Epilim and folate / change to lamotrigine ?

[Applethorpe]

I was put on Epilim in my teens. Some years later, I became symptom free, and I was unmedicated for 10 years. I had to go back on Epilim Chrono five years ago - which may have been triggered by my thyroid problems.

I’ve been on the thyroid forum, where it transpires that I am short on folate. A quick Google shows that this may be due to Epilim. I have never been advised to take folate supplements in all my years on Epilim. Is it usual for neurologists to recommend regular folate supplements with Epilim and to regularly check vitamin levels?

I’ve got a neuro appt in the next week or two. I’m getting rather sick of these annual PPP reviews. My neuro tried changing me to Keppra last year – however, this made me vomit and I had to change back. He also suggested Lamotrigine. I wonder if I should try switching to this?

Can Lamotrigine cause any problems with absorbing nutrients ? Are there any issues taking lamotrigine with thyroid problems or asthma, or ME/CFS ?

I have a circadian rhythm problem, meaning that I have an extended day. What about medication covering this period ? The Chrono has covered it quite well except when my day gets really long (eg 25 hours ).

Many thanks for your help.

[EpilepsyAction1 Partner Epilepsy Action]

Hi Applethorpe

I can understand you have concerns about side-effects of your epilepsy medicine. It is always important to talk to the prescribing doctor or your pharmacist about side-effects and cautions.

As we are not medically trained, we use the British National formulary and look at research websites such as PubMed for enquires such as yours.

bnf.nice.org.uk/

pubmed.ncbi.nlm.nih.gov/

People on Epilim are not routinely tested for folic acid deficiency. It is not listed as a possible side-effect. bnf.nice.org.uk/drugs/sodiu...

All women are recommended to take folic acid before and during pregnancy, to reduce the risk of having a baby with spina bifida. For women taking epilepsy medicine, especially Epilim, due to the possible side-effect to the baby they are prescribed a higher dose. This is due to the side-effects rather than the mum having a folic acid deficiency.

I have found this recent research where there is conflicting evidence about Epilim and folic acid deficiency. Folic Acid and Epilepsy - PMC (nih.gov)

We have checked lamotrigine in the BNF and there is no caution for people with thyroid problems or asthma, or ME/CFS. bnf.nice.org.uk/drugs/lamot.... But we would suggest you discuss this with your epilepsy specialist, other consultants involved in your care and you could also check with your pharmacist. They should also be able to help you with your concerns around your circadian rhythm.

If we can be of any more help, please feel free to contact us again, either by email, live chat or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday 8.30am until 5.00pm and Saturday 10.00am until 4.00pmRegards

Diane

Helpline Team

[PurpleCurls16]

Hi Applethorpe,

I currently take Epilim Chrono & do get some side-effects from it. These are tremors, dizziness, tiredness & irradiation - and maybe other ones as well!

I did take lamotrigine quite a few years ago but had to come of it due to not controlling my epilepsy & side effects! The worst side effect for me was anger!

Lamotrigine is well known to affect a person's sleep - sleep disturbances is one of it most common side effect! Hoping the information below is informative & useful!

bnf.nice.org.uk/drugs/lamot...

I think that when you have your next appointment with your neurologist you should talk about your concerns!

Good Luck!

PurpleCurls16! (Susan)

[Adlon57 in reply to PurpleCurls16]

I was on Epilim for about ten years, my hand shaking was so pronounced, they checked me for Parkinson's disease [my father had PD] pronounced negative in 2016. [a radical change in my shaking, actually thinking of taking up painting, then gross side effects of my next medication caught hold {Fycompa}] I was on lamictal at the same time, it affected my sleep, and certainly anger issues! Having had epilepsy for over fifty years, since 1970, it has got to the time, aged 67, when me ol memory is not the best!🙄

[Adlon57 in reply to PurpleCurls16]

I notice in your leaflet, no mention of "night terrors" [only when taken on its own], or rotting of the teeth are mentioned, probably long term effect [ask your dentist about that]🤫

[Applethorpe in reply to Adlon57]

hmm, night terrors / anger / teeth issues. Maybe I’m better off with the ‘ devil I know ‘ as Epilim is causing me no problems at the mo, apart from the question mark over folate.

I’m a real grinder as far as my teeth are concerned. I’ll ask my dentist.

The sleep issues and anger might not mix well with symptoms which I believe are to do with my thyroid. My dreams are already very full !

Many thanks for your help

[Applethorpe in reply to PurpleCurls16]

Thanks for replying.

Side effects are a lottery, aren’t they ?

Most of my Epilim years have caused me no issues. I became very hungry and put on weight at 500 Chrono so dropped down to 300. But then I had to increase to 500 again some time later and I was absolutely fine !

[Applethorpe in reply to PurpleCurls16]

also maybe it’s asking for trouble to switch to lamotrigine with these sleep issues being well known. My sleep pattern is already well askew !