Getting on top of epilepsy.

[B_S_A]

I've had seven seizures now, they've happened over a period of 10 months, and they're starting to take their toll.

It's this medication that's killing me, 2x200mg Lamotragine and 2x750mg Keppra per day (one dose in the morning, and one dose at night. I'm so tired all the time, even typing this is difficult to do, my focus is shot, which really doesn't help with exams coming up. The problem is that tiredness is difficult to attribute to anything, is it that I'm not sleeping enough? Am I about to have a seizure? Am I about to have a stroke? Urgh.

So I'm going to ask my doctor for a medication change, although I'm pretty sure that my body just needs to get used to the sheer amount of meds I'm on now, and that it went up so much in such a short amount of time.

I think some of you guys have epilepsy, so I thought it would be handy to put this up. Lemme know how you're handling things.

[Hidden]

Hi BSA,

Just seen your post as I've had difficulty getting on the site this weekend.

When I was in hospital following my accident I was told that I was having Myclonic seizures. I was put on Keppra and I am now up to 1000mg morning and then the same evening. In hospital I was put on the generic version, which very nearly stopped my seizures. When I got out of hospital they could not get the same generic version and my seizures went through the roof. I was then put on Keppra, which has improved things but I still have seizures everyday.

With Keppra I have had some horrific side effects, but they have mellowed with time. I am still really tired though, but I do not know whether that is the BI or the meds.

It is worthwhile talking to your doc as from what I have read on epilepsy subtle adjustments to your levels of meds can make a huge difference. It is a fine balancing act though between the right level of meds and seizure control. I will be tacking this after my wedding in a few weeks time.

I hope that helps. I just wanted to let you know I understand where you are coming from and hope it gets better for you soon.

It maybe as well for you, your recovery, meds and exam pressure is making you tired. Its a maze, but with your great attitude you will get there.

[B_S_A in reply to Hidden]

Sorry to hear you have them so often

We thought of that, but the current meds are wiping me out to the point where exams are starting to seem impossible, so we're hoping that this change will pick things up. With the exams, I don't have to do them now, I'd love to get them done though.

I spoke to the doctor today and we've put a plan in place where I slowly get off Lamotragine so that I'm just on Keppra. Keppra has been doing some weird things to me, but it doesn't make me as tired as higher doses of Lamotragine does. I'm hoping that when I'm just on Keppra I'll start to feel better, because this combination is fairly horrible at the moment

Congrats of getting married by the way!

[Hidden in reply to B_S_A]

Hi BSA,

Hope you are ok today?

I am glad you are getting on better with Keppra. I have read it is meant to be a better one for less side effects.

Keppra does very weird things to me too, but since I went through the patient information leaflet at least I became aware that it is Keppra doing these things!

One thing I did read, but please check as I am no doc, is that Keppra can cause you to be deficit in B vitamins. B vitamins are are a major vitamin in our bodies and link with the nervous system. This is easily solved, I just take a good daily multi vitamin or a solution like flora vital (when I remember!). It has helped me reduce some of the side effects quite well. I find this is the stuff that docs do not tell you, but make sure you check it out for yourself before taking multi vitamins to make sure it is ok for you.

When I had my accident I also sliced by scaphoid in two (bone just below thumb). This is tough to heal as it only has one blood source. So in my wisdom, I started taking Gingko to increase by blood. Oops bad mistake, seizures got much worse again, so you have to be careful.

What I also found that talking to a nearest and dearest about how the side effects affect you really helped me rationalize the weird stuff that was happening.

Keppra is reported to be a wonder drug for many. I will keep everything crossed that it is for you.

Sorry to hear about your exams, but there is always next time.

Thanks for the wedding congrats.

[B_S_A in reply to Hidden]

Thanks so much for the Vitamin B idea, it's helped loads I feel much brighter.

I'm on a lower dose of Lamotragine now, and a higher dose of Keppra, which has also made me feel better. So I'm looking forward to lowing the dose of Lamotragine further.

I hope everything with the wedding went as planned!

[Pazstan]

My boyfriend is on Keppra (Levitaracetem?), 500mg twice a day. His neurologist thinks this is such a low dose as to be virtually ineffective, so I think this will be increased despite him having no more seizures so far. I noticed he was much more tired when he first started taking it, but now seems OK, a bit worried about his tiredness increasing now. However this is thought to be a drug that is very well tolerated, and I really don't want him having any more seizures. BettyK how do you cope if you have them everyday? And good luck with your wedding.

Paula

[Hidden in reply to Pazstan]

Hi Paula,

I don't cope! I have been pretty much housebound for a year now, but the good news is after my wedding I am off to neuro rehab so hopefully they will sort it all out. I should be there now, but for the sake of a few weeks, they agreed it was ok to wait. I don't want to start messing around with my meds before our wedding. Takes a while to get used to changes. We have had a very rough ride with the NHS, but finally getting some help after twelve months, but its been a slog.

I am glad your boyfriend is tolerating Keppra well. I will keep my fingers crossed for you that the increase goes ok. I kept getting dizzy when I went up on a dose, but it passed.

BSA would it be worthwhile waiting until after your exams to sort your meds out? With our wedding we took the view that even though I am bad now, at least we know what my variables are and how to handle it. Just a thought. Good luck.

[Pazstan in reply to Hidden]

Ok, really sorry to hear things have been so hard. good luck with the rehab, and congratulations on getting married. I hope you have an amazing day!

Paula

[Hidden in reply to Pazstan]

Thanks very much Paula.

Slightly nervous about lasting the distance on the day, but as long as I make it through our vows! I am hoping its not too hot. Phew the old brain box has gone into melt down since this weather started.

Hope you are ok today.

[Kirk5w7 in reply to Hidden]

Sorry, I'm jumping in on this to post to BettyK, glad to read you're going into rehab, I'm sure it'll be a big help to you , and congratulations on the wedding, must be imminent now, I lost a few days with the changes too, don't know if the hot weather is a godsend or not, off to Turkey on 26 th, at least it's helped lead me in to the heat Take care Love Janet xx

[Hidden in reply to Kirk5w7]

Hi Janet,

Great to hear from you.

Wedding is a week on Saturday, slightly scary! Not the wedding bit, just all the people!

Turkey sounds fantastic. I hope you have a really lovely time.

Love Betty X

Sorry BSA I am off now.

[B_S_A in reply to Pazstan]

I find I'm getting on better with Keppra, I am tired, but I've just started taking it, how long do you think it took for the side effects to wear off a bit?