Keppra problems and alternatives?

[rhiz]

Well, it's been a while since my last visit I must say. But recently I've found more pressure from my Keppra than I'm used to, and I'm finding it hard to cope.

I started on Keppra around a year ago (moved from Lamotrigine as it was not stopping my myoclonic jerks after 2 years of treatment) and within months my seizure types changed from myoclonic, to tonic clonic. I figure already this means I cannot move back to the Lamotrigine even though I was happy with the few side effects.

However recently I've been feeling so much more drained and irritated than I have before. I'm on 1000MG a day of Keppra and nothing has changed in my lifestyle at all that I could think of to cause this massive tiredness. I can sleep 20 hours in 2 days, and still return from college the following day to crash in bed for a good 5 hours. However, at a friend's house a couple of weeks back I missed one of my PM tablets and I found myself slightly brighter and more alert the next day.

I'm not sure Keppra's right for me and I don't think it ever has been. I had one full tonic clonic a month for around 5 months when I began it, until they upped me to 1000MG daily, but I'm still having the jerks occasionally, and we think I've had some seizures at night (I've woken up with bad back pains and a chewed tongue) but obviously we have no way of knowing this

I've seen a list of alternatives from my specialist in the past, the biggest contender being Epilim, but the side effects I was warned of of this on a 17 year old girl can be very worrying (severe weight gain, childbirth problems in the future etc).

Are there any drugs out there that I could seek help with from my specialist? I know it would make sense to go see him, but it takes around 8 months for me to get an appointment and last time I went, I saw a junior helper who didn't know me or my personal history in the slightest. Also it's a long drive to get there too, and as the UK driving laws state I must be 12 months seizure free before I can apply for a license my parents have to take time off work to get me to these appointments, so I want to be ready and clued for the next appointment, so I don't have to reschedule another one after thinking over it.

Thank you in advance for reading and any help you can offer

 

[stephk]

rhiz,

I am not sure about alternatives, but i did have a silly (i am sure) question for you... by any chance did your Keppra prescription go from name brand to generic? The only reason I ask is that i am personally very sensitive to Keppra, it has taken me a long time to get used to it, exaustion being the biggest side effect for me. Once i got used to it, i was switched to generic, and had some of those same side effects yet again. I can't spell the generic so i always say Keppra. Is there any chance that you can call your neuro and speak to the nurse before going into an appt? Maybe a change in dosage would help, at least to try before your appt, so that you know that wil or will not work.

Best of luck,
Steph

 

[rhiz]

rhiz,

I am not sure about alternatives, but i did have a silly (i am sure) question for you... by any chance did your Keppra prescription go from name brand to generic? The only reason I ask is that i am personally very sensitive to Keppra, it has taken me a long time to get used to it, exaustion being the biggest side effect for me. Once i got used to it, i was switched to generic, and had some of those same side effects yet again. I can't spell the generic so i always say Keppra. Is there any chance that you can call your neuro and speak to the nurse before going into an appt? Maybe a change in dosage would help, at least to try before your appt, so that you know that wil or will not work.

Best of luck,
Steph

Hey,
Being honest I really haven't got a clue about the generic question, I'm not sure if it's a bigger thing in America all I could tell you is that they're manufactured by UCB and have Keppra in yellow/red writing on the packaging But the packaging has been consistent since I got it if that's any more help. I think following your suggestion a phone call would be a good idea, I just got to make sure I catch them on the right day otherwise I'm told to ring back! Thank you for your suggestions and advice

 

[dragonlady1978]

If it's manufactured by UCB pharma then that is the name brand (not generic).

Some say that the generic can cause more side effects and not do as well at stopping seizures, and on top of that there is more than one manufacturer of the generic so you may not always get the same one when you fill your prescription. Generic formulas can vary in strength of active ingredients by 80-120% (versus constant 100 in brand), and the inactive ingredients can be totally different. Most conditions allow for the taking of generics with little or no difference in results-anticonvulsants just isn't one of them.

If the packaging has been consistent you can be fairly sure you're getting brand every time. In the future, though, it's always a good idea to keep an eye on it if for no other reason than tracking your seizures and making sure that any breakthroughs aren't possibly due to a switch in formula

Are these two the only meds you have been on? It seems from what I have read that being overly tired is a fairly common side effect of Keppra, and most other anti-convulsants as well. Sometimes that goes away once you develop a kind of tolerance to new meds, but if that were going to be the case it would be more along the lines of a month or two....not 2 years.

My son takes Keppra and it has never made him tired. He also takes Trileptal which did make him sleepy at first (or whenever we upped the dosage) but it no longer does.

Keppra does make him have some incredible mood swings of depression and anger.
If you are still having regular seizures then a review of your medication is definitely in order whether that be just the dosage or the actual med. That would be something your doctor/nurse would probably be willing to do over the phone, especially since it takes so long to get in for an appointment.

Lots of folks have positive results of lessening the side effects of Keppra by adding vitamin B6. I have also read that deficiencies in things like calcium, copper, and magnesium can make epileptics more prone to seizures, the latter also helps with absorption of B6-so a multivitamin may help as well. Perhaps when you talk to them you might inquire as to what supplements you might add to your treatment.

The more you read here on this forum you will find other things that have helped people, like dietary changes. Best of luck to you, I hope you find what you need

 

[Loopy Lou]

I'm on Keppra too (generic name Leviteracetam) 3000mg a day, and i can honestly say it's been so much better for me than Lamictal (Lamotrigene).

I've been on Keppra for a year now, and i'm guessing that they don't have a generic version here in the uk or the NHS would prescribe that first as it's cheaper. Took me months, and a letter from my neurologist when i wanted to switch to brand name Lamictal because they're very cost-conscious.

Keppra makes me very tired and dopey, but thats the only side effect i get from it really.

If you've changed from myoclonics to tonic clonics, then you really should get off the Keppra. There are many different kinds of seizure medication, and what works for one person may not work for another.

Also, did you know that you should be entitled to a free bus pass and possible dla if you're living in the UK? Both of these are extremely valuable to me since i can't drive now, and the extra money has come in handy since i had to cut down hours at work. Just something to think about...

 

[Loopy Lou]

Also, i hope that last post made sense, i'm not thinking too straight today haha x

 

[awakenharmony]

When I started having seizures again the first medication my neurologist put me on was Keppra.... besides it being SUPER SUPER expensive (over $200 a month!) I also felt REALLY lethargic, extremely moody and irritated, the best way to describe it is i felt depressed and angry at the same time... most of the time... needless to say it didn't fly well with me. haha. After the i started taking Lamotragene and haven't had any side effects really... but if it wasn't controlling you seizures i can understand needing to change meds! But... if keppra is too gnarly you should see the doc no matter how inconvienient it may be... if nothing else they do know the most about medications! haha.

 

[Lynsey Smith]

hi my name is lynsey ive just seen your message, i am also on keppra but at the momment getting took of it as iam suffering bad head paint which they think that they dont know if it is migrains or somthing to do with the keppra tablets that iam on,,, so they are giving me another medication to see how i get on with that. I personal think that you side affects are far from normal on sleeping terms etc amd you should see someone about this as its affecting your life status and therefor might start to infect your health life? Iam also on a medication called topiramate that makes people sometimes have bad mood swings etc so its effecting my day to day life i think you should deffinetly not leve this and get in though with your gp etc too see what they have to say and tell them what the tablets re doing to your sleeping pattern..

 

[tase37]

our baby was on keppra at first but it didn't keep the seizures away unfortunately

 

[Lynsey Smith]

iam getting took of my keppra as its not working for me i have 2 froms of epilepsy grandmal and absent sezuires and iam fiding it very hard iam on 750mg of keppra twice a day 75mg of topiramate iam also on diasapane for paine in my head thats getting put up too 50mg a night and 30 mg of mitrazipine as the topiramte makes people sometimes ahev bad moods swings etc x iam sorry to hear bout your little one

 

[grateful7677]

What is your diet and exercise routine? I found that Keppra was pretty good aside from the rage when I was eating right and exercising a lot. However, once I became depressed and my diet and exercise habits changed...keppra seemed to make me more angry and depressed than ever....I kind of had the same problem as you with the myclonics and now the tonic clonics....I am on keppra but now switching to Zonegran....well see how that goes....Good luck!

 

[carolyn]

Hmm... I'm wondering.. Do many people experience weight loss with Keppra? Because my weight dropped from 119 to 108 (54 to 49kg) over 3.5 weeks of taking it. I really don't want to get any thinner because I am 5.5 ft tall (168cm) and already look skinny. I don't think I am eating much less and I have definitely had much less exercise than usual over the last few weeks. I did have days with no appetite whatsoever when I started Keppra but it seems to be back to normal now.

 

[Endless]

I gained weight on Keppra. It's like my "off" button was permanently turned to "on" while on Keppra. I shopped too much, talked too much, typed too much, ate too much.... you get the idea. I just couldn't stop. I shoveled food in my mouth whether I was hungry or not. I gained a slew of weight.

Everybody is different, though. I've read that lots of folks in here lost weight on Keppra.

 

[Nakamova]

Carolyn -- There could be several causes of weight loss but the Keppra seems most suspect given the timing. AEDs definitely seem to affect weight changes in both directions. If you continue to lose weight and/or can't regain the weight you've lost, then talk to your neurologist and regular doc ASAP to figure out the next step.

 

[carolyn]

Thanks Nakamova and Endless!
The other thing is that before I started taking valproic acid my weight was around 50kg. When I started taking valproic acid I put on 4 kgs during the first year I think (probably first few months) but then the weight gain stopped and I didn't gain or lose anything for the next few years. So maybe the weight loss is more from stopping valproic acid rather than from starting Keppra?

Anyway, I will keep an eye on it and talk to my doctor if I keep losing weight like this.