posting to which you refer, I have slowly reduced the Keppra from 3000 mg per day to 2000 mg per day, and have maintained a reduced dosage of Dilantin of 360mg per day.

I contacted my Neurologist by phone before reducing the Keppra who was not happy. Nevertheless, I took it upon myself to very, very slowly cut back, and closely monitor how I was feeling on a daily basis. At this point the Keppra side effects are now tolerated, and at the same time Dilantin levels no longer toxic, as they were previously on 500 mg per day. In summary, I am confident both drugs are controlling the seizures, and I now feel almost back to normal.
It is Ok for Neurologists to give advice to patients based on their training and professional reading, but too often they do not take into account patients' views. Afterall we are the ones who have to meekly live with those decisions. By the same token doctors have to cover their backsides given all the risks.

Best of luck, seek your neurologist's opinion all the same we couldn't do without them, I would not be here if it were not for modern medicine. My next step is to give EEG Neurofeedback a try.

Cheerio Super

[ashmstng]

Keep giving the Keppra a chance. It can cause many side effects, though I don't think many of them are long term damage to the body like dilantin can be. It does work for many people. Just remember, everyone will be different.

I just wanted to say I agree with what Buckeye said. I am on Keppra and have not had any side effects. Dilantin was the worse for me. I can take the lowest dose they had and be feeling over dosed. I ended up in the hospital with that pill. I really felt drugged. It wasnt good.

[nana1]

Hello i have been on keppra for years. But they up my mg about 4 months ago. So now i am taking

Keppra 1000mg twice a day
Lamictal 2000mg twice a day
Zonegran 100mg twice a day




. i was on klonopin to help sleep, but did not work, they tryed me on 0.5mg and 1 mg, it made me stay awake not sleepy. i was on a pill for dizzy but they had to get me back on that ( meclizine 25mg).Do have me on butalbial/apap for my migrains which is caused from keppra and zonegram.
They had me off all meds except seizure meds to see what was interacting.

nana

[BuckeyeFan]

The longer I am on this site, I am not sure if I am more amazed at the huge number of drug combinations being used to treat E or by the fact that nothing seems to work the same for anyone.

Earlier when I urged you to give the Keppra a chance, I sure didn't mean that it would definitely work in the long run. I just know it takes awhile to take hold and for many the side effects do diminish. This has not been the case for me. I still get the side effects. However, I have not had a tonic clonic since adding 2000 mg of Keppra to my 500-600 mg of Phenytek (dilantin).

This is my experience.

[morgan381]

I have been taking Keppra as a monotherapy for several years to control complex partials (which end up as nonconvulsive status epilepticus, to be followed by secondary tonic clonic & repeat). I started at 500x2. After each time I had a seizure, the keppra was increased; first to 1000x2, then to 1500x2, and then to 1500 am 500 noon & 1500 pm. At the last increase (which I now know is above the max recommendation) I started to have very severe "dark" thoughts and feelings. I told my doc about it and she reduced me back to 1500x2 plus 100x2 Lamictal. So far, I've not had any more seizures. (knock on wood)

My gripe is that I have been to 5 different docs and each seems to have their own med preference. I am dissatisfied with the "take 2 of these and call me in the morning" kind of medicine practiced by all the docs I've been to. I realize that it's dangerous to go off my meds without supervision, especially with the fact that I go into status epilepticus. I am curious, though, to know if anyone has tried alternative means to control their seizures with success (particularly complex partial seizures). I'm reading a book about alternative measures, but am afraid to try going off the meds...just don't understand what's up with adult onset E. How can I be fine until age 20, then develop E? (guess I'm feeling sorry for myself--I know I don't have it nearly as bad as some)

[Loudmouth]

There's a high chance that you were either having short complex partials or absence seizures for many years that weren't picked up. having gone through my medical records, that is the conclusion my first neurologist came to with me. I had documented 'periods of non-responsiveness' in my school reporsts at primary school which changed to 'completely ignorant, won't reply to teacher's even when a hand is waved in front of her face' recorded on one of my reports when I was 14. I was diagnosed When i went into non-convolsive status epilepticus at 22, only two weeks after giving birth to my third child. Rest assured, yopu are not alone. The same thing has happened with my daughter, except her absence seizures have been picked up.Keep strong, and remember that it is not to 'compare' your epilepsy with anyone else's, everyone who has it feels awful sometimes,you have as much right as the rest of us to have a good old moan if you need it!

[BuckeyeFan]

Keep strong, and remember that it is not to 'compare' your epilepsy with anyone else's, everyone who has it feels awful sometimes,you have as much right as the rest of us to have a good old moan if you need it!

[Meetz1064]

...you have as much right as the rest of us to have a good old moan if you need it!

AIN'T THAT THE TRUTH!!!!!!!!!

[maureen]

I commented on Keppra a few months back. I was taking it with Dilantin with the view to reduce my Dilantin and only take Keppra. I was taking 500mg twice daily and my Dilantin had been 300mg daily, reduced to 200mg, then 100mg. After about a week at 100mg I had a seizure. I went to see my new neurologist for the first time (the old one had moved to Alberta) and he instructed me to stay on 500mg twice daily and to stay on 200mg of Dilantin. After I got past the 6 month mark, he increased my Keppra to 1000mg twice daily. I will be on that for 3 months and then I think we'll try and reduce the Dilantin again. I don't seem to have many side effects with the Keppra. I'm hoping that if I can get off Dilantin completely, maybe my memory will improve and I won't have to see the dentist every 3 months!

[Sandee]

I have been off Dilantin since March of this year. Since then I have lost the tooth sensitivity I was having, my blood pressure returned to normal instead of high and I no longer have to take thyroid medication. I had been on Dilantin for about 35 years. I now am on Keppra and Phenobarb. This seems to be working for me. I hope all turns all well for you. You will be in my thoughts and prayers.

Sandee

[stilldancing_98]

I see my epileptologist tomorrow in Seattle. I am going to talk to him about getting off of Keppra.

[stilldancing_98]

Well, I went to my epileptologist today and he took me off of the Keppra. Slowly of course. And back on topamax I go.Then I will see him in 6 weeks. I am very happy about it.moods have been so up and down till where I crash. I have never been this type of person and I can't be with a son who has epilepsy to. He said the Keppra could be doing it.Wish me luck.

[amgo]

My Daughter is on Keppra it seems to work for awhile and then we have to increase it again. She take 250mg in the morning and 250mg in the evening with 50mg of B6 now. She gets very agitated at times over little things hoping that settles down. We're still trying to get the amount right it's frustrating.

[seizures4ever]

Oh, what the heck...I don't usually talk about my seizure meds., but here goes:

Keppra: 4000 mg
Trileptal: 1200 mg
Klonopin: 1 mg
Lorazapam: As needed for status

-Julie (My memory is slightly affected. I don't know if I mentioned it, but my memory is slightly affected. Have I told you guys that these drugs affect my memory? By the way, my memory stinks)

[stilldancing_98]

I have been on 3000 mlg daily. That is pretty normal for Keppra. But it is known for phsycosis and my moods were more like deppression. So he said that it could very well be the keppra. I would just watch my daughter on it. My opionion would be keep things really regular around the house. And see how she reacts to things that change. That could be an indicator. Or she just could be fine.Or just get her a personal journal to write her daily thoughts in.I joined a jym to help me out to.