Replacing Phenytoin with Lamotrigine

[Karen]

The following thread has been submitted by Jean -

I am about to come off Phenytoin; specifically, replacing it with Lamotrigine and I wondered whether any other members could give me some advice about their experiences?

As a background, I am currently on 450mg/daily Phenytoin AND 75mg/daily Lamotrigine which is planned to increase by 25mg every 2 weeks until I am taking 300mg/daily THEN! the plan is to reduce Phenytoin by 100mg/week, during which time I have been warned that seizures may recur. I'm already on Vitamin B and Vitamin D supplements but its hard to measure their effectiveness.

I have had five seizures since leaving hospital almost exactly a year ago, the first after 3 months(hospitalised), 2nd a week later, 3rd 6 months later (which was blamed on a then discontinued attempt to replace Phenytoin with Carbamazepine) 4th 10 days later (ended up in hospital for 3rd&4th) and 5th a month after that. To say I am scared is an understatement; I had no seizures of any kind prior to my SAH when I apparently had several in hospital although I don't remember them.

Thanks, Jean.

[Winb143]

I was put on epanutin by Doctor....I was scared stiff to come off it ...baby I am...

I was put on levetiracetam.instead of epanutin while I was in cuckooland after SAH...I was told it was kinder to body ??.......having a fit can be scarey...for us and onlookers

But I do not feel any different......if body is outta sync...then I feel rough ..ie high temp..pain etc....Low threshold of pain I guess ?

I knew the epanutin was doing my liver in (my terms)..and my pride and joy my teeth...now has a gap good job it is at side..lol

Good luck...hope you get off them okay ....

WinB143 xx

[Karen]

Hi Jean and I really feel for you and the predicament that you face.....I was scared too and I shall be honest with my reply.

I was on Phenytoin for about 10 months post SAH. I had at least 2 full blown seizures (those are the ones that I can remember or have been told about) before getting to hospital and one after the coiling operation, which was the fault of the nursing staff on the general neuro ward, as my sodium levels plummeted and hadn't been checked.

The side effects from taking Phenytoin were awful and it was decided by my GP and Consultant for me to withdraw gradually from the drug and lower the dose on a weekly basis. However, I found that the withdrawal was as bad as the side effects, plus the anxiety that I was feeling, that I may have a seizure and taking a leap into the great unknown again. It wasn't a good time at all and the fear was always present.

I spoke to my GP and we agreed to do the withdrawal even slower, reducing gradually each fortnight and reducing by a smaller amount (if my memory is serving me correctly!), rather than once a week until my confidence levels raised a little...and believe you me it was only a little and I did wonder whether I should just stay on the drug! I think that it took about 3 months to completely withdraw from it ... slow, but sure.... and it did take a long time for my confidence to be re-stored, as in nothing happening!

If you're worried about coming off of the Phenytoin too quickly, then have a word with your GP/Consultant ... I'm not sure how that works when you're replacing one type of anti seizure med with another, but never be worried about posing the question, it's your body and it's you that has to go through this and deal with the worry.

Can I ask why they're replacing the Phenytoin with Lamotrigine?

It's good that you're keeping up with the Vit B & D ... I still take both

You're just over a year on from the SAH and hopefully physically, in a better place and more healed than where you were when you had your last seizure.

I know that this will be a tough call for you ... and I am truly understanding as to how you're feeling right now. Always feel free contact to me. xx

[Louise]

I was on Sodium valporate for over a year, I had a seizure in hospital but dont remember it.

I did find it hard coming off the meds it was like withdrawals..Yes if you are at all worried speak to them they're there to help.

Probably not a lot of help hope it all goes well, take care.

[jeanhelen]

Hi Jean and I really feel for you and the predicament that you face.....I was scared too and I shall be honest with my reply.

I was on Phenytoin for about 10 months post SAH. I had at least 2 full blown seizures (those are the ones that I can remember or have been told about) before getting to hospital and one after the coiling operation, which was the fault of the nursing staff on the general neuro ward, as my sodium levels plummeted and hadn't been checked.

The side effects from taking Phenytoin were awful and it was decided by my GP and Consultant for me to withdraw gradually from the drug and lower the dose on a weekly basis. However, I found that the withdrawal was as bad as the side effects, plus the anxiety that I was feeling, that I may have a seizure and taking a leap into the great unknown again. It wasn't a good time at all and the fear was always present.

I spoke to my GP and we agreed to do the withdrawal even slower, reducing gradually each fortnight and reducing by a smaller amount (if my memory is serving me correctly!), rather than once a week until my confidence levels raised a little...and believe you me it was only a little and I did wonder whether I should just stay on the drug! I think that it took about 3 months to completely withdraw from it ... slow, but sure.... and it did take a long time for my confidence to be re-stored, as in nothing happening!

If you're worried about coming off of the Phenytoin too quickly, then have a word with your GP/Consultant ... I'm not sure how that works when you're replacing one type of anti seizure med with another, but never be worried about posing the question, it's your body and it's you that has to go through this and deal with the worry.

Can I ask why they're replacing the Phenytoin with Lamotrigine?

It's good that you're keeping up with the Vit B & D ... I still take both

You're just over a year on from the SAH and hopefully physically, in a better place and more healed than where you were when you had your last seizure.

I know that this will be a tough call for you ... and I am truly understanding as to how you're feeling right now. Always feel free contact to me. xx

They are replacing the phenytoin mostly because I am still almost constantly tired, Vitamin D levels are abysmal, my eyesight is rubbish (never needed reading glasses before and even they don't always work), and three separate neurologists have recommended it. Apparently 450mg is a very high dose; one neurologist told me I must have "one hell of a metabolism" to have had sub-optimal levels in my blood at lower doses. I hadn't realised that low sodium could cause seizures and it was significantly low one of the times I seized. My GP advises that I do still need 'something' since I have demonstrated a convulsion risk but agrees that phenytoin is a 'tough drug'. It's not clear to me if it affects appetite/weight but I lost 3 stone in six months and although my weight seems to have stabilised now I would rather l like to have my curvy bits back.

Thank you so much for the info/advice Karen, I shall certainly discuss a slower reduction in phenytoin with my GP. I know I feel more tired in the daytime with Lamotrigine added though not as badly as with carbamazepine when I was sleeping 14-16 hours every day. Most of the meds I'm on seem to have fatigue as a known side effect so any reduction in number or dosage has to be helpful. Thanks also to Louise and WinB, any input is useful to me and I promise I'll let you know how it goes, hopefully not in excruciating detail.

On a much more pleasant note, I am off to Edinburgh tomorrow with my beloved son and my gorgeous grandchildren for a few days with my siblings. Gods willing, I will have no funny turns while I'm there, if I should, I will be with people who love me and know what to do.

I am loved, you are loved, we will all get through this

[Karen]

Hi Jean,

I can totally understand your anxiety especially when you have to go out, so I hope that all goes well for you today.

Phenytoin caused me a huge amount of side effects and the long term effects aren't good either, so it's understandable as to the reason why they're replacing it with the lamotrigine. I was lucky enough to be seizure free post hospital, so that's why I was allowed to withdraw completely.

I forgot to say when I last posted, have you heard of the Mozart Effect? I listened to Mozart when I was withdrawing from the meds ...

The Mozart Effect

The possible health benefits of the music of Mozart have been assessed in the April 2001 edition of the Journal of the Royal Society of Medicine.

There has been controversy about the benefits ever since researchers claimed that listening to the K448 piano sonata improved spatial reasoning skills. Later research suggested that K448 can reduce the number of seizures in people with epilepsy.

Source and full article can be read at - http://www.epilepsy.org.uk/info/treatment/mozart-effect

[goldfish.girl]

Hi Jean, I'm not sure if my post will be helpful as the option may not be available to you or not something you would want to do. I spent a week in an epilepsy assessment clinic in March this year. It's Quarriers Epilepsy Assessment Centre in Bridge of Weir (near Glasgow) if you want to google it for more information on this type of facility. Most of the other patients were in there to be monitored as they withdrew from one medication and started a new one. I was there for testing to confirm or refute my epilepsy diagnosis. I feel very lucky that the tests showed I do not have epilepsy. The rooms all have CCTV and the beds had seizure alarms which, as far as I understand, are set off to alert staff when a patient has a seizure. If your anxiety is a major problem (understandably so) maybe this type of clinic could be an option for you if there is one near by? It wasn't an NHS clinic although my stay there was paid for by the NHS. As I said I really don't know if this info is helpful to you but it may be an option you could explore if it is of any interest to you?

Secondly, I am horrified reading about the side effects of these drugs & the difficulty of withdrawing from them. I was advised, several times, to take medication as I had 'suspected epilepsy'. I am very head strong & do not like taking medication (although I do now have to take a few other ones since SAH) so I stood my ground and refused to take them unless epilepsy was 100% confirmed. I wasn't popular with the doctors but I am very glad I didn't start on these medications - more so after reading this thread!

Good luck, I hope all goes well for you.

Michelle x

[KeithH]

Hello Jean

Think it's about time I added to this post.

Most of you are aware, that I don't usually do Pills & Postions, for one reason.

Your put on Anticonvulsant Drugs for a reason, at the time it's the most suited drug.

They will change them, until they find one best suited for you.

This could take a long time, or be sorted very quick.

You've stated that you've been on Phenytoin, and now being taken of them.

I was on them for 6 years, but had to take a much higher dosage, with regular blood test to determine the dosage.

I too was taken of them, and at the time put on Levetiracetam (Keppra), It took over 2 year to get me off the Phenytoin, as it has to be done slowly.

It was hard, massive ammount of mood swings etc, but worth it in the end.

At first I was on a very high doseage of Levetiractem, and over the past 5 years, I'm down to a controlled doseage. It's the drug best suited for me. Over the past 3 years, I've reduced the doseage, and now settled.

I was one of the first people to be givenLevetiracetam (Keppra) in East Yorkshire.

To date I've been on 12 different sorts of Anticonvulsant Drugs. (I'm 14 years Post Stroke/Post Stroke Epilpsey)

I was on 3 different tablets at the same time, it took them a year to realise, they were cancelling each other out! YES, taking them and not working. Think that was the worst I ever was. Up to 14 seizures a day--but hey ho, that was the past. Think I had my own Hospital Bed that year!

Don't be scared of asking questions. Also don't read to much into the side effects, in fact don't read them, any noticable changes, give them a couple of days, then get back to GP.

I'm more than willing to talk to you, if you want me to. Either PM or E-Mail me.

Take care

[jeanhelen]

What a wonderful piece of music, even without the brain benefits, thank you!

[jeanhelen]

Thanks for your input goldfish.girl & KeithH; I'm not sure if there is an epilepsy assessment centre near me but I can ask! At least I am not having these seizures daily and agree with Keith that reading about side effects can often be counter-productive. Yes, I would be happier to know if I am 'actually' epileptic or just reacting to the aftereffects of the SAH (not that it makes much difference) and at least I am not prone to multiple or daily convulsions. It is reassuring to know that even one person has successfully come off anti-convulsants however long it took, it means I can too. My GP is quite wonderful, and arranges frequent blood tests to check phenytoin levels, cholesterol, sodium and liver function so any drug-related issues are likely to be identified early. BTG is truly wonderful for the support it provides. Thanks all!

[jeanhelen]

sorry it's been so long since my last post; Edinburgh with my family was quite wonderful and the medication changes seem to be going OK. It seems as if I am reacting differently every time the dosage goes up; a fortnightly adventure.

I had the snappish season (means i have a store of energy somewhere to be able to react even if it isn't very pleasant for my nearest and dearest), the insomniac season, the hungry season and now a tired season but, overall, I do feel enormously better "in myself" and have been able to be more social and also to poke about usefully in the house and garden so it all looks positive

My GP has agreed to reduce the phenytoin by 50 and not 100mg a week once the Lamotrigine gets to full dose and says he will reduce that further to 25mg a week if I want to just it will take a lot longer! Means the dosage can be changed if I do have any nasty withdrawal symptoms although it has been made clear to me that there is no going back once the Pheny is stopped

Be kind to yourselves

Jean

[Louise]

Hi Jean

hope you enjoyed your visit to Edinburgh (my home town) I too had to take the longer route coming off my anti- seizure meds.

Glad your feeling better in yourself always a good sign.....

take care